Home care for late stage dementia, Part 6: Tube feeding and related decisions

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

Last time, we discussed eating and swallowing problems at length. In this concluding part of the interview series, we discuss tube feeding and related decisions and their consequences.

Questions/ Comments by Dementia Care Notes: Last time, we discussed that tube-feeding is an option for persons having setbacks in their ability to eat and needing temporary corrective action, as well as for persons who cannot swallow because of advanced dementia. In order to decide on tube-feeding, families need to understand the two types of tube-feeding are — Ryles (nasogastric) tube and PEG (Percutaneous endoscopic gastrostomy) tube—and their pros and cons.

Could you give us a simple explanation of a Ryles tube?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): A Ryles tube is a nasogastric tube. It goes through the nostril into the stomach. One end of the tube is outside the nostril, and the other end is in the stomach. The tube is secured by tape on the nostril so that a sufficient length of the tube remains outside. A cap is used to close the outside end. Food is given through this tube by removing the cap and inserting a syringe with liquid food, which flows into the stomach using gravity.

A Ryles tube can be inserted at home by a doctor or a nurse.

A Ryles tube can be inserted at home by a doctor or a nurse. It is a simple procedure that nurses are trained to do it, but you can tell the agency to send a nurse who has training and practice for this.

The important thing is that the family must learn how to feed through the tube.

DCN: How long can a Ryles tube be used?

Dr. Hegde: You need to change the tube regularly, maybe every two or three weeks. Your doctor will suggest what is suitable. A nurse can do this change at home.

You also have to use a new tube if the tube gets pulled out. You can’t re-insert a tube that has been pulled out.

With proper replacement and care, Ryles tube feeds can be continued for a long time. I’ve had persons on Ryles tube for one to two years.

DCN: How do we feed the person using a Ryles tube?

Dr. Hegde: Only liquid food can be given using a Ryles tube. The food consistency should be such that it can flow down the thin Ryles tube by gravity. That means you have to blend the food, sieve it, and dilute it. Otherwise the tube will get clogged. About frequency: your doctor will advise you on this, but usually you have to give food every two hours, around 150 to 200 ml.

You have to be trained on the feeding procedure. You have to practice it in the presence of the nurse till you can do it properly.

For example, before every feed, you have to check that the previous meal has been digested. You check the stomach contents by pulling out a bit using the syringe. It is called aspiration, and you need to learn it from the nurse. If the last meal has not been digested, you need to wait before feeding. Also, before the feed, you have to check the tube has not been displaced. Sometimes if the person coughs, the tube comes out of the stomach and coils inside the throat.

The person has to be upright for the feed, and remain upright for some time after the feed, at least fifteen to twenty minutes. Otherwise the person may regurgitate and swallow their vomit.

The procedure for the actual feeding involves many things, like when to kink the tube, when to straighten it, how to put food in the syringe, how to ensure air does not go in, and so on

The procedure for the actual feeding involves many things, like when to kink the tube, when to straighten it, how to put food in the syringe, how to ensure air does not go in, and so on. Make sure anyone who feeds the person can do it properly.

DCN: Can you share some examples of food given using a Ryles tube?

Dr. Hegde: Use a mix of foods to get a balanced meal—like ragi milk, mixed vegetable soup, spinach juice, Ensure, fruit juice, Protinex, daal ka paani, things like that. Be careful about the consistency. The nutritional value of the food is actually very low because it is mainly water.

DCN: The other type of tube-feeding is the PEG (Percutaneous endoscopic gastrostomy) tube, where food is put directly into the stomach. How is a PEG tube inserted?

Dr. Hegde: A PEG tube involves creating a small hole into the stomach. Insertion is done in a hospital. It is a simple day procedure where an endoscopy is used to guide the procedure, a hole is made at the correct place, a tube inserted, and stitching done around the hole.

Families need to know about “tube care” for PEG tubes—the regular cleaning of the area around the hole they must do so that the area does not infected.

Families need to know about “tube care” for PEG tubes—the regular cleaning of the area around the hole they must do so that the area does not infected.

If the person fiddles with the PEG tube, it can be strapped into position so that the person doesn’t reach it. A folded dupatta or some other cloth can be used.

DCN: How often do PEG tubes have to be replaced? Also, suppose the person pulls out a PEG tube?

Dr. Hegde: Under normal situations, if well cared for, PEG tubes can stay in place for really long. They only need to be replaced if they look dirty or there is a break or any other concern at the opening. The person has to be taken to the hospital for this.

PEG tubes can also be pulled out by the person. Of course, a pulled-out PEG tube cannot be reinserted, so you have to go to the hospital to get the person checked up and also get a fresh PEG tube inserted. If the person is repeatedly pulling out the PEG tube and none of the measures to secure it have been successful, you may need to reconsider the tube feeding decision itself, or at least see if you want to switch to Ryles tube.

DCN: Any other tips to keep in mind when using tube feeding?

Dr. Hegde: Since there is no food intake through the mouth in most cases of tube feeding, you therefore have to make sure the mouth remains moist. Use moist cotton or a sponge for this, maybe before and after meals.

Also, remain alert about the output—there should be enough urine, and the person should not get constipated.

DCN: When is a Ryles tube used, and when is a PEG tube used?

Dr. Hegde: Ryles tube insertion is much easier and can be done at home. A Ryles tube is the choice for temporary feeding situations. For example, when someone needs tube feeding due to an illness affecting their nutrition, or when you are trying to maintain the person’s nutrition while waiting for medication to take effect. A Ryles tube is usually the first option even for genuine swallowing problems when you still trying to see whether you need it long term.

PEG tubes are considered when you believe that the person will not be able to start swallowing again and need a long-term solution.

One plus point of PEG tubes is that giving food is easier. A Ryles tube is thin and needs thin consistency food, so food is considerably diluted. A feed takes more time. The PEG tube is wider and food given using PEG doesn’t have to be as thin as that we give using Ryles tube. Feeding takes less time. Another thing is that a PEG tube can be concealed and may be more aesthetically pleasing.

Maintaining the tube can be a problem in the case of PEG, not just because of the care required to avoid infection, but also because tube replacements and pulled-out tubes require hospital visits.

Maintaining the tube can be a problem in the case of PEG, not just because of the care required to avoid infection, but also because tube replacements and pulled-out tubes require hospital visits.

DCN: Many families rush into the tube feeding decision if their loved one starts eating less. But once a family starts tube feeding, they find it difficult to stop it even if they feel such feeding is prolonging a situation and is uncomfortable for the person.

Dr. Hegde: The decision to opt for tube feeding should not be taken in a hurry. It is better that you first try all the other things, like feeding in smaller quantities, feed whenever they want, and all that.

Counselling is a must before choosing tube-feeding.

Talk to a family that has gone through this process and understands the consequences of putting in a tube.

Insist that your doctor tells you the pros and cons of various tube-feeding options. If possible, also speak to somebody who is not a doctor. Talk to a family that has gone through this process and understands the consequences of putting in a tube. Talk to a social worker who understands the situation. This information-gathering is important because, as you said, once you put the PEG or Ryles tube, not many people have the heart to say, let’s remove it.

DCN: Suppose a person with dementia had earlier told the family that she would not like to be tube-fed. Suppose the family wants to respect this wish when the person develops swallowing problems. That means that they will not be able to get enough food into the person. The end will come. What can you suggest for families facing such a scenario?

Dr. Hegde: Families may decide against tube-feeding for many reasons. Maybe the person had clearly spoken against tube-feeding when she was cognitively alert. Or maybe you have seen research that says tube-feeding does not improve the quality of life in end-stage dementia. Maybe you feel the person has suffered enough and such feeding is pointless extension of life.

A conversation with the doctor is very important in such a situation. Talk to a doctor who knows the person with dementia and knows you. If the doctor seems uncomfortable or doesn’t seem trained to talk about tube-feeding decisions, look for a doctor who is familiar with palliative care. Discuss with other family members.

Opting against tube-feeding is a difficult decision. Sometimes one family member is ready for a no-tube decision, but others are not. Sometimes family members have conflict and blame around the decision. That makes the decision difficult. But it can also be difficult if everyone leaves the decision to one person.

Sometimes when one parent is looking after the other parent, the children just tell the parent, it’s your decision. I tell them, please don’t just tell your Ma that it’s her call. It may be her decision, but it is also your responsibility to be there for her in that decision. Make sure you also say that Ma, whatever you decide, we are with you.

What usually happens is, when there is disagreement or when family members leave the decision to one family member, that family member just opts for tube feeding. They feel it is a safer decision, one without the chance of guilt or the chance of accusations later.

For someone who has to decide not to proceed with tube-feeding, I’d say, try not to make it just your decision. Try to have someone who will hold your hand, who can remind you that the person has suffered enough and can be allowed to move on. The presence and support of someone else matters. It could be a nurse, a social worker, a friend, anyone. Because when you are watching kith and kin suffer like this, you don’t know whether you made the right decision. You need someone on your side.

DCN: Is there something else you’d like to say to families opting against tube feeding?

Dr. Hegde: In late-stage dementia, when the dementia has advanced so far that the person cannot swallow anything, often the problem is not just about food. The person will be having many problems. Cognitive impairment will be very high. In this stage, persons don’t show signs of pain, and don’t express hunger. They engage less. The care focus moves to palliation. You may do things like cutting out on some life-prolonging medications. You look for ways to make things more comfortable for the person. It is not sure how long it will take, but it seems clear that the person is dying.

All this is very difficult for families to see, but the person may not be suffering. Some families opt for giving IV fluids at this stage to give some comfort. It depends on what the family wants.

…once a person has swallowing difficulties, if you are not feeding them using tubes, then you are feeding through the mouth. They are going to cough. There’s a high risk of aspiration.

Coming back to feeding–once a person has swallowing difficulties, if you are not feeding them using tubes, then you are feeding through the mouth. They are going to cough. There’s a high risk of aspiration. Give what you can give using a suitable consistency–the semi-solid, mashed consistency, not liquids. Give them smaller quantities. Don’t worry about how much food is going inside. Maybe instead of four bowls of food a day you can give only one. You have decided against tube-feeding, so be okay with it. Don’t fret about it, don’t get anxious.

Eventually the person will go. That is what advanced stage is. Remember the person has suffered enough and may not be suffering now, even if it seems like that to you. Have someone who is with you. That is very important.

Dr. Soumya Hegde, thank you so much for this extensive discussion on so many topics around late-stage dementia care at home. We are sure many family caregivers will benefit from this.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 6 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, and Part 5: Eating/ swallowing problems.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Home care for late stage dementia, Part 5: Eating/ swallowing problems

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

In this part we start looking at a very common area of concern: when someone with dementia starts having eating/ swallowing problems.

Questions/ Comments by Dementia Care Notes: One very common and extremely worrying situation in late-stage dementia is when the person reduces or stops eating and drinking. Can you share why eating problems happen?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): There are many reasons why eating problems happen. The first thing to do in such cases is to distinguish between whether she doesn’t want to eat or whether she can’t eat/ swallow. These are very different.

If the person doesn’t want to eat, we need to understand why. The eating will improve once we resolve that problem. But if the person can’t swallow because the dementia has deteriorated, we have to do different things.

DCN: Why would someone not want to eat?

Dr. Hegde: Illness and pain is one set of possible reasons. The person may have viral fever or some physical discomfort and so they don’t feel like eating. The person may have pain — ear pain, tooth pain, stomach pain. Or a sore throat which makes eating hurtful.

The problem could also gastritis caused by some medication, a side-effect sometimes seen with some common medicines. A person with a bloated stomach doesn’t want to eat, but may not tell you what the problem is. The medicines may need to be changed or discontinued.

Or the person may have gone into a behaviour pattern that she can’t break out of. Or she may be so confused or lethargic because of dehydration that she refuses to eat. The reason could even be as simple as the food not being tasty.

DCN: That’s a lot of possible reasons. But first, how can we know if a person doesn’t want to eat or if she can’t eat?

Dr. Hegde: Look for facial expressions of pain or discomfort, or whether it seems a stubborn refusal.

A throat infection may also prevent someone from swallowing. You may not be able to examine for throat inflammation, and the person’s voice may not be sore, but they find it easier in these case to sip fluids. If accompanied by a cold the person may have a runny nose If you find the problem, you can try to solve it.

See how suddenly the problem happened. If it happens suddenly it is very unlikely that the dementia has deteriorated to that point. It can’t be that yesterday he ate rice and sambhar, chewing and swallowing properly, and today the dementia is so bad that he doesn’t eat.

One situation where the eating problem can happen in a relatively short term is in case of a vascular event.

DCN: By vascular event you mean something that interrupted the blood flow in the brain and caused damage, right? How can we know if a relatively sudden eating problem is due to a vascular event?

Dr. Hegde: A vascular event affects blood flow to the brain — a stroke, a mini-stroke. The damage due to it could affect any part of the body. Maybe in this person’s case it affects swallowing.

If the person eats some food and not others, it cannot be due to a vascular event.

Look for whether the refusal behaviour is present in other activities also, like refusing a bath, refusing to walk, refusing to talk—that could mean it is psychological. Offer different food choices. A lot of people who suddenly stop eating may still eat their favourite food, like say a peda. If the person eats some food and not others, it cannot be due to a vascular event.

Check if some other cognitive decline happened around the same time as the eating problem—like a deterioration in comprehension or communication. That could indicate that the eating problem is because of a vascular event, and not a refusal to cooperate. Be especially alert about vascular events if the person has related risk factors like hypertension or diabetes.

DCN: So, families can look at all these aspects, gather data, and tell the doctor what they have observed.

Dr. Hegde: Correct. The doctor will try to understand if the eating problem is because of brain changes (organic causes) or if there is a behavioural component (which means it is psychological) or something else.

…when you notice a swallowing problem, then whilst you are trying to figure out where the problem is, consider switching to mashed food consistency.

One thing is that when you notice a swallowing problem, then whilst you are trying to figure out where the problem is, consider switching to mashed food consistency. This is because liquids are dangerous to give case of genuine swallowing difficulties. So, play safe till you understand the situation better.

DCN: Regarding food taste: we often suggest that caregivers taste the food they give the person to make sure it is tasty, especially because foods taste different when liquidized. Also, don’t tastes change with age? Like they prefer more sweet things when older?

Dr. Hegde: Some foods are not palatable when mashed. You can’t mash an aloo parantha. But you could mash a rasgulla. If you are giving mashed consistency, select foods that taste good after mashing. And yes, the taste for sweet things is the last to go. Use it to your advantage. Add a little bit of sugar to food.

I remember one case of a diabetic resident who didn’t want to eat and so she was given a bit of ice-cream at the tip of the spoon, so that her first taste was sweet. She would open her mouth for it. She didn’t really appreciate the taste of the rest of the food, but she would continue eating.

When the person has eating problems, you won’t be able to give large portions of food. Try to increase the caloric value of your portions.

When the person has eating problems, you won’t be able to give large portions of food. Try to increase the caloric value of your portions. Like making dishes using condensed milk. Or roast and powder dry fruits (almonds, cashews, etc.) and sprinkle a bit of that powder on the food.

DCN: You mentioned dehydration as one of the reasons for refusing to eat. How can we notice and correct dehydration?

Dr. Hegde: Slowly growing dehydration is often missed. Families may think the person is having a litre of water but it may be much less. Correct that problem and things improve. IV fluids may be needed if the dehydration is severe. I have seen persons perk up after they are given enough fluid, and they start swallowing again on their own.

Slowly growing dehydration is often missed.

A dehydrated person looks dull. She wants to lie in bed most of the time, her skin looks very dull, eyes are sunken inside, the mouth is dry. Open the mouth to check the moistness in the tongue and in the oral cavity—dehydrated persons don’t have enough saliva. Or maybe you will see dry marks around the lips. The urine may start smelling. It may be strong and darker. There may be less urine. If the person is on diapers, the diaper may not get as wet, or you may need fewer diapers.

Making the person take enough water may be difficult. Some persons refuse plain water. Try mixing squash, or give nimbu pani (with salt and sugar) or thin buttermilk, whatever appeals to them.

Some persons keep refusing liquids of any sort. It is a big struggle to make them take even 100ml, and getting them to half a litre or more a day is almost unmanageable.

Your doctor may want the person tested for sodium levels to suggest what you can give as fluid. But often, mild problems may not show up in test results, though the person looks dull.

DCN: So, if the person looks dull, we shouldn’t assume it is because of decline in dementia.

Dr. Hegde: Yes, look for various possible causes for any decline. Dehydration is one, but there can be many others. Don’t assume any decline you see is caused by dementia. One more thing, continuing with issues around dehydration–maybe the person will complain of pain while passing urine. The doctor may advise testing for urinary tract infection, and also do other tests.

…look for various possible causes for any decline. Dehydration is one, but there can be many others. Don’t assume any decline you see is caused by dementia.

DCN: Some worried families get desperate when a person doesn’t eat. They try to force down the food.

Dr. Hegde: Yes, it is very worrying when you see the person hardly eating and you might be tempted to force them. But each time you try and force a person with dementia to do something it actually makes the resistance worse and make the task more difficult to complete.

Don’t panic if a few meals are missed. Look for reasons, try to solve them, observe things, and talk to the doctor to see how to proceed.

DCN: You said that “won’t eat” can also happen because of some psychological problem, some behaviour pattern. What is done in such cases?

Dr. Hegde: Usually, in behaviour problem situations, resisting food is not the only behaviour change. They may not cooperate in other ways too, and show behaviors like resistance to diaper change, resistance to get up, and other such things.

Once we establish the cause of these behaviours we can start to solve the problem. If they refuse to eat, and you’ve given the IV fluids (in cases of dehydration), made sure there are no aches and pains, ruled out everything, and it’s more than four or five days, then the doctor will probably consider medication.

A Ryles tube (nasal feeding tube) may be needed for some days to ensure nutrition as medication will take some time to take effect. We feed through the tube as well as directly (normal eating with the mouth). Once the problem is resolved and the person is eating enough through the mouth, we remove the Ryles tube. The medication may take a few days to start working and one will have to be patient.

Note that tube feeding may also be needed to give the person enough nutrition if the person is very ill physically, say, the person has pneumonia.

DCN: Can you give some more examples of what may work for a “won’t eat” case?

Dr. Hegde: Sometimes you have to try things.

In one interesting case, we had an extremely thin lady who hadn’t eaten properly for two years from before she came to live at the residential facility I was working in. We made her sit with others when they were eating. She watched them. And we just left her. And she began eating. At home she had been fed in a separate place by the paid caregiver. Here, once she got company, she started eating again.

DCN: That’s quite a few things we can try for the “won’t eat” situations.

Now about the “can’t eat” situation, where there is a genuine swallowing problem due to the growing dementia. You said it will happen slowly.

Dr. Hegde: Yes, chewing starts taking longer. It takes much longer for the person to eat the same amount of food. She doesn’t seem to understand what to do with the food in the mouth. Some just grit their teeth and don’t open their mouth. They’ve forgotten what to do. You put the food before them, you try to coax them. Or take the hand if they can’t use a spoon. They might cough while swallowing liquids. Mashed, semi-solid food will have to be started.

And then you reach a stage where the person is on mashed food and now cannot swallow even that. You may need to think about feeding tubes.

DCN: What can we try if someone seems to have forgotten how to use a spoon or how to open the mouth and eat?

Dr. Hegde: One thing to try is hand-feeding. It’s not easy because the person may bite your hand. So maybe avoid hand-feeding rice and give a rolled up chappati so that you have some space between your hand and the person’s teeth. I’ve seen cases where a rolled chappati was placed in the person’s hand and her hand was moved up, and she just took over and fed herself.

Try smaller meals. Meals that take too long exhaust you and also exhaust the person.

Try smaller meals. Meals that take too long exhaust you and also exhaust the person. Give, say, one katori (small bowl) at a time, around four or five spoons. It may take fifteen to twenty minutes. Then after one or two hours give another small meal.

To help them remember to swallow, lift the chin, put the spoon of mashed food in, and then tip the head down to let them swallow. It’s an instinct. Stroking the throat can also help. Both these methods work well. Or try swallowing prominently in front of them and they may mimic you.

See what works for you. Some people touch the spoon to the lower lip and tap lightly to make the person open the mouth. Or they say “aaa…” and the person mimics and opens the mouth. Or they lightly massage the joint between the upper end of the jaw and the ear, the temporomandibular joint (TMJ).

These techniques work best when the person is starting to go into swallowing difficulties, and is pocketing the food and doesn’t know what to do with the food afterwards.

DCN: Can we check to know if the person really has swallowing problems?

Dr. Hegde: Usually a swallowing problem due to dementia deterioration starts with difficulty in swallowing liquids. They cough if given water, but may not cough when given food. That is when we switch to mashed or semi-solid food.

Usually a swallowing problem due to dementia deterioration starts with difficulty in swallowing liquids.

If possible, get a “swallowing assessment” done by an ENT or a speech pathologist who specializes in swallowing difficulties. The specialist will do tests and examinations and confirm whether there is an actual swallowing problem. They will recommend a suitable food consistency.

DCN: Tell us more about liquids and food consistency, and pocketing.

Dr. Hegde: When swallowing problems start, avoid giving liquids.

One concern at this point is how to ensure of enough fluid intake. You can give liquids between semi-solids, like one teaspoon of liquid after every two spoons of semi-solid food. A suitable consistency can be created using thickeners (these are not available easily in India). Or use some other way to get the desired food consistency.

Do not give more food if the person still has food in the mouth. If the mouth is full, and the person is not gulping down the food, put in a very small amount of water, very carefully. Sometimes that helps them swallow.

Pocketing is when someone keeps food in the mouth and forgets to gulp it down, so it stays there, in the mouth. If food is gooey, it’s less likely to be pocketed. Like a thick curd consistency—you just can’t pocket something like thick curd.

When a person has swallowing problems or pocketing problems, switch out of solid foods. Use consistencies that are difficult to pocket and easier to swallow.

DCN: Once you’ve done all this, and the person is still not swallowing, the person is no longer getting enough food. That is when tube feeding may be considered, correct?

Dr. Hegde: Yes. But as I said before, tube feeding may be required even in other cases, like when the person hasn’t been getting enough nutrition because of illness, or temporarily when medication has been initiated.

Tube feeding for the “can’t eat” is a decision that needs careful consideration and an understanding of the pros and cons.

DCN: Thank you, Dr. Soumya Hegde, for this discussion on understanding and handling situations where the person can’t or won’t eat food.

We will continue on a related aspect: tube-feeding in the next part, the concluding part of this interview series.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 5 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, and Part 6: Tube feeding and related decisions. We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

We continue in this part with more special care topics, and discuss constipation, use of catheters, dental care, and improving the person’s quality of life.

Questions/ Comments by Dementia Care Notes: Another issue that may not get noticed is constipation. Someone with dementia may not tell us she is constipated. How do we detect it, and what can we do about it?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): Most people have their own frequency of bowel movements. Keep track of the person’s bowel movements to know if they are delayed from their normal cycle. See whether they have been drinking the same amount of fluid, having the same amount of food. Simple remedies may work if done as soon as there is a delay in bowel movements—like giving them warm water (if they can drink safely), increasing the fluid intake slightly, and so on.

Check for bloating—see if there is hardness near and below the belly button. They might pass a lot of gas, but not be able to open their bowels. You can do a PR (per rectum); this is an examination through the rectum, a procedure a nurse can train you on. This will let you check if they have hard stools that they have not been able to evacuate.

Their appetite may come down. They may find no taste in the food. This is a cycle—if they don’t eat enough, there is constipation, and if there is constipation, they don’t want to eat. Act before you get caught in this loop.

An enema can help. A phosphate enema is usually safe, but ask your doctor to prescribe what is suitable. Also ask about mild laxatives you can use.

Families handle constipation differently. Some like to give medicines and wait, and repeat the medicine if there is no motion. The problem is that in the case of medicines, it is difficult to say when the motion will happen, so sometimes you give the medicine, there is no motion, and you give it again, and now the person has a lot of motion because you gave two doses instead of one. An enema is simpler that way because it is immediate. Your choice depends on what you and your doctor are comfortable with.

It is good to have a pattern so that things do not reach a crisis state. For some persons it may be enough to keep a watch and to act in the early stages of constipation. But some persons are habitually constipated. For such persons, you may need a timetable to ensure you keep giving enough laxatives or enemas as suitable, and in time. Families often establish their own pattern of dosages and days.

…a lot of caregiving is about understanding patterns and setting routines for what to do for everything (not just constipation). It reduces the chances of problems and makes care easier.

In fact, a lot of caregiving is about understanding patterns and setting routines for what to do for everything (not just constipation). It reduces the chances of problems and makes care easier.

DCN: We’ve heard of some cases where the family was advised to use a urinary catheter to save diaper costs. But a catheter use has its own problems and is recommended only for some specific cases, not as a cost-saving method. Could you explain what a catheter is, and tell us what we should know about using one?

Dr. Hegde: A urinary catheter is a tube inserted into the bladder via the urethra—it allows the urine to drain out into an attached urine bag. The catheter has to be inserted by a trained nurse, and to be replaced at a frequency the doctor advises.

A catheter can cause problems. It is a foreign object introduced into the body and can be a source of infection.

A catheter can cause problems. It is a foreign object introduced into the body and can be a source of infection. People on a catheter have a higher chance of urinary tract infection (UTI) because of this. Using catheters properly needs alertness and care. A catheter can hinder a person who is still walking around. When the person sits or lies down, the urine bag should be at a lower level so that the urine does not flow back. The person may also keep pulling on the catheter.

A diaper is practically safe in all these respects. But it is costly.

A catheter may be required in some situations. Catheters are required when there is retention of urine because the person is not able to pass urine. There could be a problem with the passage itself. This is more common in men because of enlarged prostates.

There are other situations, too, when a catheter is considered. Suppose a person has a bedsore in the diaper area and this keeps getting wet and does not heal. If you use a catheter you can keep the area exposed and dry so that bedsores heal faster. You can turn the person on one side, and let that bedsore area get air and heal. The catheter can be removed once the sore has healed.

I also use catheterization for a few days in case I need to monitor the output, like when the person is on IV fluids and I want to know the amount of urine—a catheter and urine bag lets me measure it correctly.

…a catheter is not a convenient and cheap substitute for a diaper. It should be used only when appropriate.

But a catheter is not a convenient and cheap substitute for a diaper. It should be used only when appropriate.

DCN: One problem some families report is that the room with the person always smells of “illness.”

Dr. Hegde: That is usually because of the clothes and the stench of urine. Sometimes caregivers tell us that whatever they do, the person’s skin smells of urine. But why is the urine smelling so strong? Maybe the person is dehydrated or has a urinary tract infection. Solve that problem.

Poorly secured diaper disposal bags can be another problem. If you’ve securely tied the soiled diaper into a disposal bag and put that inside another big bin, there will be no smell.

Some people try to handle this problem by spraying room fresheners. But instead of that, find the source and reason of the smell. Maybe you should hydrate the person more, change the diapers more often. Check the clothes, keep the area open. Ensure ventilation.

DCN: Another challenge families report is problems of getting the person’s teeth cleaned. Other dental problems faced include plaque, cavities, loose teeth, and ill-fitting dentures/ lost dentures. How can these be handled at home for someone with advanced dementia?

Dr. Hegde: Maintaining dental hygiene is very important. If the person can no longer spit when you try to brush their teeth, try using diluted mouthwash to clean the teeth. Dip a cloth in it and wipe everything very well. Be careful; don’t pour it into their mouth!

Every few days, maybe once a week, try to do better cleaning. Wait for a time when the person is cooperative and use the help of other family members to do this.

Some agencies provide home nurses for the oral care procedure. They come with the equipment they need and do it.

Some agencies provide home nurses for the oral care procedure. They come with the equipment they need and do it. You can use this service periodically.

Another way is to take them to a dentist once every three months or so for a proper cleaning. Talk to your doctor about what to use for sedation if required to help the patient cooperate for the procedure. Arranging such a trip is difficult but possible.

If the person has a cavity (caries) or a loose tooth, you may need to take the person to a hospital. They will admit the person, use general or local anaesthesia, do the procedure, and send them back. Try to get as much dental work done in one trip as you can. A loose tooth is very risky, particularly if the person swallows it.

DCN: What about dentures?

Dr. Hegde: There are many problems in using dentures. They can be ill-fitting and cause mouth ulcers. Some persons refuse to take the denture out and clean it.

Also, a denture fitting requires the cooperation and understanding of the person; this is a problem for someone with dementia. And gums may recede so much that dentures don’t stay in place.

Before wondering how to get a proper denture made, think, does the person really need a denture? I wouldn’t suggest a denture for late-stage dementia.

Before wondering how to get a proper denture made, think, does the person really need a denture? I wouldn’t suggest a denture for late-stage dementia. In any case in the late stage, when persons are on semi-solid food, dentures are not needed.

DCN: Another problem some caregivers report is that sometimes the person sleeps all day and is restless and awake at night and may even keep groaning. This is worrying and disturbing for family members.

Dr. Hegde: Try to keep the person awake during most of the day. Night time can be frightening for the person. Lights are out, there is no activity, no noise. Everything is hush hush. They are scared; they do not feel secure enough. If they are kept alert and engaged during the day, the body gets tired and they sleep off at night.

DCN: Overall, what can we do to improve the quality of life of a bed-ridden late-stage dementia person?

Dr. Hegde: A lot depends on what is still possible for them.

Think of the types of stimulation possible a bedridden person—more of the tactile, auditory, olfactory things and maybe not so much of cognitive stimulation, puzzles and all.

For sound, for example, maybe have a tape recorder to play their favourite music. If they are not into music, then maybe play a recorded conversation between you and them. Or put wind chimes.

Tactile stimulation, like a head massage or a body massage, can be very relaxing for the person.

If they are still opening their eyes and looking around, maybe put a clock on the wall. And pictures. Look for what is practical for you. You can add a fragrance, if that seems to make a difference.

Try to keep the person engaged through the day.

Try to keep the person engaged through the day. If possible, transfer them to a wheelchair from the bed and take them around. That transferring may be difficult at home. But at least try to keep them sitting up for some time unless there is a medical problem in keeping them upright. Keep them propped up for most of the morning, and then let them lie down in the afternoon, and again prop them up in the evening. This way you can connect with them more, you can go in their room and talk to them. They can see what is happening around them.

How you set up the room can make a difference. In fact, there is an entire field of study called nidotherapy about how changes in the environment can bring about changes in the person.

DCN: Thank you, Dr. Soumya Hegde, for this discussion on constipation, use of catheters, dental care, and improving the person’s quality of life, etc.

For the final two parts, we will look at aspects related to a major problem most families face: when the person with dementia does not eat enough food and has swallowing problems.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 4 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 5: Eating/ swallowing problems, and Part 6: Tube feeding and related decisions.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

In this and the remaining parts of this interview series, we discuss specific care topics. Below, we discuss bruising, skin care and circulation, exercise, massage, and bedsores.

Questions/ Comments by Dementia Care Notes: Most persons in late-stage dementia are bedridden and dependent. How does bed-ridden care for someone with dementia differ from bed-ridden care for other persons?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): A major difference is the level of understanding and cooperation shown by a non-dementia person compared to what someone with dementia shows. A normal person may understand what we are doing and why, and help by cooperating, or at least they may not push us away. But someone with dementia may not understand, which makes the tasks more difficult.

Some additional issues are more common in dementia persons, like contractures and swallowing problems. Also, they may have muscle atrophy and general deterioration. They usually need more passive physiotherapy.

Persons with dementia are often unable to tell us about their problems like pain or indigestion and so on. We have to be more observant and careful as caregivers.

DCN: You mentioned earlier families can use their day’s routine to identify what to learn for caregiving. Typical skills are obvious, and relate to basic care—bathing, shampooing, cleaning, feeding, position change, transferring them from bed to a chair and back, and so on. But we may miss some other important aspects because they are not part of such essential care work.

For example, consider skin-related problems. Older persons have very delicate skins, and keep getting bruises. How do we handle this?

Dr. Hegde: As people age, their skin becomes very fragile. Their capillary walls are more fragile and they are more susceptible to breakage. The protective layer of fat beneath the skin has also reduced so people get injured easily. You see the bruises all the time. You worry, I bruised them, did I hold so tight? But actually, you haven’t held them tight—they just bruise easily. You can try and apply less pressure while holding them but they may still bruise.

An ice pack can help the bruise resolve faster, but healing will still take time. Four to five days is reasonable in an old person. The bruise will move through stages, starting with a pinkish red, then becoming darker, blue-black sort. It keeps changing till finally it is a faint yellow colour. Families get worried they did something wrong when they see a dark blue bruise but what they are seeing is not the first stage of the bruise—the injury has happened earlier. Give the bruise time to heal.

DCN: When is a bruise cause for worry?

Dr. Hegde: If the bruise is on loose skin, loose flesh, I would not get worried.

Usually it is not the bruise that is a cause for worry, but a muscle or bone injury under the bruise. There could be a fracture. Or something that needs anti-inflammatory medication. Look for the presence of significant pain. If I touch a bruise and the person screams, it means there is significant pain. The bruise is tender. There could be swelling.

Usually it is not the bruise that is a cause for worry, but a muscle or bone injury under the bruise. There could be a fracture. Or something that needs anti-inflammatory medication.

In such cases, there may be pain when you touch anywhere on the limb, not just on the bruise. A bruise at the knee may be seen when the caregiver tried to separate the knees to change a diaper, but maybe the femur was fractured, and when you touch anywhere on the leg it hurts. Many late-stage persons have significant osteoporosis. Even a slight amount of pressure can cause a fracture.

In case of pain and tenderness, get a doctor to check what is wrong. Even if nothing is broken, the person may need an anti-inflammatory medicine for a few days. If you can’t get a doctor, ask a nurse for an initial assessment. Or can go to a doctor with a photograph of the bruise, maybe with an x-ray done using a portable x-ray service. Or take a video of what happens when you touch or move the person. The doctor will advise.

DCN: How can we keep their skin healthy?

Dr. Hegde: One is maintaining circulation. Second is, don’t use very hot water—use only lukewarm water. Hot water may do more harm to the skin, while lukewarm water retains the skin’s moisture and prevents the skin from drying. Try to keep the skin soft and moist. If it’s dry, it gets cuts.

Don’t wipe off all the moisture after a bath. Just dab and dry.

Don’t wipe off all the moisture after a bath. Just dab and dry. You can use flannel or a folded thin towel to dab the skin. Apply moisturising lotion after the bath when the skin is still slightly moist. Avoid talcum powder; it dries the skin.

DCN: Sometimes people get scratches because of their nails, or seem to have an itch they keep scratching.

Dr. Hegde: Try to prevent scratching by cutting and filing the nails, so that the nails don’t have sharp edges. Or soak the nails in warm water and file them frequently. Nail care and foot care twice a week also helps.

You also need to prevent scratches getting infected. Apply some mild antiseptic cream if needed. If the person keeps scratching the same place again and again, you can bandage it. That will let that place heal, though they may scratch somewhere else. If scratching persists, consider using a sock to cover their fingers. I find that when this is done for some time, the scratching behaviour is forgotten.

A lot of such behaviours are habitual. They do something, they get some sensation they enjoy, and so they keep doing it. If you manage to make them stop for some time, you can break the behaviour pattern. Think of ways to distract the person so they don’t scratch. Maybe they are scratching because of they have a really dry skin, and it itches. Use skin care techniques to improve the dry skin. Ask a dermatologist about special products that can help.

Some soaps and shampoos are very harsh; look for milder products like hypoallergic products.

An allergy is another possible reason. Some soaps and shampoos are very harsh; look for milder products like hypoallergic products. They’re expensive but they may help you get past that stage when the skin is really dry.

You may need to supplement various skin tips with an anti-allergy tablet for a few days. Once the scratching habit subsides, you may be able to stop the tablets and just continue with the dry skin tips.

Some foods may also cause allergy. In these cases its best to consult someone who treats allergies or even consider alternate treatment options like Ayurveda.

See what helps in your case.

DCN: We often hear that doing massage and passive exercise are an important part of caregiving. Could you explain why these are considered important, and how we can do them?

Dr. Hegde: A massage relaxes the person considerably. It improves blood circulation. It is also a form of tactile stimulation, and adds to the quality of life of the person.

Massage has to be done carefully. Don’t massage too hard; don’t think, I’ll give a proper massage and the person will feel better. Don’t yank or pull. There is a pressure level that is appropriate and a pressure level that can harm. Ask a physiotherapist to show you the correct amount of pressure, and what can be safely done. Or get a vibrating massager so that you control the pressure you’re applying. Use a bit of oil and let the machine do the work.

You can massage all over the body. Focus on the back if the person spends long periods in bed or sitting.

We use passive exercise to try to retain the person’s range of motion as much as we can. A physiotherapist can show you what to do.

Passive exercise is also very important. We use passive exercise to try to retain the person’s range of motion as much as we can. A physiotherapist can show you what to do.

If possible, do massage and passive exercise daily, maybe even twice a day. Don’t be rough, don’t apply too much force, and watch out for pain. If you have any doubt, opt for milder pressure. Also, if contractures have already set in, you have to be very careful.

DCN: What are contractures?

Dr. Hegde: A contracture can be described as a stiffness of a joint, a stiffness that maintains the joint at a particular angle, such that the joint is difficult to bend or extend beyond that. The person holds the joint in that position. For example, a wrist flexion, where the hand gets bent at an angle and does not straighten out. If you try to straighten it out the person winces and you realize you are doing something wrong.

In a lot of late-stage persons, you see wrist flexion. Another common contracture is the ankle extension, where the ankle is outward and extended. Yet another common contracture is when legs remain bent at the knee and don’t straighten out.

DCN: Sometimes a family caregiver is handling all this work alone. What level of massage and passive exercise should she aim for if her time and energy are less?

Dr. Hegde: That’s difficult to say. Keep in mind the purpose of these, and why they are important. Try for two sessions each day, or one, or maybe combine the massage and passive exercise sessions or do them on alternate days. You will have to see what you can handle.

DCN: Please tell us about what bedsores are and how to reduce the chances of bedsores.

Dr. Hegde: A bedsore is basically the breakdown of the skin. This could happen because of lack of moisture or lack of circulation to that area.

Bedsores are more likely in some parts of the body, which we call “pressure areas.” Like areas where bones are prominent and close to the surface, or other body parts that are under continual pressure because something keeps pressing on them.

Try to make sure no part of the body is in contact with a hard surface for very long, and that there is no breakage in the area. Watch out for a slight redness in an area of the skin, which is how a bedsore begins.

Try to make sure no part of the body is in contact with a hard surface for very long, and that there is no breakage in the area. Watch out for a slight redness in an area of the skin, which is how a bedsore begins. You get a variety of inflatable rings for lifting off one part of the body from the bed. You can also use other objects, like a glove with water, or some type of air bubble, or a water bottle, whatever can reduce the contact between that part of the body with the bed or chair. And keep changing the position of the water bottle or whatever you are using.

Make sure the bed-ridden person changes sides every two or three hours. Some persons turn themselves. But others cannot turn or don’t want to turn, so you have to turn them every two to three hours, even at night. Consider an air mattress for persons who no longer turn on their own. Ask a physiotherapist to check the current state of the person, and advise you on bedsore prevention.

The lower back area is most prone to bedsores. One tip is that each time you change the diaper, before you turn the person on the back, massage the lower back lightly for circulation. One problem is that sores start forming in the lower back or buttock area, and when people pass motions, it touches these sores. This is especially seen for persons who keep passing small amounts of motion all day. Try to use padding to avoid this problem.

DCN: How are bedsores treated?

Dr. Hegde: The faster you notice sores, the faster you can to do something about them.

The first stage is slight redness, and you need to notice it right away to stop it from getting worse. Reduce contact and pressure on that area. Keep checking the status and get an opinion of a nurse or doctor. Most nurses are trained in bedsore dressings and know what dressing is required. The conventional method is using sprays, betadine dressing, etc.

If the bedsore progresses and bursts and there is a yellowish pus discharge, it means it’s got infected. Then, in addition to a dressing, it may require an antibiotic for the infection.

If the bedsore does not heal for some time with all this, consult wound specialists.

If the bedsore does not heal for some time with all this, consult wound specialists. They will assess the bedsore and the person, and give you special dressings to use. They also advise on other actions possible to speed up healing. For example, they may suggest improving hydration– maybe the person needs to be on IV fluids for some time. Or they may suggest vitamin injections, or more intake of some types of food. Bedsore healing is not just bedsore dressing, it includes things that can promote healing.

DCN: Thank you, Dr. Soumya Hegde, for this discussion on skin care, massage, contractures, bedsores, etc.

We will continue discussing special care topics in Part 4, where we will look at constipation, use of catheters, hygiene, dental care, reducing restlessness, and improving the person’s quality of life.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 3 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, Part 5: Eating/ swallowing problems, and Part 6: Tube feeding and related decisions.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Home care for late stage dementia, Part 2: Getting medical advice and preparing for decline

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

In this part, we discuss how to get medical attention, stay in touch with doctors, and cope with the deteriorating medical status and related decisions.

Questions/ Comments by Dementia Care Notes: What sort of doctor(s) should the family stay in touch with?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): You need a doctor who knows about dementia, and knows the status of the person with dementia. This is usually a psychiatrist or neurologist. Ideally this is the doctor who diagnosed the person and who has been with you all these years. If you change your city, ask your doctor to suggest a doctor in your new city. Make sure the new doctor you go to knows the case history. And stay in touch with your dementia doctor. Doctors cannot help families they are not in touch with.

You will also need a home doctor or GP (general physician) for immediate medical attention for problems like cough or urine infection, and for handling normal ongoing problems like diabetes. You can’t go to a dementia specialist every time for such things. You don’t need to. Look for a physician near you, maybe from a neighbourhood diagnostic facility.

DCN: A common problem is that specialists rarely make home visits, and it is difficult for families to take someone in advanced dementia to a specialist. Can you suggest practical ways for families to stay in touch with a dementia specialist?

Dr. Hegde: Till it is possible for you, take the person for a visit every six months or so.

Book an appointment with the doctor. Use that appointment slot to give the doctor updated information. Show the doctor home videos of the person doing various things.

Later, maybe taking the person to a doctor’s clinic is no longer possible. Maybe you can’t get the person with dementia in and out of a car easily. But the family caregiver can meet the doctor anyway. Book an appointment with the doctor. Use that appointment slot to give the doctor updated information. Show the doctor home videos of the person doing various things. The doctor can review these videos and get to know how the person is walking, talking, eating, etc. The doctor may ask questions like, does the person cough when given water? Or the doctor may ask you to check something.

If the family stays in touch at least once every six months in this way, the doctor has the updated status about the person, and knows how the person is progressing. Many doctors who are kept informed like this may be comfortable advising families if contacted for a problem. Ask your doctor what contact method suits them in case you need help for a problem, so that the doctor knows you may call or message them between appointments.

DCN: As the dementia gets worse, the person will decline. In addition to dementia, other medical problems may also be there.

Dr. Hegde: That’s right. You need some type of regular check-up. In fact, that is why you must stay in touch with doctors, so that they can tell you what to look for and how, and tell you which tests to get done. You need to be able to spot problems.

…persons in late-stage dementia may not tell you about pain and other problems, so observing and remaining alert is very important. Keep your doctors updated, so that they can suggest what to look for.

The difficulty is that persons in late-stage dementia may not tell you about pain and other problems, so observing and remaining alert is very important. Keep your doctors updated, so that they can suggest what to look for.

DCN: This brings us to the challenge where the person with dementia develops a problem that needs major hospital treatment like cancer or kidney problems.

Dr. Hegde: This can be quite tough. The person was already suffering because of dementia. Now there may be something additional where it is usual to give aggressive care. Often such problems don’t even get noticed in early stages and with late detection, the treatment required is even more aggressive.

Take the example of certain types of cancer. The caregivers may not know that the person has pain. They may not notice anything till the cancer has advanced so much that the skin manifestation is obvious. Even then, they may first think it is an abscess and try to treat for that. It takes time to realize that this problem needs a hospital check-up.

At a hospital, after various tests and scans, they get a diagnosis. The cancer specialist will advise on an approach suitable for cancer given its stage. He will probably suggest a timetable for treatment. What is the family to do next?

This is where you need a doctor who understands dementia and who knows you and the person. You can consult your dementia doctor and ask your questions, like whether the suggested cancer treatment would increase the quality of life or not, what would happen if you don’t want that treatment, will there be pain, etc. You can then go back to the cancer specialist to discuss more. Or maybe your dementia doctor will be willing to liaise between you and the cancer specialist to help decide what to do.

Persons who have dementia along with other serious medical conditions need a multi-disciplinary approach. You cannot go just by what one specialist says.

Persons who have dementia along with other serious medical conditions need a multi-disciplinary approach. You cannot go just by what one specialist says. You need someone knowledgeable about medical aspects to help you. This person will get all the information, ask various doctors the questions, coordinate between them, and put things in perspective for you. If the dementia specialist does not do this liaison, maybe you can ask a GP who knows you well enough. Or a friend or relative who is a doctor. Or maybe a palliative care team can help with this liaising. But you will need this coordination.

DCN: What about surgeries? They will involve a similar decision process, right? Are there some more suggestions on what to keep in mind for surgery decisions?

Dr. Hegde: Surgery decisions depend on the benefit you generally expect because of that type of surgery, and on whether you think the person will actually get those benefits.

Some types of surgeries may not be particularly useful in this advanced stage.

Basically, a surgery decision depends a lot on the level of cognitive impairment of the person.

Basically, a surgery decision depends a lot on the level of cognitive impairment of the person. How will the hospital stay affect the person? How much of the required post-operative care and rehabilitation is possible given the state of the person?

Take the case of operating for a fracture. In advanced cases, it is unlikely that the person with dementia will be able to follow the post operative physiotherapy protocol. So surgery with the intention to help them mobilise again may not be realistically possible. Yet , surgery may make it possible to enable the person enough to use a wheel chair and to reduce the pain associated with a fracture. So there are many aspects to consider.

Or you may decide that the risk of anesthesia is too high and you may not wish to proceed. In this case, you could discuss options of care with the doctor such as traction and maintaining the position of the fractured limb. A physiotherapist can tell you how to move and help the person till the person heals naturally.

But if the person is cognitively well enough to cooperate with post-operative work, a better quality of life can be expected.

For decisions like surgeries, it is good to discuss multiple aspects with experts and maybe also talk to families that have faced similar situations.

DCN: Some doctors are gentle and patient when explaining things to families. Some are brusque. What can family members do to make their interactions with doctors more informative and pleasant?

Dr. Hegde: Again, let’s take the example of cancer.

The doctor gives you the cancer diagnosis, explains it, and recommends some course of action. You and your family should think about what the doctor said and what you want to ask next time you meet the doctor. You may want to ask about the prognosis (what to expect in the future, chances of recovery, etc.). You may want to know why the doctor feels treatment is needed, or why the doctor feels treatment is pointless. You may want to know what will happen if you decide on no treatment or a milder treatment– what kind of harm will the person come to, what sort of pain the person may have, and so on.

Once you are ready, meet the doctor to ask your questions. The doctor may say, I am not the best person for these, and refer you to someone. Or the doctor may explain things to you. In either case, if you don’t have your answers or are not satisfied, get a second opinion.

Take the report to another oncologist. Ask people around you for references to doctors who can explain these things to you. And talk to your dementia doctor.

When talking to a doctor, the tone of your voice is important. If you are agitated and loud or if you start arguing, the doctor may withdraw, and may not tell you all they can tell you.

When talking to a doctor, the tone of your voice is important. If you are agitated and loud or if you start arguing, the doctor may withdraw, and may not tell you all they can tell you. Stay calm and patient.

DCN: Sometimes the person falls ill and is rushed to the hospital because that’s what we do when someone is ill. At the hospital, we may have very little involvement in the decisions the doctors and nurses take. They may use aggressive treatment. Also, person may get worse. Sometimes the person is put on a ventilator and family members don’t know whether to continue with that or discontinue it.

Dr. Hegde: Yes, that happens. I’ve had families contact me for advice. The hospital doctors tell them that if they take the ventilator off, they can’t say what will happen, and that is true.

I ask families to look at the state of the person at that point. Think what the person was like before being put on the ventilator. Suppose the person is able to breathe after removing the ventilator –the best-case scenario—what quality of life will the person have? And if the person remains on the ventilator, you don’t know how long it will be, it could go on and on, and it is costly and you are just waiting, unsure of what to do next. See what you find acceptable.

Such situations are very difficult for the family. Maybe the family has discussed about end-of-life decisions earlier. It is good if the family is together in this decision and has the help of a doctor who knows them.

DCN: All through this process of decline, the late-stage person is being cared for by one family, but their siblings and close relatives may be in other cities/ countries. What suggestions do you have for keeping others in the family informed?

Dr. Hegde: Your communication approach essentially depends on your mutual understanding and what you can do without increasing your stress and work. You can definitely try to keep them informed. If the remote relatives want, and you can coordinate it, video Skype is an option to make remote family members feel involved and informed. They can talk to you, and also see the person with dementia and understand the status better.

…it may not always be possible for you to keep distant relatives constantly updated. You will be busy and worried yourself. If such ongoing updates and communication are adding to your stress, explain your limitations to these remote family members.

Note that it may not always be possible for you to keep distant relatives constantly updated. You will be busy and worried yourself. If such ongoing updates and communication are adding to your stress, explain your limitations to these remote family members. Don’t hesitate to ask for help if they offer.

And as I mentioned earlier, keep in mind that you may need to discuss end-of-life decisions with family members.

DCN: Dementia is called a life-limiting condition. Ultimately, the state of the person with dementia will get worse anyway, even if there is no major illness like cancer. What happens then?

Dr. Hegde: Decline is different from person to person. And it may be fast or slow.

But generally speaking, over a period of time the intake of someone with dementia comes down, mobility comes down, and communication drops to almost zero. They express nothing to us. No activity is possible. Interaction are limited to making sure they are cleaned and fed. You shift them on a wheelchair, and they just sit there. They lose interest in their surroundings and the people around them.

When doctors cannot find any physiological reason for a major decline, they have no way to improve the situation. Things may have reached the final stage, though it still can’t be said how long they will remain at that level and when they will get worse.

Talk to your doctor to find out more about the person’s state. Maybe this is also when you tell your relatives about the decline, so that they can visit if possible. Tell them that later, when things really go bad, you may not be able to inform them in time for them to come.

The person may stay at that level for a while. Or something could happen within a few days. The vital signs may start going down and then suddenly crash, the BP might go down, the oxygen saturation might drop.

Think about whether you need to discuss end-of-life choices with close relatives if you have not already done so.

Think about whether you need to discuss end-of-life choices with close relatives if you have not already done so. It depends on how you discuss and decide things in your family. But if you need to talk and agree about these things, do not delay the discussion if you see a decline.

Watching that decline can be tough for a home caregiver. Try to stay in touch with some someone who can be with you in this, maybe a doctor or social worker or palliative care expert or just a very good friend. You need someone to support you at this hard time.

Thank you, Dr. Soumya Hegde, for your suggestions on how to get suitable medical support, and how to cope with declining health!

In the next few parts, we will look at some specific care topics. Part 3 will include topics around skin, bruises, exercise, massage, and bedsores.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 2 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, Part 5: Eating/ swallowing problems, and Part 6: Tube feeding and related decisions.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Home care for late stage dementia, Part 1: Prepare for home care

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

We begin this interview series by discussing how to organize the home and prepare for smoother care for someone with advanced dementia.

Questions/ Comments by Dementia Care Notes: Home care for someone with advanced dementia needs organizing so that we can do it smoothly and with less effort and stress. How should we set up the room where the person and the caregiver will spend most of their time?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): Pick a suitable room with care if you have the option. Try to use a well-ventilated, well-lit, clean room where there is enough space to move around. A dingy room without fresh air or light can be very depressing for the person and for the caregiver. The room doesn’t have to be big, but it should feel open. Declutter the room. Many things the person needed earlier may not be needed now. Actually, you can start this clearing out of objects even before the person becomes bedridden. Remove things that can hurt the person or are unsafe.

Have enough comfortable space for the caregiver so that the caregiver feels happier and better while caring. And if you are using a paid caregiver, remember that a paid caregiver won’t stay if they are not comfortable.

A room with an attached bathroom is preferable if the person can use a bathroom. Make sure the bathroom is accessible by the person, even on a wheelchair. Add grab rails. You may need a commode chair.

One important thing to try for is a hospital bed so that the person can be raised and lowered easily.

One important thing to try for is a hospital bed so that the person can be raised and lowered easily. See if you can buy or hire a hospital bed that can be raised and lowered because that will make it more convenient for caregivers when they have to change diapers or give a bath or feed the person. Or at least get a bed-rest that you can use to make the person sit up. You’ll also need sheets for waterproofing under the bed-sheets. Think about getting a wheelchair if you can manage it.

Make a place for your care supplies and basins for water needed for cleaning, an air mattress, and various things like these. You can keep adding these objects as and when the need arises.

DCN: How can we organize and manage the care work so as to avoid exhaustion and burnout?

Dr. Hegde: When it comes down to managing a bedridden person, organization and management can really makes a difference, both for the family caregiver and the paid caregiver.

Decide who will do which task, and at what time, and try to ensure that all the tasks get done without anyone getting too tired.

Being clear on what things you want done every day. For example, you want the person bathed and cleaned and fed. You want to do massaging and passive physiotherapy. You also want have some form of stimulation for the person. Make a timetable so that you can fit all you want to do and to manage it without confusion. Decide who will do which task, and at what time, and try to ensure that all the tasks get done without anyone getting too tired.

For example, consider the night rest for the caregivers. Caregivers will burn out without enough sleep, even if everything else is great. Family caregivers will fall ill and break down. The paid caregiver will leave if she doesn’t get enough rest.

So, share the work so that each caregiver gets at least five or six hours of peaceful sleep. Say one caregiver can sleep off early, maybe by nine, even before the person with dementia does, and this caregiver gets up by about 3 or 4 in the morning, and is rested enough to do what is needed. And the other caregiver can stay up longer, so that she is there with the person who may remain awake till later. This second caregiver sleeps late but she can sleep longer because the first caregiver wakes up early. The person with dementia may have slept for only five hours but somebody has been with them, and both caregivers take turns and get enough sleep.

Proper arrangement and use of space are important. Keep things organized and within reach for the activities you do often. Take diaper change for example. Think of all you need for the procedure, keep it somewhere that you can easily reach and use when you want, so that the diaper change takes the minimum time and effort. Even if you have to do it many times a day, you aren’t thinking, oh no, I just finished cleaning, and now she’s passed motion again and I have to do it all over again.

DCN: Family members need to handle or supervise daily care tasks. Information for these may be available in scattered ways in books and videos and such online resource sites, but they are new to this. What do family caregivers need to learn? Where can they learn it?

Dr. Hegde: Think of all you need to do through the day, see what you know, and ask questions about the rest. Nowadays you can even get someone to come home and train you. Or you can go to an organization like Nightingales Centre and ask for such training.

Keep picking up information as you go along. So, if you are in a hospital, take that opportunity to ask the nurses to show you how some task is done. Or if a nurse or doctor comes home for a visit, or a physiotherapist comes, ask them.

And you don’t need to wait to be trained. Keep picking up information as you go along. So, if you are in a hospital, take that opportunity to ask the nurses to show you how some task is done. Or if a nurse or doctor comes home for a visit, or a physiotherapist comes, ask them. Ask things like, how do I check for dehydration, what do you mean by skin elasticity — whatever you think may help. Whatever you have in your mental list, keep picking up whenever you can.

Don’t overwhelm yourself and overdo this. There are many things you may never need to learn because they might not be required for the person you are caring for. This is a process. The person keeps changing so what you need to know also changes. Keep learning what you need. You will see that the more you learn, the easier it becomes for you to modify yourself and learn more. You become better and faster at picking up new things.

DCN: In late-stage care, families have to remain alert about medical problems so that they can call a doctor or rush to a hospital if needed, or cope with minor problems themselves. In any case, they have to share their observations with the doctor when explaining a problem. What can home caregivers learn to help them with this? First aid? Other things?

Dr. Hegde: First aid training is good to have, especially CPR and the Heimlich maneuver. Learn how to check the vitals — pulse, breathing (respiratory rate). And blood pressure, if you have a machine. Understand the difference between slow breathing and rapid breathing.

One important thing to learn is how to ascertain the level of alertness of the person with dementia.

One important thing to learn is how to ascertain the level of alertness of the person with dementia. Check if they open their eyes spontaneously when you call their name, watch for their reactions when you speak and to painful stimuli, to the sounds around them, and so on. Based on these observations, the doctor will be able to ascertain their level of alertness. You can say, yesterday she was opening her eyes when I called her name, today when I’m calling her name there is no response. Yesterday when I pinched her, she withdrew her arm, now today she’s not withdrawing it. She’s not wincing on painful stimuli. This sort of information helps doctors understand the situation better; they can then correct medication levels and decide their course of action.

Being able to detect dehydration is also useful. And you may also need to learn some basic tasks like doing a PR (per rectum) examination or giving an enema.

Of course, you may need to learn other things later, like using a nebulizer or an oxygen tank. You can pick these up as and when they are needed.

Another thing: keep some basic medicines and a first-aid kit handy, along with necessary numbers (doctors, ambulances, persons who may help).

DCN: Which late stage problems can be handled at home and which need a trip to a hospital?

Dr. Hegde: It depends on the sort of problem, the investigation and treatment involved. Obviously for radiation and chemotherapy type of things you need a hospital. But for many things it depends on what you can arrange for at home.

Suppose someone has high fever and has not responded to antibiotics. The doctor may want to check for pneumonia. Can you arrange for a portable X-ray or will the person have to be taken to a hospital for the X-ray? Or for treatment—do you have support to give IV antibiotics at home?

Many services are now available for home-based nursing and medical care, so this depends on which city you are, the cost, distance, and convenience and such things. For example, in some places, you can even arrange to do dental work at home. Some home health companies bring a dental chair and clean the tartar and plaque at home. Some even do tooth extraction at home.

DCN: Thank you, Dr. Soumya Hegde, for this basic introduction to setting up the home for late-stage dementia care!

In Part 2, we discuss how to get medical attention, stay in touch with doctors, and cope with deteriorating medical conditions and related decisions.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 1 of our 6-part interview series on late stage care. Other interviews in this are: Part 2: Getting medical advice and preparing for decline, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, Part 5: Eating/ swallowing problems, and Part 6: Tube feeding and related decisions.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers]
Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates

Vijaya is a Mumbai-based qualified accountant, who set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life, and the heart-break and decisions and dilemmas involved. [note]

Please tell us about your father’s medical problems in the last year of his life, and the overall care arrangements you and your sister used to support him.

My father passed away in June 2011 at the age of 80. He had developed dementia caused by Binswanger’s disease and multi infarct (vascular dementias) for over 12 years, and he also suffered from other medical conditions like hypertension, age related arthritic conditions, and later UTI and heart arrhythmia. My mother, and later my sister and I took care of him over the years.

My father was not ‘bedridden’ for most of what turned out to be his last year of life. Had we allowed him to, he would have loved to stay in bed. He was very weak physically but was awake for many hours during the day, and also in the night. Sometimes he would not sleep at all for a couple of days and later compensate by sleeping all the time and then he had to be woken up for bath time, mealtimes, etc. (sometimes he would even fall asleep during his bath 🙂 ).

Usually when he was awake, my sister and I would walk him around the house 2-3 times a day. He used a walker, and we had to physically support and assist him as he walked. During the day, we would seat him near windows. From one window he had a view of a road and from another, he could see a garden. Also, for some hours, especially at mealtimes, we seated him in front of the TV because he usually liked watching cartoons.

All housework and caregiving was shared between us sisters and we maintained a very sterile environment to keep him in good health. I had suspended my career and returned to India so that I could stay at home all day.

All housework and caregiving was shared between us sisters and we maintained a very sterile environment to keep him in good health. I had suspended my career and returned to India so that I could stay at home all day. I took care of the housework and the daytime activities of caregiving. Usually my sister would spend time in the evening with him after she returned from work; she would feed him dinner, give him his medicines, and put him to bed.

In 2009 we had decided against having any outsider come into the house, and this reduced the incidences of his catching every passing infection. However, in the last year of his life, he still suffered from severe constipation, uncontrollable hiccups, epileptic seizures, heart arrhythmia, and aspiration pneumonia. Despite our doing our best to take care of him, he fell down a few times either from sitting position or in the toilet, and once from his bed. Though he did not suffer any fractures, these incidents shook him up.

Please describe how your father progressed from mid-stage to late-stage and how his dependence increased.

His decline was so gradual that it is difficult to say when he actually reached “late-stage”.

In 2003-04, three years after his initial diagnosis, he displayed idiopathic laughing, crying, and hallucinations. Though this behavior did not worry us, the doctor noticed it during a regular check-up and prescribed some medications that made him zombie-like. This necessarily meant that he needed increasingly more help with his daily activities.

Then in April 2004 he suffered a fall and had a hip replacement surgery after which he was largely bed bound for many months. He was like a doll that needed to be washed, dressed, fed, and exercised. After the medication for his idiopathic laughing/crying was withdrawn in 2005-06, his cognition improved greatly but his physical dependence continued. He could do nothing on his own. Everything had to be done for him, like brushing his teeth, cleaning after toilet, giving him a bath, dressing him, spoon-feeding him, walking him around the house, and helping him to exercise (as explained by the physiotherapist). He did not even know he had to ask for water if he was thirsty. We had to remember to give him water from time to time and make him sip from a glass we held. He was not even aware that he needed to hold the glass and take it to his lips. He would just let go of the glass if we let him hold it.

But his improved cognition meant that we were able to have small conversations with him, i.e., he would give responses on some days and these were considered and thought-out intelligent and even humorous responses. On other days, when he could not respond, he would just remain silent. He never initiated conversation.

Then, just like that, one day in 2009 he stopped speaking. We realized he could not speak any more. Perhaps he had suffered an ischemic stroke in the night because he also started drooling that day. He could still nod or grunt his responses on good days (i.e. he understood speech) but could not speak anymore. His swallowing difficulties also started then. He would frequently swallow the wrong way and have painful fits of coughing. This was also the time we started to give him pureed food because he would not chew and would just hold food in his mouth and spit it out after some time. Also he started showing an exaggerated startle response, not only to loud noises but also if someone spoke in a normal tone in a quiet room. He started fearing strangers. Though he seemed confident about responding to my sister and me, he would not respond to the untrained ayahs we hired for help at that time.

After my sister and I started doing all the caregiving ourselves, we found him far more responsive than he had been with hired ayahs, though his dependency levels continued to increase.

After my sister and I started doing all the caregiving ourselves, we found him far more responsive than he had been with hired ayahs, though his dependency levels continued to increase.

Your father was admitted to the hospital for some problems. Could you describe the problems, his stay, and the overall experience?

In the last few years my father has been in and out of hospitals many times. We found a lack of understanding of dementia in all the hospitals we took him to, but the staff at some hospitals was more receptive about understanding dementia than staff at other hospitals. Some hospital staff were downright disbelieving about his dementia when we explained it to them. Perhaps this happened because he always looked well-dressed and presentable, and no one could make out something was wrong without interacting with him.

One common problem we faced was that the nursing staff had no idea how to deal with someone who could not understand and would not co-operate, but even then they would not allow caregivers to be present

One common problem we faced was that the nursing staff had no idea how to deal with someone who could not understand and would not co-operate, but even then they would not allow caregivers to be present alongside when treatment had to be given to the patient preferring instead to get wardboys to hold the patient down. He would try to fight off nurses trying to put in a canula or draw blood for tests. He would get agitated even with a blood pressure cuff being slipped on his arm unless one of us held his hand and told him what was going to be done and that it was okay because it was treatment and we were watching. We usually had to request the doctor to give instructions to the nurses to be allowed to be with father when injections were administered, when a Foley’s catheter was inserted, or a bladder wash was done, when blood pressure readings were taken, or nebulisation was given. Such instructions had to be repeated to the new nurses whenever their shift changed. Also, whenever a new doctor was given charge of my father’s care, we would have to convince this new doctor to instruct the nurses to allow us to be with father. This whole process would have to be repeated all the time.

The problem (the inability of staff to handle dementia patients, and hospital rules about not letting family members accompany patients) was acutely felt by us when my father was in the ICU, because the security guards did not allow us inside the ICU except during visiting hours, telling us it was against the hospital’s policy. We again needed the doctor’s intervention.

In one instance, my father had been asleep for over 72 hours continually and the doctor advised us that someone should constantly talk to the patient to wake him. So we were allowed near his bedside. But the ICU had no seats so my sister and I took turns to stand next to him all day for the rest of the week to keep talking to him in an attempt to wake him.

Had we not been proactive in our supervision of the treatment given, our father may not have received the treatment as prescribed.

Even though we had some excellent doctors who communicated very well with us and clearly wrote down complete instructions, many a time nursing staff did not follow instructions either correctly or completely. Some forgot or did not understand the written instructions and some did not even understand English or Hindi. Had we not been proactive in our supervision of the treatment given, our father may not have received the treatment as prescribed. We did, however, come across instances of excellent nurses who went the extra mile to make my father more comfortable.

My general observation was that regardless of how grand (read expensive) or not the hospital, the staff in charge of patient hygiene (ayah/maushi, ward boys) uniformly displayed apathetic behavior. They were not sensitised to patient’s comforts. They did as little as they could get away with, and they did it as cursorily as possible and only did the work after being asked to repeatedly.

After various experiences we had over the years, we decided that we would provide care at home for as long as possible and not move my father to a hospital unless unavoidable, because it was easier to handle all the work at home ourselves than to supervise the hospital staff. When my father needed IV injections, we appointed a nurse to come to our home and administer them.

Still, we did have to take him to hospital when he had status epilepticus in May 2011 (a neurological condition where the brain is in a state of persistent seizure).

My father was admitted to ICU, and the doctors discovered he had developed aspiration pneumonia and started the treatment for this also. He had always suffered from constipation, but during his time in the ICU, he had not passed any stools for over 10 days. None of the medicines or enemas worked. Even so, the nurses kept up with his nasal feed every 2 hours, resulting in his stomach getting bloated. We had to plead with the doctor to reduce the feed interval to 3 hours and also to allow me to do a manual removal of the stools.

At the hospital, the location of the IV device had to be changed daily as the vein would get damaged. My father’s arms had swollen up and he would cry out in pain during bolus injections. We were told his veins were very brittle so the IV fluids filled up in his arms making them look swollen. Despite his thin frame his arms looked very fat and his hands resembled rubber gloves filled with water. Even doctors said the swelling would diminish in a few days but as this was causing him a lot of pain, we specifically wanted something be done for immediate relief. Only on such insistence did the head nurse ask for glycerine and magnesium sulphate and apply bandages dipped in this mixture over his arms. Overnight, all the swelling came down as water seeped out through the pores on his skin.

When my father had recovered enough to swallow liquids on his own without the nasal tube, we got him home.

While we made sure he never had any bed sores at home, each time he was discharged from hospital he would have developed bed sores. The last time in May 2011 he had multiple nasty sores which we would meticulously clean and dress every day. After about 10 days they healed.

What sort of major decisions did you and your sister need to make with regard to the medical choices during the hospital stay? How easily was information available, and how were your discussions with the doctors regarding these issues?

In November 2010, my father developed severe hiccups. These hiccups were continuous, unstopping even when he was asleep. I timed it as one every 12 seconds. Home remedies gave relief for extremely short spans of time. As he was unable to eat or drink due to the hiccups, he had started getting dehydrated and this only made it worse. So he had to be admitted into hospital. The readily available muscle relaxants did not work. The doctor wrote down some other medicines which were not available at all anywhere in Mumbai. The GI specialist advised us that he would have to place a PEG (percutaneous endoscopic gastrostomy) laproscopically or a jejunostomy tube surgically so he could be fed and when the nutrition improved the hiccups would cease. These are both “feeding tubes” that allow food to be poured into the stomach/ small bowels directly. The doctor spoke as if these involved just a simple procedure and were nothing to worry about. He did explain these briefly but we were not convinced about the maintenance of such a tube and all that it involved so we did not agree to it immediately. We just asked for more time to think over and decide.

The doctor spoke as if these (decision to place a PEG) involved just a simple procedure and were nothing to worry about. He did explain these briefly but we were not convinced about the maintenance of such a tube and all that it involved so we did not agree to it immediately.

Luckily, with all the IV fluids and muscle relaxants he had been given, father had finally fallen asleep without hiccups, so we got him discharged and brought him home by ambulance. Though the hiccups continued intermittently, the muscle relaxants prescribed helped a great deal.

Researching on the Internet we found that PEG is usually suggested for patients who are unable to swallow, such as patients with throat cancer. These patients are able to use the feeding tube themselves and because their mental faculties are intact, there is no danger that the patients will get confused and pull out the tube. We read that bedridden patients who are put on this PEG have to be fed a special diet. We also read about how important it is to keep the tube and surrounding area on the stomach clean, and ensure proper dressing of the tube site, because otherwise the area can get easily infected. Additionally, with PEG, patients were at a risk of aspiration, bleeding, and perforation.

We tried to find out more about jejunostomy, where a tube is surgically inserted through the abdomen and into the jejunum (the second part of the small intestine). The jejunostomy would guard against aspiration because it feeds directly into the small bowel but we read about the danger of bowel obstruction and ischemia. Also my father was on anti-coagulants so we were not so convinced how well this would work for him.

We also read about another important issue related to the use of feeding tubes. We may have to take a decision to stop feeding if the patient were to go into a coma.

We also read about another important issue related to the use of feeding tubes. We may have to take a decision to stop feeding if the patient were to go into a coma. After thinking about it, we realised this was not a decision we were ready to make if the eventuality arose.

Also, from what we understood, there was no guarantee that we could prolong my father’s life by using a feeding tube but the use of such a tube would definitely be a situation where his quality of life would be poorer. He would most probably be in pain, would require many hospital visits, for the surgery, for removing the sutures, for changing the dressings, for changing the tube if there was a problem with it. He might tug on the tube and pull out his insides (shudder). On the whole he would not be happy and it was important to us to see that he was as comfortable as he could be.

On another website that discussed end-of-life stages, we had read that the body starts winding down slowly by requiring less food and water so that the process of death is pain-free. (The phrase commonly used on such sites was “active dying”). We wondered if we were to actually force feed him through a tube (because he wouldn’t be able to refuse or spit it out as he did with oral feeds) then we might actually be causing him more pain at the time of death under the mistaken belief that we were helping him.

So we decided against placing a feeding tube (no PEG and no jejunostomy). He recovered slowly, progressing from being able to take some liquids to a stage when he could resume eating semi solids.

The last time he was admitted to hospital was in May 2011, when he was suffering from “status epilepticus” (epileptic seizures that did not stop until medical intervention). The ICU in-charge advised us that they may have to put him on ventilator if his breathing weakened. We clearly expressed our displeasure with this. Luckily, it was not required in his case. We had had unhappy first-hand experience of using ventilator in my mother’s case.

My mother had been my father’s primary caregiver. In 2005 she suffered from pyelonephritis and was on antibiotics for some weeks. One day she developed fever, had severe flank pain and vomiting so my sister admitted her to hospital. After four days of giving her painkillers and saying the pain would settle down and not to worry, the hospital transferred her to ICU and put her on ventilator because she had developed septicaemia and had basal creptitations. This was done without even informing my sister who was waiting outside the ICU. The ET tube in my mother’s throat was causing pain and my mother was fighting it, so the nurses had tied her hands to the bed rails. My mother couldn’t talk anymore but she was gesturing that she wanted it out. I arrived from overseas only the day after she was put on ventilator so she could not even speak to me. They kept her mildly sedated, but each time she woke up her eyes were filled with fear and pain. She developed ARDS and died the second day after my return. We did not want my father to undergo the same torture.

One point that I wish to emphasise here is that in all our experiences with doctors over the years we were able to ‘discuss’ on equal footing (i.e. without being cursorily brushed off as laypersons) only when we had done our homework (with knowledge garnered from the Internet) that showed we could understand medical issues and treatments.

One point that I wish to emphasize here is that in all our experiences with doctors over the years we were able to ‘discuss’ on equal footing (i.e. without being cursorily brushed off as laypersons) only when we had done our homework (with knowledge garnered from the Internet) that showed we could understand medical issues and treatments. When we were ignorant of some issues or exhibited any hesitation, doctors uniformly gave us patronising responses that were not sufficient to understand the treatment being given. They did not actively help us to understand enough to make a decision suitable for our situation.

What was your father’s state at discharge time?

The last time we brought him home from hospital, he had to be brought up in a stretcher and laid on his bed. He had lost all strength to even sit up, but once he realised he was home in his bed he was more relaxed.

He was in a very weak state due to the severity of the seizure he had suffered. Also, the anticonvulsants were at a higher dosage so he was mostly asleep and had to be woken up to be fed or given medicines.

We regularly massaged his back and legs with ayurvedic massage oil, and after some weeks he was able to stand up with assistance and transfer to a chair placed next to his bed.

Please describe how you handled care of your father at that stage. What were the major activities to be done, how did you handle them, what did you have to learn for that?

He could no longer stand on his feet (even with support) for some weeks after discharge from hospital. Whether this was the consequence of the status epilepticus episode or incorrect manoeuvring of his lower limbs by one physiotherapist while in the hospital (he had cried out in pain when she did it), we do not know. We had to resort to physically lifting him for transferring him to his chair or bed, or taking him to the bathroom. Luckily he had always had a thin frame and towards the end weighed less than 40 kilos.

Meanwhile, his bath time was changed to evening as I and my sister decided I shouldn’t do this on my own. My father always loved a nice hot bath. So we used to sit him in a plastic chair and pull the chair into the bathroom and give him a good wash.

He had lost many teeth in the last few months. He was already not able to rinse his mouth or spit out water. Earlier, I used to brush his teeth when he was in his bath chair so I could wash his mouth out even if he didn’t rinse and spit. Now with the changed bath times, I had to resort to the hospital method of cleaning his mouth with cotton, gauze, and Clohex.

A couple of years ago we had purchased a recliner that he loved sitting in. Alternating him between the bed and the recliner helped distribute the body weight differently so the bed sores he had developed in the hospital healed soon with treatment. Also his head would bend too much to the right, almost touching his right shoulder, and this probably gave him a painful neck too. We used a neck pillow and rolled up duppattas to function as support on his right shoulder to keep the head in a more natural position.

Food was as usual liquid or semi-solid and fed to him carefully, spoon by spoon. He was dribbling more than before. We powdered all capsules and tablets using a mortar and pestle, and mixed this powder in a syrup and fed to him while holding his head straight.

His problem with constipation continued. Purgatives, laxatives, enemas, suppositories were of no use. He could not strain so sometimes his anus would remain dilated for hours without passing the impacted stools. He had been prescribed a very high dosage of laxatives. Still toilet times would run into hours at the end of which all 3 of us would be exhausted. We frequently performed a manual removal of his stools to ease his discomfort.

How supportive or otherwise did you find the systems around you at this stage?

Let me give one example to show how difficult it was to get what we needed to care for my father.

We wanted a wheelchair for him that would suit our requirements. My father had a tendency to lean to his side when seated and fall off any chair unless he was secured with seat belts we had fashioned ourselves.

Unfortunately we did not find a single wheelchair in the city of Mumbai that fit these specifications. On the Internet we did find a factory near Chennai that manufactured something similar, but my father passed away before we could get it for him.

How was your father responding to you and your sister throughout this? Please describe any special emotional moments/ incidents.

My father had specialised in non-verbal communication. He would blink his replies ever so slightly even when he would be staring into the distance and he would never answer the same question twice. So we had to be very careful about noting his response! But in the last couple of months, even such replies were rare.

Sometimes I would lean over and place my cheek close to his mouth so he would give me a small peck on my cheek, and then I would show him the other cheek, he would give me a peck again…

While he sat in the recliner, we would sit on either side. Sometimes father would slowly reach out and pat our arms when watching TV or having his food or if we were just chatting with each other. Sometimes I would lean over and place my cheek close to his mouth so he would give me a small peck on my cheek, and then I would show him the other cheek, he would give me a peck again, and for the third time I would show him the first cheek. Sometimes he would comply and sometimes he knew I was being silly and he would just not respond :).

My father, though incontinent, would sometimes not pass urine for an entire day. Before bedtime, we would ask him to do so because we needed to change the condom catheter and urine bag. Often he was able to comply, which proved that he could still understand what we said.

In the last few days of his life when he was unable to stand up, one day after picking him up and putting him in the chair, I was out of breath and stood up straight to take a deep breath. He just started bawling out loudly. He had earlier sobbed like this only on the day when he realised that my mother had died. They were gut-wrenching sobs. Though I instinctively felt he was crying out of fear of what was to come, I consoled him saying, we are doing the massage with the oil so he would will be able to walk again, don’t worry, we will take care of you, etc. He understood that I was trying to console him and stopped crying. But it did show how much capacity of comprehension was still in him though he was unable to talk or to respond to us.

We always told him he was the best appa in the world and on the days he could comprehend, he would smile back. Singing his favourite songs always brought tears to his eyes.

Please describe his last few days and how you coped with them.

We thought he was getting over the health slump because in his last week, he showed some improvement physically and in his responsiveness. After his daily exercise and massage, he was able to stand on his feet for a few minutes (with support). We even started walking him to his chair instead of carrying him. We had actually reverted back to the pre-hospital visit routine of caregiving. I thought things were finally getting back to normal. In fact, I tried to schedule a dentist appointment for him on the Sunday before he died.

He developed ‘purpura’ – bleeding spots under the skin. There were spots on his chest, hands and even soles of his feet had black and blue spots. I just took them to be bruising that may have happened accidentally though I couldn’t think of when they may have occurred. I later read somewhere that this is an end-of-life sign.

What finally caused his death, and how did you handle those last few activities?

Cardio-respiratory arrest is stated on his death certificate as cause of death.

Working in the kitchen that morning, an irrelevant thought came to my mind as it always did each year on 21st June – ‘Benazir Bhutto’s birthday’. I used to bathe him in the afternoons because it was warmer then. The rest of the day was unremarkable. Around 7pm he had his drink of Complan. My sister came home later around 7.30pm. He did not smile but looked at her intently. His face was flushed but we didn’t think much of it. She would usually sit and talk to him before she went in to freshen up. That day, she decided to shower first before sitting down with him.

I was busy working at the computer and he was watching TV. Around 8pm when I went to adjust him in the recliner, I found him gasping/snoring/shivering. First I thought he was asleep and feeling cold so got him a blanket. Then, he didn’t wake when I moved him and his lips were turning blue so I started blowing air into his mouth. I did not know how to do a proper CPR (cardio-pulmonary resuscitation, the emergency procedure to restore blood circulation and breathing). I asked my sister to take over and started calling the doctors. No one was able to come immediately. So I had to call the ambulance.

We wasted over an hour waiting for medical assistance. Meanwhile I took his BP and it had fallen to 54/40. We kept calling to him, blowing air into his mouth, gently massaging his chest. Only at that time we did not know that we also had to do chest compressions. Soon there was a long pause in his heart beat. But we persisted with our efforts and when his heart beat returned there was a tremor in his whole body. His face was ashen.

hey waited to get the stretcher upstairs and then transfer him to the ambulance. All this while, they did not do any CPR.

By then the ambulance arrived. The medics came up with just a stethoscope. We had to stop the CPR and step back to allow them to look at him. Further CPR was not continued. When I asked if they had oxygen, they said it is available in the ambulance. They waited to get the stretcher upstairs and then transfer him to the ambulance. All this while, they did not do any CPR. In the ambulance an airway was put in his mouth and oxygen with face mask was administered. There was no heart beat registered. Once in the ambulance, the medic constantly gave him chest compressions. The hospital was a half-hour drive away and all the way the monitor showed a flat line. I wish the medic had carried an ambu bag (used for pumping air into his lungs) at least, if not adrenalin when he came to the house to attend to our emergency call.

At the hospital as usual we were asked to wait outside the doors. Finally at 11pm the resident doctor came out and wanted to speak to a male relative. I had to say that he had to talk to me only but he remained silent.

At the hospital as usual we were asked to wait outside the doors. Finally at 11pm the resident doctor came out and wanted to speak to a male relative. I had to say that he had to talk to me only but he remained silent. So I had to ask him if they could get a heartbeat and he answered in the negative. I asked him if he was dead and he said yes. I had to keep probing for what next. They said he was dead before admission so we would have to take him away for post mortem to a government hospital by a private ambulance. I had already called up the cardiologist and kept him informed all the while. He arrived soon enough and issued his own death certificate sparing us the post mortem rigmarole.

We wanted to donate his eyes and asked the hospital to arrange for this. They would not. They wanted us to take him away to a government hospital and call the ‘sanstha’ ourselves.

We wanted to donate his eyes and asked the hospital to arrange for this. They would not. They wanted us to take him away to a government hospital and call the ‘sanstha’ ourselves. We couldn’t be bothered with the hassle of it at all as it was after midnight. We informed our relatives who insisted that we leave him in the morgue overnight because they were not able to come immediately. At that time we were like robots and did as instructed and without thinking. In hindsight, we feel it might have been better to bring him back home for the religious rites. We still feel we did not do justice to him at the end as he was a very religious person.

Before the ambulance arrived that late evening, it did not even cross my mind that my father was actually dying. I just thought it would be another trip to the hospital and I had quickly packed the usual items required for overnight stay there. I wish I had paid more attention to the signs, recited a few shlokas and given him the ganga jal that one well-wisher had already supplied us a bottle of.

Our one consolation is that his death did not occur in a hospital where we were not allowed by his bedside. He had died at home, with us around him, even though we did not realize it when it happened.

After spending so many years looking after him, and with such intensity, how did you cope with his absence? How did you come to terms with the loss, and start building up your life again?

At first, it seemed unreal. In the days following his death, even as I was out shopping for the items required for the after death rituals my mental alarm would go off and tell me that I had been out over 2 hours and he was alone and would need me. Then another thought would remind me that he had died and I did not have to rush back.

Now that I had no more caregiving to do, I missed it terribly. I missed the routine. I missed his company. I missed having someone to speak to during the daytime, even if it was as superfluous as telling my father, “Look at that tree” or “There is so much traffic today”.

After the rituals, the relatives departed and suddenly there was nothing for me to do. I had chosen to suspend my career to stay home and be a caregiver. Now that I had no more caregiving to do, I missed it terribly. I missed the routine. I missed his company. I missed having someone to speak to during the daytime, even if it was as superfluous as telling my father, “Look at that tree” or “There is so much traffic today”.

I feel guilty that I did not know about chest compressions and that I totally forgot to give him Sorbitrate which may have saved him that day and also not having had an oxygen cylinder handy.

All these years we never really considered his dementia as an illness – just as an altered state. So I did not actively look for help online for dementia. Only after I missed him so much and began replaying all those years in my head, I realised that we should have done much more and sooner.

Looking back, how do you think this whole caregiving journey has changed you as a person? How has it changed your life and priorities? Now that caregiving is behind you, what of it remains prominent in your mind?

In the early stages of my father’s illness I was an impatient person. I had had fights and arguments with him that I now realise were totally unnecessary. I may have contributed to his increased stress levels at that time. Only over time did I realise that my father was trying his best to cooperate and he could not help his condition. I wish I had known all this at the start so I would not have so much to feel guilty for now.

At first I was not particularly happy being home all day but this was a necessity and also my duty to my family. I was squeamish about some things that caregiving involved and it took me some time to grow into it, to accept it and to think nothing of it.

Before I became a caregiver, I was responsible only for myself. I was career-oriented, and needed to fulfil all my wants and desires. Then father’s condition worsened and caregiving was a circumstance that I had to accept. At first I was not particularly happy being home all day but this was a necessity and also my duty to my family. I was squeamish about some things that caregiving involved and it took me some time to grow into it, to accept it and to think nothing of it.

Death has touched me twice, both times when it was least expected. When life is so unpredictable, the least one can do is try to make it a comfortable one. I have spent many years in the West and I see no reason why the people living in our country should lack the social infrastructure that exists in the developed world today.

My outlook to life has changed because of these past few years. I am no longer interested in 10 hour workdays and the mad rush that leads nowhere. I want to fill my days doing things I love and things that mean something in the long run.

Thank you so much for sharing this very touching phase of your life, Vijaya, and also sharing so much information.

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews]

Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.

When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law

Neena (name changed), a chartered accountant who left her professional work to look after her mother-in-law, describes the challenges and heartbreak of home care of a bedridden patient with multiple medical problems. An earlier interview of the care (when the mother-in-law was not bedridden) is available here: Caregiving challenges, trained ayahs, depression: a caregiver’s story.[note]

Please describe the circumstances that led to your mother-in-law becoming bedridden.

Ma is now 86 and suffers from multiple medical conditions, including heart problems, osteoporosis, Parkinson’s Disease, and dementia.

Over the last few years, she had become increasingly dependent on the hired help for walking, and also grown very scared of falls. When she was taken for walks or to the bathroom, she often got confused about how to lift her legs to walk, and her legs would get sort of locked, and she had to be repeatedly prompted about which leg to lift, about moving the leg forward and so on. When our regular help went on leave and we had a substitute helping Ma, this substitute did not know how to handle Ma at such times, how to coax her to walk and so on, and others had to help. Multiple instructions often confused her even more and she would completely stop movement and her body would become stiff. Getting her to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times and this was a huge task as Ma had become heavier with absolutely minimal exercise!!

It was around that time, that one day we had just come back home from a lunch when the ayah was screaming for help. Ma was in the process of walking back to her bed from the bathroom. My husband, me and my kids rushed to her room to find her about to fall with the maid hanging on to her and unable to manage to keep her upright. She was foaming at the mouth, breathless and trying to vomit! Her entire body was shaking, perhaps a combined effort of the stress and Parkinson’s Disease. We managed to get her onto a chair which was now kept halfway from the bed and bathroom door. She was gasping for breath and collapsing. We realized that something was majorly wrong. My husband carried her to her bed and we made her comfortable. Later we realized after talking to the doctor that she probably had a stroke at that time!

Then one day, very unexpectedly, Ma tried to get up on her own and fell down at 4a.m. We still do not know what exactly happened, but whatever Ma did was very silent and deliberate. Her bed clothes were folded neatly to the side and she had perhaps tried to walk to the loo, her memory totally blank that she was now unable to do that unattended. She fell headlong with a heavy thud. The attendant, a very competent and sincere person who never slept off on her night shift, realized what happened only when she heard Ma fall.

Ma’s head was bleeding, and though we tried to stop bleeding, the wound on the head, which started as a small one, seemed to swell and form a large bump. We called for an ambulance and took Ma to the hospital.

It was only in the hospital that we learnt that Ma had also suffered from various fractures and dislocations, all on her left side. Her shoulder and wrist bones had fractures. Worse, the head of her femur had come out of the ball and socket joint and had got dislocated from the socket, and lodged itself elsewhere.

The doctors refused to operate on Ma to set things right, given her age (“she’s too old”, I was told) and medical conditions. Instead, they placed her on traction. She was in the hospital for some three or four days, a hectic and expensive stay, and we were expecting that the stay would be continuing till Ma improved. Ma was now completely bedridden and on traction, a 3 kg water weight tied to her ankle and kept in place with a crepe bandage.

Then, one day, the doctor told me I had to take Ma home and take care of her at home.

Please describe how you prepared your home for the care of your bedridden mother-in-law. What did you put in place before bringing her home from the hospital?

I was stunned and overwhelmed when I was told that I would have to take Ma back home in that helpless state with traction and tubes sticking out of her, and that I would have to take care for her at home. I had no idea what such care involved. She had a Ryles tube in her nose, a catheter and a traction.

I was stunned and overwhelmed when I was told that I would have to take Ma back home in that helpless state with traction and tubes sticking out of her, and that I would have to take care for her at home. I had no idea what such care involved. She had a Ryles tube in her nose, a catheter and a traction.

One morning, I go to the hospital, expecting another “normal” hospital stay day, and the doctor calls me to say that I have to move Ma out of the hospital immediately because he had to go out of town, and he did not want her to stay in the hospital in his absence. He felt more hospital stay would not help Ma anyway. Treatment was expensive, and nothing more could be done, and the doctor said that if he was not there and Ma continued in the hospital, the other doctors would place her on ventilator and all that, which would not help. I finally agreed that I needed that day to make arrangements and would take her the following day.

The doctor who insisted that we take Ma home was the physician who had been handling Ma’s care for over four years and knew her well. The orthopaedist at the hospital also concurred with his view that she should be taken home. In a way they indicated that she did not have much time so we agreed.

I had no option but to get ready for home care within a few hours. It was a huge challenge.

The next several hours were really very tense and busy. I asked the doctor what equipment I would need and used a contact number he gave to reach an equipment supplier. I needed to buy an air mattress (to prevent bed sores), and to hire a hospital bed and an oxygen converter (an equipment that converts water to oxygen, which was needed as Ma was having breathing problems and may need to be given oxygen ). Prior to this, I hadn’t even known what such equipment looked like, why they were needed, and how they were used. There was no time to find out about other suppliers or compare quotes or brands; I needed to get these things right away, and was extremely relieved that the supplier I had contacted was helpful. I later found out that he was the sole supplier in such a huge city.

I spent the next few hours talking to an assistant in the orthopaedic department, trying to find out what I needed to know. I tried to understand what exactly traction did, how it helped in fractures, and so on. With Ma on traction, it would be impossible to turn her for weeks altogether, and I was clueless on how we would maintain her hygiene and prevent bedsores. Or, given that Ma was on traction, how much should I crank up the bed to make her upright given that her femur had been dislocated. I kept asking the assistant questions, and was lucky that the assistant answered my questions patiently and in detail. A male nurse gave me some detailed and practical advice on how to handle the actual hygiene part, cleaning up soiled parts, changing sheets, clothes, etc., positioning pillows and so on.

A male nurse gave me some detailed and practical advice on how to handle the actual hygiene part, cleaning up soiled parts, changing sheets, clothes, etc., positioning pillows and so on.

These were very packed discussions, but at the end of them, I was slightly more comfortable about handling the care. I don’t know what I’d have done if the assistant had been less helpful. God bless him.

The other problem that needed immediate work was actually setting up home for Ma.

Ma’s room already had plenty of furniture — a double bed, dressing table, and so on. There was no place to fit a hospital bed. I rushed home and tried to get a carpenter to dismantle the existing double bed, but was unable to find a carpenter, so I requested a couple of drivers working in various apartments in the building to move the bed to a side, and also move around the rest of the furniture. Later, I discovered that they had broken the bed while moving it.

The equipment supplier, fortunately, kept his promise and was prompt in sending the bed and other equipment. By evening that day, Ma’s room was ready.

My husband had to go to work the next day as he had several important meetings and I had to get Ma discharged and get her home. As we finally got her onto a stretcher to take her to the ambulance she screamed in pain and I could not stop the tears that kept coming. What would I do? How could I handle her and not give her any pain? A passerby saw me and was probably wondering at my insanity in taking such a patient home. But I told myself that I would be happy to have her home in her last few days and did not really want her to die in the hospital. Honestly I did not know what I was thinking. I just knew I had to go ahead.

Ma was home, bedridden, installed on an air-mattress on a hospital bed, in a room hastily prepared for her care. We already had enough plastic sheets and some other required supplies, so that was a relief.

Ma had been placed on catheter for her urine, and a Ryle’s tube had been inserted through her nose directly into her stomach for her feeding, because she was supine and could not be fed through her mouth. Because of these, I could not handle the work alone or with the help of a normal attendant; I needed a nurse. The physician understood my dilemma and my plight and extended all help. He arranged for a nurse immediately.

It was only later that I realized that the physician had not expected my mother to live for more than one or two weeks…

It was only later that I realized that the physician had not expected my mother to live for more than one or two weeks, and even the orthopaedist had been sure that the chances of her surviving beyond four weeks were extremely low.

It is now over four months since that happened, and Ma is still very much with us.

Please describe some of the challenges you face in the actual care for your mother-in-law.

There were plenty of glitches in the beginning. We had a nurse for the day shift, and a full-time help also, because moving Ma on the bed, or cleaning her, could not be done by one person alone. But the first nurse we got used to sleep off, and it was after a couple of days that I realized that she was working the night shift in the hospital and then expecting to work the day at my home and earn some more money; naturally, she was sleeping instead of working. She would also stand on the bed to haul Ma up roughly, and I had to find a replacement.

Friends came in to help and I got an excellent nurse agency who sent me a very competent nurse. I was thankful for such mercies and thanked God and my friends.

…one day, the traction contraption moved, and the nurse said she would undo and redo the crepe bandage to correct it. To our shock, when we opened the crepe bandage, we saw a very large and ugly wound there.

A major problem we faced was because of an unexpected complication in the traction. Ma had a crepe bandage to keep the ankle frame in place. Nothing was said about this in the checkups the physician and orthopaedist did at home in the first few weeks. Then one day, the traction contraption moved, and the nurse said she would undo and redo the crepe bandage to correct it. To our shock, when we opened the crepe bandage, we saw a very large and ugly wound there. It was awful. It was nauseating. I almost threw up right there. Ma had always screamed when we would try to move her, but we hadn’t known that this was also because of this awful wound.

The doctors said that with such a wound, continuing with the traction was not possible. Though Ma’s hip was still not okay, the traction had to be removed. Yet, even after we removed the traction, and though we are regular in cleaning and bandaging the wound, it has not healed. The whole area is black, which is unhealthy because we have no idea what lies underneath, and the damage could be reaching the bones, and we have no way to stop it. One of our additional activities now is cleaning the wound and bandaging it using sterile bandages and so on, as advised by the doctors. But we still don’t know how serious the damage under it is, and at what rate it is growing. All we know is that Ma is in great pain whenever we move her, partly because of whatever is there in this area, and partly because of the unhealed hip (which will probably never heal now because we cannot place Ma on traction).

We also face challenges in managing Ma’s Ryle tube and her catheter. Ma would keep pulling out the Ryle tube with her right hand, which was free. She would first remove the bandage securing it, then slowly pull it out when no one was watching, for example when the attendant had gone out for her lunch or to have a bath or something. We had to tie her hands with a soft cloth to the railing for the short durations when we were not in the room. Once Ma removed the Ryles tube after the nurse left and so had to go without feeds till she came back. I don’t know how we passed those hours! Now, a new nurse has found a better way of fixing the tube in place and Ma does not try to remove it as often. But there are still complications, like sometimes we see some sediment in the tube, and once there was blood.

Once Ma removed the Ryles tube after the nurse left and so had to go without feeds till she came back.

Because Ma does not take any food or liquid through her mouth, her mouth remains dry, and we have to make sure we moisten it. Her lips sometimes become red and swollen, and it looks very alarming.

The catheter also causes problems at times. Some of the nurses sent by the agency are not very skilled at handling it. Keeping Ma hygienic in spite of the catheter requires special attention. Diaper rashes occur sometimes. We have to be very alert all the time because of all these complications.

Does your mother-in-law communicate her needs to you or the attendant/ nurse?

Ma has Parkinson’s, which means that her head keeps bobbing, and even her eyes keep darting around, and we cannot make out what object she is looking at. She cannot focus her eyes, and one eye seems to constantly move to the ceiling. This makes it difficult to know what she is thinking about, or what she wants.

Mostly, Ma is unable to express her needs. She screams when we try to turn her or clean her, probably because of the unhealed fracture and also the wound in the ankle, and we can do nothing about these two problems. We do need to move her to prevent bedsores and also take care of the hygiene, and we also need to make her sit up slightly sometimes, and she is obviously in great pain every time we try to do that. Sometimes, she manages to say that we should let her alone.

When I sit with Ma, she sometimes grips my hand hard and tries to speak. She may blurt out something, which I may or may not understand. If I coax her to talk, or ask her to explain, she is usually unable to answer.

Most of the time she does not communicate, but there have been some occasions when she has not just said something, but amazed us with her clarity.

Most of the time she does not communicate, but there have been some occasions when she has not just said something, but amazed us with her clarity. Then she lapses back into silence for days again.

Please share how your mother-in-law interacts with you and other family members.

Earlier, when Ma was still talking, my children used to always peep into her room before going to school to tell her they were going, and she’s wish them well and say, God bless you. They continued to do so after her becoming bedridden, but things had changed. Ma was obviously finding it very difficult to bless them, and she would struggle to talk, and that would take time. It was very disturbing for the children to see their grandmother struggle to say her usual God bless you, and Ma would also look very distressed that she could not speak. The children could not keep waiting too long, as they would get late for school. Over time, the children stopped going to say goodbye before leaving for school.

My daughter is very emotionally attached to her grandmother, and would often go in to talk to her, hug and kiss her. But I notice that the child looks very disturbed every time she emerges from Ma’s room, and has reduced her visits. I think seeing someone so helpless and in such pain is very distressing.

My son, who is younger, is more uncomfortable because of what he calls “too many wires” around his grandmother.

Ma is often sleeping, anyway, and even if someone goes to her room, the chances are that they will find Ma asleep. My husband often finds that he is unable to catch her awake, though he tries to talk to her when he can, especially just before he is going out of town. However, because of the situation, his visits to Ma have also reduced. Seeing her in pain, unable to communicate, is very difficult for all of us.

I stay at home and coordinate her care, so I end up spending the most time with her. Often, when I see Ma struggle, I get very disturbed.

But there have been some special occasions when she has managed to connect with us…

Can you share some of these special moments?

Sure.

Ma was always very particular about celebrating birthdays and giving gifts on birthdays. Recently, for my son’s birthday, I bought a card for him on her behalf and wrote her name on it, and we waited for her to wake up so that she could give it to him. She finally seemed alert enough in the evening, and we called in my son and told Ma it was his birthday. I gave her the card to give it to him, saying it was his birthday. Ma actually took the card from me, said, Yes I know, and held it out to my son. My husband then asked her whether she’d wish my son, and Ma not just wished him, she actually sang the line Happy Birthday to you a few times! It was absolutely amazing.

Another time, my husband told her he was leaving town for a tour, and she surprised us all by asking him when he would be returning. He told her. She then put out her hand to shake his hand. He shook hands, and told Ma, Take care, and she replied, Take care.

These sort of moments are very rare. After them, Ma slips back to her uncommunicative mode for days, but for those few moments when such things happen, it seems to us that she is just the same, that there is nothing wrong.

And then she is back to her silence, only screaming in pain, or saying garbled things no one can understand, or looking at me and grabbing my hand, and being unable to speak.

What about other close relatives? How have they responded to this situation?

My husband has an elder brother, who was informed of the deteriorated situation the very day when Ma fell down. The brother (who resides in another city in India) asked us to show him Ma on Skype after we brought her home, but he has not managed a visit to see Ma in the last four months.

My husband’s elder brother gets in touch once in a while with my husband to get status updates on Ma but has not yet asked us how we are coping.

My husband’s elder brother gets in touch once in a while with my husband to get status updates on Ma but has not yet asked us how we are coping. When I contacted one of his children on a birthday to wish her, the child asked me how I was, and I said, you know your grandmother is not well, so things are difficult, the child said, oh ya, my parents were saying something happened, what happened? I don’t think the children have registered the magnitude of the problem Ma is facing. Perhaps it is because they are at a distance, and hearing about something is very different from experiencing it up close.

We heard from a relative that my brother-in-law felt that, “What’s the big deal about what they are doing for Ma? Everyone looks after parents. And why are they spending so much money, why can’t they just get someone from a village and train her? That’s how people do it.” This relative told him, “Do you even know what it takes to look after someone like your mother?” and suggested that he come and stay with us for a few days to see what caregiving was like, and how much skill it took. Unfortunately, my brother-in-law has not yet managed a trip to see the situation and judge for himself.

We feel let down by my brother-in-law’s reaction. I don’t know whether this reaction is because this whole situation is so alien and uncomfortable to him, or whether he underestimates the entire situation and its impact on us but whatever the reason, his contact is minimal. His wife also has not called to ask me how I am coping.

Ma has noticed the absence of her eldest son. She sometimes calls out his name when in pain, but when I ask her about it, she clams up. When I asked her, do you want to speak to him, she said a firm NO. I asked her, are you angry, and she again said, NO. On Ma’s birthday, when this son called, she did not utter a single word. I think she senses something and feels hurt.

Tell us some more on what a day’s care involves.

Ma usually doesn’t’ sleep at night, but dozes off in the morning, and many times during the day. We do not wake her up if she is sleeping.

We feed her 50ml of liquidized food, milk etc. every 2 hours through the Ryles tube. Other activities include the diaper change, sponging, etc. All such activity tires her and she sleeps off again. Movement is painful to her, but we have to do that to the extent needed for preventing bedsores, feeding her, or cleaning her.

Usually, when we try to visit her, she is sleeping, but I do manage to see her awake at times. She may hold my hand and try to talk, as I explained earlier. Because of her Parkinson’s, and her constant moving of her head and eyes, it becomes very difficult to communicate. She is usually not coherent enough for me to understand what she is saying.

How are you managing all this care work? How do you coordinate it, and get whatever you need for it?

I have two persons working with Ma; one is a nurse who works from 8am to 8pm, and one is a full-time attendant who lives in that room. We need two persons as Ma cannot be moved by one person given her fractures and also her Parkinson’s. Also, a nurse is needed because there are many nursing tasks like cleaning and bandaging, handling the Ryle tube and the catheter, and so on.

Sometimes, even though there are two persons, I need to help in the physical work. Sometimes, when one of the two hired carers are on leave, I have to participate more actively. Ma has to be held on one side by one person while the other does the cleaning, but because Ma’s bones are broken, her body is crooked and contorted, and she also slides on the bed, and we have to straighten her and pull her up, while trying not to hurt her too much.

I also have to make sure that these two hired carers (nurse and attendant) get their required meals and tea and biscuits in time.

We have other household help, too: a maid for the cleaning and cooking, and a driver. When this household maid is on leave, I have to do the housework not just for the house, but also for the nurse and attendant employed for Ma’s care. For example, the cooking. While our family may have handled the absence of the household maid by eating out, because of the nurse and attendant, I have to make sure complete meals are cooked for each mealtime, and there are also the intermittent tea and biscuit breaks. It gets very tiring and frustrating for me.

Ma’s care requires a lot of supplies. Our chemist who earlier did not keep such supplies, now maintains stock for all we need, like urobags (where the urine collects for draining out), catheters, diapers, Ryle tubes, syringes of various sizes, all sorts of sterile bandages, etc. Care for Ma is also very expensive, currently costing us almost Rs. 70,000/= every month. It is so high partly because Ma needs so much equipment and supplies, and trained attention including nursing attention. It is possible that if I had the time to look around and compare prices and suppliers, I could get some supplies slightly cheaper, but where is the time? Also, the agencies supplying attendants and nurses charge very high, but it is so difficult to get proper help and again, how can I go about looking for it, and how can I risk trying out new things with Ma being in this state?

The presence of two helpers all day long is also intrusive in our family life. They jabber and chat all day, and I sometimes have to tell them to be quiet, there is a patient in the room…

Tell us more about how this caregiving and responsibility affects you.

As I said earlier, the doctors had not really expected Ma to live beyond a few weeks. When, after a couple of months, the orthopaedist heard that Ma was still alive, he said I must be doing a really great job of caring. The physician said something similar. To me, these were not compliments. All I wonder is, did I do right, am I doing right by taking such good care as to prolong her life, when she is in such pain and so dependent. But on some days, when she talks, it seems that I am doing the right thing.

Often, I get really disturbed watching Ma. Earlier, Ma was very particular about remaining well-groomed; her sari was always properly draped, and she was always trim and smart. Seeing her defenseless and dependent now, being undressed by others, sometimes lying there like that while the nurse and attendant arrange the sheet or clean her and all that, makes me wonder what Ma must be feeling; how does she handle it?

…as I stay at home and coordinate her care and am directly responsible, I cannot stop going into Ma’s room because I am distressed. I have to help in all the activities often, and even when I come out of Ma’s room, that scene keeps running in my mind.

When Ma screams in pain, I feel very emotionally disturbed. Others in the family also find her state distressing, but they can reduce their interactions. However, as I stay at home and coordinate her care and am directly responsible, I cannot stop going into Ma’s room because I am distressed. I have to help in all the activities often, and even when I come out of Ma’s room, that scene keeps running in my mind.

Just a few days ago, I came out and sat on the living room sofa, switching my mobile to silent, unable to think or do anything. I just stayed sitting silently for a long time. When my husband came in after a while from work, he thought I’d slept off on the sofa, but I had just been numb.

At one point, I reached a state when I felt I could not handle it, and I briefly even thought of using a nursing home, but the few I visited were such dismal places, I felt I can’t put her there, and that I would be able to manage it better at home.

The helplessness of caring for someone in this state, and the way it has taken over my life has left me feeling inadequate in many ways. I recently developed the carpal tunnel syndrome, and found I could not even chop vegetables. The cook/maid was on leave, and I had to hire someone to come in to chop vegetables and make roti; she charged Rs.1000 for that, and I felt very helpless and incompetent. Just a few years ago, I was an excellent multi-tasker, managing my career, the home, and my kids, and staying cheerful, and now I could not even chop vegetables!

I know I cannot afford to remain like this, and so I have taken up walking regularly and I do Buddhist chants to calm myself. These help. In fact, my husband often reminds me to go for my walk, and I think it is because he knows that I will be frustrated and in a bad mood if I do not take my daily walk. Also, to my surprise, some of the ladies in adjoining apartments joined me in my walks , and were very supportive about what I was doing. Everything has helped me keep my sanity.

Recently, I also took on a short management consulting assignment in an NGO and it really helped me feel useful and competent again.

What about the future? Have you and your family discussed how you will handle further deterioration in your mother-in-law’s state?

We have talked about it, yes. None of us want Ma to be in pain. On one level, when we talk of it, we all say that we do not want to prolong her misery.

But I am really not sure what we will do when there is an illness or emergency.

At that time, would we not feel, as her children, that we must do whatever we can? My husband is her son, and won’t he want to rush her to a hospital and do whatever the doctors advised, even if it seemed to prolong her life in her state of agony?

…if something happens, I think, in spite of our distress at her current state and unwillingness to see her suffering continue, we will end up taking her to the hospital.

I do not want Ma in pain, and while I am taking care of her to the best of my ability, rationally, I feel I am willing to let her go. But if something happens, I think, in spite of our distress at her current state and unwillingness to see her suffering continue, we will end up taking her to the hospital.

It is very difficult to know what we will do when the situation arises.

Any final words?

Very often I have wondered what could Ma have done so wrong that destiny had so much pain written for her . Not only physical but emotional too. I have been married for nearly 25 years now and have always seen Ma bending backwards to please family and friends, to be helpful and stand by them in need. Then why this….. And as a mother myself I cannot fathom the pain her heart feels knowing that her elder son and her favorite always has not bothered to come and see her and comfort her. Nor the three granddaughters who she loves so dearly. The only consolation sometimes is that she still has family and grandchildren around her and we have given her something to be happy about. Her eyes still light up when she sees the kids.

Thank you very much for this detailed interview, Neena!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews]

Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.