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.

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.

Conflicts in the family over dementia care

Sarla (name changed) lives in the USA with her husband. Her mother-in-law, who lived in India, passed away after suffering from Alzheimer’s for some years. In the detailed account below, Sarla describes the progression of the disease and the care, and how the family’s lack of communication, resentments, and conflicts came to play in the situation. We see the whole gamut of the experience–the initial denial, the spouse hiding the loved one’s problems because he wanted to remain independent and not bother his children, the problems of caring from overseas, the lack of coordination and trust, the clashes and criticisms because of differing perspectives over what care constituted, and what the end-of-life decisions should be. [note]

Sarla gives her conclusions at the end. We, as readers, may draw our own lessons on what we can do in similar setup to avoid the problems faced by Sarla’s family while caring for the ailing mother-in-law.

Coping with Alzheimer’s from 10000 miles away

By Sarla (name changed)

You want to get on a plane and be there but also know it is not feasible every time. You live here and they live there and that is the reality today.

What is it like to monitor a serious sickness of a loved one from 10000 miles away?  You get a call early morning telling you of a problem. You stay awake all night (being 12.5 hrs behind) waiting for updates. You try to hide the panic you feel (everything seems so much more scary because you are not physically there) and stay calm for the parent who is handling the crisis.  You want to get on a plane and be there but also know it is not feasible every time.  You live here and they live there and that is the reality today.

This story is about my mother-in-law and her Alzheimer’s Disease, about her care, and how our family of three siblings, two overseas and one in India, was unable to coordinate her care cordially for her sake.  All the players thought they were doing the best at that time.  It is about choices we all made in our lives and the consequences of those choices.  It is about Amma and Papa’s indomitable spirit in the face of overwhelming health problems. And how Amma and Papa suffered, and the situation shook up and shattered the fragile balance of our family.

My mother-in-law (Amma) was an energetic vital person with a love of life, family and friends.  When she got breast cancer, she fought it with her typical aplomb.  Doctors were amazed at her progress.  When the cancer came back in the bone, she fought it again.  Being a woman of a generation where she was more used to doing things for others than herself, she felt guilty at the money that was being spent on her treatment.  But she retained her fighting spirit.  She loved perfumes and on one of my visits informed me that she had given all her perfumes away as she could no longer smell. The doctors did not have an answer to that.

The first sign of her behavior problems came in Aug 2004.

But before I continue, let me explain the composition of our family. My parents-in-law (Amma and Papa) have three children. My husband is the eldest son; there is another son (my brother-in-law, Bhaiyya, who is the youngest) and one daughter (my sister-in-law, Didi, who is the oldest).  Both the sons live in USA.  Didi lives in Delhi.  In 2004, when the problems were first noticed, Amma was visiting Didi.  Bhaiyya was in India for a visit, which made it a packed house with various spouses and children. Amma got disoriented about where she was.  Bhaiyya took her to a doctor, who did an MRI, found some ‘anomalies’ and recommended some medicines, saying it would help her memory.  Amma refused to have them.  My husband, visited soon after and he, too, was not able to convince her to take the medicines.

But Papa insisted that she was mostly ok and this was just aging. He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry.

When we would call Papa from the USA, he would tell us that Amma was forgetting more.  He told me this when I visited them in Delhi in Sep 2005.  I found Amma to be a little quieter.  She showed some signs of memory loss (asked where Didi  was and then recalled that she lived in another house).  But Papa  insisted that she was mostly ok and this was just aging.  He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry.  Amma was a fun loving person, too.  The three of us drove to India gate and had ice cream.  It was, looking back, the last fun thing we did together.  My husband visited in Dec 2005 and they celebrated the parents wedding anniversary with Didi’s family.  Amma displayed most of her spirit and dry wit.  In spite of the fun they were having, my husband felt that Papa was trying to tell him something, but could not draw it out of him.  When my husband returned to the USA, he told me, ‘I guess Amma is having some memory loss but they are hanging in there’.

In those days, (2005) Amma and Papa were living by themselves in an apartment in East Delhi. Amma was 81 and Papa was 90.  They were tough, independent people.   All through Amma’s cancer treatment they handled the doctor visits to a hospital over 20 km away without help.  This was not a small feat in Delhi traffic.

Before I describe how Amma’s condition progressed, I’d like to digress a bit to explain the sibling relationships here, because these created unfortunate dynamics later and affected Amma’s care.

Didi (my husband’s sister) had a stressful life trying to earn a living for herself and her family by giving tuitions. My husband and I had helped her financially for many years, including financing her children’s education.  This had strained our relationship and resentment was building up towards ‘the rich brother and sister-in-law’ who had nothing to worry about. In their mind we had a perfect life in the US  – quite luxurious, and no financial responsibility as we did not have children.

Bhaiyya (my husband’s brother) lived in the US. My husband had put him through graduate school in the US, and supported his family financially for several years.  So there was the suppressed resentment from his side also towards us.

Around 2005, when Amma and Papa were living separately, and Amma had started showing some signs of disorientation, their face-to-face interactions with the three children were limited.

Didi was living in Dwarka, the other end of Delhi. She visited Amma and Papa about once a month and spent half a day with them. Bhaiyya would call Amma and Papa about once a week and talk for 15 minutes. He visited India once in six years because it was too expensive to travel with a wife and children.

We talked to Amma and Papa at least 3 to 4 times a week.  Papa would stay with the same story about Amma.  When we tried talking to Didi to find out more, she told us they were ‘fine’.  My husband tried telling her that she should take Amma to a doctor for a checkup.  She ignored it and continued with the status quo.

The turning point came in May 2006, when Didi went to an extended family function and saw Amma dressed in a non matching salwar kameez.  This made her take notice as Amma was ‘looking bad’ in front of so many other relatives.  She talked to Papa and the truth started to emerge.  In the last few months, Amma had been unable to take a bath herself.  She had no awareness of personal hygiene and would go out with uncombed hair.  Papa finally told us that she would wake up in the middle of the night and get violent with him.  All these symptoms were disturbing and completely new to us – we did not know what was happening to Amma.

What followed was a traumatic time for the entire family.  It was difficult to persuade Amma to go to a doctor – when she was taken to VIMHANS on a pretext, her first reaction was accusing ‘You people have brought me to a mental hospital’.  She was diagnosed with having Alzheimer’s Disease, something we probably knew at the back of our minds, something my husband had been saying for some time, and I did not want to believe.   Various medications were prescribed for this, the most notable one being Aricept.

It was quite clear that Amma and Papa could not live alone any more.  We managed to convince a very reluctant Papa  to move to Dwarka to be close to Didi. This happened in Dec 2006.  He still wanted to live independently, just be in a flat close by.

The move, though unavoidable, made Amma’s condition deteriorate more rapidly.  She was apprehensive about changing her home.  By the time she got to the new place, she was unaware of her new surroundings.  She stopped recognizing family members though she had some spurts of recognition.  It seemed like the change in environment had impacted her negatively.  There was a paid caregiver assigned to taking care of her and preparing the food.  Papa had taken over supervising the caregiver and managing the house.  Didi visited and checked on them when she could.  We, along with US based Bhaiyya, were paying the rent for the house, and for all the household and medical expenses.

I visited Delhi in Apr 2007.  It was a shock to see Amma even though I had been adequately warned on the phone.   Though she had lost the power of recognition, she could be very animated if someone talked to her.  She lived in her own reality, an extension of the life she had led.  It showed me that if a person in this condition could be kept engaged, their quality of life could be better.  Papa was running ragged but as tough as he could be.  He insisted on taking care of Amma, and giving her the medicines himself, something we were no longer confident he could do.  We had already had an earlier episode of him giving her the wrong dosage.   This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other.  They were living their destiny together.

This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other. They were living their destiny together.

In early May 2007, the paid caregiver left Amma and Papa alone in the house and took off for hours.  Papa tried to help Amma out of bed and they both fell.  As a result of the stress, he had a severe asthmatic attack.  He was always very careful about his health, but his lungs had been getting weaker in the recent years.  They called Didi, who rushed them both to the ICU.  And we got a call, one we would not forget for a long time.  My husband was coincidentally leaving for India in a day (looking back maybe it was fate?).  Soon after he got there, Papa passed away, no longer having the energy to keep going.  He was 92 and had stoically taken care of his wife during her illnesses for over six years.

Until now my husband, Didi, and Bhaiyya had been talking – any resentment between the siblings was well hidden.  Things took a dramatic turn after Papa’s death.  It became about control and stress about assets, though there were not that many assets to fight about.  Papa’s will transferred all assets to Amma, who was unable to act on her behalf.  Their bank accounts did not have any nominees, so were essentially frozen.  Being overseas it was difficult for us to figure out how to resolve this, and Didi had no interest in doing so.  I think she knew we would continue to bear the financial responsibility of taking care of Amma  and eventually their assets would go to her and her two siblings, the direct heirs.  This way her share would not be depleted.  She also probably thought that her brothers would relinquish their share to her as they ‘would not need it’, which probably would have been true had the relationships not deteriorated. It pains me to say this as I write this, but unfortunately we had enough reasons to come to this conclusion.

But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away.

Amma had a bigger setback after the fall.  She lost mobility and now had to be moved to stay with Didi.   Didi had never treated her very well and this was the last thing Amma would have wanted.  But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away.  My husband agonized about it a lot.  I tried to console myself with the fact that at least she was not aware of what was happening to her.  But of course she was, at some level.  A few days after her fall, Amma contracted a urinary infection, developed a potassium imbalance and had to be hospitalized.  After being in critical condition, she recovered somewhat and returned home.  But this time she was unable to swallow and had a feeding tube inserted in her.  All this happened in the space of two weeks after Papa passed away.

Even the doctors started saying that her condition was terminal and using a feeding tube was unnecessarily prolonging her life.  Didi felt that she could not bear to remove it.  To be honest, even today I cannot begin to imagine what it would feel like to have to make that decision.  I can just quote something a friend of mine, who initially worked in nursing in the US, told me – ‘at some point it is not about what you feel and how it would affect you, it is about not making them unnecessarily suffer if there really is no hope’.  As we saw, it was easier said than done.

In the United States, a lot has been written and discussed about end of life decisions, living wills etc.  I don’t think it is that common in India.  Amma did not have one but we knew her spirit – she would never have wanted to prolong her life like this.  My husband felt very strongly about this – he also reiterated that Amma had told him in one of her coherent states (before the fall) that she did not want to live any more.  Since there was no written statement, the jury will remain out as to her exact wishes.  One could only surmise them.

The relationship of my husband with his siblings went progressively downhill after this.  We were the ‘evil ones’ who did not want Amma to live.  In  Jan 2008 my husband visited India to meet Amma. I visited a couple of months later, in March 2008–seeing Amma in that condition was something I would not wish on anyone. My husband made a trip again in early May 2008 by which time her condition was worse.  We also felt Didi was spending money with complete disregard to budgeting, as it was not her money.  Didi accused my husband of being unpleasant and interfering.  It did not seem possible to have any meeting ground, and the brother and sister were barely on speaking terms.

Amma remained on a feeding tube for one year.  It was removed by Didi three weeks before she finally passed away, at the end of May 2008.  It was an agonizing time for my husband and I, but we could not find a better answer.  All the siblings had to agree before something drastic like removing the tube could be done.  We got news of her passing away through a text message – neither Bhaiyya nor Didi had even bothered to call us.

Today, almost three years later, my husband, his sister, and his brother, are still not talking.  The distribution of Amma and Papa’s limited assets has still not happened, as we deal with processing of a succession certificate in Indian courts.  All we want to do now is honor their memory.   Without going into details about this, we feel betrayed by the way Didi handled this affair.

What are the lessons I take away from this?  Would we have done anything differently?  Here are some of my thoughts:

  1. If you have very independent parents, as they age, maintaining their independence versus having them move in with you because they need help, becomes a fine line.  By the time my in- laws desperately needed help, we could not get them their preferred kind of help, and they ended up depending on Didi.  It was too late to have them come live with us.
  2. I am aware that when parents move in with one of their children at a younger age, it poses its own challenges – I hear that from friends.  The younger people feel constrained and in some cases find the older people interfering.  The older people have their own opinions about how the younger ones lead their lives.  Some old people are not very nice to their children and daughters-in-law etc.  It is not always possible for everyone to get along.  But I would hope that most younger people would soften, as they see their parents get more vulnerable as they age, and then want to take care of them.  I was a strong proponent of my ‘independence’ when I was younger.  Today I feel it would be a small price to pay if I could make the later years of the life of my own parents better.  I have also observed from watching friends and relatives who have taken care of aging parents while they live with them, that this ends up being the best thing for the parent though it is of course often very hard for the younger people who are caregivers.
  3. These days, at least in the USA, we have more counseling help available on how to handle an Alzheimer’s/dementia patient.  But when that patient is living with their spouse, controlling the behavior of the spouse becomes equally difficult.  They are the same age group with less control over their responses and reflexes.  There are no easy answers to this.
  4. All personal paid care givers, nursing attendants require tight supervision.  Having them know that they are accountable to a younger person may help somewhat.  Without assigning blame, the neglect displayed by the paid caregiver proved to be a costly one for us.  She felt she had complete control of the house with two old people in it – there was not enough accountability.

    In fact I would say that this whole area of hired caregivers needs to be addressed (a topic for another write-up) – we could have personal online reviews of agencies to start with, for example.

  5. We have to find ways to have parents communicate all their problems clearly early so help can be obtained.  It is very generous of them to not want to bother their children, but they have to be persuaded that letting them know everything is the right thing.    I find that older people get even more diffident in their communication.  In my in-laws’ case, I think Amma and Papa might have been comfortable taking help from my husband and me, but we were far away, so they did not want to trouble us.  They were not so comfortable with their daughter, and their pride and self-respect prevented them from asking Didi for help except in desperate situations.  They were hurt by her indifference and had become sensitive.
  6. As loved ones start aging (I use that term because this could happen to anyone, not only old parents) we need to remain observant about changes in behavior and health conditions.  That may help in detecting problems early.   In Amma’s case, I believe all of us were in denial for some time about an upcoming serious problem.  It is too scary to confront, but somehow one has to find a way to persuade the person going through it, that it will help them.  In her case, given the treatments available today, treatment a year earlier may not have helped the inevitable progression.  But in the future there may be other options.  All the symptoms Amma had were new to us and we learnt as we went along.  We started educating ourselves as we went through it.  Years after Amma reported losing her sense of smell, I read an article describing the fact that this could be an early sign of Alzheimer’s.   It seems like new things are being discovered about this, which is encouraging.
  7. Above, I have included some background about sibling dynamics to analyze for myself what caused the relationship to deteriorate to a point of no return.  Maybe some things are very specific to our family situation.  Though we were not able to, I believe one should try one’s best to keep sibling relationships at a workable level.

End of life decisions, however tough, should be discussed at a time when it is not emotional, which is as early as possible.

  1. End of life decisions, however tough, should be discussed at a time when it is not emotional,   which is as early as possible.  Make a living will by the time you are 50.  Ideally don’t let what happened to Amma in the last year of her life happen to a loved one.
  2. In conclusion I would like to dedicate this to Amma and Papa.  Their indomitable fighting spirit and courage through the ordeals will always be an inspiration to us.

Thanks for sharing, Sarla!

[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.