Tag: feeding tube

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]

Dementia Care Notes: 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.

Vijaya: 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.

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

Vijaya: 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.

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

Vijaya: 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.

Dementia Care Notes: 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?

Vijaya: 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.

Dementia Care Notes: What was your father’s state at discharge time?

Vijaya: 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.

Dementia Care Notes: 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?

Vijaya: 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.

Dementia Care Notes: How supportive or otherwise did you find the systems around you at this stage?

Vijaya: 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.

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

Vijaya: 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.

Dementia Care Notes: Please describe his last few days and how you coped with them.

Vijaya: 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.

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

Vijaya: 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.

Dementia Care Notes: 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?

Vijaya: 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.

Dementia Care Notes: 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?

Vijaya: 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.

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]

Dementia Care Notes: Please describe the circumstances that led to your mother-in-law becoming bedridden.

Neena: 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.

Dementia Care Notes: 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.

Neena: 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.

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

Neena: 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.

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

Neena: 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.

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

Neena: 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…

Dementia Care Notes: Can you share some of these special moments?

Neena: 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.

Dementia Care Notes: What about other close relatives? How have they responded to this situation?

Neena: 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.

Dementia Care Notes: Tell us some more on what a day’s care involves.

Neena: 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.

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

Neena: 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…

Dementia Care Notes: Tell us more about how this caregiving and responsibility affects you.

Neena: 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.

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

Neena: 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.

Dementia Care Notes: Any final words?

Neena: 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.