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.

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.

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.

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.

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.

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.

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

Some hospital staff were downright disbelieving about his dementia when we explained it to them.

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.

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.

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.

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.

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.

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.

…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.

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.

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?

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.

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.

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.

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.

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. After thinking about it, we realised this was not a decision we were ready to make if the eventuality arose.

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.

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.

…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

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. 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?

Though my father was emaciated, the effort required to turn, change, wash and dress him, etc., was telling on my back.

After getting him back after his hospital trip in May 2011, his care routine at home had to be changed somewhat. Though my father was emaciated, the effort required to turn, change, wash and dress him, etc., was telling on my back.

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.

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. …. 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.

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.

So any wheel-chair we got for him needed to have arm rests that were high enough to secure him and prevent him falling over, and sturdy so as not to topple. We also wanted it to have a removable seat that could function as bath/potty chair. And we did not want the chair to have sharp edges like many cheap imported chairs do.

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 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.

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.

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.

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.

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 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.

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.

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.

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.

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 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…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.

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?

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”.

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.

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.

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 … 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.

…I see no reason why the people living in our country should lack the social infrastructure that exists in the developed world today.

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.

« When I see Ma struggle, I get very disturbed: a daughter-in-law describes the caregiving for a bedridden mother-in-law Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts »

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.

8 thoughts on “Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates”

  1. Dear Vijaya, I am a daughter and presently a solo caregiver for my dad who has dementia. I am deeply moved by your experience and hope to be guided by it. Thanks and God bless

  2. I left my job 4 months back to look after my father-in-law. Every day just flies by without me realizing it. Thanks Vijaya for sharing your story.

  3. I feel changed after reading the experience . My “aunti ” is suffering for this disease and i have seen the pain family suffers while taking care of patients and that too for the extended periods .

    Vidyaji and her sister both have done ( from the interview – it is very clear) super-human efforts and it was a great service showing path to other care-givers .

    anil

  4. The detailed account of your father’s illness really helps us understand the progression of this disease — big thanks for sharing.

    My dad is suffering from dementia and he has been bedridden for the past 4+ years. My sister has been taking care of him at home, using nursing help. But now, my dad has started aspirating and he needs constant medical care. As you know, none of the hospitals are ready to take him for medium to long term – there is no hospice care in India. Hospitals in India don’t want to help when we need them the most !! A few days ago, with the help of our doctor we finally found a place for him to be taken care of for a few months. We just are hoping and praying that he is kept comfortable.

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