Decisions around elderly care

It’s been a tough week, where my siblings and I had to face the inevitability of old age and what it entails for the elderly.

Up until August 2021, no matter what the situation of my mother’s health was, she continued being the decision-maker in the family, the glue that held our dysfunctional family together and continued making our house a home for all of us.

With her collapse, both physically and mentally, our stability was uprooted. The fact that I was able to fully focus on work previously was because I did not really get involved in any household decisions or responsibilities. My mother looked after them all, from basic chores, bills, food supplies to house maintenance etc.

Following her treatment for COVID and diabetes, she was discharged on September 3rd with the movement in her legs and arms regained as well as her speech restored, though she was not able to speak much and it was with great effort that she did so. When we left the hospital, she was still not able to lift her head up since her vertigo had increased with her recent illness. Her legs were also too weak to hold her up. So, she was mostly confined to her bed though she managed to get up to use the bathroom a couple of times each day, with my support. A week into my full time home care of her, she started declining again. I was worried that it was due to her limited fluid intake. I had been trying to increase her fluid intake with great difficulty and had managed to get it up to 1000 ml per day (inclusive of all semi-solid meal intake). The fact that she took only about 25ml at a time increased the difficulty and I had to continuously make little doses of different nutritious fluids and give them on an hourly basis to make up the daily 1000ml target. Back home, she started complaining about the tastelessness of those nutritious drinks such as ensure, diabetasol, vitagen and I had to continuously try different mixes or insert these powders into a few spoons of soup. It was particularly difficult in the nights as that was when she seemed to struggle the most from her limited fluid intake and initially, I had to continue giving the fluids every hour in the night as well or else her face would start getting numb, especially her mouth, and then her hands and legs. It was at such times that I guess my patience as a carer was tested a lot. Especially since I was also tired after the stay at the hospital and had not really had a proper rest or time to recover. I remember once that a nutritionist had adviced me to give stuff she liked, no matter the nutrition content – things like pudding or jelly, that would encourage her to take in more food. I had told her one night that some friends had sent boxes of jelly that evening and I would make some for her the next day. It had somehow reached her mind and at midnight, when she woke up and asked for a snack, she specifically asked for jelly. I replied that I had to make it and would do so in the morning and in the meantime, to drink something else. Since she looked very disappointed, I mixed the jelly powder with water and put it in the fridge to set. Half an hour later, she woke up again and asked for jelly. I replied that I had put the jelly in the fridge to set and it was still a liquid. She said that it was ok to give her the jelly water. I gave her a little to taste. She wanted more. Since I was quite exhausted and not in a mood to argue further, I gave the whole jar to her, thinking it was at least some form of fluid intake. She drank it all. At moments like these, you realize that your responsible parent is more of a child in her elderly years. During the day, no matter what I tried to tempt her with, she wouldn’t take in much but at nights, her requests used to be difficult to meet ones and especially ones, that she would not be able to intake any way due to her swallowing and chewing issues. I had a request for rice and curry one midnight and pol roti another midnight, despite the fact that she has not had either for years. Since her meals have mostly been soups and porridges, I had stocked up on those and my brother and I mostly subsisted on instant noodles and other stuff ordered through ubereats. So rice and curry was not available. Anyway, the next morning, I cooked rice and made a vegetarian curry with a couple of vegetables that was there in the fridge. She refused to eat it during the day and after much coaxing, tasted a couple of spoons and said it was horrid. I felt like all the times I might have given my mother trouble as a toddler, being a picky eater, was coming back to me now, when our roles were reversed.

However, I had managed to get her intake to around 1000ml per day, when she started reducing her intake on September 13th. By evening, she completely stopped intake of fluids and would shake her head when I offered anything. She was no longer talking to me as well. By morning, I was so frustrated that I told her that I had had enough and was not going to take care of her anymore but to just drink what I offered then and I would call my eldest sister to deal with her thereafter. Still she did not respond.

My eldest sister, who used to be basically the second in command, when it came to family decisions and was instrumental in supporting my mother with my recovery, when I met with a road traffic accident back in 2005, was herself a patient this year. She had neglected a wound and the fact that she had diabetes contributed to the situation escalating to the point that she had been taken to the hospital in an unconscious state back in April 2021. The doctors at the hospital had declared that if we were to save her life, her leg needed to be amputated followed by a strict control of her diabetes. My brother in law and we had consented to the amputation as we felt that my sister’s life was more important than a loss of her limb. She was just beginning to come to terms with her limited mobility and was being fitted with a prosthetic leg and undergoing physiotherapy to get her used to that leg, when my parents became ill. As initially, there was a COVID situation involved with my parents, we had requested that my sister or her husband should not come visit as she was in a fragile health as well and we were keeping her in a bubble till she regained her health. However, with my mother not responding to me at all, I spoke to her and she decided to come and see my mother. On September 14th, she came with my brother in law in her wheel chair, but my mother was not responding to her beyond nodding her head or a brief yes, whenever my sister called ‘Amma’.

I then called our family doctor and he asked us to bring in my mother immediately to the hospital. So I brought her back to the hospital. The rapid antigen test for both my mother and I was negative. However, as she had a high fever and her pulse oximeter reading was 88 , when it was taken at the OPD, they wanted a PCR also done. So temporarily, Amma was admitted to the isolation room at the entrance of the COVID ward. They immediately put her on a drip, upon learning that she had not had any fluid intake for the past 24 hours. Her blood sugar this time was 400, a huge increase when compared to the critically low amount when she was previously admitted. They did a number of tests and said that she had an infection, which they were trying to find the source of. The PCR test result came out negative and she was moved to the regular ward room. The nurse who was helping to clean up my mother and change her clothes, before the ward move, asked me about a wound on my mother’s left toe. I said I had not noticed it but that she had kept saying that she had sharp shooting pains in her left leg followed by numbness over the past few days. The doctor asked the surgeon to have a look at it as they thought that it might be the source of her infection. They also put her on an antibiotic course.

She was by now back in her senses, and somewhat aware of her surroundings, and able to recognize me again. She also was able to speak a little with a lot of effort, but I was the only one able to understand her as her words were muffled and running into each other.

At this point, the doctor was saying they were ready to discharge my father as they had done all they could to bring down the keratin levels and he was able to talk and sit up a little, but not get up or walk. We were told that we had to strictly maintain his diet and other factors to ensure that it didn’t increase and require another round of dialysis.
Given that I was at the hospital with my mother, and my brother had already been stretched trying to manage his work on reduced hours, daily visits to the hospital to take care of my father’s medical bills, laundry and other needs, we felt that we were not able to give the attention and care my father needed at this time especially as his condition needed close monitoring, which my mother had previously done. So we explored a few nursing homes and explained to him that it was a temporary move and that we would shift him back home once things were set up. My father agreed to it but on the day, he was discharged from the hospital and transferred to the nursing home, he asked me not to leave him at the nursing home and to visit him frequently.

It was a difficult moment because taking the decision to move him to a nursing home was in the first place a difficult decision that my siblings and I took as a family. We didn’t initially want to do that but we recognized our limitations and realized that my brother and I could not provide him the critical care he needed at the moment. It was not a simple matter of getting a male attendant to be with him and ordering out meals. There was so much more involved, the right diet and meal plan according to his dietary restrictions, medications and injections to be given at the right time in the right doses, constant attention to his needs. My father is also quite a difficult and demanding patient to manage, and my mother’s neurological issues had worsened because of the stress and lack of self-care that resulted from her hands on care of him during the past few years. My brother and I needed to return to full time work, after some time off in the past few weeks. Both our workplaces had been supportive and even though it was a critical time at work for me, where I was responsible for a few key initiatives, my line manager and team helped to take forward some of the work. However, there was some key work that I had to work on myself during the coming couple of weeks and it was the same for my brother. So we could not provide that hands on attention that my father needed. We also needed time to sort out how his different requirements could be addressed from a home care setting and organize them.

The staff at the hospital we were at, were very critical and offended though. One nurse came to give my mother her regular antibiotic injection and started demanding me in a hostile manner why I was sending my father to a nursing home and why I could not look after him. She then repeatedly asked if I was working and whether there was no one else at home. I understand that in the Sri Lankan culture, it is not a practice that people accept. Care of elderly parents are the responsibility of the children. However, I think each family situation is different and the different complexities that go into making difficult decisions is something only that family will be able to understand. The nursing home we selected for my father’s temporary stay is attached to a private hospital and has 24 hour doctor support, nursing staff and attendants to look after my father. He has his private room, with air-conditioning, and a large TV. Relatives have taken turns to visit him each day and when he spoke to my mother and I over the phone yesterday, he sounded happy and also in much better health and clarity of mind than he was during the one month stay in hospital and previously at home.

I have been with my mother in hospital this week, during her second stint this month, and trying to get the doctors to examine and address underlying issues than simply addressing blood sugar fluctuations and pressure fluctuations. Yesterday, I requested the family doctor that he bring in Amma’s neurologist, who treated her when she originally had a pontine infarction back in 2006. I also requested a diabetic nutritionist so that I could consult her on a suitable meal plan that addresses her nutritional necessities, while considering her eating style and restrictions and health issues. Finally, I requested that a specialist have a look at a couple of wounds, that I am cautious of after my eldest sister’s experience. From loss of consciousness to slow understanding of environment, my mother has now improved to the stage where she is able to talk coherently to me. She has also started taking an interest again in what my siblings and I are doing and asks us about our work and has started encouraging me to work from the hospital. I actually started working part time from the hospital today. Over the past few weeks, when her condition was critical, she was not in any state to think beyond her immediate pain and discomfort. However, what we are trying to address this week before we return home is to ensure that she is able to sit up and move about a little, despite her vertigo.

There will be a period of adjustment to our new normal – with both parents requiring close attention and care. Hopefully we will be able to ride through this storm as well and emerge at the other end.

Reflections during a stressful time

The world collectively has been facing the pandemic since 2020 and many have gone through and continue to go through some stressful times because of the virus.

All these months, I thought I was taking as much precaution as I could to keep my elderly parents relatively safe even though I continued to go into work for most of this time. I was focused on business continuity at work, humanitarian response and working on the strategic plan for the next three years and trying to facilitate staff wellbeing initiatives.

August 2021 changed this perspective.

First, my 77 year old father had another return of his cellulitis, which has been a recurring visitor for the past two years and each time before we admitted him to the hospital, they would do the rapid antigen test and only admit him after the result turned out negative. This time, on August 18, our neighbourhood hospital was full so his doctor asked us to bring him to another private hospital that he visited. It was with great difficulty that my brother managed to find an ambulance to take my father to that hospital and there, they immediately did the rapid antigen test. This time though, the result was positive. The hospital immediately turned out my father and brother out of their premises. My father was completely immobile by this time, was confused and unable to speak and this hospital turned him out onto the road. For the next couple of hours, my mother and I tried calling all the private hospitals to check for space to admit an elderly COVID patient with health complications. Every one of them stated that they do not admit COVID patients. They only had interim COVID centers, in partnership with star hotels, that allowed for isolation of the patient in a hotel room. Medical treatment was not provided at these hotels/ interim COVID centers and the patient was expected to be able to fend for themselves. Further, they did not accept elderly patients or any other patients, who needed medical treatment. The ambulance that had dropped my father at the hospital had left and it was another two hours, before we were able to get that ambulance back. It was night time, and curfew time was approaching, and we had no choice but to bring him back home. After a sleepless night, where my mother tried her best to get my father to have something to eat and drink, we decided that it was best to move him to the government hospital that his doctor had suggested, as he was in urgent need of medical attention. So the next morning, my brother took him to the nearest government hospital, admitted him to the COVID ward and returned home. What he found in his subsequent visits to the hospital was that my father was not being treated for cellulitis and continued to remain unresponsive. So we pleaded with his doctor to get him a space at the private hospital in my neighbourhood, that we always go to, and we managed to get him transferred to this private hospital in a few days.

Then, my 71 year old mother started having a low fever. My brother and I were fully vaccinated but not my parents. We had registered for the home vaccine service for the elderly, who had mobility issues but though my father used to get up each day and await his vaccination, they didn’t come until after he was admitted to the hospital. Learning that my father was infected, they said that it would be better not to vaccinate my mother at this time as she might also be infected.

Since it was a low fever, and the state that the hospitals were in, we decided that Amma should stay at home in isolation and rest. I bought a pulse oximeter and monitored her oxygen levels regularly and it was normal. Then, suddenly, on saturday, Aug 28th, morning, Amma had difficulty getting up. It took her two hours to activate her hands and feet and mouth, but she slowly got up. At times when she struggled to move her hand or feet during those two hours, I would suggest she not try so hard and to rest a bit. She would insist she needed to get up to make me a cup of tea. When she did finally get up, she asked me to help her go to the kitchen, where she made me a cup of tea. I wanted to take her to the hospital that day but she refused. For anyone who knows my mother, s/he will be well aware of her stubbornness and determination once she makes up her mind. I therefore called for the home PCR test service and had her do the test, so that in the event we needed to take her to a hospital, at least delays related to COVID testing would not be there. The whole day, she was able to walk around the house and do her usual stuff so I decided I would closely monitor her and decide the next day, on whether to admit her to the hospital. That was a mistake. On Aug 29th, I woke up later than usual around 6am and checked on my mother and apart from her breathing, she was not moving at all. I tried calling her and tried moving her hands, there was no response. Her eyes were wide open but she did not see me nor was she present. That was the scariest moment of my life. My brother asked me to make her some sugar solution but she was not drinking it. The PCR test result was emailed to me around that time and the result was positive.

Then began the next round of nightmare. Since the private hospital that my father had been transferred to was full, and no other private hospital admitted COVID patients, we decided to take her first to the same government hospital that we had taken my father first to. As I was in shock, as well as the fact that it was usually my mother who packed things for anyone’s hospital stay, I just pushed some stuff of my mother’s into a bag and took it with me in the ambulance. I thought I would be able to come back home, after admitting my mother at the ICU, and prepare better what needed to be taken both for her and me. My brother-in-law called the government ambulance service set up to take COVID patients to hospitals and they came in promptly. We faced some difficulty in getting her down to the waiting ambulance, as the trolley wouldn’t fit in the lift, and my mother’s hands and legs were totally stiff so we could not make her sit in the wheel chair initially. Eventually, we managed to transfer her to the wheel chair, after I coaxed her into bending her knee. At the hospital, after the check-in processes, I was told to take my mother to ward 15A, the point where the COVID admissions were done. There, the doctor who checked my mother’s blood sugar exclaimed it was critically low at 47 and immediately administered a glucose syringe and put her on a saline drip. By this time, she had gained consciousness and even though she was able to say a few words, she was not able to move. The first word that she said was ‘hungry’ and asked me for some food. I did not have any with me and I did not want to leave her in that public, overcrowded area unattended to go in search of the canteen. I asked the staff there for something and they were kind enough to give a juice box. Eventually, we were allowed to go to the COVID ward for women and she was given a bed. The ward had four sections. One large space with around 12-15 beds packed together, a small enclosed space with 3 beds, and a medium space with a couple of beds and the rest of the patients on the floor. Amma’s bed 19 was in the small enclosed space next to the washrooms. On bed 20, there was a woman who was connected to an oxygen cylinder. A little while later, another elderly woman was brought in for bed 18 by her son and an attendant, who promptly left after depositing the totally unresponsive elderly woman on her bed. In the meantime, I was trying to request the few staff there for a pamper because I had not come prepared and my mother was asking me to help her to the bathroom and she could not move. The response given was that they were in the middle of shifting to a brand new ward so all supplies had been moved to the new ward and they did not have any here. It was hours later before the attendant taking care of an adjacent patient, gave me a pamper for my mother and helped me to change her clothes and sheet. No one really came to check on the patients, though nurses seemed to take the pulse oximeter reading at least twice a day and blood checks. The family members caring for the patients were the ones distributing food parcels, water, fitting in the oxygen cylinders for their ill family member etc. The food that was given all three times was rice with curry and it was not considering dietary restrictions or issues that the patients might have. For example, my mother has been on a semi-solid diet for a decade or so as she has difficulty chewing and swallowing and she was not able to get up at this point due to her paralysis. I had kept the straw from her earlier juice box and used it to give her sips of water or tea from time to time. The patients on the beds adjacent to her were either totally unconscious or semi-conscious and not in any position to feed themselves but no one minded that, and simply left the food by the bedside table. It went untouched and thrown later, when new food packs replaced the old ones. I kept mentioning to the rare nursing staff that passed by that the unresponsive woman would need a drip, as she was not in any position to take in food or drink but there was no action taken until the next afternoon. The elderly woman was not even blinking her eye, even though they were wide open and there was no indication that she could hear. So, until and unless a family member or a paid private attendant was with a patient, especially one who was elderly and was not in a position to take care of themselves, their condition declined and some to critical levels.

I also realized how important it is for a close family member to be with the elderly patient. Throughout that day and night, I constantly interacted with my mother which gradually brought her out of her state of confusion, brought back some movement to her hands and feet.

There was no day bed for the carer, given that it was already an overcrowded ward with patients on the floor. I managed to get hold of a plastic chair and wedged it between my mother’s bed and the unresponsive neighbour’s and that was where I spent an uncomfortable night, sitting up. Yet, at that point, I was more worried about my mother’s paralysis and the fact that no doctor was addressing it beyond sending her for a CT scan. The bright lights were all on throughout the night and the hospital staff were very loud, using mikes to address the patients from their so-called safe cubicle. They had this habit of calling patient names, expecting the patient or the carer to go and pick up medicine packets for the patient. So, if the patient was not mobile or did not have a carer, she would not receive her medicines. Around 9.30pm that night, a new patient was brought in a trolley and since they could not take the trolley around to the large space, where there were some free beds, the ward doctor on duty told the attendant to ask my mother to move to the other space. They had no idea that my mother was paralysed and the attendant was insisting that my mother get up and walk around the corridor to the other space. I put on my fighting mode and told them that she was not moving anywhere. Finally, they brought a wheel chair and asked the patient on the trolley to move to the wheel chair and she was wheeled to the other area. The staff on duty was annoyed with my stance though and told the attendant to move my mother to the floor at the entrance of the ward. Again, I stood my ground and said that she was not moving anywhere that night and that as medical staff, they should be sensitive to a patient with neurological issues and who had come in paralysed and suspected to have had a stroke. They finally left us alone.

Anyway, I knew that I was not going to let my mother stay in that ward another night. I sent a text message to our family doctor, explaining what had happened, and to help transfer my mother as well to my father’s hospital. The next morning, he informed me that he had made arrangements and to collect the transfer letter from the hospital and bring my mother over. My brother collected the letter and handed it to me. The ward doctor that morning was a young and friendly one but for some reason, she was hesitant to approve the transfer and kept saying she was waiting for approval from her higher-ups. As the clock ticked by and it became afternoon, I stepped up my queries and tried to identify the bottlenecks for the approval process. I understood that the transfer of a patient from a COVID ward of one hospital to another required the approval of Ministry of Health and that our ward doctor was waiting for this approval, as they had not been able to get in touch with the focal point at the health ministry. Knowing that waiting for them to get the approval was not going to work, I reached out to colleagues who had contacts at the Ministry of Health and finally got the contact number of the focal point. I sent him a text message, as I was told that he was usually too busy to answer phone calls. A colleague suggested that I insist to the ward doctor that as my mother’s guardian, that I was making the call to transfer her to a private hospital and that we are waiving off any of their responsibility. I argued with the ward doctor and a colleague of hers for some time, before they finally agreed to approve the transfer. They said they would only give the discharge card and nothing else. I said, ‘fine’ but I wanted the discharge process to happen without any further delay as I was calling for the ambulance. While waiting for the ambulance, I received a response from the Ministry of Health focal point stating ‘approved’ for the hospital transfer. I showed that response to the ward doctors but they were already angry with me that they said they did not care what approvals I got as they only accepted approvals that came from the official process. Finally, around 8pm, we reached the private hospital on the same road, where we lived.

From the point that we reached the private hospital, utmost care was taken of my mother by the medical staff and within a few days, she had recovered. The doctor said that he could discharge her on friday, September 3rd, as her paralysis and COVID situation was addressed and the balance of her recovery from severe dizziness and under-nutrition was something that required long term recovery and attention at home.

So over the weekend, I transformed my room to better fit in my mother and threw out all the other furniture and any of my miscellaneous collections. Until she is completely recovered and able to walk about on her own, I am going to continue closely monitoring her condition and coaxing her to take in normal levels of fluids and semi-solid food. From 300ml daily intake on friday, I have managed to increase her intake to 750ml today. While this is still not acceptable levels, considering this is what comprises of her total nutrition intake, at least this is progress for someone who is averse to food and drink.

It is almost like taking care of a child, because every hour or so, I have to coax her to drink 50ml of some nutritional drink (as she doesn’t drink more than that at a time). She has started walking from the room to the bathroom with my support, in the mornings, when she feels a little better.

On my part, it’s been more than a week since I have slept properly or eaten normally. Since her sugar levels seem to be dropping very low during nights and she becomes numb, I need to continue giving her a little drink (Ensure or Vitagen) every hour or so. When I dose off at times, I suddenly wake up at the slightest sound, afraid to face what I did last saturday – an unresponsive, paralysed mother.

I am not who I was a week ago.

Why I decided to write this experience down is not only to get this off my chest, but also to share this with friends and colleagues who keep asking me how I am doing. I am not someone, who talks about my intense personal experiences. I write about them.

Also, I felt it might be useful to share some of my learning with others out there, who have elderly parents with health complications, as well as the rest of those who are observers of people going through similar difficulties:

(1) If your parents are not vaccinated, and your doctor has not adviced them not to get the vaccine, then do push your local vaccine services to vaccinate them at the earliest. This might reduce the severity of COVID effects on them, should they get infected.

(2) Do keep a bag ready at all times, not just for your elderly parents, but also others in the family. In the event of an emergency and you need to rush into the hospital, what are the items that you will need at hand. During the emergency, you have no time to think as you will most likely be in somewhat of a shock.

(3) Do be with your parent, should they be admitted to a COVID ward in a non-responsive state. Without your attention and care, they might not make it back.

(4) For those friends and colleagues, who want to help, please don’t call the person who is going through this until and unless you can offer concrete support. For example, some of the helpful calls I received from colleagues was related to talking to my family doctor, re-emphasizing the need to transfer my parents to the private hospital, another was regarding bringing my mother’s pressure medicines as the government hospital asked me to give the medicine to my mother, but did not provide me with them and I was not allowed outside of the COVID ward since stepping in with my mother. Other helpful messages that was appreciated was text messages with a warm thought or a specific question regarding how I was managing my meals etc, that I either responded to when I had a minute or not, but still the thought was appreciated. The least helpful and annoying calls and messages from well-meaning friends was calls in the middle of when I was experiencing nightmarish situations such as arriving at the government hospital, being in an overcrowded ward, trying to get some help for my mother and a friend called and asked me, ‘are you ok now?’. This same question was repeated over a number of times before I asked a colleague to inform all colleagues not to call me at the hospital as I was not in the headspace to respond to them. This is a particularly long section of advice but important. Please try to place yourself in the other person’s shoes. Would you want to be called by someone and asked, ‘are you ok/ now?’ when you are busy dealing with a nightmare?

I was not ok and I am still not ok.

I know I will pull through this, and will do what I can to support my mother’s recovery. My father is still at the hospital undergoing dialysis and on oxygen support, as he contracted pneumonia. He didn’t recognize me when I went to say ‘bye’ before leaving the hospital with my mother.

I will be returning to work tomorrow, and working from home for the rest of the month. I sincerely don’t wish to talk about what I am going through personally at work or with friends outside work. So, I have taken the time to write this down to share what I am going through now.

Hope my friends will understand and respect my wishes. I know all of you mean well but I am conserving my energy for what matters the most to me – my mother’s recovery.