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.
You are such a courageous person Ahila.
Reading your blog enables us to gain strength. Stay strong Ahila! You and your family will ride through this storm.