Empathy in the Face of Dementia: Ali's Story
Background
After she got married and moved to the UK she had the 4 of us; 2 daughter and 2 sons. I was the youngest preceded by my sister Farida. When mum and I moved to the US we lived together and were then joined by Farida about 11-12 years later. By that time, mum had retired and was at home. I moved out when I got married but visited daily when her health problems started.
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When I reflect on the earliest signs that something was not quite right, they appeared long before we recognised them as symptoms. It was sometime around 2018/2019 when I noticed changes in her cooking. She would mix up noodles with pasta and alter recipes that she had been cooking for decades and serving us meals that didn’t match with what she had previously done. I didn’t connect this with ‘dementia’ but just questioned why she was doing things differently. I also noticed that her energy levels dropped and she spent a lot of her time sitting, watching tv and not reading or knitting anymore. I had assumed that this was because she had heart problems and thought it was due to the heavy medications.
As time went by, there were more behavioural changes. She started having more falls and was less steady on her feet. She would do the cooking later in the day and take short cuts in terms of her recipes. Following her stroke in 2022 she became very confused, disoriented, easily agitated and found it difficult to manage her personal care. There were times shortly after her stroke when she was in hospital and my sister was at work that I had to manage her personal care which was challenging for me.
Her dementia progressed and it was probably when she was mid-stage that she started demonstrating signs of ‘sundowning’, sleeping for most of the day and then up for most of the night when she would want to share stories of her childhood and her life in Bangladesh with her siblings. She would want to get up at 2am and eat or talk and was unable to settle.
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When her stroke happened we went to see a neurologist and he mentioned that she probably had mini strokes before demonstrated by significant scar tissue. It was at this meeting that he diagnosed her as having dementia and it became clear to me why and how her memory, lack of mobility and her ability to manage daily tasks were in decline. I was in denial in the beginning but knew that I had to accept this reality and there was nothing that could be done to reverse it.
Whilst she was given medication to help her sleep, she was not prescribed anything to slow down her dementia. It was at this point that we realised that we were entering a new phase in all our lives, one that would require commitment, love and understanding, not to mention patience.
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My sister Farida was mum’s primary carer as she still lived with her. It was a full-time commitment that required 24/7 care. We were fortunate to have found a carer Diane, who was amazing. She was a true blessing as she was experienced, patient and deeply kind not only to mum but to us too. She became part of our family. Farida arranged her through a government funded program which was run via a church. Diane supported mum and us five days a week until mum passed away in February 2024.
Whilst Diane was a godsend, we had to manage in the evenings, during the night and on weekends. I never thought I would be helping my mum with personal care, but I saw it as a full circle of life – she had taken care of us when we were kids and now, we needed to do the same for her.
There was another occasion when she was in hospital after her stroke and I walked into her room only to see her really distressed, confused and sitting in soiled bedding. She was overwhelmed and pulling at her gown and very agitated. I had to call the staff and insisted they clean her before continuing with the tests they were doing on her. I was broken hearted seeing her dignity compromised like that.
Once she was home we adapted to her needs as best we could. She often slept on her recliner chair as she felt comfortable in it and then we installed a child gate near the stairs. If she wanted to go out, then we or Diane would use a wheelchair. Diane would sometimes take her out for coffee, listened to her talking about her childhood and provided companionship.
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We didn’t really plan for the future. We just took each day as it came. Her dementia progression was gradual and we adapted with it. We all knew that nothing we did would change the course of the disease, so it was a question of accepting it and being present with her with our love and patience. If there was anything we could have asked from the healthcare system in the US it would have been additional support at night so Diane could have rested and we could have managed better.
In the end I think what really helped us was accepting the situation; that it was our responsibility and privilege to look after her like she had looked after us all our lives. She was at the end of the day still our mother and required our compassion and tenderness.