Lessons in Love: Farida's Journey with her Mum's Dementia
Background
My mother was the eldest daughter amongst ten children from a conservative family in Bangladesh. She often told me that, as the eldest of the sisters she was expected to adhere to cultural and religious traditions, despite not always agreeing with them, and was treated differently from her sisters. When she married and moved to the England in 1969, she lived in various cities but eventually moved to London before she divorced my father.
Mum was independent; she had to be as she need to rebuild her life after the divorce. By then all four of her children were adults other than Ali, my brother. She then moved to the USA with Ali, initially living with him, and then, when I moved there, we lived together. For as long as I can remember, she had a fondness for her hobbies, being creative with her sewing, knitting and embroidery and especially cooking and this continued until two or three years before her passing.
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There were signs of her dementia, but they were not so obvious in the beginning, so I dismissed them as part of the ageing process; she would forget somebody’s name or why she had walked into a room. However, I noticed over time that the frequency of her forgetfulness was more often. Eventually her memory loss affected her whilst she was knitting or sewing. If she was knitting, for example, she would forget where she was in terms of her stitches. This was so frustrating for her, especially as she prided herself on her attention to detail. In terms of her cooking there were changes too. She would add ingredients and prepare dishes that she insisted we had in our childhood which we never had. To me these were signs of her drifting between past and present.
Gradually, her health deteriorated further and after her stroke in 2022, it accelerated. She became more dependent on us, much weaker physically, frail and emotionally quite fragile.
When she progressed to the advanced stage of dementia and towards the end of her life, she would hallucinate, sometimes seeing people who had passed away and thinking that they had come to visit her. This was also a sign that she was approaching the end of her life on earth with us.
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Mum was diagnosed with vascular dementia, in 2021. I had suspected that mum’s symptoms were not just ageing and had discussed this with a cousin of mine who was also a qualified doctor. She suggested we meet with a neurologist and after cognitive tests and an MRI, it was confirmed that mum had early-stage vascular dementia. However, the stroke that occurred the following year expeditated the progression of the disease so rapidly that by 2024 she was already in the advanced stages of dementia when she passed away.
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Throughout mum’s dementia journey I was her primary carer but for obvious reasons I needed support. I was working full-time and mum needed someone with her whilst I was at work. Ali helped but he worked too, so was unable to be with her during the day. Initially I tried procuring carers through a website, but they were unsuitable. They were untrained, didn’t pay attention to mum and on one occasion burnt mum’s food while she (the carer) was distracted on her phone.
Diane came into our life through a church organisation and was a godsend and blessing. Her own mother had dementia, and she had cared for her alone, so she understood mum’s dementia journey. She was compassionate, patient and showed genuine love towards mum. She was mum’s companion and confidant, not only trusting her, but also sharing memories and secrets that she had not shared with us or anybody else. Diane also helped me as she guided and prepared me step by step through every stage informing me of what to expect on this journey. I know that I would have been lost without her.
Mum believed that there was no need for her to attend any of the local dementia support groups as she had a close- knit circle of friends and her imam. They provided her with the support she needed even during her decline.
In terms of the house, we gradually adapted it, initially installing a child’s gate near the stairs, moving furniture around and then my brother bought a recliner for her and towards the end of her life we bought a hospital bed for her. We were fortunate that the local hospice team supported us at home during mum’s final months.
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I don’t believe that anything can prepare you for dementia and its progression especially when it accelerates so rapidly. We as a family weren’t ready in any way shape or form. We were just very fortunate to have Diane help us with the journey.
Reflecting on this experience, I feel grateful that mum was surrounded by us, the family, and her friends. We were able to give her the love, compassion, patience and understanding that she wanted and deserved in her final years. She didn’t require any other services or products. What this whole experience has taught me is that it’s vital to have trained professional carers who are culturally astute and emotionally attuned. Equally important is the need for dementia education and awareness for families, as the realities of the disease are harsh. Whilst mum’s dementia was painful to watch and experience, her life was full of love. Her memories continue to be remembered and cherished by so many people whose lives she touched.