From Struggle to Strength: Syeda's Mum's Journey in Overcoming Dementia's Challenges
Background
My dad passed away in 2018 and shortly after that I could see a distinct change in her behaviour. She had been her primary carer and losing him changed everything for her. She spent her entire life as a homemaker looking after him and 8 of us children especially after she moved from Bangladesh to the UK. She was the pillar of the family always a selfless, nurturing person and thinking of others before herself.
She currently lives in her own home with my brother and his family but visits the other siblings every few months enabling my sister-in-law to have a break and for mum to have time with us all. Mum has other health conditions (high blood pressure and diabetes) and is partially sighted. In spite of this, she has always been very independent.
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After Dad passed away, I noticed there were changes in her behaviour as well as her emotional and mental state. We as a family all thought it was grief from the loss of our father. However, as things got worse, I took her to the GP, almost a year later and I expressed my concerns about dementia, but the GP misdiagnosed her and said that it was probably grief-related depression and he prescribed her antidepressants. She only tried a few of the tablets but felt worse so she stopped taking them.
A few years passed and there were more signs. She constantly repeated herself and became confused about conversations between my siblings. Bout of memory loss occurred and paranoia emerged. There were times when she insisted that something had occurred when it hadn’t, and vice versa. Her relationship with my brother and family deteriorated and she became more argumentative as she felt she was losing control. Furthermore, she became more emotional and sensitive, taking things very personally.
However, it was only when there was an incident that frightened mum and I, that we decided to revisit the GP. One night she wanted to go to the bathroom and couldn’t remember which door led to the bathroom. This was coupled with more ‘flare-ups’ when she would become increasingly anxious and agitated. Furthermore, she was not eating properly, was physically unwell and fragile emotionally. She would become irritable, withdrawn and easily overwhelmed. Whilst there were days when she was ok, there were more bad days than good.
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In mid 2024 we visited the GP again and he referred us to the Memory Clinic. From referral to diagnosis took about 6 months and in January 2025 she was formally diagnosed with mid-stage Alzheimer’s Dementia and Vascular Dementia. They called her a week after the diagnosis and then a month later, followed by a quarterly and bi-annual call to check in with her. At the time of diagnosis, she prescribed some medication to slow down the dementia. However, a year on, it is likely that she will be discharged back to the GP who will continue with her care unless there are significant changes. Whilst mum is aware that she has dementia she refuses to believe that she is further along the path, stating that is a mild condition and will not discuss it with anybody. What worries us, are the times when she hides things from us. There have been occasions when she has mismanaged her medication and really has no understanding of how the disease is affecting her.
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In terms of care support, mum is still independent and is capable of her own personal care as well as cooking which she loves. She loves to prepare vegetables and spends a lot of her time watching Youtube videos and recreating dishes for us, her children. Growing up and even now, she was and is a feeder!!
When she was initially diagnosed, we acquired the statutory local authority carers but mum found them to be totally unsuitable. They disrupted her routine, and mum felt they were unqualified and not culturally sensitive to her needs, and expensive, so we declined that service. I acquired a paid sitting service through a Facebook group and mum is happy with that. The sitter is tasked with visiting mum twice weekly. This is when my sister-in-law, who is loosely considered her primary carer, is not at home. Initially, we had tried to engage mum in some crafting activities, but she wasn’t interested. Her interests are cooking related so when the sitter is with her she engages mum in food preparation and cooking.
In terms of physical support, the house has been adapted to suit mum’s needs, so she lives on the ground floor, has a walk-in shower and rails where needed. None of the sibling’s houses are adapted so it can be quite challenging when she visits us. What concerns us all is that she may have falls at our houses as she has already had several in her own space.
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I have concerns that we as a family are not fully prepared for the future and the advanced stages of dementia. Two of us in the family have a better understanding of dementia as we have been exposed to it through our work. However, the remaining siblings are still coming to terms with what the future holds for mum and them. I am concerned about her growing needs as time goes by.
There is a stigma associated with a dementia diagnosis and mum worries that people will judge her and treat her differently, so she doesn’t like to share her diagnosis with others. It also means that she tries to prove to others that she is still capable of doing things. Furthermore, there is limited support that is culturally appropriate in the borough where she lives in London and, this is in spite of being so multicultural. Mum feels that the dementia services provided are unacceptable and inaccessible for her so she has no reason to attend.
Post diagnosis my family, especially my sister-in-law was not given any carer’s education or training, so we were left to deal with it by ourselves. In my opinion it would help to create greater awareness about the disease, provide more compassionate support to revolutionise the way dementia is understood and addressed. I think families should be made to understand that dementia is a disease and that it is not just old age. At the end of the day, change happens, health declines and families should be supported on this journey so that they approach it with understanding and not fear.
In terms of mum’s journey, our role is to keep her comfortable, and focus on encouraging her to do things that make her happy so that she can live her life with dignity.