Inspiring Triumph: How Syeda's Dad Thrived with Dementia
Background
My father was a young man when he arrived in the UK in the early 1960’s. He moved around the country and then settled in Hertfordshire and finally in Newham, London. He was determined to make a success of his life and committed to providing for his family; a wife and 8 children (7 daughters and a son). He worked in a factory where aeroplane wheels were manufactured and was the sole breadwinner and took pride in his role.
He was an active man throughout his life, walking everywhere whenever he could. Friends and family describe him as being very social and well respected in the community. Known for his integrity and being trustworthy he often took on the role of mediator and counsellor. His friendships spanned different generations, and he kept in close contact with his relatives, friends and neighbours.
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Dad suffered from diabetes and high blood pressure and was a heavy smoker. In 2011 we went on a family holiday during which we noticed some changes. In particular, he was disoriented to the point where we thought he was having a stroke. Fortunately, he did not have a stroke, but it warranted a visit to the GP
Dad was a social person and generally quite tactful. However, his behaviour changed and he became blunt and uninhibited with what he said and much more talkative than before. We also noticed that he started to feel anxious and restless, unable to sit still and constantly doing something or going somewhere. Other changes included issues with his judgement and forgetfulness. Tasks that he had carried out in a precise manner previously, started to slip and he made mistakes when he did the shopping.
Furthermore, his English language capability weakened and then he reverted to speaking in his mother tongue; Sylheti. In terms of reading, he found recognising letters more difficult so we, his children would handle any paperwork. He also started to hide the fact that he was dealing with memory loss and would often make up excuses to mask any gaps in his memory or lack of judgement. He would sometimes use his diagnosis as an excuse when he knew he had done something wrong
One such incident was when he said that he was unaware of the rules with respect to fly tipping and dumped some rubbish in the wrong area. When the council publicly ‘named and shamed’ him, we had to speak to the council and explain his condition. It made us realise how vulnerable he was.
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Shortly after returning from our family holiday in 2011, we spoke to the GP about his behaviour and expressed our concerns. The GP initially dismissed them, explaining that they were probably ‘age related’. However, we persisted and finally had him referred to the Memory Clinic.
In 2012 he was formally diagnosed with early-stage vascular dementia. He had a brain scan which confirmed the diagnosis, but the team said that he was functioning well and at a high level and did not feel the need to prescribe any dementia medication. They suggested we focus on managing his other health conditions as high blood pressure and diabetes are known risk factors for vascular dementia.
He was not happy with the diagnosis and blamed me as I had pushed for the referral. He felt that he would lose his independence and control within the family. It was only after I sought help from Alzheimer’s Society who spoke to the entire family and made him feel that he was being acknowledged as a person and not for his diagnosis that he calmed down.
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In terms of care and support, my mother was his primary carer and one of my sisters assisted when necessary, so it made sense for dad to remain at home with us. It was great to see how he continued to do the grocery shopping, manage the finances and household chores and travel around London on public transport to visit friends and family. Hence, we did not require formal carers to look after him. My sister and mother who were the most involved in his care, attended carer training offered to them by the Memory Clinic. Other than that, we didn’t have much external support but then again, there really wasn’t any need for it.
On reflection, what made him happy was his ability to socialise with others. He often visited and checked up on vulnerable relatives. This was what made him feel as though he had purpose in life. He ‘lived well’ with his dementia.
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In 2014 my parents moved house closer to where I lived so that I could provide support as his dementia progressed. We had plans to adapt the house so they could live on the ground floor, and this would prepare us all for the advanced stages of dementia. Plans were put in place as were other legal documents like an LPA (lasting power of attorney) However, dad passed away before the plans could come to fruition.
We are fortunate that his dementia did not progress to the mid- or advanced stages and that he could continue living the way he did before his diagnosis. He kept his dignity and independence and was loved by the community.