A Caregiver’s Story: My Father With Lewy Body Dementia

caregivers story on lewy body dementia

My Dad was in his early 70s when I started noticing differences in his behaviour. Sometimes he couldn’t remember what happened an hour ago and he began to have times when he was confused on a regular basis. Dad used to have frequent hallucinations, mostly about animals and small children. They weren’t scary hallucinations, but he used to often feed an imaginary dog that used to come to visit. Dad also developed a Parkinson’s type tremor. He was then diagnosed with Dementia with Lewy Bodies and it all started to make sense.

Finding happy memories

At first, Dad used to get frustrated at what he couldn’t remember. Dementia can be so cruel, it can affect anyone, no matter what their background. My Dad was a lawyer, super-smart and logical. He was a man with great reasoning and memory. But when the dementia set in, he often couldn’t remember where he was going, or what he was focusing on. So we used to instead focus on memories from before he got sick. We’d talk about Christmas traditions, and talk about holidays. Dad may not have been able to remember what he had for lunch, but he could remember the consistency of the sand on every single beach that he’d ever walked on, and that gave him happiness.

Getting around with dementia

One of the biggest challenges of offering care for my Dad was getting out and about. Dad always enjoyed hiking, but as his mind deteriorated, so did his body. We knew he wasn’t going to live forever. Still, I took him out every day, even a walk around town, pushing him in the wheelchair, for the majority of the time. But boy did we take some journeys together. Despite the progression of dementia with Lewy Bodies, we had a blast recreating memories. Sometimes we would take the bus and Dad would tell me about the time he took the same bus journey 40 years ago and how everything had changed. For his birthday one year, I got in touch with the local Rover owners group. They brought over the exact model Rover that my Dad owned in the 1950s and we went for a drive. Dad sat in the passenger seat touching the leather on the dashboard, saying “this feels just like my car, it smells the same.”

Tastes and smells

One of the things my Dad loved the most was his food. As his illness progressed, I used to feed him at dinner times. I’d still make sure it was foods that he loved though, those filling winter classics like steak and kidney pie, or toad-in-the-hole. We’d pick up fish and chips and he’d say “this reminds me of the beach holiday we had in 1963.” There are close links between taste and memory and we made the most of it. As Dad’s current memory faded away, we made the most of the old memories that he had left. Even the taste of a simple bag of sweets could bring Dad out of his shell to talk about a trip to the park when he was a child. 

At the age of 84, Dad suffered a stroke and slipped away. Despite his dementia, he’d had an excellent quality of life for over 10 years since being diagnosed. All the memories that we talked about will always be with me and they are something to treasure. We really made the most of that time and I learned so much. All the little things matter, every time I smell fish and chips, I always imagine him on the beach. Memory is a powerful thing.

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