Learning about dementia the hard way: a once charming and smart husband whose brain is now diseased

We start our day together. I drive my husband to my office at SpeechWorks Inc. where he waits for his bus to an adult day treatment centre. He becomes anxious while he waits and drifts in and out of my treatment space. I mistakenly think I can prepare for my upcoming clients and get ready for my day. He mistakenly thinks he can ask repeatedly when his bus will arrive. We are together yet in different worlds.

My husband has dementia. He has Parkinson’s disease so it is most likely Lewy body dementia but it could also be Alzheimer’s dementia. His mother and brother had Alzheimer’s. Parkinson’s and Alzheimer’s—that would be a double whammy for his brain.

He had been charming and smart. He was a skilled, fluent communicator with a large vocabulary – so large we used to call him ‘Dictionary’. Now he struggles to communicate a complete thought. His words and his ideas are mixed up. He is unable to recall the names of people and objects. Often he makes no sense at all. Sadly, he was the talker in our family.

Now it is very quiet in the car when we drive to the office. I concentrate on driving. He tells me every day I am good at it.

Being an experienced therapist with an avid interest in brain plasticity, I am training people to talk to my husband. I am his wife and even now, I am too connected to him to be his therapist. I am teaching one of my employees to engage him in conversation while he waits for his bus. She is learning how to cast a net to gather his memories so he is able to inform others about himself. He tells me he enjoys these talks. He says it is nice that someone listens to him and he is surprised with the memories he is able to retrieve. Every week we try something different, looking for ways to relate and stimulate his memory so we can share a smile or a laugh.

Together we are doing something of value: learning how to communicate together despite the brain changes which accompany his disease. At SpeechWorks Inc we help other people experiencing communication changes which come with the dementias. We have communication cafes and we provide training for people supporting someone with dementia.

Allison Baird has a master’s degree in speech-language [pathology and is registered with the Manitoba Speech and Hearing Association.

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