When care changes over time

Transcript

Another reason, another too, I remember when we were still working back at [a harbour in BC] hen he was on Domperidone and Comtan and Mirapex he didn’t get good sleeps either. He would dream in Technicolor. His arms would be flailing all over. I would end up getting socked across the jaw and all kinds of crazy things. He’d be bailing out of bed even more, so I remain to say again, it’s just nice to have him on Sinemet.


The unfortunate thing now is, and I’ve seen it coming on for probably six years, a form of dementia. And I was watching it. I noticed about six years ago he couldn’t be responsible for keys and putting things away. Just he would lose stuff. It’s really been quite, quite obvious to me the past 3 years that he just wasn’t thinking when he’d do things. And so, what we did was I had to go through the channels, and it’s very hard to find a geriatric psychiatrist that would diagnose this problem. So eventually, our GP here in [a city in BC] had found [my husband] a geriatric psychiatrist, and of course this doctor had verified it was actually what I thought [my husband] had, and that was a form of dementia.


Now a lot of people think dementia and Alzheimer’s disease are the same thing, and they’re not. I had to find out the difference, and so I was told that Alzheimer’s is when you’re truly losing your memory; whereas when you have dementia, you’re losing your reasoning, your sense of intelligence. Now, I was also told that 50% of Parkinson’s sufferers do get Parkinson’s dementia eventually. Now, Parkinson’s dementia, the damage is all in the frontal region, regions because this is where your brain cells are that affect your judgement, your sense of reason, your intelligence. And so, because his brain cells are dying every day, every week, every month, it’s now affected that part.


Parkinson’s dementia is something I was never prepared for. When I met [my husband] I was prepared for Parkinson’s disease for the rest of my life and I was bound and determined I was going to stay with him right until the end. But this Parkinson’s dementia really floored me because that is hard on me as a caregiver. If it was just Parkinson’s disease, to me it would be a breeze. The dementia, it’s hard. I wound up getting burned out and thank goodness for the Parkinson’s and Epilepsy Society.

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