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I was thinking (doing that too much since we are sheltering at home) about how long I knew that my DH was having issues before his official diagnosis. He was diagnosed with Alzheimer’s in August of 2016 but I’m beginning to realize that I suspected quite a few years before that. My children also noticed changes that we discussed. I know I mentioned memory problems to his primary care at least 2 years before, could have been more, but he didn’t refer us to a neurologist until I was adamant that something was wrong. To outsiders he seemed fine in the years leading up to the diagnosis but to someone who knew him so well there were definitely things that were “off."


There was also depression which I didn’t know could be one of first symptoms. Anyway, as I said just mulling over the time frame and wondering about anyone else’s timeline stories  Not important I guess in the scheme of things as I couldn’t really stop the disease, but just curious.

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I think we all know that something's wrong with our LO prior to diagnosis. After several years at home, maybe 5, and getting increasingly befuddled by her behavior, I took my wife to a neuropsychologist in 2014 who conducted 2 days of cognitive testing. After repeating some tests, he said she had dementia but couldn't determine why. He recommended CBT therapy with a psychiatrist which, after several visits, proved nothing so I ended those appts. Even after all the inconclusive testing, and her continuing unusual behavior, I suspected she has AD. So it was another 3 years before I placed her in a MC facility where she passed away in 2018. I don't think a caregiver can overlook some warning signs prior to diagnosis. We finally get to the point where we say, "Let's check this out.".
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Very interesting subject for discussion. A client's husband, primary caregiver for seven years and counting, told me this morning that their first clear warning signal was that his wife got lost when driving familiar routes, and before that had silly accidents - he said "she'd drive safely two hundred miles home, then hit the gatepost." This is textbook Alzheimer's Disease, and of course he and his wife both know that *now*...

He also talked about how many little incidents and strangenesses all made sense once they knew. A firm diagnosis does have this advantage, that it can explain a lot.
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Somethingelsa Apr 2020
“Made sense once they knew “.
Exactly !
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My former mil and I had the same GP. I mentioned to him that she was developing some odd, paranoid behaviours and he asked me to record events in a journal.

He said that although he saw her every 3 months he did not know her well enough and she would not mention things, to see a change.

I am mindful of Dad, who I rarely see, to note the changes. When he got yesterday and tomorrow mixed up. When he repeated directions, but they made no sense at all.

Mum is hard of hearing and she misunderstands, but once she hears properly she understands the conversation.
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One of my favorite topics!
I suspected for a while, asked or GP about it and he shrugged it off but I persisted...
I have read that many that are diagnosed have been hiding symptoms for sometimes as long as 10 years or more. They "learn" how to cope, deflect and work around situations.

I have an idea in my head, the long time "logo" of Alzheimer's has been a Purple Ribbon. Autism has a multi colored puzzle piece. Alzheimer's should be a Purple Puzzle piece. For this reason..
Once you truly suspect something is going on and then you get the diagnosis you lean back and start thinking back over the months or years on all the little things that did not mean anything at the time, a missed appointment, a wrong turn, the obsession with one thing or another, the refusal to talk on the phone..whatever is is with your LO..all these things when put together like a puzzle finally make a picture that puts all things in focus.

Now you can't stop the disease but you can make the best of it.
Enjoy the days. Your Worse day this month will be a "good" day in 6 months or a year, that's the thing ya never know how slippery that slope is.
Laugh when you can
Laugh when you want to cry.
Cry when you can
Ask for help
Accept help when it is offered (cuz that won't happen often and offers will become less and less)
I made safety my #1 guide. If I was not safe caring for him at home I would have no option but to place him in Memory Care...If he was not safe with me caring for him at home I would have no option but to place him.
Get caregivers. YOU need time for yourself.
If there is an Adult Day Care program get him enrolled.
If he is a Veteran contact the VA or Veterans Assistance Commission (they do not charge a fee for their services)
Hang in there!
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Somethingelsa Apr 2020
Yes yes yes to everything you just said so well !
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