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My husband (diagnosed with MCI last year) is refusing additional testing to see if it is actually dementia. He is afraid they will tell him he cannot drive anymore. His doctor told him that it would just put a name on his condition, but it doesn't matter to him. I have asked him to do it for me, so that I know what I am dealing with. He refuses. His best friend talked to him today, and my husband said the same thing he has been saying about driving. He doesn't trust the conclusion the doctor might reach.


My husband is certainly able to make his own decisions about his medical care (right now, anyway). So, that makes it hard.


He says his frustration comes in when he puts something down and 15 minutes later he doesn't remember where he put it. The truth is, he doesn't know what he doesn't remember, which is what I have told him. Most times he "seems" fine. Then he will forget something that was told to him a few minutes before, a day before, two weeks before, or even a month before. (Two weeks after a doctor appointment recently, he didn't remember that the doctor prescribed BP meds....)


Along with the BP meds, he is on Aricept. His "decline" (if that is what it is) has been slow. I just wish he would get additional testing so that I can prepare for what might be in our future. Not knowing where this is going is weighs heavily on me

If you are really concerned perhaps scheduling a private meeting with his doctor would be good. That way you can get your questions answered and share observations and concerns( especially about driving) that your husband is not sharing during his visits. ( had to do this once when husbands Parkinson's related psychosis was a problem) I would also recommend connecting with a support group. It helps when in terms of having a save place to vent and in getting useful information from others in a similar situation. Maybe getting him into some sort of physical activity through a senior center or at least daily walks. Any physical activity would be a benefit. Also would be important to make sure your business affairs(wills,trusts,POA, and health directives) are in order before he is no longer legally able.
Hope this helps.
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I recommend that you just take him to his neurologist on a regular basis. Six months or a year. You will eventually need to know what type of Dementia he has so he is given the correct Medications if needed. Knowing the correct one will also help you deal with the symptoms. Like Lewy Body effects the frontal lobe. This means emotions. Tendency towards aggressiveness.
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Mapotter Jun 21, 2021
Thank you, JoAnn. My husband started seeing a neurologist last year. That is when he was first diagnosed with MCI. He does see her every 6 months. She hopes to be able to convince him to get more testing. Our appointment is in July.
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It is my understanding that MCI does not necessarily worsen to dementia. I believe to say that it always does is too broad a statement and overly pessimistic. In the case here however the OP does seem to be describing ongoing decline.
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Mapotter Jun 21, 2021
His neurologist did tell me it will lead to dementia. She also said that he was intelligent (has a master’s degree), and people with higher intelligence tend to score better on tests than they really are.
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If he has been diagnosed with MCI, then it will eventually progress into one of the many dementias. Aricept is used to slow the progression of mental decline, but studies have shown that is most effective for the first 6 months.
Whether or not he gets an official diagnosis at this point I believe is irrelevant, as he seems to be doing pretty good right now. Perhaps as things progress he may be more open to being tested further.
If you are not already his POA, then I would make sure that gets done ASAP, as once his mental capacities decline more, he won't be able to designate a POA.
I would not waste your time worrying about what is to come. Instead I would just enjoy your time with your husband while he still seems to be doing pretty well.
You can't change what is going on with him, but you can change your response and whether you chose to worry about things that may not happen for a long time. So in the meantime, start educating yourself about Alzheimer's/dementia, and learn as much as you can, so you will be better prepared when the changes come. Knowledge is key in understanding, and will give you more peace of mind, and help you be better prepared for the future. Teepa Snow has some great videos on YouTube that you can start with.
So, please don't waste your time worrying about things you have no control over. That is so unproductive. Instead, get yourself educated, so that you will be better prepared when the time comes. Best wishes.
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Mapotter Jun 21, 2021
Thank you. I am doing all I can to live life as it is. I just like to be able to prepare myself for things. That comes with understanding what is going on. Is it vascular dementia? Is it Alzheimer’s? Is it something else? (Rhetorical questions.) If it can be diagnosed, it seems it will easier
to know what to expect. Knowledge is key.

I do have POAs set up.

Thanks for the information on Aricept. I had not read that. The doctor said she had other medication she can try. I don’t
know what that is, yet.
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I suppose your DH can only see what he would lose (getting a label) with nothing for him to gain.

Can I ask what a label will add to your lives right now? Will it help?

Frustratingly there is no blood test or scan to determine the type of dementia (that I know of).

Different symptoms will point towards a label, once enough symptoms.

I am a planner & like to know what I am in for, I would want to know a label too. But if not possible I suppose I would just research what I could.

The best thing I did was a free online course with University of Tasmania called Understanding Dementia. Academic styled but easy enough to follow.
Teepa Snow has great info & videos online - more directed at care techniques.
Aging Care will have numerous topics on types of dementia, behaviours & strategies too. Maybe some of that will help you feel more knowledable.

Maybe keep reassuring him he will only stop driving when it is no longer safe. He will need to trust you & his Doctor when this future date arrives (hopefully a while off yet).
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Mapotter Jun 21, 2021
Hi, Beatty. Thank you for your reply.

As the neurologist said, there is a fine line between normal age-related memory loss, mild cognitive impairment, and dementia. She cannot diagnosis dementia, without more extensive testing. When I spoke to her the other day, she said he should not be handling money (he won’t relinquish control of paying bills). We are also building a house in another state. When we started that process, he seemed fine. He is on board with everything. I handled getting the loans and things, and did include him in everything. The issue came up this month when he opened the bank statement from the bank where the loan is (something he saw the previous month and understood). He thought I opened another account without his knowledge. That is when I called his neurologist. I explained what happened and that we were moving (several months away yet). She said she cannot tell us not to move (especially since it is in the works), but said that it is going to be hard on him (and I need to understand what I am getting into).
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If he's competent to make his own decisions, then there's not much you can do until it gets worse.

I think you're tearing yourself up with a lot of what-if and worst-case scenarios that may not be justified. I'd suggest starting to worry when you're really given something to worry about. Frankly, his issues don't sound all that dire at present, and I think he'd rather not have a diagnosis that will bring him down, too.

I think you have to respect his decisions for now.
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