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cbailey · March 16

My LO is my spouse. He is only 71. He was diagnosed at the high end of MCI exactly a year ago with a prognosis of full blown dementia at an estimated 5 years. I’m scared for him.

My adult children don’t want to discuss the challenges I have, even though they have read all the information I have received about the diagnosis. He is only at stage of rational cognitive loss, and memory issues, but he does get mad at me when I tell him he missed a stop sign, or when he says I don’t tell him things (things I have told him 3-4 times.)

He is smart enough to know he has the challenges, but not while they are occurring. We have changed most of our assets, so I think we okay there. We are able to discuss his fears and concerns, but I can see real symptom progression during times of stress and I can feel him slipping more and more. I have been reading many posts and am glad to know I am not alone. I am thankful for this site.

Marta · March 16

Please search for ‘driving’ in the search bar. You will read about all the reasons your husband should not be driving at this point.

Taking the keys from my husband was one of the most difficult things I have had to do.

Ed1937 · March 16

C, welcome to the forum, but sorry you need it. You said "We have changed most of our assets, so I think we okay there." Did you seek the advice of a CELA (certified elder law attorney)? If not, that's something you want to do soon. They will give you the kind of advice you need, and draw up legal papers, such as POAs. They will also tell you the rules for Medicaid in your state. Even if you don't think he will qualify, you might be surprised.

The other thing I would like to comment on is that it sounds as though he may be past the time to stop driving. I know this is a very hard thing for both of you, but one accident could wipe out your assets. You yourself could be subject to a lawsuit if you are the caregiver, and you allow him to drive. We can give you some pointers on the driving issue if you need them.

jfkoc · March 16

I agree with all of the above but I disagree with the 5 year estimate.

There is no way to tell the speed of progression. There is no way to tell what your journey will be like. All you can do is to learn the best way to live and that will mean accepting, validating and living within the 4 corners of your husbands reality.

Yes, that means big changes for you but we are always here to listen, support and share information.

Sometimes the best way for others, like adult children, to understand is to let them spend time with the person who has dementia. Real time without you if possible.

You are not alone....we stand beside you 24/7...you can do this!!!!!

-Judith

cbailey · March 16

https://alzconnected.org/discussion/comment/202383#Comment_202383

I have been wondering about that. We have an appt in early April with the neurology psychiatrist and will explain my concerns to him then.

cbailey · March 16

https://alzconnected.org/discussion/comment/202384#Comment_202384

Thanks for the welcome. Assuredly, I do have concerns about that. I drive most of the time now, but hope to address this in our upcoming dr visit. As far as the legal goes, we have both had POAs since we were in our 50s, and as soon as he was diagnosed went to a CELA, but appreciate the advice because many may not be aware.

charley0419 · March 16

You must stop the driving, I still hear about it 1 yr later. But one wrong half second mistake and you’ll have legal issues knowing his condition. Insurance companies only need one mistake

M1 · March 16

Welcome. It sounds like you are mostly on top of things as you can be. I do agree with discontinuing the driving--this is a huge issue. Let the doctor know your concerns ahead of the visit, including any and all information you have about running stop signs, etc. My partner had several incidents of getting lost, going the wrong way down exit ramps, and a fender bender in a parking lot before I got her to stop. For the last one, she missed a court date (got to the courthouse but not to the correct courtroom) and almost lost her license--in retrospect I wish she had. I had to hide all the keys, and even then this was the issue that caused her to threaten my phsyically and end up in memory care.

One comment about MCI--while it sounds like it might be accurate in your case, I find that most times, neurologists are reluctant to diagnose "dementia" on a first visit and nearly always say MCI first, even when it's apparent to all involved that it is in fact a progressive condition. So I take that diagnosis with a big grain of salt.

If you look under "groups" to the right, there is a group for newcomers that contains many frequently used and usefiul links, such as Tam Cummings' dementia staging (by behaviors), a short read called "Understanding the Dementia Experience" and many more.

cbailey · March 16

I didn’t know that. Thanks for that information. When doctor took him through the 3 hour testing they said he was at the very highest level of MCI, amd would know considerably more this time. This is worrying to both of us. Many times his symptoms are episodic due to stress (we are moving from Fl back closer to family in MN), but many times it starts for no reason. I am so thankful it isn’t worse.

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