What things change with a diagnosis from MCI to Alzheimer’s?

Posted by 2me @2me, Jan 15 12:37pm

I apologize if this has been discussed and I missed it. My husband was diagnosed with MCI in 2021. I’ve seen more changes in the last year, especially the past few months since our son passed away from brain cancer. I realize (and HOPE!) we may not be headed for the Alzheimer’s diagnosis, but my husband’s sister and his cousin both died of Alz Disease.
My question is: what things change (legally and otherwise) if that diagnosis is arrived at, from MCI? We are pretty well prepared with our wills, and POA. Other things I need to be prepared for? Currently he is still doing pretty well. I have benefitted so much from other people’s experiences and encouragement on this site. Thank you all!

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Profile picture for upgirl2013 @upgirl2013

@tsc interesting about not being to draw the clock. My husband has scored 13 out of 30 on the MOCHA test and the neurologist he likes said he can continue to drive. He only drives around our small town and I am never the passenger when we are in the car together. He was the driver on long trips for over 42 years of our relationship, but seems to accept his new seat in the car okay. He is a great front seat driver and tends to hold onto the door handle often I am hoping the doctor at Mayo suggests his driving days are over.

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I would urge anyone who is concerned about their loved one's driving to consider that most people remember the rules of driving but what changes with either just age or age and dementia is their visual field and reaction time. This is huge when driving. People with dementia will lose peripheral vision and eventually have only binocular or even worse mono vision. It is not a question of better glasses, it is failure of the part of the brain that interprets visual cues. The second thing that happens is a slowing of reaction time. If a small child runs into the street or a kid on a bike turns in front of them , can they see this and recognize what they see as a danger and can they get their foot on the brake pedal in time. Unless the neurologist has sat in the passenger seat of the car while the patient is driving, they have absolutely no way of knowing how dementia has or has not affected the patient. They only know what you tell them. I had to deal with this issue with my father years ago. He had no dementia but at 85 his reaction time was slowing. AAA had a CD called Roadwise Review, a tool to help seniors drive safely longer. Based on the response time tests on the CD my father could not react in time. Given this objective assessment, he gave up driving. Another thing to consider is your liability if your husband is found at fault in an accident.

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Profile picture for ocdogmom @ocdogmom

I would urge anyone who is concerned about their loved one's driving to consider that most people remember the rules of driving but what changes with either just age or age and dementia is their visual field and reaction time. This is huge when driving. People with dementia will lose peripheral vision and eventually have only binocular or even worse mono vision. It is not a question of better glasses, it is failure of the part of the brain that interprets visual cues. The second thing that happens is a slowing of reaction time. If a small child runs into the street or a kid on a bike turns in front of them , can they see this and recognize what they see as a danger and can they get their foot on the brake pedal in time. Unless the neurologist has sat in the passenger seat of the car while the patient is driving, they have absolutely no way of knowing how dementia has or has not affected the patient. They only know what you tell them. I had to deal with this issue with my father years ago. He had no dementia but at 85 his reaction time was slowing. AAA had a CD called Roadwise Review, a tool to help seniors drive safely longer. Based on the response time tests on the CD my father could not react in time. Given this objective assessment, he gave up driving. Another thing to consider is your liability if your husband is found at fault in an accident.

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@ocdogmom Thank you for that insight. I will driving for the next 2.5 months. I am not sure if I will let him to drive after that.

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Profile picture for sandyar @sandyar

@katrina123 My husband will have to face that reality after his cataract surgery next month. He thinks he will be able to drive again and is not listening to the neurologist. I am dreading this becaue he will be very difficult about this and I know I will take the brunt of it. I am curious as to how you are handling it.

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@sandyar

I will give you my honest answer. My husband hasn't been able to drive for almost 3 years and he still hasn't gotten used to it. He begs me for the car keys, and he thinks that I am being mean to him. He has 2 different personalities. When he is lucid he sometimes understands but when he is not, he is very difficult. He often has said that he wants to run away and he goes into our garage and gets into the car and try's to use his house key to start the car. Three years ago his neurologist explained that when someone who has been diagnosed with Alzheimer's and still drives gets into an accident they could be sued and could lose their home. This actually happened to one of his patients. There is no way my husband could drive because he even gets confused sometimes on how to find our bedroom in our one-story modest home.

sandyar... There have been several caregivers on this site who have said that their spouses have been O.K. with not driving so maybe your husband will be too.

Hopefully, he will surprise you and he won't be too angry.

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Profile picture for sandyar @sandyar

@katrina123 My husband will have to face that reality after his cataract surgery next month. He thinks he will be able to drive again and is not listening to the neurologist. I am dreading this becaue he will be very difficult about this and I know I will take the brunt of it. I am curious as to how you are handling it.

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Hi @sandyar

Sorry to hear this. Definitely have the doctor be the bad guy in this. Even so, you may get blamed, as I did.

I wish I had googled "how to help someone through a deep disappointment that cannot change" when we were going through the long difficult time after my husband could no longer drive. The articles that come up in that search tell you how to help your partner evolve in their thoughts/emotions in the face of a disappointment such as this one.
- At first, listen only and validate. My husband was a great driver and proved himself on that. when he lost his license, it seemed like a negation of that track record. I tried to validate how good his driving was often when he got in a funk about it.
- I like this one: Allow for wallowing. I experienced the folly of trying to cut that short. I think that 2 or three times I sat him down to explain why this had come about. And that I was not the cause of it. It didn't have much effect.
- Avoid triggers -- We had two cars. when he couldn't drive any more, I did not take him out in his car, so that he woudl not have that sense of being replacd
- A choice bit:
"...stop trying to fix it. Disappointment doesn’t need a silver lining right away. It needs presence. Witnessing. Space.

You don’t need perfect words. You just need to be willing to sit in the mess with them. Say, “I don’t know what to say, but I’m here.” Say, “That’s so unfair.” Say, “I see how much this sucks.”" -- Lisa Durik"

Once you see an opening you can help them accept the new reality. In our case it took a long time. We did lots of things he liked, so he did not have the opportunity to be mad about it all the time. Eventually he just got used to being a passenger.

best of luck!

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Another point about driving

Your doctor can prescribe an occupational therapy session specifically focused on driving. Interestingly, in my area those people only do their work with a doctor order. You cannot just hire them to assess your Person's driving.

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Profile picture for sandyar @sandyar

@katrina123 My husband will have to face that reality after his cataract surgery next month. He thinks he will be able to drive again and is not listening to the neurologist. I am dreading this becaue he will be very difficult about this and I know I will take the brunt of it. I am curious as to how you are handling it.

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@sandyar

Sometimes I am patient and sympathetic and at other times I beg him to stop with the anger regarding not being able to drive. I tell him to be appreciative of the fact that I can do all of the driving. My husband was diagnosed with Alzheimer's 3 years ago and he is getting quite advanced, so the truth is no matter what I say he still can get upset about not being able to drive. Many times, I have had to call my grown children to talk him out of the car in the garage. He often thinks that I am a strange person in our house so he will listen to them when he won't listen to me. However, I know this is odd but there are times we are driving when he tells me thank you for driving.
sandyar....in answer to your question I would say that I am not handling it well or poorly I am just doing the best that I can through a flood of tears.

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