New Here, sort of:)
This is my first time posting but have used this platform for information and sometimes guidance. I thought it was time I posted as well. My DH was formally diagnosed in 2021 but had been diagnosed with MCI in 2014. I think he is around stage 4. Unfortunately, as a result of the diagnosis in 2021 he had to retire earlier than planned. Right now, he is able to maintain his daily living skills like hygiene, etc. but I have to manage everything else - medication, dr appointments, bills, household maintenance. And I still work fulltime. Alot of things are rolling around in my head like when do I retire, should I retire to take care of him? When I tell others about his diagnosis (just a few close friends) some react like I should be there taking care of during the day. He is ok during the day but needs someone with him in the evenings.
I am also trying to get him into the VA. But there is no evidence his dementia is service connected. But right now I do not think he would qualify for in home care or respite.
The other thing I am concerned about his driving. Right now, he will only drive a mile from the house but occasionally he will drive to my job which is about 10 miles away. So far, there have been no issues and I want him to maintain his independence.
He also claims he is bored but not really able to pursue any activities or hobbies due to his medical diagnosis - I have tried. There are no adult day cares in my area. I have taken care of all the legal stuff, POA, trust etc.
So just overwhelmed right now. Still trying to make it through the days. It's so sad to see someone you love dearly go through this. It is hard to deal with how much he has changed. It is a lot.
Comments
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Sounds like my DW diagnosis was early onset , but Nurologist said no more. And he was right. Take him let Dr tell him. If serious accident you knowing his condition may be issue legally I don't know.
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Hi Belle and welcome. It is very overwhelming and very sad, and I am sorry you are facing it.
It sounds like he is losing executive function if he is apathetic and unable to initiate activities for himself. Sadly, this probably means that his driving days need to be over. You could have a formal driving assessment done, but even if he passes, these are only good for certain limited periods and might need to be redone as often as every six months. When i tried to get one for my partner years ago, there was at least a six-month waiting period (that was during the pandemic). The consensus on these boards--as you will soon see by other responses--will be to get him out of the car and off the roads, because safety has to drive the decision-making, not wishful thinking about his independence. Sorry if that sounds harsh.
Some larger cities have senior driving services--equivalent of Uber but specifically designed for seniors. That might be a temporary possibility for mobility.
Glad you posted. Wish there were easier answers.
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Hi Belle. I'm glad you decided to post. If you've been reading the forum for a while, you know how valuable it can be. We don't always hear what we want to hear, but people here are giving you options or suggestions meant to help.
"The other thing I am concerned about his driving. Right now, he will only drive a mile from the house but occasionally he will drive to my job which is about 10 miles away. So far, there have been no issues and I want him to maintain his independence." This is very important. When he has an accident (and he will if you allow it), it could cost you everything. He has had a diagnosis for some time, and that will work against him if he does have an accident. You could also be held liable because as a caregiver you allowed him to drive. Please find a way to get him off the road. It is too risky for both of you and the public. If you could have his doctor tell him he can't drive anymore, that will be to your benefit. Or get the license bureau involved to get him off the road. It would be much better if someone other than you break the news to him. You don't want to be known to him as the "bad guy". I understand you want him to be independent, but you are not taking that away from him. The disease is.
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Is the formal assessment done through the DMV?
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I think the answer to that is "yes". You could call to ask what the procedure is, and schedule an appointment if needed. You could ask them to tell him an anonymous person reported him. Keep your name out of it if possible.
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Thank You!
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actually, around here you have to pay fa private driving assessment, our DMV doesn't do them so this may vary by state. If you Google it you should be able to find it. It's common practice but not covered by insurance. Here it costs around $350.
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It doesn't surprise me that it may vary by state. I didn't have to worry about that because my wife quit driving in the very early 1990s because of Meniere's disease. But she thought she drove 2 weeks ago.
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Belle, My DH is about the stage as yours. Last June, the first step we took was requesting that the Dr. write a letter to the DMV being concerned about his driving with his diagnosis. It took him 3 tries to pass the written. His driving test was a joke. The tester took him through a neighborhood and back, all of 10 minutes and said he did great. In Dec 2022, shortly after being officially diagnosed, he took a 2 hr, mostly in office, driving assessment test through OT services. This was paid for by Medicare & our supplement. He did ok and now we had a baseline. Dec 2023 he took it again and there was a dramatic drop. The Dr took away his driving privileges and he is very upset about it.
Bottom line, I would be wary to trust the DMV. We live in Idaho.
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Did his dr arrange the testing? We have an appointment this afternoon with his neurologist.
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Yes.
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My DH is about the same place as yours. Luckily he doesn’t care to drive much, preferring me to do it. So far there have been no issues and his vehicle isn’t even working right now. I’ve had it easy in that dept. we live in an area where there are no specialist of any kind. There is no support of any kind for either caregivers or day care centers. Luckily my DH is ok doing daily baths and getting dressed. He does walk the dog in our neighborhood when the weather is decent and watches a LOT of tv. Over and over. His short term memory is poor and his ability to comprehend is compromised. I can leave for a couple of hours at a time, but never overnight. Two weeks ago he was in the hospital for 4 days and 3 nights. I slept in that bed with him. He did not do well without me there. Thank goodness we are both on the slender side.
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we went through this issue with my husband. I was still letting him drive just a mile or so then one day he hit a parked car 1/2 a mile from our house. A policeman was following him because he was going 10 miles an hour and charged him with reckless driving. I spoke with the police officer and they were willing to drop the charges if he surrendered his license. It was a tough couple of months but like every other step of our journey it passed. We were blessed he had a very minor incident he could’ve hit a person or hurt someone. My DH loves being with me all the time so I kept telling him we’d just go every where together now.
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Thanks I was hoping to address this with his dr but our appointment was moved to next week. I dont drive with him much but when I do he seems to do okay but I will continue to pursue it.
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This is such a horrible disease. With me at work all day being able to drive short distances gives him some independence. He feels worthless already because of this awful disease.
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Belle, I can completely understand your feelings about him needing some independence, but if he were to injure or kill someone because he couldn’t react quickly enough to someone else doing something stupid (another driver pulling out unexpectedly in front of him, a child running into the street to retrieve a ball, etc.) the results could be devastating. You could lose everything if he were sued.
if you had young grandchildren and he had to drive them a mile to school every day, would you be comfortable with that?
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I understand completely just saddened about the whole thing.
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It is hard especially for a man to give up driving. My DH points out every car he thinks he will buy soon. Just another heartache we deal with. Hugs, Belle.
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Belle, when we had the discussion about me taking over the driving, it was on the way home from picking up a pizza, a place he had driven to almost weekly. He couldn’t remember which way to turn. When I brought up the possibility of reaction times if something unexpected happened, he agreed without any argument and never drove again. But he loved cars and subscribed to every car magazine out there. Friends and friends of friends would call him for advice when they were looking to buy a new car. He loved to drive. When we got home, he went on to eating pizza and talking about other things. I went upstairs in the bedroom, out of sight, and cried. I cried for his loss of something he loved so much.
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Belle,
I get it. I still work, my husband stays home, mostly watching TV, he doesn’t want to see his car but doesn’t drive it. It makes me worried that it is in the garage but most the time he can’t find the keys ( because I have them ). I now have told him if we are to travel ( he talks but we don’t go) we should sell both cars and get one NICE car and save on insurance. We are getting closer, going car shopping Friday and he thinks he is driving all of this decision.
it is all very sad, he can still do his ADLs but they slip, he will go a week without shaving, I don’t care but he looks so much older. When he does shave, he misses a lot so I help. He will still shower, if reminded, I come out of the bathroom and say “ bathrooms all warm and I finished my shower if you want to use it” and he will go, but won’t initiate on his own. I have taken over the bills, continue to clean, got the tax info ready and have learned lot about home repair, and finding messes he has made and has hidden.
good luck with the driving, it is a hard one, but I would not allow my grandson to ride with him, so he is done.
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Yea sounds like my situation. I am hoping to work another year before I retire but I may need to hire someone to come in eventually. Right now, he is fine during the day but I notice little things that have slipped recently. We just got back from his bucket list trip. It was a bit challenging but I am glad we did it before he could no longer travel. We typically travel a lot and will continue until he can't any longer.
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Boy, I truly understand what you posted. It does help to know that there are others here to offer support and share ideas. k
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I am new to the this forum. I am concern with my husband behavior and mild notion of confusion. He has received no DX of dementia. There are attempts to declare Dementia. I await the finding.0
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Thank you for the reminder that the disease is taking this away. I needed to hear that tonight.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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