Hi .. I’m new to the Discussion part

martieS

I am the caregiver for my husband. He has been diagnosed with likely Vascular Dementia and some Alzheimer’s plaques also. We did participate in a Clinical Trial for Eli Lily’s newest plaque destroying drug til it was discovered that he had more than moderate (not quite to extensive, but close) White Matter Disease. He was eliminated from the trial after one infusion because the risk of stroke was too great.
he has been diagnosed since August of 2023. His most noticeable symptom, loss of the ability to remember and use the words he wanted, became obvious in early 2023. So far this is the only major symptom he displays. He is beginning to need help buttoning his sleeves, hooking his overalls, and putting on jackets. His clothing choice remains appropriate. He can operate a skid steer/loader, well. He can and does drive safely. He does not get lost but he does need me to help him get places that are not familiar in town. He cannot write any longer and doing daily math computations is nearly beyond him. I guess I’d say his muscle memory tasks are still doable but mental computational tasks and fine motor skills are leaving him… his long term memory is sharp and accurate. His short term memory is not good .. He is fixated on asking several times a day if it is the day he thinks it is. He also is obsessed with being on time for appointments to the point where he would arrive an hour to two hours ahead of time. He is profoundly deaf and wears two hearing aids because of years of gun use and heavy equipment use with no ear protection. The deafness is also used as a tool to take time to comprehend conversation directed at him … I see the confusion when we talk … So, that’s where we are …We are 78 yrs old , married 32 years and going into our 3rd year of recognized dementia .. if you just met him you would not realize for quite some time that there was anything amiss with his head …. I just wanted you to know his base. I am glad I finally got the courage to participate.. I need to have a place to learn . Thank you

SusanB-dil

Hi martieS - welcome to 'here', but sorry for the reason.

So sorry you are dealing with 'this'. MIL also has alz and vasc. It is the most common of dementia dualities. That is wonderful you've been married for 32 years. I know it is hard to see a LO in such a state.

But a note, however, that if he does get into any type of accident while driving, insurance may not pay anything because of diagnosis.

martieS

SusanB

https://alzconnected.org/discussion/comment/234200#Comment_234200

thanks for reiterating that… I try to keep a close eye on him and he knows that at some point he will have to give up driving.. we have discussed it several times. Bless his heart, he says he’s going to hate it and he says that he hopes he won’t fight me or that he will know he has to … we’ll just wait and see … in the meantime I go almost everywhere with him …. This is such a delicate line to walk!

SDianeL

welcome. Sorry you are here due to your husband’s diagnosis. If you haven’t already, read the book “The 36 Hour Day” which really helped me after my husband’s diagnosis. Also get Powers of Attorney done now. I got my husband to stop driving by telling him the doctor said if he were in an accident we could be sued and lose everything even though it wasn’t his fault. This was true. The neurologist said he had visuospatial problems common with dementia and he couldn’t determine speed, space & distance. He was an accident waiting for a place to happen. I was shocked. The next day he gave me his keys and I became his chauffeur. Also take his credit cards. Get one with low limit. There are nightmare stories on this forum about dementia patients buying things or being scammed. There is another group on this forum for caregivers of spouses where you can also post. Come here often for info and support.

AlzWife2023

https://alzconnected.org/discussion/71805/hi-i-m-new-to-the-discussion-part

Hi @martieS We are here for you. Sounds like you’re doing all the right things.

Might want to start chauffeuring now (at least sometimes) so he’ll be used to it when the time comes. Act like it’s a one off—can I drive today?

Bailey's Mom

My HWD still drives…I always am with him and give him directions, etc. He seems to drive fine, but occasionally will drive on the wrong side of the road in rural areas or do something else that is terrifying. I do most of the driving now and will tell him that I need to drive because if I'm afraid I'll forget how if I don't. He usually accepts that without a problem, but will sometimes respond with 'you just think I can't do it, etc.'. I plan to ask our PCP to recommend that he stop as he listens to her. It will break his heart, but it needs to be done.

starwood

https://alzconnected.org/discussion/71805/hi-i-m-new-to-the-discussion-part

Hi, martieS. I (80 yr old) also care for my 83-yr-old husband, officially diagnosed in April 2023. At that point, he was (and had been for several years) having short term memory issues, was still driving some locally, and pretty cognitively intact. We explored the possibility of Leqembi for him, but by the time all the required tests, exams, etc were completed he had deteriorated markedly. His gait and balance were terribly compromised, lost lots of weight, and for a while last May-June, we were convinced he was in his last stages. However, he’s rallied and after more tests, including screening for normal pressure hydrocephalus, we’re at the “just one day at a time” stage. He’s eating well, still recognizes familiar people, can participate in simple conversations, and express his needs. His physical abilities have really diminished though. He’s wheelchair bound due to his gait/balance problems, and pretty much dependent on me for all his daily needs, including moving him from one place to another in the house since he can’t move the wheelchair. He can still feed himself, stand for very short periods, and get from sitting to standing (with help). We vowed long before all this that we would die in our own home, but I’m having to think about the possibility of other options. This is a terrible disease for everyone involved. I’ve always been pretty much an introvert, so have limited outside support. it’s helpful to have this group and have people who truly understand what happens in daily living with AD. Here’s wishing the best for you on this undesired journey!

starwood

https://alzconnected.org/discussion/comment/234257#Comment_234257

My DH also has visuospatial problems and when his first neuropsychological testing was done, the psychologist emphasized that and highly recommended that he stop driving. At that point, his PCP had already started talking about it, and I had assumed most of that responsibility so it wasn’t totally new. He was offended, having never been in an accident or even a speeding ticket. But by the time of the neuropsych testing and the actual AD diagnosis, he complied without too much complaint. He didn’t want to injure someone else, and I think that did the trick. Frankly, I’m not sure I would accept that edict so graciously.

ButterflyWings

https://alzconnected.org/discussion/71805/hi-i-m-new-to-the-discussion-part

Oh my - this part is most scary "He can operate a skid steer/loader, well. He can and does drive safely." yet you can see the confusion in his face when talking and he needs help dressing as well as having trouble with fine motor skills.

Please reread Diane and other member' cautions below. It is hard for us to realize all the many small and large split-second decisions that go along with driving, much less operating other heavy equipment. It is too much for the dementia-impaired brain, and too late after the first accident happens. I too, thought at first that it was about forgetting his way or getting lost, until I learned the judgement, vision, spacial issues and how the brain can glitch at any time. There are fine motor skills involved too, and a huge chance to do harm.

It can be done in a sneaky way (sorry, but fiblets are often the most kind, gentle way to do what must be done to protect our LOs and others). Disappear the keys and vehicle somehow. Not easy I know, but this will need to happen sooner than later. Probably now.

I say the next remarks as kindly as possible: You cannot reason with someone whose reasoner is broken so no need to elicit agreement or promises that he won't get behind the wheel even if he seems to agree. He will not be able to keep that promise. The disease won't allow it. You are in charge now, as my DH's neuro told us on diagnosis. My DH never knew that I was the one to get him off the road. I was his ally, mastered the surprise look and 'hmm', 'oh my', 'I'll call so and so and find out etc.' I hope other friends and family understand and will support you in this.

Please, Please don't wait until you are sure there is a problem with his driving. That's just too late.