I feel so alone and lost at times

mtwells

My husband was diagnosed with "MCI with a vascular presentation." The loss of his short term memory is jaw dropping. I'm observing a slow decline in him, but then some days, he seems "OK." I've noticed when he is around other people that do not see him on a daily basis, outwardly he seems fine. His adult children do not believe there is anything wrong with him (I am step-mom). Sometimes I think other people think I am the one losing it and honestly, sometimes I think "is it me?????" I've had to take over all the finances. My husband gets so confused and has made several bad financial transactions. I finally had to tell him I needed to take over the finances. This has been a source of contention....one moment he gets it, concedes, and agrees it's for the best. The next moment he'll want to show me how he use to do the finances. A few weeks ago he had a meltdown. He sat down on the couch next to me and just absolutely started bawling, sobbing that he didn't know what was wrong with him, but he knew he was saying things that were hurting me. So incredibly sad! I just held him and let him cry. I told him I will be there for him and how much I loved him.

He has an occupational therapy appointment next week. One of the things they are going to observe in him is whether he should still be driving. He is still driving and for the most part does OK, but there have been times when I've started to question his cognitive awareness. We have a 40 foot RV, tow a car, and enjoying traveling the country; however, our adventures has halted while we figure out what is best, what is safe to do. I can drive the rig, but it's more than just driving it; there is a lot of upkeep on a big rig. I just don't know if he can still do it. He thinks he can and is ready to take off again, but I honestly do not know how safe I feel. There are a lot of what if's going on in my head right now. There's just so much to consider. Sorry, I know I'm venting. Thanks for listening.

BPS

Others will not see what you see for quite a while. He will be able to do the casual social thing for a long time. The hi how are you, every thing is fine, stuff. Tam Cummings (a dementia expert that has videos on line) has a video talking about this. It is because we have learned and practiced it our whole lives so it sticks longer. He should not be driving especially a motor home towing and car. Many people here will have good advice learned through years of experience.

Care4Hubs

mtwells, you sound like me. My husband was diagnosed with MCI in 2020. He seems fine to everyone, even now sometimes. Our son was in denial for a long time. But I am the one living with him, so I see it.

I had to take over the finances early on, but not without pushback. He finally relinquished control.

I was able to slowly stop him from driving. Sold his car before me moved. Then I would drive everywhere we went. (The doctor didn’t stop him from driving until he was diagnosed with Alzheimer’s in 2023.) At first he could drive locally and in familiar places. Then I bought a new car and he said he didn’t feel comfortable driving it. It is hard on me because I have to drive everywhere we go and I have a tendency to get sleepy…

My husband’s decline has seemed slow to me. He doesn’t do much socially these days and relies on me for everything. That is also tough to deal with.

I feel for you.

mtwells

Thank you for the information. My head is telling me the RV is going to become a thing of the past. I've been thinking about having a discussion with him about getting something smaller. We bought the 40 foot rig a few years ago under the auspice that we were going to be full time RV'ing someday. Well, after three months on the road last year, it become clear that something was wrong with husband and it was getting worse. Thank you again.

Cardenas1816

My DH was diagnosed two years ago with EOAD. Often people who haven’t seen him in a while say to me that he seems fine. But they just ask the basics that he’s practiced answering his whole life (how are you? What have you been up to?)

I would suggest you ask his kids to come over to take care of home for a day while you do some self-care activities. That way they’ll have more of a chance to observe without you there. With my husband he relies on me to help answer most things so I think that’s why many think he’s fine.

RetiredTeacher

My husband and I have had 3 motorhomes, traveled extensively and usually towed a car. Before he got diagnosed with VD I noticed changes in him. After his second stroke that caused slow reaction time and decreased awareness, I told him he was unsafe to drive. He could not react quickly should an unexpected situation arise. He stopped dtiving and now i drive everywhere. We sold the second RV, saying we were done RVing. We both missed it a lot and ended up buying a well used Class C. I drove it but did not tow. We stayed closer to home but now his physical condition has deteriorated. Getting in and out is really difficult, his legs are weak, he needs a walker and we have to stay at our RV site. I think our traveling days are over but I am not going to sell the RV. We will use it for staycations on our property and at night he can sleep in our bed in the house. Is it the same....no but it's a whole lot less work and responsibility for me and honestly so much easier. If I can't go to the beach or walk the trails and paths around the RV park, we might as well stay home. In the future he may not even know the difference. Do what works for you. There will be so many things you are responsible for and have to do all by yourself, find out how to simplify things as this is a very long journey and things will only get harder. Stay strong, come back and post often. We understand and will be here to support you!

annie51

This disease will slowly cause more and more isolation as things become harder to do together. You will need the support of family to get through it with your own mental health intact. I agree with @Cardenas1816 that somehow the kids need to be made aware of the true situation, and if it can provide some respite for you, all the better. I hope they are nearby or close enough to make occasional visits.
I’m so sorry you have to give up the RV, but it would be for the best. It’s so very hard to face the fact that all of the plans we had for our lives are now going to be completely changed. It’s heartbreaking and we’re here to listen any time you need to vent.

Lgb35

my DH is still driving as well. I had to report him to the DMV for an evaluation. That should be done by the doctor not me but it’s not required. DH also seems fine in social settings so people don’t notice. He is able to talk with people and have no idea who they are. He often asks before a social event for me to take pictures of people so I can tell him later who they are. What people who are not with him all the time don’t realize is when he doesn’t understand the conversation he will get quiet and pretend to be interested. Then upon leaving he tells me how “stupid” he is.

Maru

https://alzconnected.org/discussion/75155/i-feel-so-alone-and-lost-at-times

When I started reading your post, I had to go back to see who posted it…did I post this? Nope. DH is only in stage 3-4 but I have already started trimming back on what I can be expected to do. I cannot imagine traveling with your big rig and all the things you have to do setting up and so on, and at the same time be responsible for someone who appears to be a functional adult but may or may not be at any given moment. Having said that, I can appreciate that your traveling may be something that gives you life. However, you did say that "MOST of the time" he does okay with the driving but that you are concerned about his cognitive awareness. Frankly, as someone who might be on the road next to you sometime, I want the drivers around me to be cognitively aware all the time. Most of the time isn't good enough. Can you do all the driving etc.? Hard decision.

SDianeL

Welcome. Sorry about your husband's diagnosis. You're not crazy. Tell the kids that what he's doing is called "showtiming" — people with dementia can act normal for a short period of time around other people, doctors, family, friends but it takes a toll on them. They usually are exhausted after and maybe sleep more. Start a list of his behaviors but don't let him see it. Keep adding to it as new behaviors show up. Get the staging tool and see what stage he's in so you can discuss with family (not in front of him). Regardless of what the OT says he should not be driving. Dementia isn't just about memory. It's about reaction time and visuospatial difficulties where they can't determine speed or distance. If he's in an accident with a diagnosis, even if it's not his fault, you could be sued and lose everything. That's how I got my husband to give me his keys. We also had an RV and towed a vehicle behind it. We were full time RVers. I immediately sold the RV and we moved into a one bedroom apartment that I could manage. Even that was difficult as the disease progressed. Sadly I think your travel days in an RV are over. A smaller rig won't be much better. You could still travel for a short period of time but even that is extremely stressful. The last road trip we took was horrible. People with dementia like routine and familiar surrounding usually. There are some exceptions and I believe you should keep trying to travel as long as you can. You'll know when it gets to be too much. From diagnosis to my husband's passing was only 4 years. Get your legal affairs in order with DPOA, Medical POA, etc. Read the book "The 36 Hour Day" and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. They are very helpful.

jgreen

Hello @mtwells

Here is the behavior assessment tool @SDianeL mentioned.

Dementia Behavioral Assessment.pdf

So glad you joined us. Come here often.

trottingalong

The RV should be a big no. We didn’t have an RV, but we did have an ocean boat we would take out often for fishing and enjoyment. My husband has mixed dementia Alzheimer’s/vascular. At the time his driving seemed ok, but he started to get confused on the boat. We were in choppy seas and the main outboard motor stopped. We had a reserve motor. But he panicked which was so unlike him and he couldn’t figure out what to do or how to do it. It ended up being a minor problem we figured out, and that was the end of our boating life. I will say bluntly, allowing him to drive anything, let alone a 40’ motor home towing a vehicle is risking all lives on a road near you. He could over react to an object in the road, a car drifting, etc. it’s so much more than getting lost. If he has a diagnosis and there is an accident of any kind, whether it’s his fault or the other persons, your insurance company will not cover it. I was lucky, my husband didn’t object too much when we sold the boat and I took over driving. Your husband won’t be able to competently help you set everything up or even make minor repairs. I caught my husband working on his boat once and he couldn’t figure out how to put a cover on our bait box.

debriesea

Trottingalong,

I sympathize with you on boating. We have always been boaters and started the cruising life in 2010. Sadly, we finally had to sell the boat. What is hard now is that our daughter and family have just moved aboard their boat and started cruising. They are in The Bahamas now and if not for this disease, we’d be out there with them on our boat. But it is what it is. Hopefully, we may be able to visit them when their back on the east coast. Time will tell.

mdlstone

https://alzconnected.org/discussion/75155/i-feel-so-alone-and-lost-at-times

I do understand the difficulty of deciding whether to let him drive. My DH stopped driving recently when we moved to the independent living part of a Continuing Care Community. Before that, I mostly trusted him. We moved because I just couldn't take care of a house, garden, etc., anymore - plus him. I can't imagine what you have to do to take care of that rig. But if he has only been diagnosed with MCI, that doesn't seem like a big decline. Good luck! Let me know what you decide.