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After two years now, finally diagnosed after a stroke 13 years ago. He can still have some normal conversations. No longer drives (used to be a salesman drove everywhere). Doesn't want to go anywhere, won't shower regularly, won't let anyone help him. Has poor eating habits, sleeps a lot (is that normal for dementia?). I know unless you look inside the brain it is hard to know what is going on in there and every case is different. I'm trying to navigate this. Never know what he will be like each day. Either he doesn't want to be bothered and sleeps all day or he is in a more social mood. I sometimes think he has given up, but then again if it's the disease and he can't really help it, I'm trying to adjust my reactions accordingly. Married 50 years.

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I feel I could have asked your question. My LO has vascular dementia, and I am also trying to “see” it. I think because it’s been gradual, I assumed some of his changes in behavior were a new part of his personality showing. I also didn’t know to expect symptoms of vascular dementia after his stroke, so I assumed it was just a different side of him coming out. The anxiety and dwelling were terrible until recently. His memory is still good a lot of the time, thankfully. It’s mostly his mobility that’s diminished. But, like your LO, he also refuses help of the time, doesn’t eat much, and rarely showers.

After a month in bed with horrible tailbone pain, I find he is extra fatigued all the time. He sits to eat 2x a day and immediately lays down. The other day, he was in the wheelchair (yay!) but his BP dropped, so we put him back in bed. I don’t think that’s a good sign. The PT has given up because he would not consistently participate. There was a 50/50 chance he would throw a fit and refuse (...symptom of VD?).

Most of the time, though, he is himself, not confused or vacant, just very fatigued. I know I should be grateful for this, but it’s like he’s too young to be in a body that’s worn out. He’s 78.
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My Mom has vascular dementia and you are so right. The personality changes from hour to hour. My mom and dad are in assisted living so when we visit them we just go with the flow and consistly redirect. Its A horrible disease but we try to find the positive every day
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First of all I’m giving you a hug of strength. My dad had vascular dementia. Stated out strong wanting to drive(blind) then peeing in public whenever. I learned to carry a pickle jar.😢. He would always be talking cuz he was lonely. Then peeing wasn’t an issue. Helping him walk. I noticed in time if we were really active one day, it took two of just sleeping, and mumbled speech. On the day it took two people plus my husband to get him off of toilet, I called hospice. My husband wanted him to go to hospital and they handle him. But, I said no. I called our primary doctor. She got me connected with hospice immediately. My dad made it to his 87th birthday. We improvised it. Took orders for Mexican food, picked up met in Park. He had a sip of Margarita, and blew out his candle and tipped his Ford hat to us all. Ate pistachios in driveway next day in sun, with my mom(dementia also). Then in 6 days he passed. I think when the tiredness stars and is noticeable your getting into a timeframe. Enjoy every hard moment cuz it’s going to end.
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My husband has a lack of initiative and he was much like you described. He sleeps a lot and wouldn't do much of anything at all.

Things did make a bit of a change when he decided not to eat, take a shower, or take medications. He was hospitalized for in patient treatment for severe depression and...that actually was helpful. They were able to help his overall attitude. His dementia is still there, but we are still working with a psychologist weekly and speech/memory therapy. The brain damage is still there but we are working on keeping some skills intact.

My husband told his doctors that he had given up and was ready just to be dead.

I'm so sorry that this is happening to you and I know how tough it is.

I can see him slowly slipping away into some other place...his dementia place. We can't stop that, but we have developed a new routine thanks to the psychologist and that makes daily life just a small bit better.
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I completely understand where you are coming from. My loved one had the same disease. I know that caring for someone with this disease is not easy at all. It was very hard to watch my loved one just wither away. The problem is that the doctor’s really don’t know how too treat this disease. My loved one was very violent in the end. We had so much trouble keeping him/her from hurting us and going outside and getting lost. We even had too lock up the medicine bc it would be taken without us knowing and overdosing occurred once. That’s when when decided to lock everything up.
This is a very ugly disease and has many very different phases. Not much is known about it and not much can be done either. The only advice I can give you is to just love your husband with everything you have in your heart and please remember that this disease is NOT his fault. He can’t help the way he is now. You have accept the way he is now. You have been married a very long time and should be very proud of this accomplishment. You are probably the only person your husband can remember and trust right now. He has known your face for a very long time and trust you. I know how hard this is. I also know that it certainly takes a lot out of you too so I am asking you to PLEASE PLEASE take time for yourself. Look up a reputable Homecare agency ( maybe though this site) I cannot tell you how important this is. If you are his main caregiver you may need a bit of a break. It makes all the difference in the world. Maybe just a little trip to the mall or go get your hair done. Go do something for yourself. I am telling you it makes a world of difference.
I am around if you want to talk.
Take care 💕✨🙏🏻
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It took several years before my husband was finally diagnosed with vascular dementia. His main symptom was a failure of "executive function"; he forgot to pay the bills and then called the credit card company to complain when they charged a fee; he lost his sense of direction and could no longer find his way to the dentist he had seen for years. After one of what I now realize was a mini-stroke, he couldn't see straight and fell when stepping off a curb, couldn't shave without missing a lot of places, and on and on. He was given all sorts of medications, none of which seemed to have any effect. He accused the house painter's son of stealing some of his meds, which was a real problem as the painter quit half way through the job. Eventually he had a major stroke that left his entire left side of body paralyzed and without central vision (meaning he could no longer read or watch TV). Also he couldn't swallow. We both had advance directives of no feeding tube made years ago, so he went into hospice where he died three weeks later. I realize this is not very encouraging, but there would be a few good months interspersed with sudden episodes where he felt a "sense of impending doom" as he put it. From the time he had the first symptoms until his final stroke was about 8 years. He died at age 71, five years ago.
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It doesn't matter.

I understand the urge to know what behavior is directed by the dementia and what is from some other source, but it the long run you have to deal with the behavior presented, whatever its cause.

For example, if he suddenly decides to try something he really can't/shouldn't do, such as driving or getting on a ladder to put up holiday decorations, you need to find a gentle way of diverting him, regardless of "why" he has taken this notion.

If he is exhibiting a lot of anxiety, that needs to be dealt with by a mental health practitioner. Doesn't matter why. And I agree he should be evaluated for depression.

If his behavior toward you is different than it always has been, for example if he is treating you with less respect than he has for 50 years, or he accuses you of ridiculous things, or he sometimes doesn't seem to know you, you can chalk that all up to dementia.

Cherish all the normal conversations and all the times he can interact with you as the man you've always known. Deal with other behaviors as they come up, even though you won't always know what is behind them.
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Congratulations on your 50 years of being married. That's really incredible.

It seems that Vascular Dementia is the kind of thing that acts different ways with different people, as you stated above. I know that my LO was doing pretty well, running her own household, shopping, etc. and within a couple of months, she was diagnosed with significant dementia. The way you describe your husband sounds quite a bit like how she was at that time, but, she had severe balance problems and was falling continually. Also, repeating herself continuously.

I would assume that any issues you see are dementia related and chalk it up that way. I suspect that there are a lot of things that they aren't interested in doing, because they are confused or afraid of not doing it correctly.

I will suggest that you have him evaluated for depression. Medication for anxiety and depression, really lifted my LO's mood and she stopped so much sleeping and remained alert most of the day, except now she does nap at times.

My LO's progression was in steps and not as gradual as most Alz patients are. However, last year, her doctor said that she may have Mixed or VD and AD, both, but, I'm not sure. Four years from diagnosis and she is in late stage, wheelchair bound, incontinent, is hand fed and no longer speaks. (On Hospice) She was 62 at time of diagnosis.
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I agree. I remember thinking that it was like living in a whack-a-mole game - you'd just think you'd got one change handled, e.g. by putting coloured duct tape on the floor to guide the way to the bathroom, and the next day there'd be a whole new weirdness to contend with, e.g. unplugging all the appliances, and I don't even want to remember how exciting that got.

Having said that - and probably depressed you, apologies- there are clear explanations about what is going on in your husband's brain and other systems that your husband's cardiologist, geriatrician, stroke specialist, older age psychiatrist or indeed the Stroke Association or alz.org can offer, which will at least tell you what direction the surprises might come from.

You are looking at a package of problems, all interconnected. Heart disease is likely responsible for the stroke, and ongoing heart disease has gradually caused problems with the blood supply to the brain. The range of symptoms includes fatigue (often very marked after further strokes, which may not otherwise be noticed), but also depression, and also dementia. But the thing is that all of these symptoms are interlinked and need to be tackled together.

So if you take a three-pronged approach to combating it, you're looking at diet and exercise suited to heart disease patients, activities and possibly medication to support mental health, and whatever adaptations, gadgets and activities you think will suit your husband as an individual and, just as important, make your life easier.

What is absolutely crucial and non-negotiable, though, is taking care of yourself. You need respite breaks. If I may say so without offending you, a lady who has celebrated her golden wedding cannot be in the first flush of youth; and if you are to continue to care for your husband you MUST ensure you are getting enough support.
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In my experience vascular dementia doesn't follow the "rules". My mom's decline was initially physical, but the lack of initiative (apathy) and gaps in her memory made it clear she was having brain problems. Today she is in a NH, immobile and needing total care but still has days when her mind is pretty sharp. I've stopped playing twenty questions in order to figure out where the gaps in her memory are and just talk as though she was still all there, mostly she sleeps or is silent but once in a while she surprises me with a reply.
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