Husband failing slowly down hill no slowing down, dementia and Parkinsonism. Anyone have experience with this?

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I have no one to educate me or help. I'm scared in the last 8 months there has been slow decline with once in a while something out of ordinary like we had busy Memorial weekend and without thought I had planned a doctor appointment the next day we had our daughter and family here so naturally everything different. The following day he went outside thought he wanted to mow lawn [too hot] came in [I also try and let him do certain things so he feels helpful ] anyway he like crashed into being confused for 15 hours didn't know where the toilet was could get into bed right just couldn't function. At time I had a VA nurse I could call and I did assessment of stroke he was able to use everything and followed my hand with his eyes. She said follow my gut. It didn't seem like a stroke read on line maybe delirium but it said after hospital stays to to this day I'm not sure what it was but he isn't quit the same. This story is to long to explain. Without support the nurse is done at VA and no one has called to take over our case [a month] I feel abandoned by friends [They seems distant now] and the system. I know routine!!!!! but I'm only 61 he is 66 its been a little over 4 years I sold my business given up everything and yes I have a hard time with routine everyday I have a lot of responsibly with house and outdoors and my grandkids are the only thing I have to look forward to so I know its hard on him when they here everything out of wack but, I can't have that taking away too, I love him dearly we have been married 43 years, hope you understand I need to vent cause no one else seems to have time to listen , BIG question has anyone had a episode for 15 hours like that.

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I am in a similar situation, My husband has Alzheimer’s and is also showing signs of Parkinson. He has to have 24 hr supervision. He hardly ever sleeps through the night. I was lucky last night I got 6 hrs sleep. I do have a sitter that comes in three times a week so that I can go to work. That’s helps a lot. Most of the time he can’t get in bed by himself. He is totally incontinent. He is still mobile and wonders all the time walking from room to room picking up things and moving them. I have to rearrange things all the time. We do still go to church when he cooperates. He can not dress, undress or bath himself and he can not feed himself unless it’s finger food. Like you. most on our friends have distanced themselves, not all but a lot. Our home has always had a revolving door with people in and out all the time so I do feel alone most of the time. I know that people stay away because they don’t know how to respond to him. Most of what he says doesn’t make since. We will have been married 50 years this December. As for the 15 hours, mine seems like 24/7. Hope your husband progression slows down. This disease is very mean. Know you are not alone.
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Reply to Heartsick2
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Thank you all for advice. I was in shock the behavior specialist from V.A finally called today to get ball rolling we will see ,i try not to get to excited in cases that one drops the ball .My husband does have neurologist doctor local he was on vacation and he was checked for UTI no problem there ,He has choice VA because we live in the sticks everything is quit a drive ,We did have a dementia care RN at V.A. that i could call but ,all of sudden she is gone and we haven't heard from department since, Yes i have one daughter a hour away three little boy's and full time job works days and husband works 6 days a week and night's and watches there kids during day so at this point in there life they barely get to see each other when they come he does jobs for me and she is a good support but boys are busy ,2,4,7, so its hard right now i don't like to ask much till things get a little better for them .Other daughter lives on west coast. We were the babies of our families so everyone has pasted in my family except one brother [vet too] husband sibling's two out of state and other 80 and doesn't drive so were stuck . Believe me when i say i have reached out doctors ,system , Seems every doctor is so busy not a lot of time to spend on each patient and maybe after today we can get at home primary care . and someone in for me to get food and errands. With comments above i wanted to address some comments as to where i'm at and what i've tried but ,there are a lot of good ideas here and i appreciate everyone of you, I had a hard time finding the answers and i'm not sure how i did ,Have to figure out how the sight works yet.and i'm not sure how to ask a question to one of the comments above??
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Reply to SuzyQ22
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Dementia + Parkinsonisms = Lewy Body Dementia, LBD, right? (If the Parkinson's symptoms came first by a year or more, it is called Parkinson's Disease Dementia, PDD)

My husband had LBD for 10 years before his death. I know that can include a "broken thermostat" and particular sensitivity to heat. I bought him a cooling vest so he could continue to golf. After he died I passed it on to another LDB guy who used it to keep himself cool while fishing. Hubby golfed with a league sponsored by a rehab center and they were very careful to keep their golfers hydrated and also cancelled sessions for excessive heat.

In spite of our efforts he did get overheated a couple of times. Extreme fatigue and confusion were the results. I encouraged lots of beverages and let him sleep as much as he wanted to. I don't know if the confusion lasted 15 hours, because he slept a lot of it. He was still tired the next day, but did recover to his baseline within the next day.

He would also get overtired and somewhat more confused after events like parties at our home for our grandchildren, or going out to some event. But I always felt that being tired was worth it for him. He'd bounce back after enough rest. He would have been tired less often, and more even in his confusion if we'd skipped the graduations and weddings and golf and bowling and outings, but what kind of a life is that? His neurologist encouraged as much activity as he could tolerate. Staying calm and avoiding excitement was not going to cure his LBD, so help him have fun!

If your husband enjoyed mowing, good for you for letting him! Perhaps in the future on particularly hot days you could encourage him to wait until evening. Or you could say you have a headache and you'd like him to postpone the mowing because the noise would bother you.

PDD and LBD and even just Parkinson's do progress. Your husband is not the same now as he was earlier. And he won't be the same later. The disease is always changing. Sometimes the changes a subtle and gradual, and other times a new symptom seems to spring up between breakfast and dinner. But progression is inevitable.

Come her as often as you like! Another excellent place to vent is a support group for people with dementia -- dementia with parkinson's if possible. Check out the LBD Association website (LBDA.org) to find groups in your area.

You do need medical support. If the VA cannot provide it in a timely manner, consider getting it elsewhere.
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Reply to jeannegibbs
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I agree that unless you are a nurse, you shouldn’t be winging a diagnoses of stroke or not. When he shows symptoms like that, or anything else out of the ordinary, call 9-1-1 immediately.

It sounds like the VA has dropped the ball. Make phone calls and find out what who his case manager is. If you have grandchildren, you have children. If you have a son or son-in-law, have him call the VA. Sometimes when a man, especially a young man calls, they sit up and pay attention more than to a “little old woman” like us.

I’m not sure you should wholesale dump the VA although I haven’t heard much good about their care. My husband has Medicare and supplemental (Medigap) and part D. We pay close to $300 a month for all this. Not cheap. Plus his meds are over $100. If you’re considering dumping the VA, call one of those insurance brokers (you can find them on Google) for advice.
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Reply to Ahmijoy
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I have PD. It's not a fun disease. There are so many issues. You are not alone. You can't do PD alone. You need a team of family, friends, and healthcare professionals.

The confusion could be a sign of urinary tract infection which is common for PD people. I have PD and get confused and spacey when I get a UTI. None of the symptoms that I had as a younger woman.
Frankly, you don't want to evaluate strokes or other neurological issues on your own. When an acute situation is happening, call the paramedics and have him evaluated in the ER.
And there are resources for PD caregivers. It's not easy handling PD, but with facts you'll feel better about what is going on. Even find caregivers who are having the same problems and experiences you are.
Google Parkinson Disease. There are patient support organizations have in person or online support group. My group allows us PD people to talk about the real deal of PD.

Get your husband out of VA. You need local doctors with whom your husband isn't a number. Again, if you think you're saving money by going to VA, you might not be. My Medicare and Anthem Supplement require no copays and choice of any Medicare accepting facility.
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Reply to maryqesq1
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You need to call the VA and find out who is handling his case now. If he has a neurologist did you call him about what had happened? If you don't have one ur husband needs one. The doctor can explain what is going on. Someone on forum has had the same experience and my post will bump you up.
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Reply to JoAnn29
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