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I have to put my hubby into "respite" care for about 6 weeks until I return to the states to take care of some vital business including my passport renewal. He has Parkinson's Lew Body Dementia and cannot be left alone. While his dementia is moderate (aware of things going on around him), I'm wondering what I can expect upon my return as to his behavior. I'm mostly concerned about how he might be affected mentally being moved from home to care and then back home again. To complicate matters, our UK home is up for sale and with any luck will sell within the next six months (a rather larger expensive home), and he will eventually be required to leave his familiar surroundings within that time period.

My thought was two-fold - "respite" would be a good way to introduce him to a new living environment, and the gradual introduction to "respite" during the six week period would serve as a precursor to what will eventually take place with his care.

I have been his primary caregiver for two years because he has not been tolerant to people coming in to give him care. He is a modest and very private person and presents with no real disruptive behavior, but he is very much stubborn and like I said, very aware of what's going on around him even if he doesn't remember what happened for two days ago.

He is very much ambulatory and physically able to do things on his own with prompting, but because his Parkinson's cognition issues exist, there is the possibility of his being moved from one environment to another will cause him real disorientation which might tend to promote a decline in his mental health.

While I welcome all comments, I would really like to hear from those of you who have used "respite" care to get some idea of what your experience has been once your loved one has returned home.

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Thanks to all for your comments. Much appreciated!!! I think I will at least know what to expect upon my return. Since my husband is in his home country (UK) and his family and good friends will be visiting him he may be okay. I am hiring a person (good friend of ours) to pickup his laundry once a week and take him out for a meal or short trip. Hopefully, this will give him more assurance that he has not been deserted or forgotten.

I had to laugh at some of mymares comments - they mirror many of my husband's tactics. For some reason he has always tried to hide his medical condition from his friends not being aware that they have been told that he has Parkinson's with Lewy Body Dementia not to mention the fact that he can't think clear enough to know that his friends can see how the disease has changed him. Oh well, I suppose this makes his feel better so "good for him."

Once again, thanks to everyone for their input.....
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I have found depending on the area of the VA system you live in, respite works differently.. I live in Jacksonville FL and the VA here is overwhelmed.. Respite has to be set up many months in advance. Next month is when I call to set up 2015 dates.. Here he goes to the Lake City VA hospital Community Living Center which is part of the hospital, a little over an hour drive from home.

Also, here respite is for 2 weeks at a time only, can not be shorter or longer.. They have tight schedules for veterans in and out.. SO I plan my time around the respite.. I know in other areas you can do weekends or shorter terms, sadly not here. But I am happy to have the 2 weeks twice a year... Also, in this area you can have someone come for 4-6 hours once a week INSTEAD of the 2 weeks, its an either or setup.

Most area's also have Adult Day Care.. Here there are only 3 that are contracted with the VA, and the nicest one I found when checking them out is 26 miles from home (Jax is the largest city landwise in the country, over 700 sq miles).. the closest to home also had children day care and that was not going to work for us.. Another was not in the nicest neighborhood.. We picked the one farthest away. but its not far from highway that we live close to, about 1/2 drive with no traffic..

Depending on the veterans service connected rating, there could be a small co-pay.. My husband is 100% SC, so we have no co-pays.

The veterans social worker at the VA is your best source for information on respite, day care and what else may be available in your area.. Not all VA's offer the same programs.. The social worker can also help to start the set up of respite and day care.
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The move is not what will be stressful for him, it is your absence. My husband was hospitalized and then in rehab for about 10 days. Even though I went and visited with him, he was so traumatized by it, he refused to use regular underwear and began just using disposables. He also started stealing food. I guess he was so used to getting whatever at home that the restricted eating routine made him start hoarding food. He would find their refrigerator and eat employees lunches. Afterward, he started stealing candy at the grocery store and I would have to check before we left the store.
We moved into another house a couple of years later and the move went very well. I made a point to show him the new place several times, each time telling him that it was our new house. He participated in packing (watched mostly) and watched the truck being loaded and unloaded. The first thing we did was put the bedroom in order and arranged the furniture in the same pattern that the old house had. The adjustment was almost immediate. We went back to the old house a couple of times to get a few odds and ends and he was fine with that.
He began telling me to turn there, toward the new street, within a week of moving.
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I used respite care through the VA hospital for my father-in-law. It was a blessing and I used it to take a vacation once, and for long weekend just to get some rest at other times. I needed it as he needed more and more care. However, it always took a long time to get him back on schedule once he came home. While he always said he liked it there and didn't mind going he would act out for a long time afterward. If he was there for three days he was angry and hard to deal with for a week. If he was there for a week it took three weeks for him to settle down. Part of the problem was that his routine was disrupted and he had a hard time with that. Part of the problem was hospital personnel did not read or comply with his many dietary and medication restrictions. (Like crushing his meds and putting them in applesauce so he didn't spit them out.) He needed a special diet due to swallowing problems and often he was given things he was not supposed to have resulting in aspiration and another bout of illness. It reached the point where I only used respite when desperate. I hope your experience is better.
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I know Medicare provides a week of respite but I was not aware of the two weeks from the VA either. I am in the same situation as mymares, my husband was away ( not for respite, but medication work up ) for 30 days, he thought he was working there for the Navy which ended up being a God send after accusing me of abandoning him, it got to the point, I stopped calling daily also, and when I visited he pulled a chair up to the door to sit and wait " till I came back" heartbreaking indeed. He came back home mid December and the first week was shaky, as he did not understand the comings and goings 2nd week he became acclimated to home and then he was fine, it's the change and being taken from their "Rock" which is you - I wish you luck in this - but even though he's in a safe place while you are gone, you will be on a constant guilt trip, been there done that.
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I didn't know that the VA could provide two weeks of respite care! That sounds awesome! So you could do a week or even a day at a time? Just asking! That would be just wonderful for certain times of the year.
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My husband has been home from respite a week today.. He can go twice a year thru the VA for 2 weeks. He also has LEwy Body Dementia with Parkinson's the Dr's believe he has mixed dementia's also from PTSD.. His Parkinsonism has worsened over the past year with his legs giving out on him easily..

First let me say he still tries to hide his dementia's from folks. He doesn't want anyone to know how bad it is.. And this takes a big toll on him by the time I pick him up.. By time when get the car in the parking lot, he just about collapses from his rollator into the car, he finally can be himself again without putting on a show for anyone. He is still very good at trying to hide his cognitive issues from everyone besides me. tho, not as well as he use to.

Physically he declines too.. He is on "guard duty" while away and doesn't sleep as much as he does at home (which is all day ) .

Today being a week home, he is starting to get back to what has been normal for him lately.. Today, I am bringing him back to Adult Day Care for the day.. He goes here 2 days a week, he can go 5 days, but I feel terrible bringing him.. I schedule my own appts, go food shopping and just sometimes have a day for my self when he is as at ADC.

In the end, my experience has been, its hard on their mind and body and they bounce back within a week or so.. Depending on the individual, if they try to hide their illnesses from others (as mine does when we are out in public or at his Dr appts) it takes a bigger toll on them.. Mine gets disoriented to time more and thinks that I have forgotten to come get him.. I think, that he thinks if they see how he really is that they may want to keep him, so when he is there, he doesnt complain of any pain, discomfort and tells them he understands things when he really doesnt.

we dont have any family in the area,if so, they could visit while he is at respite and I am not sure if that would help or be worse.. Depends on the patient I suppose.. But if your husband has friends or family that are able to visit while he is there, that may help, so he doesn't think everyone has forgotten him.. Our kids try to call when he is there, but he cant answer phones, and if they call the nurses station, its always while he is away from his room.. they live in different time zones and work, but I know they try to call.. It was decided between myself and the staff that I DONT call while he is there.. In the past it has totally disoriented him , and he sits and waits for me to pick him up... I do call and talk to the nurses and Dr, and they tell him that I called..

Hopefully your husband will be fine with the 6 weeks Glowgo, sometimes we have to do what we need to do. I would expect upon your return he will be happy to see you and take a week or more (first time mine went it was 2 weeks) to get re-adjusted.... Good luck with all..
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