What has been your experience when a loved one returns from respite care?
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.
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.....
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..
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.
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.