I am feeling really burnt out from work and caregiving. Is getting respite care, so I can get away for a few days, worth it in lieu of the risk of a decline in DH? I would like to rent a cabin for a couple of days.
Last year when I did this my DH mistook the white kitchen garbage can for the white toilet! I came home more stressed that when I left.
I am wondering about the same thing, but my getaway moment is not till Christmas. I am seriously thinking about not bringing him to the States for the family gettogether. But already I am worried about the effect on him; he wouldn't understand and I think would feel so abandoned.
Yes, yes, yes, respite is worth it. You need it. Just ask any of the members who went on the Caregiver Cruise in February.
We cannot run on empty. Then we have nothing left for ourselves or our spouses. As long as you leave him in good hands while you are away.
As for decline, if it is going to happen, it will happen whether you are there or not. If decline is related only to your leaving, it will rebound when you get back into the regular routine.
I find I wonder about it. I was in Iceland for almost 3 weeks and while it was not exactly a holiday as I was helping the middle girl and her hubby ready the summer rental homes, it was away from the daily onslaught. However, when I returned, it was hunt up the dishes, run to the DMV twice to get a replacement placard for my husband because while I was away his was stolen from the truck, and all the other chores..I am still doing laundry and trying to get unpacked and sorted out..I feel like I have not been away at all.
I think we need to clarify here - are we talking about leaving our spouses home alone or sending them to an overnight respite facility or having someone come into your house to be with them while you are gone? It makes a huge difference.
If you THINK they are able to be on their own, and you leave them alone, you will probably find out when you return, that they are NOT able to be alone, and yes, you will have more work than you had to begin with. But, as I said before, if you leave them in capable hands, you both should be fine. But then again, I could be wrong on that.
Mary (Red) and Dee - you two went on the Feb. cruise and left your spouses in capable hands. They were fine when you returned, weren't they? Or not?
I've been amazed these past five days how well DH did while I was recovering from some painful oral surgery. We live in a retirement complex and I had my meals brought up by room service. He managed to go down to the sandwich shop at noon, buy food, eat it overlooking the pool, and came back upstairs happy. In the evening he went down to the dining room alone and did just fine. Since he sometimes has trouble figuring out menus I was surprised at how well he did and how upbeat he was. It was almost as if he enjoyed not being so dependent on me. He even went on a couple of walks around the grounds, got books from our library, and just generally coped.
JeanetteB-I did bring him with last year but it confused him too much, particularly with the toileting. I ended up way too stressed because it was such a nice place and I was worried about leaving it in as good shape as we found it in (hefty damage deposit involved). Also didn't dare take a walk without him but he doesn't like to walk much.
Joang-I would definitely leave him in capable hands (but have yet to determine where that would be.)
Anyone have thoughts on hiring someone to come in vs having him stay somewhere with help?
I left DH in the hands our daughter ( she is 48) and after that his brother who is 63..so they were mature folks. Still, not self starters I guess but then live and learn.
I have a friend who went on a business trip for about 3 or 4 days, and had her husband's brother come to the house to stay with him. The brother let her AD husband do whatever he wanted, to the detriment of his health. Next time she went on a 2 day trip, she left her husband alone, with friends checking on him, and he did much better. Yup. Live and learn.
Dog... I don't think you understand the meaning of "respite". It isn't respite if you are still taking care of him. The whole idea is to get "AWAY". It isn't always easy to arrange. I am fortunate that I have family who step up and even make arrangements to get me out of the house. But I can tell you this, even when you manage to get away the guilt can follow you. none of this is easy.....
Hb went to sleep at 10:30 last night and I woke him up with breakfast at 9:30. He ate then went back to sleep until I woke him at 2:30 cause I was hungry. I think he has caught up on his sleep from the funeral stress. Me: last I knew it was 2am and I woke up at 7:30 and couldn't go back to sleep. Finally went down for breakfast at 9 and brought his back. I did take a 2 hour nap until I woke up hungry!
I asked him about the funeral and he remembered the basics but not much else. I guess that is good he doesn't remember being so confused or loosing it those two times. Or that his brother had them hand him the flag instead of dh who is the eldest child AND served in the military too (brother didnt').
tomorrow we are going to get up and do something. Not sure what but we are not going to sit in the room all day again. the weather will be nicer (the rain followed us from Oregon!) so we can do some walking maybe. His niece works all day and his sister goes to day care at Easter Seals. Niece was telling me the first 3 weeks she cried when she dropped her mom off and cried when she picked her up - reminded her of when she dropped her boys off to kindergarten the first time. I smiled and said 'they will be that way'. I guess she still doesn't like to go but that is all sil talks about is all the fun she has 'working' there. many of you can identify because your spouse is like that.
Yes, respite is worth it. This year I had my first overnight respite since my husband's dx--5 years ago. His sister came in from Texas for a few days to stay with him while I went away. I also had our aide here for 4 hours each day--it worked out very well. The aide is used to taking care of him and could help his sister learn the ropes. It also gave her an opportunity to help us, which she wants to do but what can she do to help us long-distance (besides lend emotional support)?
I considered letting DH stay in an ALF for a few days, while still attending his daycare program (at least that part would be familiar to him). However, at this point, it would be too distressing to him--he is still "with it" in some ways. Perhaps later on I'll try that alternative--his neuro says that's a good way to check out ALF's for possible use in the future.
Respite for me - for the caregiver cruise - WAS worth it, though it turned out my daughter needed more help than we had planned for, and had to get the daytime CNA caregiver (who normally comes 2 mornings a week) to stay until he got to bed. And of course I came back to the same-old same-old.
I also went on the cruise. My husband stayed alone with friends calling once a day and someone taking him somewhere once a day. It was the last time I'll leave him alone, but nothing too bad happened. Although he promised he wouldn't, he decided he would learn the bus routes and rode all over town, apparently with no problems. Of course he doesn't remember promising. He also was persuaded by a marketer to charge $500 for a "free" week in a time share. He didn't understand that we would also have to pay transportation from Illinois to Florida. He was told that women really like the time shares and that he had to do it then, he couldn't wait to check with me. I managed to get the charge taken off our credit card when I got home. I can see worse things happening in the future if he's left alone!
Janet, that's what worries me too about leaving him alone. He is capable of doing thing for himself, but I worry if someone came to the door, a salesman, etc., I don't know what he might do. We did get a phone call from our lawn service while I was out and he told them that Vickie makes all those decisions! Or if the electricity went off, or a toilet overflowed - I don't think he would know what to do or who to call. He does call me on my cellphone, but I wonder if in the confusion he would remember.
I have been reading this thread, but waited until now to join in. I have just returned from 5 days respite. My wife is now on hospice so they take care of her (in the local hospital) for 5 days every 90 days. On Thursday of last week I put her in the hospital, then caught a plane from Maine to Chicago to visit our daughter and attend a graduation party for our step-great grandson. I saw lots of our daughter's friends who have been asking her how we are doing. I also saw a neice I hadn't seen in 20 years. When I returned to Maine yesterday and picked my wife up at the hospital I wasn't sure she recognized me, but she did seem happy to see me. She came home willingly, and since then everything has been pretty much as it was before.
Marsh, I am so happy you had a good trip and respite that you needed!
Dog, you wondered if respite was worth it?
CONSIDERING THE FACT THAT I DO A "HAPPY DANCE" EACH MONTH FOR A COUPLE OF DAYS PRIOR TO RESPITE, AND FOR THE FIVE DAYS OF RESPITE, I think that you can get the idea that I KNOW it is worth it......since my husband is almost chair/bed bound (and IS, unless we help him to stand up and hold his arms while he walks from one to the other) and since I have to do everything for him (dress, feed, shave, etc.), I stay tired, so my respite is allowing me to catch up on much needed rest now!
For the cruise, for business confences I have attended, for weekends with my children.....oh yes, in the past I enjoyed the respite then too ( I have been getting it for a year now - 5 days a month). I learned after the second one that even if they decline, they would have anyway. The first time I felt guilty leaving him and couldn't enjoy my trip. The second one, I enjoyed. The third one I looked forward to. The fourth one I counted the days....
Don't get me wrong. I love my husband and I take care of him - and I keep him home because I know he'll get what he wants and needs there. But it does take a big toll on me and it gets larger the closer to the end he gets.
BUT, you must have people you KNOW you can depend upon to watch them. DO NOT go off and leave them alone, even if you have been doing so for hours or all day. It is different when they see a suitcase (I always hide mine so he doesn't see it - and we take him to the Hospice Hospital and stop on the way and get him a milk shake to drink going there and going home afterwards - like a child, it is his reward). When small children see parents leave on a trip, they sometimes act up and sometimes cry and sometimes throw a fit. As a safety precaution, I recommend NOT TELLING them you are going. A "see you later" does fine. And a smile and a big "hello" and a hug when you get back and they will have forgotten you were gone.
Mary, thanks for the encouragement. I'm enjoying three days per week of day care, but I'm working on some full time care so that I can go and see my mother. She's 88 and not getting any younger.
So where do you go to get respite care? I have no family and DH family won't help, they avoid us like the plague. I can't afford to pay, we are living on a very limited income.
I am in the same boat with you, struggling with how to pay. My husband is in day care while I am at work, which isn't exactly a respite for me, and day care costs pretty much eat up all his social security disability.
Good luck with your parents situation, too. I have been strugling with that as well the last 5-6 years. No wonder we need respite!