My dh seems to have bowel incontinence at the most difficult times to take care of him. Always when we are out and by the time he tells me anything, there's a big disaster that I have to clean up in a public men's restroom, sometimes with friends waiting for us. This leaves me very scared to plan anything away from home. How do you all handle this issue?
What's a "Vacation"? The only time we go away from our apartment is brief trips to our previous home (now owned by the kids) when they are here, such as Thanksgiving. It's only a 25 minute drive and I have everything there that I need to take care of her. Otherwise, I get away when she is at day care.
Okay, guess my instincts are correct - don't waste your time trying to take them on vacation because it doesn't work. They're more comfortable at home and so are you.
My husband couldn't handle a vacation. I do things when he is at daycare. The farthest we go is my parents', my sister or my daughter's. Even then he is only good for a couple of hours before he wants to go home.
We took 3 trips this past summer & DH did well (all in the car). I’m so glad that we did that because since then he has declined so much that he would not be able to travel like that now.
Elaine: Did you stay in a different motel/hotel each night? I have read where they get very confused from being in a different place at night...was that a problem for you. My husband and I have been on several trips the last couple years, but they have been cruises because that is what we like and his dr. said it would be the best type of trip since he would be in the same room and bed.
My dh has no toilet problems yet and I know that would be the end of any trips because I know I couldn't handle that. In fact, that is my worse fear and as of now it probably is the trigger for placement for me. I am not a big person and I would have such a hard time moving him around and physically handling him if I had to change his underwear, etc. inside a small toilet area.
My wife wants to go someplace all the time. I won't go anywhere anymore. Even though it's manageable, I don't have the energy. She's comfortable. I'm trying to save myself. So we don't go anywhere anymore. We could, but I won't. This is one of those things I hope does not haunt me one day. I have rationalized that we did so much in our marriage and that now it's secretly about me trying have each day be as easy as possible. I'm being very selfish, but I've already given my all and there is much to go. No more trips!
I want a break, and yet, I feel so guilty about leaving him, I know you all know what I mean. He just needs me so much, and seems to be lost without me.
We had a long lost cousin of his that has retired on this island, and came by to see us last week. He lives about 3 hours from here, and has a 3 bedroom house all to himself. He said that D can stay with him anytime if I need a break. And, even if he did not mean it, dh agreed to go there sometime.
This is like a miracle, some of you may remember my posts about his off island sisters, the ones that think he is possessed. They are OUT, I will not send him there and he does not want to go, (wonder why...)
I am looking at early December, taking him there for maybe 4 nights. I hope I can enjoy a little break and that he has a nice time with his cousin. He still can take care of his bathroom issues, though he does not drive or cook. Also I pick out his clothes for him or he will put dirty ones on.
Honestly, I am wearing down...so tired from taking him to work, and having to do everything here. I feel so exhausted, sore, trying not to be sad again.
Coco - before then I would make a few visits there so the cousin gets an idea of what he is in for. Maybe go spend a day, maybe overnight. Let the place be familiar to him.
Our daughter wants me to come help with granddaughter's birthday party for a few hours right after Christmas (which will be fun), but we will go home right after the party. We will also go down to their house on Christmas Eve and spend the night and go home the next day. Dh is ok with going down for Christmas, but does get antsy and wants to go home asap. Also, their bedrooms are on the 2nd floor and I get no sleep when we stay there because I'm afraid he will get confused about where he is and fall down the stairs in the night. A cruise does sound like a maybe, BUT, he does have bowel issues and it just isn't nice. So, I've just talked myself out of any trips with him, once again.
My husband is having some bowel incontinence issues, though he still can put on a fairly good show in conversation (he goes to a group called drinking liberals and can still contribute). He is going to visit a friend who can cope with anything this weekend, if he doesn't get worried and cancel. But the bowel incontinence issues do reinforce my conclusion that our days of traveling are over except to two places we go to every summer, where I hope the familiarity will make it easier.
Our traveling days have been over for 4-5 years! We did go for my Mother's funeral last year, 2 day drive, 1 night on the road; but when we got there he re-packed his bag and wanted to come home. Another 2 days back home. Had to go on another trip to go through my son's belongings. It was terrible, both for me and DH. He kept thinking we were at a "sale". Fortunately, he has no incontinence problems, but the "getting out of our routine" just sets him back terribly - and I'm the one who has to deal with it. So....no more overnight trips at all for us.
JudithKB, no we didn’t have to stay in any hotels. We live in Maryland & went to Milwaukee Wisconsin twice (my hometown). Our son lives in Ohio so we drove there & spent the night. It was confusing for him, but he handled it pretty well. He even did well in the car. But in the past month he has been declining & even an hour in the car seems too much for him. Coco, sounds like a good opportunity for you, but I agree with Charlotte. I would go for a visit & maybe overnight & leave them alone for a few hours to see how that goes. It sounds like your DH is like mine, very clingy & needy. Yesterday I had to get our van worked on & left him with our daughter. He usually is fine staying with her a few hours, but yesterday he was in a bad mood & I think she was a little apprehensive about him being there (which I totally understand) so I got home as soon as I could. He stays with her a few hours every week so I can have some time to myself. I told her that she doesn’t have to do that anymore, but she said that we can still try to do that. She knows that he is in a decline & she thinks he will mellow out. Who knows? Good luck with your plans with the cousin.
The last trip we tried was last Spring for our grandson's highschool graduation. A 7 hour trip by car. I took snacks and CD's of his favorite music and that helped keep him occupied. Also my daughter and her family made the trip and stopped for lunch with us. I was afraid he would get out of the room at night so I bought one of those things that you stick under the door that sounds like a siren if the door is opened. I felt like everything was under control until I got in the shower and started thinking about what would happen if that siren went off and I was stark naked. Everybody in the place would have been at our door! Very quick shower.
Our last vacation was a family trip this past summer to a beach in Mass....we rented a house for a week, our kids, my son's fiancee, and our grand daughter were with us. It worked out perfectly, I had help with DH. He has no incontinence issues yet, but I wonder if we will be able to do that again. We want to try this year...we will see. The trip was a little challenging.. had to find family restrooms to use, but we managed.
Check out this blog from last January - http://www.thealzheimerspouse.com/Endofusvacation.htm It addresses your question directly. It is, most likely, the last vacation we will take together. The upcoming Thanksgiving trip to Chicago is a different situation - it is at my sister's house, which will be full of people, including my son from California, who will look after Sid. Knowing my sister as I do, she will be yelling at me to sit down and let everyone else get Sid what he needs. Everyone will just answer his repetitive questions and it won't bother them to do it. He will be very content to sit on the couch and and throw toys for Rufus to fetch - he's my sister's black lab, who thinks he's a lap dog.
Vacations are a thing of the past. We did that and now it is the long haul to the end. Too much trouble to get in and out of a car. She does not understand anything about how to move her body. My sister is comming to visit next week that is about as good as it gets these days
Claude, my daughter and I took a 4000 mile round trip "vacation" about a year after he was formally diagnosed. He was so obnoxious the first nite, our daughter threatened to turn around and come home. He straightened up. She was 'his little girl" and he listened to her when he would totally ignore me if I said the same thing.
Well I'll tell you more after Feb. We plan to spend that month in a condo at the beach as we've done for several years. The only difference this year is a different condo- this one a bit less expensive. He is in favor now and our sons have insisted we go - so we'll see how things go. I think it may be the last year - I hope not it is so relaxing or has been. We have not been away since last Feb and he did fine then - but a year has made lots of difference.
once the incontinence issues are unpredictable i couldnt travel with DH anymore. it just became too overwhelming to try to clean up in public baths and i was constantly on alert that something would go wrong. the wanting to 'go home' was another issue. as soon as we got anywhere he was pulling on doors wanting out to go home! now bless his heart he hasnt been out of the house in 2yrs. but is very content and comfortable in his little world.
We went on two vacations this year and they turned out all right. Mine does the same thing as yours, Divvi. On the first two days he keeps asking if we're going home tomorrow. After the first two days things get better. But, I would never take him on a plane. I drive and he's fine in the car, so far. Toileting issues haven't been much of a problem this year. If they were, I don't think we'd go at all. The trick, though, is to take your spouse to places he's familiar with, places he's been to many times before. That's what I do. We go to places we went to regularly. I don't think I'd take him anyplace new.
MotherT, Kathryn and I traveled until this last October. She is now a full stage 6 and simply can no longer handle it. Now I plan our vacations near home and they are only a few hours long. I am finding out this works well because she now lives in the momment and is very happy on our little vacations. Our last one was an over night stay at a local hotel near her favorite shoping area. WE checked into the hotel early and spent the day walking around the shoppiong area, had dinner and saw an early movie. We returned to the hotel early and just relaxed in tyher room until she got tire and I put her in bed. In the morning when she got up I jhelped her shower and we had breakfast and checked out and drove around the city for a little while and then went home. She had a great time.
She does have both kinds of incontinence. I handle that by having her go to the bathroom every couple of hours.
Clean up in a public bathroom today, at physical therapy. They were concerned but not particularly helpful. You would think they would have had a box of wipes they would have pulled out.
One of my frustrations is he refuses to sit on the toilet on a regular schedule. Major bowel incontinence that happens about once a week is a pain because it doesn't seem to justify protective underwear. He insists on wearing a tight belt and bluejeans and so if he is wearing protective underwear it is much more difficult for him to manage his clothes to urinate. And of course he will only wear boxer shorts, which don't contain the mess. He manages almost all of his own activities of daily living still so I'm not in a position to insist yet.
Can't remember the last time we had a vacation...we could go, no toilet problems yet, but Dh would not remember any of it, there would be no vacation memories for him. I don't know if i could handle any outbursts if he got so confused and wanted to come home.
Coco, I hope it works out for you and you get a so needed break. I agree with Charlotte about seeing how the cousin would cope in that situation...all the best.
Here is something I learned on our last trip which was a cruise. The ship was crowded and all the elevators were always packed. Well, we were waiting for the elevator and it stopped and had lots of people on it from the floors above. The door closed and my dh was not behind me. He always knows to stay close behind me. I knew he would not remember our room number or floor. I tried to remain calm and went back to our room. Within a few minutes he was back to the room. He had a little piece of paper in his hand where someone had written down the floor and room number. He couldn't remember who gave him the floor and room number
Lesson learned: Never get on an elevator in a strange place in front of your dh. If we get to go on another cruise I am going to ask for one of those locating braclets they put on children.