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    • CommentAuthorbhv*
    • CommentTimeAug 21st 2016
    Hi. I don't know if anyone will be interested in this...
    DH spends so much time just watching TV and we were in a heat wave a few days ago so I thought I would try lunch and a movie to get cool and see something different. A few months ago I tried Five Guys, but it was too confusing for him. Poor guy was shaking so much he could hardly eat the burger. Another time BJs was better but he couldn't figure out the menu.
    This time I didn't show him the menu and he said he liked this room. But I made the mistake of ordering something new. He didn't know how to eat it and said we would never come here again. It took several tries to get him to look at me and see how to pick it up and just eat it like a sandwich. Next time it will be a plain burger.

    Movie was Jason Bourne. Might have been good. We saw about half of it. Our theatre was a long way from the bathroom. He kept trying all the other theatre doors thinking perhaps the bathroom was there. Three trips, each taking about 15 minutes.
    Disappointing because about 6 months ago we saw several movies and he had a good time. I guess movies are out now. DVDs are better at home. We can pause them for bathroom trips.
    I feel like I should try finding things to do for entertainment while he can still get around. But I am spending so much time doing all the jobs he used to know how to do I get too tired and annoyed to try joyfully taking him somewhere. Desperately seeking some way to think about this to stop the overwhelming despair.
    • CommentTimeAug 21st 2016 edited
    "Desperately seeking some way to think about this to stop the overwhelming despair."
    Could you get someone in from an agency to take care of him while you go out (alone, or with a friend) to lunch and a movie?
    You need a break. Please take it. Please, please.
    • CommentAuthorCharlotte
    • CommentTimeAug 21st 2016
    I know many people try to keep their loved one with dementia entertained looking for crafts and activities they can do. I am not one of them. He was never one to do crafts or play games so I would not know what to try. I do try to find TV shows he can watch which is usually games shows, sports, and the old shows we grew up on. Other than that he is on his own which usually means he sits or goes for a walk. His walks use to be around the park which is about a half mile and takes about 20 minutes but he usually is back within 10 minutes unless he finds someone to chat with. So I am one of those bad caregivers that do not feel obligated to entertain them. My MIL tried that and she died 9 years before my FIL from a massive unexpected heart attack. Maybe if we had a lovey dovey relationship I would be more inclined but I think I am just trying to get through this disease doing what is needed and little more where he is concerned. Day care gives him social interaction 3 days a week.

    Movies - we never went to movies. I just could never validate the expense. The last movie we saw in a theater was when RV starring Robin Williams came out.

    Going out to eat: same places all the time. I repertoire is: Taco Bell, Dairy Queen ($5 lunch that comes with a sundae) and sometimes Burger King. Menu: I ask 'same ol same ol?' to which he answers yes. I am the one that changes my menu around. All three we can eat for $10 or under (plus tax) which means we can go out more often. Once in a while I will splurge and go to Home Town Buffet but neither of us eat enough to make it worth the cost - IMO.
    • CommentAuthormyrtle*
    • CommentTimeAug 21st 2016 edited
    bhv, Entertaining my husband was not optional. It was a necessity because he had unlimited energy and would not stop getting into things. The best advice I got was from a social worker who said, "If you don't take control of this situation, the situation will take control of you."

    I tried to take control by hiring an aide privately for 6 hours a week. She came from 5-8 twice a week and took my husband shopping, cooked for him, shaved him and trimmed his mustache and generally entertained him. A year later, he started going to day care 4 days a week and after another year, I had an aide come in one day a week for most of the day. They would take him to small museums or demonstrations or shows at a local center (a dog show, a motorcycle show) or just to Costco. (This level of help was possible because my husband was eligible for veteran's benefits and the VA paid for 3 days of day care and the once-a-week aide.) Even with all that help and despite the fact that my husband was fully continent, I became overwhelmed and exhausted.

    So you see, you are not alone in facing this problem. But just thinking about it will not stop the feeling of despair. You need to do something about it. Unfortunately, in the U.S., no one provides us with a roadmap that shows which kind of help might be effective or how to pay for it or if we can even afford it. We have to figure all this out by ourselves. I suggest that you start at your local senior center or counsel on aging and ask if they have anyone on staff who can educate you on what kind of help is available in your area. (When I did this I learned that our senior center kept a list of private-pay aides for whom they had run criminal record checks and reference checks. That's where I found out twice-a-week aide.) You can also call around to day care centers to find out about the programs and the costs. (It was by calling day care centers that I found out about the VA benefit.)
    • CommentAuthorLindylou*
    • CommentTimeAug 21st 2016

    My partner and I go out at least once a week at present - (usually with my brothers after a movie, sometimes with her mother.)

    My rules have been gradually evolving:

    We only go to restaurants with calm ambiance. I usually ask for a booth. And if there is a bar we get as far away from it as we can get - the noise and tvs are too confusing.

    I order only what I know my partner likes. Until recently, I'd give her a choice - "Would you like fish and chips or a cheeseburger?" Now no choice because she can't choose. I do it gently and courteously. Its been a long time since she's used a menu.

    If meal is meant to be eaten with hands and fingers, all sides must be able to be eaten the same way. No sandwich with cole slaw unless I am planning on cutting up the sandwich so it too can be eaten with a fork. Switching from fork to hands and back is too confusing. If I don't want her to have a knife or fork, I quietly remove them. She hasn't missed them yet.

    If there is too much food on plate I ask for another plate and prepare her meal on that. The remains usually go home with us in a bag. I have occasionally asked waitress to bring her dish first with an extra plate and put them front of me. I tell them to come back with my meal into or three minutes.


    We are currently limited to G and PG movies. Frequently don't go to the same movies my brothers watch.(We can't watch the news or any violent shows at home either.)

    We get to theatre early enough so we can stop at bathroom first. I too have missed the ends of movies. Last week nature called before the end of BFG. Maybe I'll get to see it on NetFlix.


    MARY75* has good ideas. If you can get away by yourself, or even better with friends, do it. My partner will not stay at home with anyone but me (although she goes to daycare). I've been importing friends - thankfully they've been coming through like troopers. I usually invite three so they can entertain themselves if I am called away temporarily to care for my partner.

    I do know, in spite of all my "rules" everything eventually does and will change. Maybe there are ideas here that will help. Know we love you,bhv.
    • CommentAuthorbhv*
    • CommentTimeAug 21st 2016
    Wow. I thought I wrote a boring post. Thank you for the great ideas!
    Mary75 So far I can leave him alone for short periods. I have a sewing club this week and sometimes go out to lunch with my girlfriends. Also set up a safe room.
    Charlotte we are on the same page. I got Dvds of NCIS seasons and can put them on to play for several hours. Like if I go out with friends.
    Myrtle, good tips about the aides. I am going to start looking into that and day care. I took a wonderful series of classes at the Office on Aging and have lots of lists of resources.
    Since one minute I am the best girl and the next I am the worst f*!&#! Asshole in the world and sometimes he still gets agressive, I am not sure how an aide would work out. Will have to try it sometime soon.
    Lindylou those are great tips for eating out. Really makes a lot of sense. Like the sides needing to be eaten in the same way. He had trouble with the napkin too. Kept putting it under his plate and then using only a corner to wipe his mouth. Next time I will ask for another napkin. With those tips it will be worth trying to go out again. Thanks.
    • CommentAuthorxox
    • CommentTimeAug 21st 2016 edited
    My wife went through a period of getting lost trying to return from the bathroom. She figured to keep the ticket so she could find her way back to the right theater. So that kept movie going longer. I started avoiding any violent movies or ones with lots of action. If too much was going on she couldn't keep up with what was happening, though I think eventually watching a movie was more about its texture than following the plot.

    As she had more problems departing reality from what she was watching avoiding violence and horror became more important. One time she was yelling at the TV watching the Secret History of Bees because a girl was drinking Pepsi and Leannah insisted that she should drink Pepsi, it is bad for your health. But she would insist on putting the most violent movies on her Netflix que. She has lost the last movie (which was a good and appropriate one) but I'm in no rush to report it as lost to Netflix. Also, she can't run the DVD player on her own. I just ordered her one of her favorite movies, Babe.

    She has problems with a menus. The last time we ate out a year ago she was not reading much of the menu and missing her favorite dish, which I pointed out. Now we only eat at the cafe at her ALF and I need to suggest what to eat. No menu, they display the food available but making a decision is difficult for her. And I need to watch what she eats. She has moved from needing her food cut for her to needing her meet ground for her (after a recent choking incident).

    One of the biggest problems I had with my Dear Helen was when she
    needed to go to the bathroom while we were out shopping or in a restaurant.

    Once I was waiting for her while she was in the Ladies room of a big Costco
    store and she didn't have her purse when she came out. So I sent her back in
    to get her purse. When she came out the second time and said her purse was
    not in there, I didn't know what to do.

    There were ladies going in and out and one nice lady seemed to sense our
    problem and asked if she could help. She quickly found the purse and I was
    so thankful.

    This was just another example of how everyone wants to be helpful.. All we
    need to do is ask.
    • CommentAuthorbhv*
    • CommentTimeAug 21st 2016
    Our favorite ladies at the Commissary (Air Force grocery store) helped him find things for several years when he was still able to shop on his own. (He used to be the primary cook.) Now they team up to help him find me if we get separated.
    Near the end of our eating out my DH would have trouble unlocking the stall in the bathrooms. He would always go in and lock it w/o any problem, but then really struggled to remember how to unlock it when finished. When he told me that, we started going to places that were small and only had 1 bathroom for everyone. When traveling home to visit his family, for instance, we only stopped at Kentucky Fried Chicken's. They only had 1 bathroom so that way I could go in with him. Or to places that have "Family restrooms". Like in airports or welcome centers when we crossed a state line. Just something for you to be aware of in case this happens to you guys. I knew all the places we could stop along the way ahead of time. By the way....those family restrooms are a lifesaver when traveling and there are not enough of them!
    • CommentAuthorRona
    • CommentTimeAug 23rd 2016
    I remember going through the same thought process aunt B. The last couple of trips we did to Mexico many times I would have to have somebody go into the washroom to look for her. People were always ready to help. One resort had two entrances one from the pool area and the other in the corridor on the other side. so a number of times she would go in one I would be waiting and she would come out the other. Finally got to the point where I could not let you go in alone, she would go in Get scared then come out without doing anything, also had to remember did she have a hat, sunglasses, lost many sunglasses. Last resort had handicapped washrooms which was great. The plane I learned something you know when you close the latch there is a little occupied sign that appears outside, well if you lift that up there is the latch to open it from the outside. The things we have to think about but now no more travelling, maybe out for lunch but that is about it.
    • CommentAuthormyrtle*
    • CommentTimeAug 23rd 2016
    Travel is not the only problem. Just taking my husband out of his facility worries me because I never know if there will be a suitable bathroom for him if one is needed. (And what about if I have to use a bathroom? I can't leave him alone outside a women's restroom.) Like Aunt B, I think the family restrooms (sometimes called "unisex" or "handicapped" or "single-stall") are a lifesaver, and there are not enough of them.
    • CommentAuthorRona
    • CommentTimeAug 23rd 2016
    Took Lisa out today there was no handicapped washroom so when a lady came out of the women's I asked if anyone else in there, there wasen't so I just took her in. Why not!
    • CommentAuthorLindylou*
    • CommentTimeAug 23rd 2016
    Why not indeed.

    If staff are available, in the future, maybe one would be willing to post themselves outside the door and warn people that a man is assisting his wife, and will be out shortly. Or wife helping husband for that matter. Management usually will do what they can to keep customers coming back.

    Never thought I had it easy, but I guess I do. After my having had to crawl under the stall twice (I'm a slow learner), my partner has not been in a booth by herself.