I haven't posted in awhile. But I need some advice. The past several times I've visited DH in the nursing home, he's been sobbing when he seems to recognize me. It's not just when he first sees me, but every so often during the visit. It's heartbreaking. I hold him and hold his hand, but he seems so distressed. He can't tell me why he's crying, but sometimes I can make out a few words. I could swear he said "I don't know what's going on" and "I don't know what to do."
I try to comfort him, but I have to wonder whether my visits are more upsetting to him than comforting at this point. The staff say that they don't see him crying when I'm not there, so I don't think it's just a symptom of AD.
Have any of you experienced this with your LO's in NH? Do you think I should stop visiting for awhile? I feel like I'm being selfish by dropping in once or twice a week (the most I can usually manage with working full time and the kids at home), and sitting with him while he sobs. Maybe I need to back away in order to give him some peace?
Any advice on this is appreciated. I'm really torn.
Kelly, I am going round and round on this one for different reasons. Does he need you? Yes, he probably does. What is your mood and attitude when you go in? They truly are emotional barometers. Distraction is the key here for you. You need to change what you do with him when you are there. Is he mobile in some way? Walk with him around the facility? Can you safely take him outside for walks? I also do all kinds of "crazy" things with my husband. I sing to him - he like Frank Sinatra and show tunes. I also "dance" with him. He is in a chair now but I move his hands and arms in time with the music and he seems to enjoy that. Some days I play the piano for him, some days I read to him, some days I just tell him stories about our animals and their antics.
On another note, one of the other residents where my husband is will cry and throw "tantrums" the more you talk with her and pay attention to her. Learn what the aids and nurses do with your husband that is different from what you do. Due to the AD, your offering him comfort might make it worse. What happens if you don't offer him comfort and choose to do something with him? Do they have activities there that you can participate in with him? Where my husband is there is a terrific woman that plays the guitar and sings for the residents. I am often there and share this time with my DH.
That's him. For you, maybe a week or two break is just what you need so you can do better for him. It takes a lot out of a person to do all you are doing - I work full time also but don't have the kids. I try and see him 5-6 days a week and am finding it exhausting. Sometimes I have to allow myself an extra day so I can keep going. I don't get to spend a long time with him so try to be a consistent visitor.
If it truly is an AD thing, this too will pass - its just getting through it and surving it in one piece. You are not being selfish when you are placing what is best for him at the top of your list. The fact that you are even asking questions like this show that you care very much about what is right for him.
Kelly, I too work full time but do not have young children at home. I go to the nursing home 5 days a week. I started out going 7 days, cut it back by 1 and now have cut out 2 days. My husband can not interact much but music soothes him so I play CDs and like therrja I sometimes "dance" with him the same way she does. The aides tell me that he acts pretty much the same way all the time whether I am there or not. Your situation seems to be a little different. Maybe you should try staying away a few days and see what happens when you return. The aides and nurses are a good source of input as therrja already said. You have to do what is best for BOTH of you. His needs are important but so are yours. Good luck. Hope you come up with something that works.
Kelly I have been worrying about you. It may be like you leave your kids with a sitter and they cry until they can't see you any more. I hope so. How are your kids doing?
Kelly, I'm tossing you the rope, hang on girlfriend. I try to visit during meals, so we have something to do together, I take him outside in his wheelchair for some fresh air, even at 24 degrees. Try changing your routine a bit and see what happens. My oldest son was born with Fetal Alcohol Syndrome (he's adopted). He had to go into long term residential care when he was 13 due to dangerous behavior. Our visits totally disrupted his strict routine at the "School". We finally started staying away and he did much much better. I kept in touch with staff by phone, it almost killed me, but it was what was best for him. Not easy......................................I feel your pain.
Kelly, my dh used to cry all the time when I visited as soon as he started I would tell him , if you cry I am leaving, he would stop right away, I just needed to get sturn with him like you would a child , I also brought him a treat each time I saw him, candy bar was his favorite and chocolate chip cookies, took his mind of off crying, I also visited only two times a week, good luck to you honey , it is so hard to watch them cry.Gail
My wife went through a period about two years ago where she would cry and say that she doesn't know what to do. I kind of think of this as the Socrates period when they know that they do not know. Fortunately or unfortunately, this will pass. On the other hand, dementia sufferers are emotionally labile and crying may not represent sadness as much as any strong emotion.
I would say, don't stop visiting. Do provide structure during the visit and try to comfort him if he does cry.
Thanks for the support and kind words. It is such a huge help.
Maybe moving around with him would help. Unfortunately, he is wheelchair bound, his arms and legs are very stiff (possible Lewy Body Dementia). He is so frail and his condition so advanced that it amazes me that he seems to still know us. I thought that by the time he got this bad he would no longer recognize me. Sometimes I think that would be better for him, although harder for me. I think he is in there, maybe more aware than he seems at times. Trapped in his own body in a way. It's so awful for us to see him that way. But I can't stay away.
In the summer, I would wheel him outside and sit with him. Unfortunately, we're in Mass., and the weather is frigid right now. I couldn't take him out. But maybe I can wheel him out to the lounge.
I wish there were something I could say that would comfort him, but I just don't know what. What I wouldn't give for one more clear conversation with him.
kelly, yesterday I took DH out into the sunshine for a few minutes @24 degrees. Today it was a toasty 38 degrees and I pushed him around the entire complex in thee sunshine. It was good for both of us. Just bundle up and get some fresh air. Oh, by the way, we are in Maine! Where in Mass are you. I grew up in Beverly and lived for years in Bradford and Haverhill.
My DH has been in a NH for five months now and seems to be dropping so quickly. He, also mentions sometimes that he does not know what to do (his speech is so bad I have to fill in the blanks), I tell him to just to rest, take his meds, and do as the aides tell him, so he can get better. This may be a false hope but it does seem to comfort him. I remind him that I am taking care of everything and not to worry...just to take care of himself. I think makes him feel like there is hope. He very rarely talks or responds when you talk to him.
I am at the NH at least twice a day (I live very close) and one of the other residents crys from time to time, for no reason. He cannot be consoled until he crys it out. This takes place with or without his family present. I think it is part of the AD journey.