I went to see DH this morning and what I have been afraid of happened. He was talking about coming home!!!! If I thought he would forget the delusions, hallucinations and paranoia I would bring him home but I know the minute he hits the drive way he will go on about the yard and "them" telling him he has to work in the yard. I can NOT take it. He asked me where I was staying and I told him in the house. If I had known he was going to talk about coming home I would have told him something else. He also thought I had a boy and a girl, we don't have any children. He now thinks I will go there on Wednesday and he will come home with me. What do I do now? Will he have forgotten about coming home by next Wednesday, what if he hasn't? I just don't know what to do and how to tell him he can't come home. I HATE THIS STINKING DISEASE.
When he says 'home' he may not be thinking of his home with you, he may want to go home to another time in his life. Others will tell you that they ask to go home when they are at home. You do not have to answer him directly. You can say something like, 'we can talk about that next time I'm here.' No matter what you say or do, he won't stop asking to go home until the time comes when he stops, if ever. He can't help it. You have to re-direct the conversation by making up something. It's OK to lie, lying to someone with dementia is a kindness, they are unable to understand reality. Think about the things you might say and practice before you visit. And, yes, this is a *&%^$%^ disease, we all hate it.
Jean, does he know what day "Wednesday" is? If so, I wouldn't go on Wed. You had so many errands to run, or whatever. If he doesn't know when Wed. is - it isn't going to matter which day you go. Just divert him if you can and you may have to re-think fiblets!
Vickie, I never know what he will remember. He did know today was Sunday, when he was home he would ask everyday what day it was. According to him he will get his clothes together on Tuesday and be ready to leave on Wednesday. Fiblets/lies I am not very good at!
I know, me neither. Did you originally tell him he was going to get his meds in order; or that you had some health situation? Whatever it was, it isn't over! Things have to "get done" first.
Can you skip this Wednesday? If he has this set he might be all worked up to go when you get there and that is one scene you would face. If you went next wednesday and he's still on this then you know you need some way to get him off it and maybe at that point one of the staff can guide you. Can they play good cop bad cop? They say there are still things to "get done" first which is why he has to stay - not you.
The months will change things so this won't go on and on; but, you need some help to create reasons because as you said you're not very good at fiblets (too sincere no doubt) and yet that's the position you're in.
Can you get someone to run some interference for you from the staff?
This is always difficult, and I think that you have to find the way that feels most comfortable to you. I tried different ways, but what worked best for me personally was to say," I can't take care of you on my own. I wish I could, but I can't."
I usually just try to pretend I live there too, and am at other times off doing "work," or something with the kids, etc. Why do we live there? I need help, is why.
Jean21--please get yourself a copy of the book "Learning to Speak Alzheimer's". If you haven't read it, the main thrust is to enter their world and tell them whatever they will be satisfied with. It's my favorite AD book and needs to be reviewed again from time to time. You are facing a situation that every dementia caregiver faces at one time or another; sadly, it comes with the territory. Get proficient at the fiblets and it will lower your stress level. Remember, you are in charge and you just need to use your noodle and he will calm down about coming home.
I think I would tell him you are getting the house painted or the roof replaced and no one can live in the house at this time. You are having to stay with some friends. Sometimes, the thing that is so off the wall works better then just minor little fiblets. Lets face it, my dh lies all the time to everyone. When the kids or friends are here and if he can respond that day it is one "lie" after another. He says anything that comes in his head. He just told someone that was here he does exercises everyday. Duh...only if you call walking around the house exercising.
Jean, I am sorry your worst fear came true. I agree with the others, fiblets are the kindest thing we can do for our spouses. I wasn't good at it either, it ate me up inside at first. But as Fayebay* says, eventually you do get use to it... *sigh*
As you know the only way I could get Lynn to even stay one night was to tell him I needed to be there, and would he please stay there with me. He HATED the idea of being there, but for me, he would stay *tears* I wont lie, Lynn did ask when we were going home several times a day for those first few months. Sometimes he cried, sometimes he pleaded, and every time my heart broke a little more. Consistency is important I think, even when there is no recall. His recall was zero by the time he was placed, but when I told him the same thing time and time again, one day he just accepted it and stopped asking when we were going home.
I think it is important you not tell him you are at home, that can only make him want to go home with you even more. Lynn believed I lived there with him and for the first few months I basically did! Not that that is what is right for everyone, but it was right for Lynn and It was what HE needed. It brought him comfort to know WE were there, not just him. Perhaps that is something you can try. I notice several others have said they did the same thing with success.
Fayebay* your post broke my heart. It has been three years for us and I am so thankful I never had to witness someone climbing out of their chair to crawl to their loved one!! I am not sure I could have taken that *tears* I too told Lynn I had to sleep on a different floor because girls and boys couldn't sleep together. That worked for him because at home he told me I couldn't sleep in our room for the same reason. "My mother says I am not allowed to have girls stay in my room" FLOORED ME!! And so it was that the living room became "my bedroom" and, still is.
i would also avoid the whole mention of home or anything that could trigger that thought. fiblets on anything that you think will make sense to him would be my choice. hopefully you can buy some time til hes more adjusted. good luck jean.
I have given away about ten copies of "Learning To Speak Alzheimer's" to newbies in the Caregiving phase. Several hints that worked for me was to NEVER EVER ask questions that could be answered with a YES or NO. Example: " Do you want me to stay?" Answer NO. Better to say, "Do you want me to stay through dinner or would you rather go by yourself?". There are options, but not "YES OR NO". I found my DH would answer NO 99% of the time when given the chance. Even when he WANTED to say YES. Example: "Would you like some ice cream?" answer NO!!! Rather ask: "Would you prefer Chocolate or Vanilla"..
We all have to learn these tricks, and "Learning To Speak Alzheimer's" is a fantastic tool!
That is really interesting. With my dh if I want to get an answer from him I can never give him a choice. He just looks at me with a blank look on his face. He does not seem to understand picking one thing over another. It took me months to figure out what his problem was and once I realized he couldn't make choices. I use to say do you want to eat now or later....just a stare. Now I just ask if he wants to eat.
It use to upset me when we were going to go out to eat and I would give him two choices of where to go...and he just couldn't pick one over the other. So, I just pick where I want to go.
This ALZ condition never seems the same for all of us.
Good point Charlotte. I find I can list two things, but not three things. Three draws the blank stare, because it's too much to process, but he can usually pick between two.
Vicki, ditto to what you wrote. I still try to give him a choice every once in a while but then he says, “I don't know. Which do you think is better?” So I just usually choose for him. Sometmes when we go out to eat I'll say, “How about a cheeseburger,” & he always says, “That sounds good!”
Well I went to see DH this morning and he is sitting in the hallway with his jacket on, no he hadn't forgotten about coming home today! When I went in his room he had his shaving gear and snacks packed ready to go. I told him I was going to the other building to check on his pills. Spoke to the Exec. Director and told her DH was ready to leave. She came back with me and asked DH to stay a while longer so he could see the doctor and he agreed and said I could go home! It was suggested that I don't visit for a while and then DH won't think he is coming home when he sees me. I am going to take the suggestion to heart because I am a nervous wreck thinking DH will be coming home and there are things I want to get done in the house and I am afraid to start incase he does come home. He won't like anything going on while he is here. So for now I am going to try and get SOME life back for myself.
Jean21, My aunt had to do this with my uncle...and it was truly intended to be temporary to repair the back yard after some heavy rains in the LA area that made the slope in the back yard dangerous..my uncle would want to help or do it himself as he had done in his healthy years. In the end, my uncle never came home...my aunt, it was discovered, had colon cancer and had to have procedures done...When she was going through all of this, I took care of her and thankfully my uncle was in a wonderful location. Because my aunt could no longer go on many of the visits to get his clothes to launder ( she wanted to do that for him..so she could still be taking care of him somehow) the wondering when I am going home again became less of an issue and finally faded to the place where when we both went to see him he always had his new garden to show us and would walk all around and point out things..though he lost his use for finding words...talk was not possible but he could get what we were asking and would sort of mime answers. Funny thing how creative people with ALZ can be....especaially with arts and crafts.
Jean, I am glad the director was able to talk with your DH and convince him to stay. Each of our loved ones needs are so different. As my Mom once told me, there just is no right or wrong, trust your gut instinct. Whatever you do will be done in love, and that is never wrong. I hope your DH settles in soon and that you are both able to find some peace ((hugs))
Mimi, though they do laundry for free, I still like to do Lynn's. When the other spouses ask me why, I always say it is what I have always done and I just want to keep doing it. I guess really I do it for the same reason your Aunt did ♥
I agree with the arts and crafts too, it blows my mind how talented some of the residents are! One gentleman plays the piano so lovely it could bring tears to your eyes. He comes alive when he is seated in front of the piano. Music therapy is amazing to witness...it's been three years for us yet I am still in awe every time I witness the residents "come alive"
I am having a really hard time getting to sleep at night. Last night I went to bed at eleven and was still awake after one. My mind keeps going to my DH and wondering if he is okay, getting enought to eat, warm enough and on and on. I did take one Excedrin PM a couple of nights but I still woke up early and I don't want to get used to using pills. Maybe tonight I will get a decent nights sleep.
Jean, melantonin is a natural sleep aid, not expensive and it works. Sometimes I take one and fall right asleep, then wake up at 3 am . I take another one and it usually puts me back to sleep again, no hangover as it is just a vitamin. I hope that might help you. Also not to nag...but...if you try to go for a good walk each day or get some good exercise, that helps all around.
Perhaps you are doing that already. You are such a loving wife he is so lucky.
Jean, it's bound to make a difference with your sleeping now that he isn't there. I remember when my DH traveled so much, I didn't sleep well at all. I think it's pretty normal - however, leaves you tired, I know. Coco's suggestion might just work for you. I hope you can find something to relax you.
This may sound crazy but when dh traveled which he did a lot in his job I could go to sleep easier if I hugged his pillow. I guess just having my arms around something put me at ease. Now though I take tylenol p.m. every night. I asked pcp about it and he said would be o.k. otherwise I'm up every hour on the hour worrying about "what ifs".
DH was military for 25 years and he would go TDY at times and I never had a problem sleeping. Of course I was a lot younger then too!
Coco, the first thing I tried was Melatonin and it didn't do anything. Maybe I'll try it again.
I didn't have anything last night and went to bed at 10.00 and fell asleep pretty quick. Woke up at 4.00, so I got about 6 hours which is better than the 4 hours I have been getting. I did go back to sleep after flopping around in the bed for a while and finally got up about 7.00. Maybe I'll get this figured out if I stay with it long enough. lol
flo39--your post reminded me that when my husband traveled, I would sleep on "his side" of the bed. Made me feel closer to him. After I moved him to the ALF, I bought a new, adjustable bed and the mattress cannot be turned. So now, I switch sides each night. Otherwise, I guess I'd still be on "his side".
i sleep in the middle of the king bed now. its not healthy to have a 'side' anymore i think. darn one more thing we are robbed of. even the ablility to have a preference to sleep! i found it stressful in the beginning to find nobody on 'his' side anymore. it darn near did me in just moving him to a hospital bed across from the bed. so many little things another person just cant understand how we suffer with this disease.
I have my dachsund mix and my pointer on the king sized bed with me. It really is comforting. The other pointer and the border collie mix prefer to sleep in their crates beside the bed, with the doors open. I don't know what I'd do w/o my dogs for comfort.
I agree...dogs are such a comfort. We had a dog once that loved his crate. He learned to open the door by himself and get in and shut the door. It was like he was telling me...."I've had enough of you, now leave me alone."
Our dog we have now sleeps at the end of our bed...but, the last week she has been wanting me to get up with her at 5:30. I have always thought if something happened to my dh and I had to sleep alone I would get one of those long hug pillows or whatever they are called.