I don't know if I've made the right decision placing my husband. He still knows who I am but also thinks a lady in the facility is me. That's ok we have a different life now. His pain isnot being with me. Everyone tells me I must go on with my life and keep him there. It is brutal thinking all he wants is to be with me and I've abandoned him. He has lewy body disease that is a different dementia. It's worse because they cannot take the meds a ad can. They can be extremely lucid then gone again, it is beyond brutal. I want to bring him home but it's against everyone's opinion. I know he will have to go back. I just can't resolve myself to the fact that I am leaving him there. It's a knife in my heart every time I leave him
I know how you feel. I can't tell you if you made the right decision or not but I know I did. He has bvFronto, vascular and Ad. My hubby knows me and wants so much to come home and I would give anything to bring him home. He know he can't come home. It's not possible. My health was being jeopardized and his behaviour was more then I can manage. I have come to realize that I have a different life now and no matter how my heart breaks I can't bring him home. I have to live my life as it is and visit. it's really hard. Dementia is hard. Our life now is hard. Hubby spends most of his time with the women at the LTC are that is alright. This is not the same relationship. He is not the man I married and lived with for so many years. I love him and will care for him always. It's been nearly ten months and I am just starting to move forward, but it is still hard not to be the couple we were. Do't rush things. Take care of you.!
LBD is very difficult to deal with. If you weren't able to care for him at home before I don't see why you can do it now. Sometimes we only have bad choices.
In dealing with my wife getting kicked out of an ALF (people with FTD and LBD don't fit in so well at ALFs) I have had many people including her doctors fearing that I would take her home until she was accepted elsewhere. I don't think I would survive a day if she moved home.
I sympathize since I just placed my husband a month ago. A few times every day, I become overwhelmed by the enormity of what I have done and am tempted to go get him and take him back home. I panic and start to cry when I hear that he is anxious and asking for me, but I steel myself not to give into these feelings. Whether I made the right decision or not, bringing him home and then taking him back would be terribly cruel to both of us.
I am doing everything I can to make him feel I have not abandoned him and that he is not in prison. I visit him every day, take him out of the unit regularly, and take him for rides often. I try to give him a sense of continuity and familiarity. When I visit, I often give him some of the same personal care that I gave him at home -- trimming his moustache and fingernails, etc. Even though the facility handles these tasks, I want him to feel that I am still taking care of him. I even re-hired our home health aide (who he really likes) to visit him twice a week for the first few weeks, to give him another familiar person to be with. (I have now cut her down to one visit a week.) I am hoping that after a month or two, I can back off a little, but in the meantime, I am investing whatever I can to make his placement a success. If this does not work, I have no other options. This is the hardest thing I have ever done, but I am determined to outsmart the feelings of fear and despair that are hovering just above us and that threaten to overcome us both.
Try to hang in there. So many of us are with you in this. As Jazzy says, we can't bring them home just because our hearts are breaking.
Ritag, I understand your heartbreak. My dh had Lewy body dementia also and he was admitted to an ALF after breaking his hip last October. I should have placed him a year earlier but he begged me to leave him at home for one more winter. It was a traumatic experience for me but surprisingly he adjusted much better than I could have imagined. That is not to say he didn't ask when he was going home and I cried every day when I left because I couldn't bear him not being home with me. HOWEVER, he was in the best possible, safe place for him. And I knew I could not do it one more night or day at home. They do go in and out of lucid moments but that diminishes over time and he did adjust after 6 weeks or so. Please hang in there. It will get easier. Unfortunately, my dh passed away in April but I was grateful I was spared the physical hardship of caring for him and really was able to just make him as happy as I could those last six months. Talk to him, tell him how much you love him, hold his hand and do all of the tender things you can while he is there. Hugs to you.
Thank you all for your support. My husband is starting to transfer all my identity to this woman he thinks is me. I don't know if I should just let him go into his reality. Sad part is I confuse him when I visit which is almost every day. His reality is he's married to,this other woman because he is so frightened that I am not there. I don't know wether to just leave him be and watch as I slowly disappear from his life. This is so cruel, I feel tortured every second of the day
Hi Ritag, I so get what you are saying. My husband does not have Lewy body but he still knows me and all he wants is to be with me. It is heartbreaking and only the spouse can understand this. It is almost a year for me and I can say it does get better. I do not visit every day but do go consistently twice a week and take him out if the weather is nice. I think the consistency he understands and helps him to know I have not abandoned him. When I first placed him I went almost every day but I soon learned it was not good for me or him--mostly me. It just made the transition more difficult. They do adjust and no the care is probably not as good as you can give but I know he is well cared for. The nurse calls if anything happens and he has a very structured routine which is what he needs and what he did not have here at home. I just tell him I cannot do it anymore but one of the most difficult things is he does not comprehend why he is too much for me. In his mind he can walk and talk and feed himself so what is the problem. No amount of explaining will change his thinking.
I was not forced to make that decision, placement. I would say, however, that it is always a gut wrenching decision. I was on the threshold of having to make that decision. That said, you do have to take care of yourself too..if you are too tired and run down from the years of caregiving, how can you even make good decisions for yourself and others? We all need space to breathe and as the journey gets harder and harder, we get weaker and more tired and when the end comes, then we find out how tired we really are even if we do have help. So try to be at peace making these decisions and as those who have faced placement have said, after the initial phases, and they do get rest, they can be in the position of being present in the moment with their LO, totally devoted and let others do the heavy lifting.
Hi Rpg131, I guess this is not unheard of, since in another thread (“How long to wait”), two members – Bettyhere* and AliM – said that each of their husbands had believed that another resident was his wife. You’re probably right that this is his way of coping with living in the NH. As far as letting him live in this new reality, why would you deny him this comfort?
Before making any changes, you might want to think about the alternatives. If you removed him from the facility and took him home, you’d be right back where you started. If you succeeded in convincing him that this other resident was not you, but was stranger, he might become very upset. On the other hand, I don’t see how you can stop visiting him completely – you’re still supervising his care and you still need to talk to him to assess his condition. But if it upsets you and confuses him when you visit every day, how about cutting back to every other day?
It sound like he is fine. He does not think you’ve abandoned him - he thinks you are right there with him. But you are the one who is suffering and I can completely understand why. What a hard thing to deal with. Hang in there.
A year ago a new resident imagined my husband,Bob was her husband. She started calling him Frank and taking him to her room. He seemed pretty confused when I came to visit. Her husband, Frank came to live at the facility and they moved to another floor. Things change all the time. Let some time pass, visit your husband and things will work out.