How do you do it?
I know I have written posts before. I'm sorry to keep writing, but I don't know really where else to turn. I'm hoping someone has advice. All these nights where we go through the "we need to leave" and the need for movers have completely worn me out. I have explained over and over. He is convinced that he had no say in where we chose to live over a year ago (when he still had more wits about him). I can't tell him there is another house because he wants me to go there. Many nights we are apparently "in a hotel". He accuses me of lying - tonight it was that I told him we had a 3 year old and a 5 year old upstairs - by the way, we live in a single story house and our kids are all in their 40's. Every night is harder than the night before. I know it's my fault to get upset, but sometimes it's just too much and I lose it. Then I feel guilty for arguing, but really, what do you do??? Now tonight he tells me that I have a social life and he doesn't. I have given up all of my social life except for once in a great while I have lunch with my daughter who lives nearby. I would LOVE for him to have a social life. I would love it if he had some friends nearby or some interest! He is just so unhappy all of the time and he sleeps for about 16 hours a day lately. Yes, I have talked to his neurologist and he is on Seroquel. I really need some help I think. Has anyone found a therapist to help them through this? I don't know how to handle this anymore and I know it won't get better. DH is in late stage 5, it seems. What do you do to keep your sanity? I know our GP will be telling me, once again, that I need to start looking for MC. I can't imagine doing that yet, but I see it getting closer. I'm so sad.
Comments
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I’m so sorry you are going through this. I faced the same thing with my DH and it is really hard to deal with and handle. I felt it was more of stage 6 and the constant wanting to go home or to his house was very trying. I would have to usually take him for a drive and sometime it worked and sometimes not so much. Have you tried saying okay and taking a drive. I would ask him to tell me where we needed to turn etc. He would bring us back to our house but it helped as he felt he had directed me to where he wanted to go. The times it didn’t help and he still asked I would just say it’s late, can we stay here tonight and I will take you in the morning or I’m sorry but we are staying here because we are doing this or that with our daughter tomorrow. You get it, just whatever might work. Sorry but this is a tough time. I feel it was the hardest stage/time and just had to take it a day at a time. I haven’t used a therapist but have family and friends to talk to and this site has helped as well. I also attend an in person caregiver group. Are you able to have someone give you a break at least each week for an afternoon. I know this helped me to have a little time for me and to just relax which helped me get through it. My DH is now early stage 7 with different challenges.
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Thank you for this. I have actually taken him out and asked him where to go. Like for you, sometimes it helps and sometimes it doesn't. Of course, we always end up back here "for the night". I'm happy to hear that you attend a caregiver group. I'm going to look for one nearby. I just am hoping a therapist may give me ideas on how to handle this. I'm sorry you are where you are too, but thanks again
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I am sorry I don't have any good advise but You don't need be sorry for asking or for just saying how you feel or venting. Any posts and others responses help a lot of us.
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Please don’t feel sorry for continually writing my DH is not quite at that stage yet but I read with compassion gaining knowledge along the way, not looking forward to any of this. It is so sad and before I found this site I spent nearly all day in tears now I’m beginning to understand that I am not alone and what to expect next. My DH has said he wants to get out of here and go home, the thing is we only moved here 2 years ago so I thought he was being quite sane with these comments, so I just said so would I, which I meant, and we would talk about our home of 30 years, and then I decided this wasn’t healthy for me so I changed to positive talk of our pretty house that we now own. This made me feel good and seemed to stop the want to go home conversation. Who knows it’s all sad and painful and makes no sense.
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There’s not really anything that you can do but medicate him with anti anxiety and depression medication in addition to the Seroquel. He can’t be ‘fixed’ because his brain is unfixable. He can’t change. You can’t handle him as he is without serious ramifications to your own mental health. The only thing you can do that will work for you is to remove yourself from the equation as much as possible. This is why that doctor is suggesting memory care to you.
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> @mathreader said:
> I know I have written posts before. I'm sorry to keep writing, but I don't know really where else to turn. I'm hoping someone has advice. All these nights where we go through the "we need to leave" and the need for movers have completely worn me out. I have explained over and over. He is convinced that he had no say in where we chose to live over a year ago (when he still had more wits about him). I can't tell him there is another house because he wants me to go there. Many nights we are apparently "in a hotel". He accuses me of lying - tonight it was that I told him we had a 3 year old and a 5 year old upstairs - by the way, we live in a single story house and our kids are all in their 40's. Every night is harder than the night before. I know it's my fault to get upset, but sometimes it's just too much and I lose it. Then I feel guilty for arguing, but really, what do you do??? Now tonight he tells me that I have a social life and he doesn't. I have given up all of my social life except for once in a great while I have lunch with my daughter who lives nearby. I would LOVE for him to have a social life. I would love it if he had some friends nearby or some interest! He is just so unhappy all of the time and he sleeps for about 16 hours a day lately. Yes, I have talked to his neurologist and he is on Seroquel. I really need some help I think. Has anyone found a therapist to help them through this? I don't know how to handle this anymore and I know it won't get better. DH is in late stage 5, it seems. What do you do to keep your sanity? I know our GP will be telling me, once again, that I need to start looking for MC. I can't imagine doing that yet, but I see it getting closer. I'm so sad.1 -
I am sad for you, and I know your frustration. In our case, this stage has proven to be temporary, as we are progressed to stage 7: non-verbal, non ambulatory, sleeping 18 hours/24. My husband developed seizures, and with that came seizure meds, which are sedating and the agitation is no longer. We are in a state of calm, peaceful semi-awareness. There are trade-offs. A fully incontinent spouse is not the same as raising 4 babies. Psychologically the hurdles can seem insurmountable and I did seek the assistance of a therapist who could guide me with telehealth, which is manageable as I try to juggle work and managing in home care as the night/weekend caregiver when I am home. It is a lot. It is exhausting. Get help in your home. Get help for yourself. Nothing lasts forever in this disease progression. It gets easier in some ways and harder than others.4
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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