Up at midnight. Again an hour later. Again an hour later. Will I ever get to sleep more than an hour or two at a time?
Doesn't understand words. Have to flush the toilet for him. He's not my husband anymore! He's just this man who can't converse. Doesn't understand the simplest things. Not my partner, not even a companion!
I've spent the last three days looking at assisted living for the two of us. How to pay for it? Trying to tell myself living in a tiny space where I don't have to do the housekeeping, planning meals, shopping and cooking will make up for confined living in a tiny space. They said, "You"ll get to be a wife again." Ha! Sleeping in a tiny bed. Living in a tiny space. Surrounded by other people who are sick, or out of it, or depressed. Getting rid of all my furniture because it won't fit. I'm so tired and depressed and angry and desperate! I just want to die!
And now he's sleeping soundly. Snoring away. While I lie here trying to forgive myself for losing it. Trying to find some shred of hope. If only my brain would shut off too!
Maybe it is time for placement for him. I had to throw in the towel when I wasn't able to sleep any longer. You simply cannot keep going 24 hours a day! Keep your house and furniture. Time for him to be in a place where others can take care of him around the clock. Just my opinion. Sorry you have reached this stage....so difficult!
How about hiring a night aide, so you can just go to bed and go to sleep, and know that there is somebody in the house who will help him through the night if needed? It would be cheaper than an assisted living.
Ragsgolf,do not do anything in a hurry.Do you have an office of the aging where you live?If so call them and see if there is any help avallable ,like daycare or maybe respite for you.Maybe he qualifies for Medicaid for assisted living.Find out all your options.Praying for you, I've been thru it all(15yrs).
It's all so truly hard but you hang in there Ragsgolf as best you can. I wanted to die too. I wanted to just drop away and there's no shame in having some feelings for ourselves in this torture. Stay strong and when you can't then hang on to the rope. I'll bring it up top for you.
From what I have heard moving into an ALF as a couple often doesn't work. The well spouse still has so many of the burdens as when living at home and the staff may depend on you to care for your husband.
Ragsgolf, we have all been where you are. I had tried all the options and came to the conclusion I could not do it anymore. Sleep is a big issue especially if you are not getting yours. He is now in long term care. Hardest decision I ever made and it is still hard but I am better than I was when he was home. I simply no longer had the capacity to meet his needs. I trust you will make the right decision for you.
Hi Ragsgolf, If you’re not sure you can afford an ALF and you don’t want to live in the small space it offers, maybe that's not the right choice for you. Have you considered living separately from your husband, with him in LTC and you elsewhere? Have you looked at other kinds of places in your area? Or maybe you could look into hiring an aide, as elizabeth suggests. This is too important a decision to make without evaluating other options.
As far as some of the things people say, I also find most of those sayings annoying but I think most people mean well and are just trying to be encouraging. Most of the time I let it go but if someone keeps repeating the point, I’ll just say that I don’t agree with what you just said, but would rather not keep talking about it right now.
I am so sorry. As others said you need to take care of you. I am dealing with the same thing. I am placing DH on a memory care place by End of March. I do not want someone coming in my home at night or daytime. The burden will Still be on me. And I have somene coming in during the day. I still get no sleep or rest. The part of "you a n be his wife again", I said that to myself, I will never be his wife again. He does not know me. I hope that is not harsh. I love him, but not this man. Dos that make sense? Anyway, hang in there as others have said. I am amazed that any of us make it through this. I still haven't.
ALFs can vary a great deal. Many require first and last month paid up front and may not give your payments back if things don't work out. This is especially true with dementia residents.
Many of us live in one place and our partners live in LTC and it is not the same as we have always had but we get to sleep and we visit. I find it lonesome with out him but as time passes it gets easier to deal with. I will not allow this terrible disease to take me down with him. Each month I find it a little bit better. If you can afford to place your partner then really think about it and get as much information as you can. When my DH was first dx, I was given some very good advise. It was" EDUCATE YOURSELF" about everything to do with this disease and how it will affect your life as well as his. The folks here have really helped me. Take care of you!!