Day before yesterday was a nightmare. DH slept until 4pm again, woke in a cold puddle after stripping off in the middle of the night and going back to bed, unprotected. Shower for him, 2 loads of laundry for me. Then dinner (which he enjoyed very much after having revived in the shower.) Pretty decent evening and bed at 10.
Yesterday he was up and dressed on his own at 8am and had an uneventful day. Made his own toast, walked up and got the newspaper. Watched me clean house and cook. Bed at 10 with no nap.
Today, repeat of day before yesterday only up at 1pm after sitting on the end of his soaked bed for over an hour looking through his wallet and saying that he wanted to go home (that’s a first). Miserable, frantic and unable to express himself. Finally into the shower (he can shower by himself as long as I get him headed in the right direction.) More laundry anc clean-up for me and I need to find a way to get his follow-up urine sample to the lab before it closes and pick up some prescriptions. I’ll know if that’s possible after his shower.
If anyone had seen him yesterday they would have thought him to be a normal, pleasant old man.
Day care is no longer an option, it’s either home care in his own studio downstairs if I can handle nights and weekends, or a facility. SIL who’s lost her DH to Parkinson’s with LBD is coming to take him to lunch tomorrow if I can get him up and ready in time. I would like her perspective but he’ll probably be just delightful while she’s around!
This is a little bit rant and a little bit cry for advice.
Sadly it comes with the horrible disease of dementia.
If you can no longer get your husband out to daycare then it'll be important for you to bring in folks paid or not, to relieve you so that you can get out and do some things that you enjoy, so you can maintain some sort of sanity in this very insane world of dementia.
I can tell you from personal experience that you are stronger than you know, and that this too shall pass.
So hang in there, get some in-home help, and enjoy the good days that you have with your husband while they last.
And know that if he was in his right mind he would NEVER want to put you through any of this.
God bless you as you take this very difficult journey with your husband.
SIL and I did not get much chance to talk afterward but her opinion is that a facility sooner rather than later is a good idea. She had been advised to do that with her DH but couldn’t bring herself to do it. When he could no longer let her out of his sight without panic and terror, she was trapped by her own sense of duty and love for him. Obviously she survived, but barely. Her PTSD still sneaks up on her several years after he passed.
I’m heading in to wake DH now, I’m afraid what I will find.
Thank you for your answers and for letting me share. It really helps.
Your doing a great job, in this horrible heartbreaking situation.
We are all here for you
It sounds like he would be a good candidate for an Adult Day Program.
It would get him on a schedule, it would give you a break and him as well.
My heart goes out to you. Lewy's is one of those that isn't steps inexorably down but is rather up and down and all the heck over the place. It's so disconcerting.
Memory, especially extremely short-term, is the issue so I’m anticipating a dx of Alz. but I could be wrong.
Your dear brother sounds like he was an exceptional human being. You helped bring that out in him - that is very special.
In the meanwhile can you hire some help to take the pressure off you for the short term? I know you have some appointments coming up that, hopefully, will help clarify what's going on.
More ((((hugs)))).
The next few months are going to be really hard. Tonight he accused me of stealing and hiding a very important binder clip….yes, a BINDER CLIP, and then lying about it. (He was sitting on it, but was still mad at me when he figured it out). That’s how I know he is going to hate me no matter what happens. It’s all so sad.
I can’t tell you how much I admire you but I don’t think I have your strength.
At a minimum , help needs to be hired to come into the home .
You need to take care of yourself as well .