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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.

Psue - thinking of you this morning, It is very sad. His brain is broken. I think you are handling it very well. I do hope you can get some help in soon to give you a break. You need some "normal " in your life - as much as you can arrange. Counting down the weeks till the appointments. ((((((hugs))))) and prayers.
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Anxietynacy Nov 8, 2024
Same here, peasuep. Don't try and be super women, my heart breaks for you, I'm so glad you found AC, so we can give you are support, and your not alone.
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(((((((hugs))))) psue. I am sure your sil is right - a facility sooner than later is better. Have you had time to check out what is available in your area? There is no benefit to you going downhill too. I have no doubt you are doing a great job caring for your hub. You need to do as good a job caring for you too.

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)))).
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Peasuep Nov 7, 2024
Thanks for the hugs, Golden. I can feel them from here.
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.
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Update: DH’s day with his sister went pretty well. I need to reassess if telling him before bed that he has something to do the next day is still a bad idea - I stopped a couple months ago because it always made for an anxious night but maybe we’re beyond that now.

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.
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Anxietynacy Nov 7, 2024
Peasuep, you sound like your being very realistic in knowing sooner or later hubby is going to have to go into a facility. I'm so relieved to hear this.

Your doing a great job, in this horrible heartbreaking situation.

We are all here for you
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Get him out of the house and into a facility. That is the only option.
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So sorry .
At a minimum , help needs to be hired to come into the home .
You need to take care of yourself as well .
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I’m also not sure why Adult Daycare is now off the table. But in any case, please get a part time helper in home. It may be the only way for you to keep going and stay physically and emotionally intact. This is too much to continue on your own. My dad’s helper was a godsend. I’m sorry you’re both experiencing this and wish you pockets of rest and peace
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mstrbill Nov 6, 2024
He is probably too ill for day care. Day care will not accept people that need a high level of care.
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So sorry you are going thru this. My husband does the "I want to go home" when tired. He is bedbound but does not recognize his home at those times. Doesn't recall saying it the next morning when better rested. If your husband acts perfectly normal with his sister, and she doubts what you describe to her, take a video on your phone when your husband is having cognitive troubles. You can send it to her. But since she went thru this with her husband, I think she will believe you and can even provide suggestions on how to manage your husband. Good luck and God bless.
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Peasuep Nov 5, 2024
Thanks Jan. SIL will not doubt me even is DH has a great day. Her nightmare was too real and almost put her in the grave next to her dear husband.
I can’t tell you how much I admire you but I don’t think I have your strength.
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Why do you say Day Care is on longer an option?
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.
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Peasuep Nov 5, 2024
Grandma, no day care because I can’t get him out of bed most days early enough to get showered and in the car. Yesterday was rare but really, really nice. Today it is almost 5pm and he doesn’t know what water is.
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P., I am so sorry. When my 84 year old brother got diagnosed with probable early Lewy's dementia after a car accident they had really only his symptoms to go on. And they were pretty certain it was what he had and we both researched and knew what was coming. He so hoped he would die before it could "get him" and rob him of all he was. He made me his POA and his Trustee, I paid all bills and handled all accounts with a small "spending account" for him. He didn't want to leave So Cal and come home to No. Cal. and he loved the ALF he went to from his last little home. It was at the beginning of covid, about a year and one half later that he got sepsis that was MRSA and essentially untreatable. He returned from Hospital to his little two rooms in ALF with Hospice and he was dead in a week. Honestly, he and I were both glad of it. How awful to be faced with the decisions you are coming to. And only you can make them. But they ARE coming. And I know you know that. I would speak with him if he can retain it at all. My brother and I talked and talked and talked. It is both easier and harder to know what is coming, but he has to know there is only so long you an both maintain this way.
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.
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Peasuep Nov 5, 2024
Alva, I don’t know if we’re looking at LB - no diagnosis until the middle of December. So far he hasn’t seen anything that isn’t there but he did think my DD was another young woman we know with curly hair and glasses even after spending an afternoon with her. Had my GD been with her I’m sure he would not have made that mistake.
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.
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Anyone that has dealt with a loved one with dementia can certainly relate to the rollercoaster that you're on and will remain on until your husband passes.
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.
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Peasuep Nov 5, 2024
Thank you Funky. I’m not sure I deserve God’s blessing but I will take it, gratefully.
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