Just need my friends who understand

Jazzma

My DH spent two years in MC, and I was able to bring him home 3 months ago with relatively good success. He's on hospice now, which has also helped. I mentioned in an earlier post that he's suddenly taken a nosedive as far as behaviors and cognition. He shuffles around the house mumbling disconnected words. He's resistant to using the bathroom and gets up many times a night looking for a place to pee but then choosing not too. Finally wets through his underwear. This morning I was making breakfast that he took a few bites of — and he went to the sink and started eating the eggshells. I'm so tired and so sad. I'll call hospice today. I do not want to put him back in memory care. So….I just needed to tell this to people who understand. Thanks for listening.

Russinator

((HUGS))

jehjeh

https://alzconnected.org/discussion/73133/just-need-my-friends-who-understand

I’m so sorry you and your DH are in this position. I think the idea of contacting hospice is a good one. Please don’t wait. They have seen it all and, hopefully, can offer you something that will help. I’m holding you and everyone else who is dealing with this horrible disease in my prayers.

Scooterr

I feel your pain my DW does about the same thing (stage 7). If I'm not on guard continuously she will put just about anything in her mouth from my cell phone to her old collection of rocks. The bathroom I take her every 2 hrs. she will sit there doing nothing and as soon as I get her pullups on the flood happens. She has a word salad mix , but that's on the good days, other than that not a word. She is on hospice which has helped a lot, but at this point there's only so much they can do. For the most part it's a waiting game , a long drawn out slow and miserable death. That's how I see it at this point. My DW has been fighting this battle since 2019 at the age of 55 when she was first diagnosed. It seems in the last month the disease has picked some, but I know she's still in there fighting the best she can. After 43yrs. marriage to a lady I love so very much I have become tired physically, emotionally and mentally. If I'm being honest, there's days I pray it was done and she was at peace. I know that maybe horrible to some, but I think if anyone can understand, it would be the ones on this forum. On the other hand when she's gone the pain of her being gone after so many yrs of marriage it would kill me. Stay strong Jazzma and try and have a good day,

Kat63

So sorry you are seeing such decline. Once in a while my DH will try to take a bite of his napkin. He rarely goes to the bathroom during the day, but is up every night 2 or 3 times and uses the toilet at that time. Had an issue a couple of weeks ago where he urinated in the wrong places and had to change him during the night, but is back to using toilet right now. Today we went to our grandson’s baseball game and my DH slid out of his seat on his walker three times. This is the first time I have seen him do this. He too is under hospice care which helps but always sad to see these new behaviors. I certainly sympathize with you. ((Hugs))

Biggles

My heart goes out to you Jazzma. I weep and cry for you and what is coming my way. My most precious DH of 54 years of fun, adventure, trials and tribulations and now of adversity. I am hoping and wishing that his life is shorter not longer. I think I have the courage now, when I next see the doctor, to sign the ‘do not revive’ papers. These are awful thoughts that play on your mind and thoughts I find I cannot share with anyone other than this forum. It’s a dreadful disease with nowhere to go, it drains the living daylights out of partners and carers. Know you are not alone.

tigersmom

So sorry, jazzma. I so admire you for bringing your husband home from memory care. I wish I had been able to do that, but the speed of my DH’s decline made it impossible. Lean on hospice for support and hang in there. This is the hardest part.

Carl46

Jazzma, I didn't want to put my wife in MC either, but it wasn't optional. Sorry it is coming to this for you.

Jgirl57

sorry jazzma, I don’t know much about the hyper oral stage but I do hope hospice has some answers for you. (((Hugs)))

SDianeL

so sorry you are at this point. Toileting at this stage is a challenge. Sadly you will need to assist him and that might not work. Is he wearing Depends or diapers with liners? If not I would ask hospice. They should provide those. Some suggested night lights to mark the way to the bathroom and bright tape on the floor and a big sign by the door. I put a night light on the toilet tank and put toilet bowl cleaner that turned the water blue. Also a contrast toilet seat may help. They make red ones. Can you feed him somewhere else and block off the kitchen? He no longer recognizes food items and doesn’t know how to eat. You may need to feed him. I know you are exhausted. Praying for you both. 🙏💜

charley0419

https://alzconnected.org/discussion/73133/just-need-my-friends-who-understand

besides the cost if he’s acting like this why do you not want him in MC????

Jazzma

https://alzconnected.org/discussion/comment/244128#Comment_244128

I was miserable while he was in MC. Our time is so limited I wanted to spend as much of it with him as possible. This recent behavior changes things. If it's possible to control it medically I still want him close. If not, I understand MC may be necessary. And yes, cost has been a big consideration.

Russinator

((HUGS)) My heart goes out to you.

CindyBum

My heart goes out to you and we all definitely understand.

My DW and her family brought their mother home from MC for her last months. They were incredibly difficult, but with their mom on hospice, I've not heard any of them say they regret the decision.

xoxo

charley0419

https://alzconnected.org/discussion/comment/244142#Comment_244142

I will my wife with me till I can’t do anything for her , she deserves that at least. Hate this freaking illness