Steady decline …

JC5 · September 18

Things are changing! Noticing a lot of little changes lately … choosing cookies for lunch over a sandwich, having a danish for breakfast instead of a protein, picking through his food taking out pieces of onion or peppers which he used to like, giving him his pj’s to change into and getting into bed with the same clothes he was wearing, sitting in every room I’m in, following me to the deck to sit where he never wanted to before, not making it the bathroom in time in the morning ( and refusing to wear the underwear I got him for that), not wiping properly after a BM , watching repeats of shows and ball games as if they were new. He does nothing although he is capable of doing simple chores and does remember how to , he just doesn’t want to. 5 years slow and steady decline Keep the faith as hard as this life is!

CindyBum · September 18

Hang in there!

blacksparky · September 18

Sounds a lot like my DW. We are in year 3 following diagnoses of EOAD. She is firmly in stage 5 with some stage 6 creeping in. So far she is not having any incontinence but sometimes she doesn’t realize the toilet paper is there and will use her underwear to wipe herself and then puts in toilet. She has forgotten to flush so I’m happy for that as I can go in and retrieve the soiled underwear before it gets flushed and stops up the sewage. She has also gone to bed in the same clothes as she has on. She needs help in the shower and will go in with her under clothes on. I have decided to pick my battles and just let her do her thing as long as she is safe. Like your DH, mine would eat nothing but sweets if I let her. 😂

Cathy coconis · September 18

https://alzconnected.org/discussion/74128/steady-decline

JCS - sounds a lot like my DH, except for the bathroom issues, that we’re not facing yet. When you say, does nothing, I know my husband is sitting out in the sun while I race around to do things. On the other hand, he’ll think he can do something. Last night insisted he wanted & could make hot dogs & beans. Ok. There was going to be corn & FFries- he suggested, on his own.

When he said it’s ready, he’d forgotten corn & FFries. I could care less. But the memory portion is gone obviously. He didn’t even know.
so maybe when you think he can do simple chores, he can’t, or he doesn’t recall the first step. Perhaps if you got him started on one…

I know. This is so difficult. As I watch the decline I feel more and more alone

Take care all

Cathy coconis · September 18

Oh and the sweets! Oh my! Here too!

Biggles · September 18

Yes the same here except for the bathroom bit, I’m not looking forward to that actually I’m not looking forward to anything concerning this b..awful disease.

RetiredTeacher · September 18

Sounds so familiar. We went out to eat today and before we left the restaurant I asked if he needed to go to the restroom. He said no. We barely got to the car and he was squirming in his seat and reaching for the urinal I constantly keep in the car! No asking next time, just saying we'll leave after he goes to the bathroom. He does nothing but sit and watches the same episodes of old rerun shows is his preferred activity. It is so hard when there is so much to be done. I can do it but I'm constantly busy doing chores and am exhausted by the time I clean up dinner. It's not his fault, I get it but if I don't stay on top of things daily, they easily get out of control. I do it all. I get resentful thinking he can and should help but he struggles getting a twist tie off a loaf of bread, knocked over a vase of flowers while making his sandwich, spilled his food while carrying his plate....etc. you get the picture. It is so hard....work, work, work, try to sleep, very interrupted by DH and get up and do it all over again! Sadly that is our life now. Praying for all of you doing this job. I am thankful I still love my DH, it would be much worse if I didnt.

Bluebird · September 19

My husband is also big on sweets. I went out of town and our daughter came to stay with her dad. I told her to take him to a local deli and pick out meals for them to eat while I was gone. My husband told our daughter he would much rather just go to a bakery and just get desserts to eat while I was gone.

Vitruvius · September 19

I'm the caregiver not the patient but I've taken to eating more treats as my well deserved reward for putting up with all this. :)

howhale · September 20

Went through the sweets phase with my dear wife. When posed to our PCP, a terrific doc who knew and cared for my wife very much, his advice was to let her eat whatever she wants. She needs calories. You are not going to stop or change the course of this disease, let her enjoy whatever she wants and enjoy that she is happy. I took his advice and focused on making sure she got what she wanted and enjoyed it. That enjoyment, versus the losing battle to be nutritious, made her and me happy and those happy moments are precious. In time her diet preferences changed again and she wanted very nutritious meals and lots of it. Her quantity increased dramatically for several weeks. Fruits, vegetables, protein and little sweets. Her preferences dictated the diet. And then it changed again, she began eating less quantity and more selective. Not back into the sweets totally but much less food. And then it was over. I know we all want to try to be responsible and do the "right" thing for our loved ones but, in the end, isn't the right thing doing what makes our loved one the most happy, satisfied, having the best day they can in the midst of a living nightmare.

ronda b · September 20

I think I'm going to follow howhale example with my Dh. It's not worth the be aggravation trying toget him to eat healthy. He just gets mad at me. So if I can get boost shakes down him once a day and fairly healthy meal couple days I'll be happy.

ronda b · September 20

https://alzconnected.org/discussion/comment/254016#Comment_254016

Steady decline …

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