He's no longer walking

JoseyWales

Over the past few weeks, I've noticed DH has taken another step down. He was having a very difficult time standing, but once up and had his balance he could walk. It was so, so slow, but he did walk. Over the last several days, he hasn't been able to get his balance to stand. He's now in a wheelchair. This isn't sudden, I could see it coming. I suppose he could start walking again, but the staff says that over the last few days he really hasn't made any attempt to get up. Staff is now using a lift to help him, and he's not fighting them with it, which is good. 

I've noticed other declines, too. He stopped eating on his own probably 6 weeks ago, but when I helped him eat I could tell if he liked something he was eating or not. Now I get no response between foods. When I go to hold his hand, he attempts to put my hand in his mouth like I'm food I've handed him. 

He used to talk some - it was random phrases that he'd repeat that really had no meaning. But understandable phrases. Now it's just two words to start and then nonsense. 

Just felt like I needed to share with people who get this. I hate sharing with our son because he has such a hard time dealing with all this. And sharing with everyone else makes it seem like I'm looking for sympathy. I'm not - I just want to share the journey with people who get it.

Ed1937

Josey, I'm so sorry. These changes seem to come fairly quickly. Has he tried to use a walker? Do you think he might have a better chance to regain what he lost if he used one? I know this is hard for you, but it's a good thing he is in a facility instead of being home where you would have to try to handle it yourself.

JoseyWales

I don't think he'd be able to use a walker. Over the past few weeks, when I've helped him up I had to hold him up for a few minutes before he'd get his balance. He wouldn't hold on to me - I had to hold on to him. So I don't think he'd understand to hold on to the walker to get his balance. 

I think next time I'll go I'll see if I can get him up to walk, just because.   But in a way it's easier for him to stay sitting down. He was constantly up and walking before. I couldn't get him to finish a meal before he was up and off. 

M1

So sorry Josey, it breaks your heart no matter how prepared you think you are. Is hospice on board? He will likely qualify if he can't walk.

JoseyWales

M1, that's a good thought. I haven't talked to anyone about Hospice. I'm not even sure how that works in a facility? I know it does, I just don't know how. I guess I should ask someone next week.

60 falcon

I get it Josey.  

Six days ago my wife was walking, talking, and feeding herself. In just one day she went to being bed bound and being hand fed. Her ability to talk wasn't great before this but it's much worse now. She's currently in the hospital and being treated the same as hospice will. When we find placement for her, she'll be on hospice immediately. One of our sons is having a particularly hard time with this.  For me, talking with both of of our sons is critical to dealing with this.

I'm sorry you, your husband and son are going through this. You aren't alone.

Beachfan

Josey,

I’m sorry to read of your DH’s decline. I could have written parts of your post; it seems your DH and mine are experiencing similar progression.  My DH is increasingly unsteady when attempting to stand or walk.  He very seldom initiates standing on his own; he waits for someone to physically assist him.  He sits quietly with his eyes closed much of the day.  His speech is gibberish with an occasional understandable word thrown in.  He is fed by staff and he opens his mouth like a baby bird whenever anything is in the vicinity of his mouth.  When I “visit”, I chat with staff and other residents, help him with his meal, walk him to his next activity (in which he does not participate); I am with him, but there is little to no meaningful interaction and he shows no emotion either when I arrive or when I leave.  

I don’t encourage the kids to visit; I know how hard it would be for them to navigate such a one sided situation.  I just described DH’s life to my oldest son today. DS mentioned that he and my daughter were planning a visit- - what did I think?  I said you’ll find that Daddy is between here and the great beyond; I don’t know how else to put it.  I share your journey, Josey, I get it.  

French

Josey

I am sorry. It seems we experience fast decline with our LO. We are just following you. 

I also have bad news but not ready to share them for the moment. I will post when I will see it more clearly. For the moment it is just panic and a big ‘?’ On what to do.  

JoseyWales

Falcon - DHs decline has been steady and this wasn't totally unexpected - It must be so hard for you having it happen all at once.

Beachfan - You really are mirroring my visits. Talking with staff, feeding him while he sits there passive yet opens his mouth, and almost no response when I come or go anymore. I'm not encouraging anyone to visit like I was before. 

French - You and I have walked similar paths this whole time, I feel. In one way I'm relieved (?) about this decline for my DH, because I no longer worry about him fighting staff or pushing/hitting other residents. It's bad enough that this disease takes away all memories, but to leave the mind with all the anxiety and paranoia but no ability to understand reality is just the worst. I'll be thinking of you and we're all here when you're ready to share.

Marie58

Josey, I second M1's suggestion to look into Hospice. My DH, who's also in MC, went on Hospice at the end of Sept. He had a fall in Nov and has been bedbound and hand fed since. Not long after the fall, I learned that had he not been on Hospice, he would have been asked to leave. He would have gone to a SNF which would cost even more and possibly not have as good of care as he currently gets. 

I'm glad your DH doesn't fight the lift. My DH was terrified of it so is in bed 24/7. 

Joshbi

Marie—I am disgusted to read that the MC facility for your husband would have asked you to move him if he had not qualified for Hospice. I am having a hard time understanding how a facility is licensed to care for Alzheimer’s patients and other dementia (under the umbrella of Assisted Living?) only to dump them if their care becomes too extensive for the undertrained/understaffed/ overburdened facility. Is this practice widespread if a MC is not part of a CCRC that transfers patients to a higher level of care if needed? Is this practice also common in so-called group homes? It sounds as though MC-only facilities are all too eager to admit patients and just play the odds that they can always tell a family it spouse that their loved one requires more care than they can give unless they qualify for Hospice. Are these places mostly For-Profit operations?  What if the patient rallies and “graduates” (awful term) from Hospice care? I am starting to rant, so I’ll just hope someone will post how such MC facilities are allowed to dump patients at will. Thanks very much, and buyer beware. You have opened my eyes to the “What if” factor of MC scams. —Josh

ThisLife

Joshbi, I've just started researching MC. Found an extensive list of places. There were a surprising number that stated they take residents through stage 6.  I guess at least they're up front. Since H is in stage 6 I can check them off the list.