It’s one thing to have to cope with the stress of being an Alzheimer’s caregiver. It’s another thing entirely that he doesn’t care about how hard it is for her, only how hard (and inconvenient and annoying and woe is me) it is for him. He also uses my mother’s Alzheimers to aggrandize himself (look how noble I am! look how much I give!). He is a narcissist, not a standard Alzheimer’s caregiver.
Oh, God. That’s some substantial denial. He is being more than stubborn, IMO. It’s bordering on negligent. She is going to be stressed out in a shiny new house she doesn’t recognize. Her safety has to come first before his (substantial) discomfort. It looks to me like he’s making a lot of decisions that make things easier for him emotionally but don’t serve your mother. Yes, it’s hard. Beyond hard. But, God, you have to do what’s best for your wife, regardless of how hard it is for you. Alzheimers isn’t for wimps. I’m reading what you’ve posted here about his decisions and in my head I’m shouting no! wrong! omigod! stop!
Yeah. She’s not going to think “oooo, shiny new house,” she’s going to think “well, this is a lovely place. When are we going home?”
My 90-year-old paternal grandma is like that. She’s in assisted living, but she always asks my uncle when she’s going home. She’s been there about 3 years. 
Thanks for mentioning me at the end.
I don’t want you to misunderstand, kammie, but if I didn’t have Dondra, I’d be dead now.
She took me back into her life even though she knew I had issues, and she has cared for me throughout this whole time.
She does this as my wife and because she loves me.
She also puts up BARRIERS because she loves me, and these things she does not only as my wife, but also as my caregiver.
Sometimes I have good days and I can remember, and some days I have to be told what day it is and how long it has been since I have shaved.
I know how hard it must be for D, which is why, when we first re-married, I told her: “If you can find love with someone else, then go to him”, and I meant it.
She (Dondra) chose to stay and so must your stepdad, if he cares and loves your Mum.
It takes me a long time to post anymore, but I just wanted you to know that you are in our thoughts and I hope he makes the right deciscions.
Best Wishes Always
Bill
Then he really should have more home-care than one day a week.
Will he listen if you point out that the practical help will leave him better able to provide the emotional support she needs?
She’s right. It isn’t home.
Does any-one have enduring guardianship or medical power of attorney?
I was a caregiver for 6 years to someone who was entirely bedridden. I know a little about caregiving. It was the hardest thing I’ve ever done, 24/7, 6 yrs, more frights than I care to share.
One thing that pissed me off royally and made a hard thing way harder than it needed to be, was people who waltzed in, with no experience and started telling me what would make things easier. I know they were all well motivated, but the truth was they weren’t living it 24/7 and all those opinions became oppressive at some point.
Like having caregivers/assistants in your home. Until you’ve experienced this, it sounds like it would be just more hands to help, and nothing but help. That’s not the case. Every new person in your home has to learn your charges little idiosyncrasies, the household routine, the family dynamic. Until you’ve been through it with 10-12 different aids you cannot imagine the additional strain it can add to a household. They almost all come with opinions; what cream you should use, what food you should serve, how often to bedbath, etc, etc, endlessly. At first you’re all open to every suggestion. Then you begin to realize that someone needs to take the helm, make the decisions, set the protocols, make the hard choices. Committees won’t do, you’ll soon find yourself adrift in an ocean of well meaning confusion. Of course the lack of privacy, in your own home, takes it’s toll too. As do scheduling issues, staffing changes, thousands of unpredictable things.
“You should use respite care more!” Yeah, no kidding! Do you have any idea the amount of organization it requires? Scheduled weeks if not month ahead, transfer of medications, for a bedridden patient there are ambulances to arrange. For a visitor to a long term care facility that means taking their tv. There’s dentures and special gowns, trust me when I tell you, you have no idea. Now throw in, that the patient, doesn’t like it and sees it as punishment. And it wasn’t my spouse, I can only imagine that making it all the more difficult.
The caregiver begins by trying to explain, to everyone with an opinion, the complicated ins and outs, of the things they think will help. But soon they just give up, it’s just another layer of exhaustion they don’t need. So they just smile and go on. After all, these people don’t really know the world you’re in. They think, because they’re visiting, or knew someone who did something similar when it was their parents, they know. They don’t.
What you need to keep reminding yourself is that, very likely, these are the spouse’s decisions to make. Yes, it’s your parent. But, unless other arrangements have been made, these are her husband’s choices to make. He’s doing the caregiving, he’s with her 24/7, it’s his wife. I know it’s hard, but don’t try to push him, it’s not going to help him get to where he needs to be. He’s acknowledging she’s declining fast, so he’s not in complete denial.
Try to be supportive of whatever his choices are, and when he hits the spot, where he has to make the hardest choice, he’ll turn to you. But if you become adversarial, he may, out of sheer stubbornness, resist.
I wish you nothing but best wishes, you will be in my thoughts and prayers.
I have been absent from the dope for quite a while and wondered how you fared. I’m pleased to know that there’s someone to care for you.
Thanks for your post elbows. You are absolutely right that any choices that are to be made are my Stepdads and his alone. But it’s just really frustrating to watch him trying so damned hard to do the best thing by my mum when it’s obviously hurting him and affecting his quality of life too.
Y’know, I sometimes wonder whether his keeping her at home and minimising her contact with medical/aged care personnel is a way of perhaps hastening her death so that she DOES die at home and not with strangers in some unfamiliar nursing home. He hasn’t intimated any such thing to me, but it wouldn’t surprise me either. If so, he has my full support anyway. Death is a pretty touchy subject in the best of families, and whilst I’ve often wanted to broach the issue with him have felt reluctant to do so for obvious reasons.
But maybe that day is nearing too, who knows.
Again, thanks for all your input and support folks.
kam
In the case of my parents, Daddy felt that it was his duty to stay “at the helm” so he tended to the lion’s share of everything to be done for Mother. He felt as though accepting assistance meant he wasn’t doing his job. Perhaps your stepdad feels a bit of the same.
I think he probably benefits from visiting with the neighbor, perhaps the neighbor could pop 'round to step-dad’s house next time so that Mum isn’t left alone.
nm
For some people it comes down to not making that hardest of choices, until they’ve done, literally, all they can. Then, and only then, will they be able to choose this course.
No one should recommend, to anyone, that they should institutionalize their Alzheimer afflicted spouse, until they have actually visited such a facility. I have visited every one in this city, it’s not pretty, believe me. If you’ve never set foot in one, keep your opinion to yourself.
You may believe they’ll get better care there, don’t be so sure. Most are little more than housing. You may believe they’ll do better there, again, don’t be so sure. They are frightening and confusing places for the non afflicted. And contrary to what you may have been told, not everyone ‘settles in’ well. Same goes for thinking it will be better for the surviving spouse.
I cannot imagine going to visit someone I love there, knowing I’d put them there, I’m pretty sure it would impact me pretty negatively, even knowing it was the only choice.
Yes, sometimes it’s the only way, the only horrible choice available. But it’s not something anyone should be bullied into doing. Your opinion may be valid but like abortion it’s an awfully personal choice. Just try not to be overbearing in expressing your views, is all it takes.
The rages at my own stupidity (not being able to find something one minute after laying it down) are gone. (I am much more mellow these days). However getting my thoughts together enough to make sense here, is another matter (as is evidenced by the number of people who have to ask me to clarify). That makes me madder than a wet hen (at myself, mostly).
Luckily, y’all have been kind enough to overlook it.
Sorry for the hijacks, kammie!
Q
The part about the swig of dishwashing liquid made me want to scream out to him, babyproof that house now!!!
Same way we have locks on all the under-sink cabinets where all the household cleaners are stored so that our 3 year old doesn’t get into them, he needs to have locks of some sort on his cabinets so that your mom doesn’t take a toxic drink before he can stop her.
Sure, they may be moving into a new house at Easter (stupid idea, I agree), but plenty can go wrong between now and then. I assume hardware stores in Australia have babyproofing hardware just like American hardware stores do.
kambuckta, we all wish there was something we could do to make it better, but there isn’t. Our thoughts and prayers are with you. Your family situation sounds like one we had.
Not family actually, but very close friends that were like family. The first person I ever knew that had Alzheimer’s was a dear friend of my grandparents. Della babysat me as a child, she was like an aunt. When she started failing her husband Bob didn’t want to put her in a home, as he was worried what people would think. But his health started declining from stress, he couldn’t be awake 24/7. He caught her putting a tub of Kool Whip on the stove to cook. One night, while he was asleeep, Della left the house in bare feet and her nightgown and somehow walked three miles away! A late night motorist stopped and picked her up, but Della didn’t know her own name so the guy drove with her to the police station.
After that Bob put Della in a nursing home and he got better because the stress was less. He could still see her everyday, although she didn’t know him anymore.
I’d rather be dead than have Alzheimer’s.
My mother had probable Alzheimer’s and passed a little over three years ago. We kept her at home until it became so obvious that we could no longer give her the care she needed. In her case, it was the physical deterioration that prompted out decision – she was beginning to forget how to walk, and it just wasn’t safe for her to remain in the house.
We took care of her for, what, nearly 5 years? At the very beginning, people were already pestering us for not institutionalizing her. We didn’t want to. She could still walk, talk, and had more moments of clarity than not. By the same token, we had very little issues with, say, drinking dishwashing liquid or wandering (my mother did neither). On the other hand, we never let her out of our sight. That was very difficult and spurned quite a few heated arguments because we didn’t like having to do such and she, of course, didn’t like being watched.
I’m still convinced had we placed her early on, she would have deteriorated much quicker.
And it was more than difficult – god, I can’t even think of a word that would precisely describe it. My husband became her FT caretaker after he was laid off because there was no way I could have done it. I’d come home from a hellish day at work and would have to “relieve” him for a bit. That made him feel guilty, I felt guilty…it was an utter mess there for awhile. My poor mother would somehow intuit our struggle and start crying about how much she wanted to die because she didn’t want to be a burden. So that would start another round of arguments…god.
I got the brunt of criticism since I was the one who was “out there” in the world. “Put her in a nursing home!” “Sell the house and put her in specialized assistant living!” “Don’t do this to yourself!”
“She’s my mother.”
Would I do it again? I hope to god not, but now we’re warily watching my FIL struggle with some stuff. Both his parents had dementia, so genetically it wouldn’t be a surprise if he too has it, but for right now, it’s not our call – it’s my MIL’s.