Rant ahead. You have been warned.

[reynardo]

For the news when my dad had the stroke, go here.

My dad's still not good. To be honest, my dad's in a pretty sad state. He's unable to walk without two people holding him up, he doesn't have enough control on the *good* side to just press a button (for instance to turn on the remote control for the television), and his left side is pretty useless.

The other problem is his mind. While there are parts of it still intact, there's a lot lost, and his short-term memory is pretty much gone. So when the physios get him to try walking using the frame, and give the instructions about "foot forward, now hand, now other foot", he's fine for a little while, but he's lost it a few hours later. He has vascular dementia, and has slipped a long way down as well as the damage from the stroke.

And he hasn't got bathroom control.

We had been told a week ago that he would need 24 hour high-dependency care, and that the best way for him to get that was to be in a nursing home. Which sucks, but that's the way it needs to be.

Now the rehab place he's in are saying he can come home in a couple of weeks.

It won't work.

My parents' place is an upstairs (first floor in Australia) unit with stairs up to it. It doesn't have railings everywhere, or a wheelchair-friendly bathroom. In fact, you're not supposed to have wheelchairs up there - they don't work well on the carpets, and you can't have a wooden floor in an upstairs unit as all the sound goes downstairs. Mum spent quite a bit of time and money getting the unit set up just right for her and Dad when they moved there three years ago.

But it's more than that. My mother wouldn't be able to care for him by herself. She's been told that there would be carers coming in in the mornings to shower Dad and get him into a wheelchair, and then at night to get him into bed. And if she needs him moved for anything else, there would be a carer on call. And the physio and OT and other people would come in and see him there. But, she's been told that she'd be able to have a carer look after Dad for a couple of hours while she went shopping, but that's it.

She'd have to call the carers for any time Dad needed the bathroom, except that they wouldn't be there all the time, so there would be so much to clean up. And she'd have to be taught how to fit and remove his catheter.

And she'd have to be the one to feed him most of the time, and attend to his every need.

She's being expected to basically give up all of her life to be his carer. She's grossed out by the bathroom stuff, and she doesn't handle the feeding well either.

She's finding it hard enough now to cope with the washing they're sending home from rehab, the running around she needs to do for the paperwork, and the time up visiting Dad. And he's started telling other people that she doesn't go there - he's forgetting her near-daily visits. He rings her nightly asking her to take him home. She has to remind him that he can't walk, he can't get up the stairs, he wouldn't be safe once he was up there, and he needs to do the rehab.

Now she's willing to do a great deal. But she's not young any more. Mum's 78, Dad's 84. Even with assistance, that's a huge amount of work. She's being pressured to give up her independence, her life, the beautiful unit she put so much effort into, and to being Dad's primary carer for the rest of what life he has left. It would destroy her.

The only benefit it would give is that Dad would be happier at home, surrounded by familiar things, and with Mum at hand all the time. But I also think he would become extremely frustrated and depressed at everything he couldn't do at home very quickly. No making a quick cup of tea, no hitting the secret stash of chocolate, no dragging his plants around the balcony. So it won't be like it was when he was home before. He'll be demanding Mum does all that for him, and angry if she doesn't. And she won't have ten minutes' peace. He'd already become worried if she went out for an hour and he didn't remember she'd carefully told him she was going up to the shops.

I'm also really, really skeptical about whether they would ask a man to do all of that. If Dad still had all his brainpower, and it was Mum that had the stroke, there is no way he would be pressured to be the carer for her.

At nursing homes, they're set up with entertainment and groups for people in Dad's condition. They have people to feed him, equipment to lift him for showers and changing, nurses always available for any medical problems he might have, and facilities for his care and therapy where Mum doesn't have to buy massively expensive equipment that will spend most of the day unused at home.

If he were still mobile, it would be possible. If he had his mind and memory, he wouldn't be so needy for Mum and she wouldn't feel so trapped. But we'd already talked about him needing a secure dementia unit in a couple of years anyway, and the stroke's pushed him back so far he'd be ready for one now. It's only the fact that he wouldn't be so mobile, so wouldn't be doing things like burning the saucepans and leaving the taps on ...

Mum's been careful with the money for years, and she's worked out she can afford to have Dad in a decent nursing home. It won't be easy for her, but she could manage.

Basically it comes down to this. If Dad's back home, his quality of life is no better and probably worse than it would be in a good nursing home. He was going to end up in one in a couple of years anyway. He'd like to be at home, but I don't think he'd be happy there for very long in the state he's in.

If Dad's at home, Mum's quality of life would be terrible. She'd be trapped there all the time, except for brief trips out for shopping. She'd have the option for putting him in respite care from time to time, but he'd be the same there as if he was in a nursing home anyway. Physically she'd be exhausted, and mentally she'd be terribly frustrated.

It's a hard balance, but I'm hoping Mum doesn't give in to the pressure to have about $100,000 worth of aids put in for Dad to come home. It's not worth it for either of them. And I'm angry furious that it's being suggested.

Comments

[bunnyhugger]

I'm with you. I know my husband would do anything for me, but there's no way I'd expect him to do all the work of a trained nurse's aide, which is what they are asking of your mom. Especially not at that age!

A good friend has had to face similar things with his mom. She had the misfortune of early onset Alzheimer's, and he moved her in with him and became her full time caregiver for a few years. Eventually it reached the point where he couldn't bring her out in public (mainly because she couldn't be sent alone into the women's room) nor could she be left at home. Finally he tried respite care, and during the few weeks she was there, she got rapidly worse. It's as though her fragile grasp on things was made possibly only by constant routine and the disruption of that was something she didn't recover from. He had to move her to a memory care facility. He had already put in a really admirable effort to keep her with family and home as long as possible. She was at least still able bodied.

[kerravonsen]

*hugs*

I'm also really, really skeptical about whether they would ask a man to do all of that. If Dad still had all his brainpower, and it was Mum that had the stroke, there is no way he would be pressured to be the carer for her.

Indeed. Grrrrrrrrrr.
And she's 78. Seventy-eight! All that stuff would be too much to expect of someone twenty years younger, let alone someone her age. Grrrrr.

*hugs*

[manna]

I'm so sorry. I hope that you can support your mum to get your dad into somewhere that can give him the kind of care he needs.

[moxie_man]

Prayers. A nursing facility appears to be the only option.

[malada]

I'm so sorry to hear all of this.

My brothers and I had to take of my dad after my mom died and he was in much better shape. It was hard even with aides coming in. It really sounds like the nursing home is the best option.

*hugs*

-m

[laurenthemself]

Gods, I hope he goes into a good nursing home where he can be properly cared for, rather than running your Mum into the ground.