So we have come to a point where my love is walking…meandering, staggering… around with his eyes sometimes closed. His legs are buckled, he leans sideways or backwards and it is truly scary. It looks like he could fall any minute, and he could. Not all the time but a lot. And he sometimes does fall, and quite often nearly does. He usually won’t sit down for long.
The care home aides and nurses want….or suggest, that he needs to be strapped into a wheelchair. To prevent falls. They are as terrified as I am when walking beside or behind him. He could hurt himself or them.
And he has fallen a few times …kind of sliding to the ground in confusion when his legs don’t work. No injuries yet. “I don’t know what is wrong with my leg” he says.
Neither does anyone. It is a guess but probably it is a possible bout of sciatica, part the pain meds, possibly the dementia closing down another segment of the mind, but mostly because he can no longer orient vertical, up and down. That was an early problem. Now he doesn’t know where is upright and can’t tell his legs what to do. The dementia is taking away even that.
So it is a safety issue. But I cannot see the advantage or the care in strapping him down like the worst kind of tortured prisoner and I am refusing to sign the paper.
It is illegal to restrain him without my ok.
And I am NOT ok with this.
Over the 2 and a half years we have been there I have seen this. The patient starts strapped down for safety but is taken out and up on their feet for a walk 20 minutes a day. At most. Soon of course they can’t walk at all and life becomes a Brody chair. Where they lie swearing and trying to get out, while the care machine rolls on around them and staff gossip and go for breaks.
Then, unlike when they were mobile, the patient-victims really ARE swiftly parked and ignored. Oh fed and cleaned and cooed at from time to time but that’s about it. No interaction except with family. Even the recreation aides don’t have much to offer once they are parked.
I want to puke. This is not humane.
Many of the parked recognise that I am a friendly face and make some kind of happy contact. But like everyone, I walk on by, with other things to do.
Part of me thinks wildly that i could bring him home, transform our house… foam on the floors and clear out the furniture such as it is, and extra care aides. Let him wander and fall safely in his strange fragmented world. Bring him home.
But foam doesn’t clean well and it is not that simple. It is the 36 hour job.
We don’t have family willing or able to take shifts and we don’t have that much money to get a suitable house, transform it and hire help. That is for the 1%. For us, we are beyond lucky to have public care. Many don’t.
There is also my own slowly eroding remnant of a life to consider – although at moments like this it doesn’t count for much- and those who depend on my work. That must count too.
On the other hand my own mother was strapped in a chair because she kept trying to walk when she was totally paralysed on the left side, with resultant dementia. And there was no other choice. But she was not drugged and never parked. She had my father with her 24/7. I have no idea what kind of love and determination that took. After she died he regained a huge amount of mental capacity and resilience. He did see what was coming for my love and me and told me not to do as he had done.
Comments and advice are welcome, here, on Facebook, or by personal email. I need some help with this.