Monthly Archives: May 2018

A hard decision: help needed

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.


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Well, he said, holding me as we looked out the window, “I don’t know what happened to us, but now we’re stuck here, aren’t we?”

“Yes.” I wonder why the few coherent words he utters have to be such painful ones. But we are partners and we share our thoughts when we can.

It’s been a rough few weeks, as Don developed pain down his leg, as well as the back. The nursing staff said the tylenol wasn’t touching the pain anymore, so he got switched to stronger pain meds, some of which did put him in a very good mood!

The leg pain seemed to be sciatica, but there is really no way of getting a diagnosis, since  even if one could get an MRI appointment, he would be terrified at the whole experience, and, in any event, treatment is also impossible given his precarious mind.

So he got a nerve pain medication which made him very sleepy (as in walking around with his eyes closed – rather dangerous for all) as he adjusted, but after a couple of weeks he seemed to emerge cheerful and pain-controlled.

He still is talking a mile a minute, with very rare moments of lucidity. He constantly sees things no one else does, and i think usually has very little comprehension of what is said to him. The words don’t make sense, but he responds to calm, love, and gentleness.

Occasionally, in the middle of the jumble, sentences and sense emerge, before he gets lost again in his broken mind. I think of it like the ruins of bombed cities we see on TV — a jumble of building stones, crumbled walls, and rebar, parts of structures, some bewildered and tattered survivors, all thrown together with just faint indications of what the original structure was.

I should add (now that my tears have dried – again) that I know for sure that he was so tired this afternoon because he had been dancing that morning — a care aide told me how much he reminded her of her dad, and her dad too loved to dance. I also know that another one of his favourite care aide friends came on duty while he snoozed, so he will forget all about anything else and just have a good time hanging out for the rest of the day.

I intend to do the same.


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