Things I didn’t know could go wrong with Aged Care

Regular readers may be wondering about the extended silence about my Mum. Last I wrote she was in a nursing home and there was hope, however faint. Well. That went downhill really fast. I will fill you in, but I want, first, to give you an overview of the process of actually finding a place.

First of all, we were looking for a place in a dementia unit. But all of the patients I saw when we toured dementia units seemed much worse than Mum. I saw some places that made my skin crawl. They stank. They were miserable. I could not have put my mum in a place like that with a gun at my head. And although it sometimes felt as though there was, in fact, a gun at my head, I had to draw the line somewhere.

So we found a dementia place in a very lovely nursing home. It was expensive, but lovely, and we are lucky that Mum could afford it. There was one free bed. It was perfect. I filled out all the paperwork, filled with hope, and then the clinical care coordinator rang me to say “We can’t offer your Mum a place. We can’t look after her.” This, bear in mind, was a dementia ward. If they couldn’t look after her, who could? I didn’t even know this was a class of thing that could happen: that a patient could be too demented for a dementia ward. It threw me into a spin.

So I kept looking. Since Mum didn’t actually seem bad enough to need a dementia ward we tried for an ordinary place. I was very up front with them about the fact that Mum refused to see a doctor, and hadn’t been fully assessed. Their clinical care coordinator, Kate, met us for coffee in Mum’s favourite cafe, so as not to alarm her. Mum was delighted to see her and invited Kate to stay at our holiday home. Kate took it gracefully. And the next day we moved Mum in.

It was a disaster. They were calling us every day telling us they couldn’t cope, that she was literally climbing the walls (or at least the fences) and trying to escape. They tried to get us to take her home, but there was no way we could take Mum home knowing now, fully, how impaired she was.

So we frantically searched for another place. In desperation we called an advocacy service that a friend had recommended to me, Signpost Aged Care, and they practically saved my life.  The advocate we worked with, Margaret, made it very clear what our rights, and the nursing home’s responsibilities were. She took careful note of our wishes and found us a list of places with a bed free in a dementia ward who she was confident could handle Mum. My sister checked them out and chose one. We were ready to move.

But: before we could move, the first nursing home held a fire drill. They took the residents outside. Knowing Mum was trying to escape, they did not monitor her. So of course she scarpered. It took them a couple of hours to even notice she was gone.

Eventually the police found her a couple of suburbs away and an ambulance brought her back. The next day she was in her new home, which was amazing. The main nurse in the dementia unit, Marie, is a beautiful soul and she manages Mum incredibly well. Mum is now as close to content as she is capable of being, I think. She still gets aggressive – ironically now it’s because she is so well settled she wants to know why these other people are in her home. She won’t let anyone clean her room, and is happiest when the staff let her vacuum the hallways – which they do frequently.

When I visit she thinks I am an old school friend, or a former staff member, or who knows what else. When I took my girls there she thought they were my grandchildren. In truth, I always feel I age at least 30 years when I visit, so maybe it makes sense.

It’s still surreal. But she is safe. She is cared for. And now that we are cleaning out her house I am finding diaries with the saddest, most paranoid and distressed notes in them that make it very clear she has not been truly happy for a long time. I think we have to accept that this is the best we can do now.

It makes me sad.

And clearing out her house makes me sad. Because it is further evidence of how impaired she has been, and for how long. It is a mess. And things there are bizarre. But we’re getting there.

So she is as close to settled as she can be. And we pack up her things and ready her house for sale, and try to farewell her through her possessions, and little slices of our family history, in a way we can no longer do face to face. Because she is no more present in her body, these days, than she is in her house.

She hasn’t even gone back to her childhood the way many dementia patients do. She is adrift in a sea of incomprehension and fear. She asks for her parents, but doesn’t seem to remember them. The staff at the nursing home give her as much comfort as they can, and she manages, but this is no sort of life.

I tell you this: I don’t want this to happen to me. I don’t want to be looking for my mind like a lost set of keys. I don’t want to know, on some level, that my own self is leaking away, and that I can’t possibly stop it. It is a cruel and torturous death, and I don’t want it. I will not have it.

So don’t tell me palliative care is enough, and that euthanasia is unethical. I have the right to choose, and I WILL NOT GO THERE. Maybe I’ll be lucky, in spite of the family history, and it will never be an issue for me. But if it comes, I tell you clearly, I will not be taken. I will die on that threshold, by my own hand, before I will let this happen to me.