4 hours ago
7
My dad has Alzheimer’s, which is not unusual for an 84-year-old man. He lives with my mum, who is also in her 80s, in a two-bedroom apartment in Canberra. My mum has multiple sclerosis, which makes looking after a fit, otherwise healthy man with Alzheimer’s very challenging.
Dad cannot think in any structured way. He can’t really understand what’s going on around him and he can’t follow verbal instructions. He’s too big and strong to wrestle in and out of clothes, the way you would with a small child, but he has to be wrestled in and out of clothes fairly often because he also doesn’t really understand when he needs to go to the toilet.
He likes to go out for a walk every morning and many afternoons, but he can’t go by himself because he has no idea where he is and how to get home. My mum can’t go with him due to her multiple sclerosis, which also means she gets very tired and needs a lot of rest which, when you live with a six-foot-tall toddler who really wants to go outside, is impossible.
The situation is clearly not sustainable. While they get support every morning – someone comes to feed, shower and dress Dad – for the rest of the day, most days, Mum looks after him, which is wearing her out. My brother has his own family with its own issues (a classic “sandwich” situation) and I live in a different state. So we decided it was time to put Dad into care. This was an emotionally difficult decision but once we had made it we congratulated ourselves on being calm and sensible and planning ahead, rather than waiting for an emergency.
It turns out there are no rooms in aged care for people like my dad. We filled in forms, we made phone calls, we waited on wait lists for months, but nothing happened. Eventually, one day, I burst into tears talking to the manager of a home, and for whatever reason he was moved to help me. A place was found. We filled in more forms. Dad was admitted and we all felt a horrible mix of guilt and relief.
The next day, when I went in to visit him, the home manager said they would not be able to keep him: he walked around a lot and couldn’t understand instructions (including very important instructions about which room was his and which rooms he shouldn’t go into), and that was disruptive. They didn’t have the staff or the skills to care for him. But, I said, we told you he has dementia: this is dementia. They shrugged and said, we can’t look after him.
For two weeks we tried to get him into another home in their network, one that did have the staff and the skills, but there were no beds. Then for the next two weeks, while they sent us emails telling us all the reasons Dad was no good (while I writhed with guilt about him going into other people’s rooms and frightening them) we tried every other home in Canberra, explaining it was an emergency. There were no beds.
We called the government’s aged care support service and asked them what to do. They said, check the room finder on our website: look, there are beds available in all these homes! But I have called all those homes, I told them, and there are no beds. Wow, they said: they should update their website! I agreed that that would be good, and that was the end of our conversation.
Several of the people we spoke to said you should put your dad in the hospital. If you do that, they assured us, he will be very quickly admitted into a suitable aged care home. We didn’t want to put Dad in the hospital. Dad fears and loathes hospitals, and I felt like even a few days in hospital would be the end of him. Never mind that one of the reasons everyone’s surgery keeps getting delayed and ambulances line up for hours outside emergency rooms is that hospital beds are full of old people who have nowhere safe to go.
In the end, though, we couldn’t think of any other options so we called the hospital. No, they said, you cannot just drop your dad off here and expect us to look after him; which, I thought, was fair enough.
The other week the home finally kicked my dad out and he is now back with my mum. He is great – full of enthusiasm for life, cheerful and affectionate. But imagine spending all day every day with someone who cannot sit still, who cannot stop talking, who doesn’t ever listen to anything you say, who cannot make sense, who will not take his shoes off or put them on. If you are the parent of a young child, you know what this is like – in this case, though, the child is bigger and stronger than you are, and people in the street do not look at him and say he is cute. His Alzheimer’s will get worse, my mum will get weaker, neither of them are safe and nothing will be done until there is an emergency. And that will be too late.
