Anyone who has been heavily involved in supporting a loved one with dementia to live in their own home – whether it’s a spouse, a parent, an uncle or an aunt – knows that the prospect of a move to residential aged care often hangs heavily in the background, whether discussed openly or not.
But what happens when the situation changes and it becomes clear that residential aged care can no longer be avoided?
It could be because the person’s needs have increased considerably, making care at home challenging or impossible. Or it could be because the caring role and tasks have become exhausting, and the carer feels unable to go on with things as they are. Often, it’s a complicated mix of both.
Here are some ideas on how to support family members through this enormously challenging time of transition.
We want to believe that we’ll be able to take care of our family members forever, to support them and help them stay in the family home. But when that option comes to an end, it takes an enormous amount of courage for a family to be able to stop, think, and then look at what their options are moving forward. It’s a really big realisation for a family to come to, so don’t underestimate it.
I encourage families to have a discussion early on — soon after diagnosis if possible — about the various care options available and to include the person living with dementia in the decision-making process. Some families leave this conversation until it’s too late.
The move to residential care is not a simple process. There are so many different and difficult feelings associated with making such a big decision like this: grief, loss, anxiety, guilt, fear of trusting others and the unknown.
Often you’re left asking yourself, ‘If I can’t take care of them, who will?’. The handing over of trust to others – when we think we’re the best person to take care of our loved one – is a real challenge.
At first we may try and bring in paid care service, however, this might fail. And there’s a fear that we have let the person we love down; that we haven’t fulfilled their need or their want to stay at home. Family members may also feel grief and sadness as they watch the changes and deterioration of someone they love.
Most people feel a bit helpless too, especially when they then have to navigate the whole system of aged care, which can be really complicated. These are all deep and powerful feelings and over time each one needs to be acknowledged and unpacked in its own right.
My main piece of advice to family members is to say: you haven’t failed them. It’s not a personal failure to decide that you’re unable to continue in a caring role.
We know how to be children. We know how to be partners. There are lots of books that have been written about relationships between partners and relationships between parent and child.
But there’s not many books about caring relationships. We’re not educated about how to take care of the changing needs of a parent or spouse.
Coming to the realisation that we as the child or as the partner can no longer take care of this person – it doesn’t get much harder than that in relationships. So, try to accept that you’ve been doing the best you can for a very long time.
When it comes to supporting older people and people with dementia, it’s not a predictable path. The journey is long and winding and it takes many different turns.
The move to residential aged care is a major change along that path and for many it comes with a tumult of feelings. Above all, try to look at the situation with a broader sense of compassion and understanding for the feelings of everyone involved in the situation – including yourself.