I have been struck recently by the number of families I
have talked to that are dealing with parents with dementia. In so many of these situations, the adult children are really struggling with making decisions: where their parents will live, who will provide care, how things will be paid for, just to name a few. And in every case, the biggest struggle seems to be balancing respect for the parent's autonomy vs. the need to take control of a potentially unsafe situation.
Unfortunately, I don't have any easy answers. I did recently however have the chance to meet
Viki Kind. Viki has written the book The Caregiver's Path toCompassionate Decision Making: Making Choices forThose Who Can't. Viki's book provides a f
ramework for making decisions that I think is really helpful.
The book goes into much more than I can cover in a short article, but very briefly she talks about figuring out what level of decision-making the adult has. This can be based on professional testing, which is best, but can also depend on your observations of how the adult functions.
She uses a child's level of understanding to help us see how an adult with dementia might be understanding. One example she gave in the presentation I heard is that we don't usually let a 3-year-old decide where to live, but might let a 17-year-old make that decision, depending on the circumstances. It's easy for us to see how a 3-year-old and a 17-year-old think and reason differently when it comes to this kind of decision.
When it comes to Mom or Dad, if Mom can't see at all the danger of the situation at home, let's say she leaves the stove on, takes medication incorrectly, lets strangers into the house, etc., she may be operating more at the 3-year-old level. That means you probably need to step in and start making the major decisions, because Mom isn't able to do that anymore.
In a situation like this, it might be possible to let Mom make some decisions, such as what furniture to take to assisted living. One example Viki used was to tell the parent they were going to assisted living--the decision was made, and the parent was not given a choice in that decision. But the parent was allowed to choose the room they moved into. This gave the parent the feeling of control, because they got the "best" room.
I know that decision making is often more complex than this, but I think Viki has some good ideas, and I recommend that you read the book. It's been helpful to me as I work with families.
