When you’re 56 and you’ve raised your children and work full time, nobody seems to question whether you have the right to take risks. If you get on a snowmobile and drive fast, people might raise an eyebrow and scold you, but they don’t question your right to take that risk. What about riding a motorcycle? People choose to ride without helmets, and while some think that’s just wrong, nobody questions whether a competent adult should be allowed to risk their own life.
How about when the doctor suggests that you exercise, lose weight, change your diet, quit smoking, take your medications or cut back on the alcohol. This same 56 year old can make those decisions and take whatever risks I want to with my health. It’s about being independent and the dignity that goes with it. It’s called Dignity of Risk.
As a person ages, devoted and caring loved ones can sometimes forget about the importance of being able to take risks. We want mom to take her medications. We are concerned about that neighbor who lives alone. We worry constantly about grandpa falling as he shuffles his feet.
The same is true when children with disabilities become adults. Those loving parents who protected them for 18 years are now sorting through the emotions of that child becoming an adult. They worry about the daughter who has Downs Syndrome moving out and living on her own. Or the son with a disability wanting to manage his finances. These are people who truly care and just want that adult child to be safe…to protect them…sometimes from themselves. Having loving family and friends is a blessing!
However, as wonderful as it is, that same concern often results in major conflict. The right to make decisions for ourselves is part of who we are…our humanness…our identity. In a very real sense, we are the sum of our life decisions. I have made some great decisions in my life. And I have made some terrible decisions, that had unpleasant consequences, even harmful consequences. But the fact is, at no time did anyone ever question my right to make those decisions.
Imagine if your worst decision resulted in all your decision-making rights being taken away. I’m happy it isn’t easy to take that right away from me. Therefore, I have to understand that it should not be easy to take it away from anyone else…my dad…my friend with a disability…an adult child…anyone.
My dad can and does make some decisions that I don’t agree with. He knows the risks (falling) and he’s fully prepared to accept the consequences of them. Does he understand that a serious fall would also impact his family? Absolutely and that bothers him but it probably isn’t going to make him do what I want! It used to terrify me imagining all sorts of awful scenarios that could happen, but he is an adult and he has the right to make choices…good, bad or otherwise. If I told him I was writing this article, he would probably want me to quote him saying something like… “I’ve been making terrible decisions all my life…it’s not like you should expect that to change just because I’m old!”
Would I feel differently if he had a diagnosis of dementia? I admit I would struggle with not taking control. I like to think that my role would be to try to minimize the risks he is taking. Maybe we work with the doctor to make his medication schedule easier. Maybe we go shopping for new slippers that will be less likely to cause a fall. Maybe we find a personal emergency response system that can detect if he’s fallen. I will probably have to ask myself, “Is this something he would have done before the dementia?” I would certainly have to find a balance between identifying the risks and not letting my imagination run wild with terrible “what ifs”.
Honestly, I don’t pretend to know all of the answers. I just know that there is a dignity that comes with being able to make decisions for yourself. For me, I guess dignity of risk has to go under the “do unto others” umbrella of words to live by.