Dad and I attended our usual PD support group this past Thursday. There was a guest speaker, a physical therapist who works with PD patients, who had come to discuss fall prevention. As one might expect, several people posed questions about falls, including questions about how a caregiver “makes” a loved one with PD comply. The speaker gave an astounding response, “Your loved one has the right to fall.” Everyone was silent for a minute. Then I said, (I’m rolling my own eyes as I write this because I never seem capable of keeping my thoughts to myself!) “Wait, that can’t be right.” “Aren’t we trying to prevent falls here?” The speaker agreed, but went on to say that in the end, the person with PD still has the right to make his or her own choices. He went on to his prepared topic but, yours truly could not let this pass. I raised my hand and interrupted his stream of thought by asking him to go back a minute-please.
So I continued, with incredulousness and passion, to explain that I was a nurse, a health care provider like him, like several other people in the room. And hadn’t we all taken a pledge to protect our patients? Of course we had. And it was carelessness, malpractice even to allow our patients to fall. Why should any less be expected or required for our loved ones. At this point another member of the support group almost proudly informed the speaker that I was an attorney too. And I thought, uh-oh, I’ve over stepped. But the exceedingly patient and calm speaker went on to explain that although we can give our loved ones information, tools, encouragement, etc.; we cannot force them to live their life in conformity with our wishes, no matter how good our intentions. And if we constantly are saying, “Stand up straight, take bigger steps, eat slower”, they will eventually tune us out. In other words, our loved ones have the right to fall. They have the right to not use their walker. They have the right to not take medicine. They have the right to sit in a chair all day because they feel like it. I still left the meeting shaking my head and thinking this did not feel right.
A few days later I went to supper with two former co-workers and dear friends. As we all caught up with each other’s lives, I mentioned this encounter. They looked at each other and said Al-Anon. They both have a family member with on-going dependency issues. But I have never been in an Al-Anon meeting. They said this is one of the basic tenets, that an individual has the right to drink, take drugs, smoke, etc., if they want. No one makes them stop using unless they make that choice themselves.
And as time moved on, I realized this was turning into an epiphany moment for me. I am not, in fact, responsible for every breath Dad takes, for every bite he eats, for every step he takes. I don’t have to be with him every moment of his life, I don’t need to remind him of everything his physicians or therapists have recommended on a continual basis. Which also means this enormous weight on my shoulders is lightened.
Dad and I were talking about changes since he moved in with me and my husband, Lew, last year. Dad mentioned that Lew and I used to go out on Saturdays antiquing or taking day trips. We have not gone out at all this past year. When Dad asked why, I realized it is not because of him, it is because of me! If my job is to prevent falls, injuries, medicine mistakes or natural disasters, I have to stand next to Dad 24/7. If I agree I can provide Dad resources, tools, and people to give him a better quality of life, without me needing to oversee, supervise or organize every step; then I’ve been set free-at least in part.
I know myself well enough to know I will be a work in progress on this issue. But I’m thinking about grabbing Lew and going antiquing Saturday!