For Those Incredible Folks Who Keep the Journey Between the Ditches

Caregiver support groups. Advice and the resources for the caregiver. A single caregiver breakout session in an all day Parkinson's conference. The national and regional Parkinson's organizations certainly have the caregiver covered, as do the reputable medical websites.

As a caregiver, I am glad they do. It would be difficult to do the job I am paid for without having these resources. They are invaluable for helping me work with families touched by PD.

However, I don't know what I would do if I were married or in a committed relationship with someone who has Parkinson's. It would irk me to be called a caregiver if, as a life partner, I step forward out of a sense of commitment to my relationship and do the job for no pay at all. But according to a 2023 AARP study, I would be part of the 11.5 % of the U.S. population providing what they call "informal caregiving" for family members. The Parkinson's Foundation (2023) estimates that there are between 1 and 1.5 million people diagnosed with the disease so that is a lot of "informal" care.

I find the term "caregiver" can be demeaning to the person with PD. PD is hard enough without having to be labeled as a person who requires informal care.

We already have good words for the other person in a relationship- spouse, son, daughter, friend,etc. These nouns work just fine for most of our life, including the day the aging process catches up with our bodies and makes it hard to go it alone. There is really no need to use a new word just because a person has developed a life-changing condition.

What we do need is a strategy to make the "informal" provision of care more formal. If it is care, supporting the job as part of a patient's overall treatment plan would be a great start.