When Your Adult Child has PD

WHEN YOUR ADULT CHILD HAS PD

by J.B.

We are frequently reminded that PD is a "family affair." When PD strikes your adult child, the sequence of life is out of order.  Elderly parents struggle with supporting the current and future needs of their adult child against the backdrop of their aging and their own mortality.  


My son was diagnosed with Parkinson's disease at age 45. I was 75. Today he is 54 and I am 84. That's not the way it's supposed to be. (A daughter was also diagnosed with PD at age 55.) Take a son's divorce with two school-age sons, transplant me, a mother/caregiver to his home, and total it all for a new living arrangement. That was the easy part, better than worrying by long distance. Also, not too bad was: adapting to a new community, adjusting meals and meal times to meds and med times; paying close attention to the household for comfort and safety, admiring my son's discipline in stretching, walking, running, working part-time and enjoying a social life; participating in the Young Parkinson's Support Group.

What have been the hard parts? Concentrating on phrasing questions (or not) or making suggestions (or not) that might appear to impinge on his competence or independenceexerting extra patience waiting for tasks to be done that would have been simple for him to accomplish in the paststruggling to understand speech that is soft or unclear, matched with my age-related loss of hearing...watching dyskinesia and dystonia change the pace of life wondering, wondering how he'd manage if I were suddenly incapacitated or how he will manage when I die.

From time to time, the moment is right for talking about real time possibilities. He knows that my affairs are in order to make decision-making easy for him. But short of the cure or the miracle pill/treatment, there is still the question of how he'll manage daily life. We have only begun to start that discussion. It will mean involvement of his two sons, now young adults. They will need time to think through the issues. What does a caregiver do in the meantime?

I remind myself daily, as AA members do, I didn't cause the PD; I can't control it, and I can't cure it. But it is possible to manage "a day at a time" by observing the first rule of caregiving: "Take care of yourself!" It's been important for both of us for me to build a personal life outside of home and PD. We're co-independent. I work hard to remember the following:

Don't shovel snow. TAKE CARE OF YOURSELF.

Think twice about climbing a ladder. TAKE CARE OF YOURSELF.

Don't race up or down a stairway. TAKE CARE OF YOURSELF.

Drive defensively. TAKE CARE OF YOURSELF.

Because the best way to be a long term caregiver is to take good care of myself.

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