Graycare (graycare.net) is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites. Learn More
My wife, my dad, and I got in the care and drove off to the meeting. It was scheduled every Third Thursday at 5:00PM at a local hospital not 10 minutes drive away. Since we're in the house most of the time, I'm not embarrassed to admit I still used Google Maps.
Taking the story back months even years. My father was diagnosed with Parkinson's over 17 years ago in 2005. Yet today in 2022 was my first-ever visit to an in-person Parkinson's support group.
I'm embarrassed to admit that.
We arrived 15 minutes late, something I'm sure other families suffering from Parkinson's can understand. We found the closest table with chairs in the room, had a seat and listened to the people there.
There were two closed containers of fresh baked cookies, each container half full. I suppose that's the real reason to be on time. We missed out on the cookies.
Demographically, everyone my family included was white. This is a small town support group after all, in a county 90% white, 7% black, and 7% hispanic.
It was men who had the Parkinson's. 60+ years of age, with their wives accompanying them to the meeting, assuming the caregiver role.
The group was lead by a Registered Nurse and College Professor, who sat in the front.
They all seemed like regulars. We were the only new people.
I think my dad was the only person at the meeting with the Dementia bit. The others were suffering from various degrees of physical and motor disfunction.
Parkinson's Fitness. They talked about programs they're adament about. The Big and Loud program is one brand name program that comes to mind. You can download a 68-page PDF about the Big and Loud Parkinson's Fitness Program here on the Parkinson's Foundation Website.
They talked about sticking with the program, and encouraged other people with Parkinson's to maintain routine exercise despite the pain. "You've got to keep moving."
That's what the people with Parkinson's talked about.
Caregiving Challenges. The spouses and caregivers talked about challenges administering daily life stuff and routine household chores. In caregiving, they're called Activities of Daily Living (ADLs).
The US Center for Medicare and Medicaid defines ADLs like this:
Activities of Daily Living (ADLs): Activities of daily living are activities related to personal care. They include bathing or
showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating. If a sample person has difficulty performing an activity by himself/herself and without special equipment, or does not perform the activity at all because of health problems, the person is deemed to have a limitation in that activity.
The wives recounted difficulty around showering and mealtime, challenges getting out of the house to attend social events, and distressful falls around the house.
It was common for the person with Parkinson's to highlight how they're managing Parkinson's and also for the caregiver to highlight how their managing Parkinson's.
I'd wished they talked about the the caregiver's needs more, but I remember now, I'm at a Parkinson's support group.
Towards the end of the meeting, the organizers and some senior members came to welcome my family and me as new members.
They came with gifts. Printouts upon printouts of local resources that can help our family manage my father's Parkinson's.
Things take time. I took the first step. I'm patting myself on the back. Until the third Thursday of next month, I'll be reading my free information, and thinking about how I can get more involved.
It's hard to reach out for help, but it's the caregiver's job to find help. Here's my best foot forward.
