Important Transitions In Managing My Parkinson’s
Changes, good or bad, seem to happen with glacial speed in Parkinson’s. Nothing seems to happen overnight. My symptoms are probably getting worse, but changes may not be noticeable for months.
One transition I do see and feel happening now ... the passage from a care partner to a caregiver relationship.
For those who don’t recognize the terms, "The difference is that of a one- versus a two-way street." Too black or white? Let’s look at this over a time interval. A timeline with care partner on one end and caregiver on the other.1
Starting as care partners
After that alarming day when first diagnosed with Parkinson’s, Judy and I settled into a routine. My symptoms were such that I didn't need much care. A partnership is characterized by mutual cooperation and joint responsibilities. Pretty much how we operated pre-Parkinson’s.
With Parkinson’s progression looming, we adopted the term "care partners" as an excellent description of our status. We intellectually understood Parkinson’s was a progressive disease but viewed the change to caregiver status as way off in the future.
At first, our relationship was heavily weighted towards care partner. My abilities were about the same and my need for help was small.
Moving towards caregiver
My neurologist told me one way to measure progression of Parkinson’s is to look back at yourself a year ago. Look at the changes in diagnosis and the amount of change you’ll see in the coming year will be about the same.
If I take that look over the 8 years since diagnosis, the change is no longer small. Tasks or functions I normally could do independently have become increasingly difficult and the responsibility and relationship with Judy has slowly moved towards caregiver.
For example, I can get my compression stockings on, put my shoes on and tie them. It just might take me an exhausting 45 minutes to an hour with accompanying broken finger nails and the occasional broken or dislocated toes. It’s quicker, more convenient, safer, and, given time constraints, easier for Judy to do it.
Sometimes the actual transition may be quick. I used to do most of the driving. Suddenly, I no longer can safely drive. The transition was quick but my capabilities had decreased over time.
Due to increasing neuropathy and muscle wasting in my hands, I started spilling my pills and was having difficulty opening medication bottles. Judy now manages the physical aspect of my meds.
Modify or lose enough functions and, very slowly, your arrangement with your partner shifts along the care spectrum from care partner to care giver.
A scary future glimpse
A recent lengthy recovery from cervical spine surgery gave me an alarming view of my future. Due to a rigid neck collar and instructions not to move my head when briefly out of the collar, I found myself needing substantial help moving, getting dressed, showering, eating, and shaving. The enforced lack of exercise allowed my Parkinson’s to resume progression.
My recovery period is over but it’s taking time and has been difficult to slow my Parkinson’s progression with extensive physical therapy and ongoing exercise programs.
We have found, given our daily schedules and my increased slowness and coordination issues, life moves faster, is safer, and far more convenient for both of us if Judy continues to have a major role in the accomplishment of my daily tasks of living.
Travel is difficult. Most outdoor activities I used to enjoy are downright unsafe. The list of things I can safely do for myself is shortening. I feel my world contracting.
I hate being dependent! I feel guilty as this wasn’t the situation I anticipated for our "golden" years. I know what I can no longer do is also changing Judy’s world as well.
I am not inviting you all to a pity party. I don’t think my situation is unique in any way. Millions of people are right where I find myself.
I know exactly what I need to do: accentuate the positives in my life, find new activities I can safely do, focus on the positive and move forward.
My problem? Sometimes, it’s just damn hard!
Do you or a loved one use smartphone apps to help with PD management?