This post may be of interest to both caregivers and care recipients.
A few of us had the pleasure in 2007 to see Lonnie Ali speak at The Parkinson’s Institute about the role of a caregiver. She didn’t sugar-coat any aspect of being a caregiver, and knew that the resources she has don’t compare to the resources most of us have.
After her talk, I was told that the word on the street is that Muhammed Ali has one of the atypical parkinsonism disorders. Given how long he has lived, I’m not so sure that’s the case.
AARP publications (the magazine or bulletin) have a Lonnie Ali and caregiving article every other year or so. You can find this year’s contribution in the June 2014 AARP Bulletin. Here are two key excerpts:
- “The hardest part for any caregiver, whether it is a child, parent or spouse, is the relationship change,” Lonnie says. “The relationship changes over time with the illness. Physically, [patients] are not as mobile; they are not able to do things with you like they used to. The medications might affect their cognitive ability. They may not be able to speak as well. … That is where you [transition] from a wife or a husband to a care partner or caregiver.”
- The biggest potential danger, Lonnie cautions, is that caregivers “must guard against becoming bitter because you feel like your life is being robbed from you. And to not let the person you are caring for become bitter in the sense that they feel guilty — ‘I am robbing you of your life.’ … That just makes [the] depression even worse,” she says. “To be honest, I can deal with Parkinson’s all day. Depression is scary. It affects everyone differently. Trying to get past that slippery slope, and getting them out of that hole, is not easy.”
And you can read the full article here:
aarp.org/home-family/caregiving/info-2014/caregiving-muhammad-lonnie-ali-parkinsons.html
Caring for The Greatest, Muhammad Ali
Boxing champion’s caregiving wife, Lonnie, shows what it means to go
the distance with Parkinson’s disease
AARP Bulletin
by Jon Saraceno
June 2014
Robin