About 15 years ago, I was semiretired and looking for something to do. My good friend, who had recently been diagnosed with Parkinson’s disease, was in need of some part-time assistance, and I offered my services. It was a great match!
At first, the caregiving was primarily minor help with simple household chores a couple of days a week — driving to appointments, running errands, etc. Soon, more administrative assistance with paperwork, filing, and financial tasks was needed.
It is well known that Parkinson’s is a progressive disease which can take on many different forms and is cruel in its debilitation. As the years went by, more and more actual personal caregiving (bathing, dressing, and such) became necessary, culminating in eventual 24-hour care by myself and a team of caregivers.
On a personal level, the situation became increasingly intense and physically demanding. Also, due to the close personal contact with someone who was and became even more of a dear friend, the emotional aspect was very deep. The feeling of helplessness when faced with this unrelenting disease was overwhelming — for both of us.
I was so very fortunate to have had the loving, learning, long-term, close friendship with such a brave warrior who fought a courageous battle against a formidable foe.
It was never my intent, or even a thought, and certainly not my plan, to be a personal caregiver but sometimes our lives take unexpected detours. What an honor it was to care for my dear friend. I miss her and will always be grateful for the time we shared together.
What I learned:
• The hardest thing to manage is keeping all of the 24/7 shifts covered with caregivers who are not only qualified, but also a good match for the client. This is not an easy task. If at all possible, have a caregiver resource to call on for “in case of emergency” backup — things happen when humans are involved.
• Do have a respite plan for yourself. Physical and emotional burnout is real. You cannot take care of anyone else if you aren’t taking care of yourself first. The Superwoman/Superman roles are already taken.
• Try to enjoy the dear person/client with whom you are spending time. Be patient. No one wants to lose their dignity and independence. Remember, they had full lives and experiences before illness and have great stories to share.
Caregiving has been, and still is, a truly spiritual journey for me. The opportunity of sharing the personal involvement of caring for someone can only be classified as a spiritual experience and a true blessing.
— Sharron Akin
P.S. We all need help.
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