Fearing Willard Scott

Caring for a Centenarian?!

Some facts:

• I was my dad’s caregiver for the last ten months of his life.
• I could possibly write a book about the hell of being a caregiver,
• But the bottom line always would be that I would do it again in a flash for a beloved relative.
• I currently have a half dozen friends who are caregivers for loved ones – some for parents and some for spouses,
• And I want to give them a pep talk…
• The bottom line of which is this: You’re doing a great job! Pat yourself on the back, then pat yourself on the back again, and then go have a good cry…
• Because being a caregiver is hell.

During Dad’s demise, I always implored God to just let me know how long I would need to be his caregiver, so I could pace myself. (God was silent on that subject. But hospice nurses seemed to have a clue when we got to that stage.) And I always felt nauseous when I watched the Today Show and heard Willard Scott celebrate the centenarians of the day. Dad was ninety-one. Could we possibly carry on in this fashion for nine more years?

What made the thought of nine more years so hellish? Doctor appointments are top on the list. Each visit spawned two or three new dates on the calendar – a revisit with the current guy, a new test, a visit to some specialist.

And if that wasn’t awful enough, there was the nephrologist who only had office hours once a week and who would tolerate no gaps in his schedule. When you made an appointment with him, you got what was literally the next available appointment whether it fit into your life or not.

And there is the fact that Dad was in pain. Every bump in every road for every car ride had both of us in tears. The pain specialist was useless. She prescribed drugs that literally knocked him off his feet (and sent him to the ER) but did not reach the pain. And for some reason it was not possible to hospitalize him while they adjusted his medications.

In retrospect, it was good to have all these doctors to rail against. In some ways I was mad at Dad for dying – or maybe I was mad at God for allowing it – but having doctors as targets was helpful for me. And beyond that, this annoyance took my mind off the main problem which was watching this beloved man go from Fully-Dad, to Not-Quite-Dad, to Not-Dad-At-All.

It’s odd to sum up this horrific decline so succinctly while the actual living of it was a slow, painful journey. During that time, I felt completely and totally alone. This was in spite of the fact that I had friends and family members to actually help – my daughter took Dad to dental appointments. My ex-husband was in charge of appointments with that useless pain doctor. My son moved home from out of state to help out.

But in spite of this physical help, no one had the right words to reach my emotional pain. And so I started a journal that I called, What My Friend Would Say if I Had a Friend. From March 26, 2010 until Dad’s death in October, I wrote about that pain in fifty-two typewritten pages representing 24,842 words.

I did get lucky during this period in several ways. First, I knew that I loved Dad with all my heart, so any bad feelings about what was going on was about caregiving not about unfinished business between us. And speaking of such, Dad was from an era when people did not say “I love you,” and yet he and I managed to say exactly that to each other in his final months. And the third one I need to explain…

I learned at a Jewish funeral that it is a great mitzvah – good deed – to help bury a loved one, to actually shovel some dirt back into the grave. It’s a mitzvah because it is a “favor” the person can never return. The same is true of caregiving. Dad can’t return the favor – though in his case, he certainly paid the favor forward in all the years of being there for me as my dad. 

At any rate, it is nice to have the validation that this tough, tough task constitutes the ultimate good deed.

I hope that’s comfort for those who are caregivers now. Pat yourself on the back and then pat yourself on the back again. You’re doing a great job and an extremely important job! But a good cry might help.

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Another story I have written on this topic: https://blog.worthy.com/next-act/family/caregiving-is-awful/

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