How many people go to bed expecting to awake to a different world in the morning? … Now, just hold on to that thought for a couple paragraphs.
Back in the Spring, I started talking about my recipe for “gumbo metaphysics” that I’ve learned through 20 years of “living with MS in our family” as the spouse caregiver in Gumbo Metaphysics Part 1.
That first stage of “accepting” caregiver status mainly was about “defending” my family. I thought like a defender.
That mindset was not going to work for the second and far longer stage of caregiving.
Plus the onset of Patti’s disabling MS symptoms were so dramatic and severe that all traditional family “roles” where immediately swept into a maelstrom.
How dramatic? - Overnight! … and that brings us back to my opening question.
With a flair for the macabre, MS chose Thanksgiving morning 1989 for this transformation of our family.
I know this may sound like a plot you’ve heard before, especially if you’ve read Kafka’s “Metamorphosis”. Except that works of fiction can be put down and read at your convenience.
Unlike fiction, I could not simply “put down” the reality of our then 18 month old daughter and Patti who had awoke unable to walk, see, or even talk. … We went to bed an able bodied family.
Yes, we too had heard that MS is ‘not supposed’ to be like this. … Rule #1 - Multiple Sclerosis is the proverbial 800 lb gorilla and does whatever it wants.
Whatever I thought life was about needed to evolve immediately. In our story parenting ‘competed’ with caregiving for my attention that morning and every morning in the years to come.
I needed to ‘think’ differently and fast. The other option was to run, and that certainly crossed my mind.
The US Surgeon General’s Office tells us that the average length of time spent on home caregiving is 8 years. This dual stage of single parenting and home caregiving lasted almost 15 years before the 24/7 care facility era began.
In a series of entries to follow I plan to try and share my “re-education”, through such topic thumbnails as parenting, faith, homecare, economics and our eventual need for a 24/7 care facility.
Ours is a story about life, not death. Caregiving for a progressive chronic illness such as MS is not the same as the palliative care of a terminal illness. Our story is about one family trying to “live with” MS.
(to be continued)
"To cure sometimes, but to comfort always"
Dame Cicely Saunders