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
This was so touching, Patrick, esp as my brother has MS. The work you do is as valuable as the sentiment involved when someone thanks you. Bless your heart, CATHY
ReplyDeletehttp://journals.aol.com/luddie343/DARETOTHINK/
All very true about the care-giving role, Patrick. While I was reading your entry and got to the gorilla, something clicked and I pulled out my journal of quotations I keep (I love 'em!!). This is what I found: "Sometimes when you're holding a 900 lb. gorilla by the ankle, its best to let him run."
ReplyDeleteYou're a good man, Patrick.
Jackie
You restore my faith in family loyalty. There are still men who can love deeply and loyally and commit that are yet in existence. A rare and fine gentleman you are.
ReplyDeleteNelishia
http://journals.aol.com/nelishianatl/WISHINGANDHOPING/
Love is a force more formidable than any other. It is invisible -- it cannot be seen or measured, yet it is powerful enough to transform you in a moment, and offer you more joy than any material possession could.
ReplyDeleteBarbara DeAngelis
You are awesome!!!bamnfla
http://journals.aol.com/reconcilinglife/reconciling-life/
I'm looking forward to reading the entries as you post them, Patrick. Again, I keep saying you have the makings of a book here with your life experiences.
ReplyDeletebetty
"Ours is a story about life, not death." Amen!
ReplyDeleteI'm with Betty in the comment below mine. I've always thought you were writing a book about this, and the journal was a practice forum, so to speak. I'm looking forward to reading it all. I'm ready for my re-education as well. Bea
Yours is a story of amazing achievements made by all. You, Megan and Patti have achieved things that most of us can only watch in amazement.
ReplyDeleteDeb
I went back and read the earlier entry, the pictures brought back some memories of a similar picture Jack and I had made soon after we married. Your travels have been longer and so much more difficult that ours, I marvel at your "keeping on" ability. I get scared, tired, stressed, and just so depressed and I come to your journal for a shot of "can do"..thanks so much!
ReplyDeleteWhat a beautiful, inspiring journal!
ReplyDeleteYour words touch me and give me strength.
Mary Louise
It's scary how quickly life can metamorphosize. I went back and read your earlier journey and being the one who is chronically ill--I really liked the part about how I didn't choose this.
ReplyDeleteI also applaud you for standing by Patti all these years. Half the time I can't even get a guy to go out to dinner with me once I explain my illness albeit an only hopefully temporary one.
Patrick,
ReplyDeleteI felt flashbacks while reading this. The shock of that initial assault, and the uncertainty, not knowing where it will end -- the uncontrolled deterioration, that feels like freefall -- that was the scariest, the worst time of my life.
Your writing really pops with candor, energy and insight. I look forward to reading all of it.
Abe