Spouse caregiver is never an exemption from the lives of others, whether parent, sibling, grandparent, aunt, uncle, or friend.
Even the label ‘spouse’ caregiver confounds. Why is caring any more about gender and marital status than it is about race or creed? If “blood is thicker than water”, then wouldn’t that make spouse caregiver ‘the weakest link’?
Seemingly infinite variables of those in need and those who give care fragment us into an abstract to those looking in. Finding a composite of a ‘spouse caregiver’ would be like the man below seeing a 'face' in the painting.
Perhaps intuitively, who knows? We caregivers somehow convert that abstract canvas into a collage of life.
In our story, I simply made it up as I went along. It has been a 19 year see-saw ride. Patti’s Multiple Sclerosis progression brought increasing dependence while raising our daughter as basically a single parent from 18 months to adult was about teaching independence.
We had to raise a daughter not only in a family living with a parent's progressive MS but also to live in the able bodied world. We carved out time to experience things WITH Mom and also carved out time to experience more able bodied adventures WITHOUT Mom.
One such able bodied tradition through the years has been hiking in Shenandoah National Park. I consider myself blessed that our now 21 yr old would still put up with Dad, and his antics, on a nostalgic respite overnighter in the mountains.
http://www.youtube.com/watch?v=vI3kHXYF838
So what is this entry actually about? Or am I simply rambling? IMHO (in my humble opinion) “spouse” caregiver may be best explained by the Danish philosopher Søren Kierkegaard, “Once you label me you negate me.”
Caregivingly Yours, Patrick Leerweb site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...
wow, Megan is 21! they do grow up don't they? you did great with her! (both of you because Patti had her own influence). You did the best (and over the best) with what you had to work with Patrick; and you did it with humor and grace!
ReplyDeletebetty
Excellent post and I agree with Søren Kierkegaard. The camping looked like so much fun and I know Megan will cherish those memories.
ReplyDeleteReally enjoyed the video, Patrick. Thanks for sharing it!
ReplyDeleteI can totally relate to this post, Patrick. Boy can I relate. To be both caregiver and spouse is such a balancing act. I even hate at times to say I am John's caregiver -- When someone asks if I am "his caregiver," I want to stomp my feet and yell, "No!, I am his spouse!" I don't want to be a caregiver / spouse. It feels like such an oxymoron. Please, people, don't label me! I'm just Krissy, he's just John, and we're just trying to survive and even thrive. Don't label us! Thank you for a great post!
ReplyDeletekrissy knox :)
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We used to consider adopting...glad we never did it, both of us are DUAL caregivers/spouse for each other now, after 30 years we are both disabled with progressive illnesses. I couldn't put that on a child. Meredith Vierra and her husband w/MS have great kids who grew up w/Dad's and grandpa's MS, this enriched their lives. You are a good dad, spouse and caregiver---that which limits you also frees those around you. IMHO
ReplyDeleteHello Patrick,
ReplyDeleteThanks for visiting my blog. Feel free to drop by my blog anytime. I am enjoying my John Sanford book "Dark Of The Moon" it is a very very good and interesting book. Do take care and come back anytime.