Monday, November 26, 2012

What is your caregiving 'prime directive'?

Any Trekkies out there? Any ‘normals’ remember the Prime Directive, Starfleet’s General Order #1? (Trivia answer at the end)

The point here is that as spousal and/or family caregivers we each have our own Prime Directive ... and as National Caregivers Month 2012 comes to a close, why not share?

Mine has always been, is and I suspect always will be Patti’s ‘safety’.

Thanksgiving eve 1989
Our story began so dramatically with Patti awakening on Thanksgiving morning 1989 suddenly unable to walk and barely about to see and talk with her first major Multiple Sclerosis exacerbation that I was baptized by fire into the world of caregiving and medical advocacy … while somehow juggling our 18 month old daughter in my arms.

Yes, Thanksgiving Day is a “tradition” for others but for me it’s become more like a minefield of challenges to my prime directive of Patti’s safety.
  • ·      MS related dysphagia smothered in abundant food demands 200% of my attention, feeding Patti, monitoring, and verbal cueing to prevent choking while the discordant symphony of a large family dinner plays on.
  • ·      Transferring and travel is always like spitting into the wind, do it on Thanksgiving Day and well you just up the ante. Should something go wrong able bodied people can just walk away, this is not an option for a non-ambulatory woman in a wheelchair inside a wheelchair accessible van requiring a ramp to exit and enter.
  • ·      While guests use a restroom for us it’s more like a mutated Turkey Day “beat the clock” game. From the time I pick her up until we return it’s a gamble on incontinence. Patti’s only option would be me physically transferring her to and from a bed and changing her.
Bottom line – did Patti enjoy the time? ‘In the now’, yes!

Though MS related dementia erases each holiday moment as it happens, more like an etch-a-sketch Thanksgiving. Driving away when Patti cannot tell me what we just did, it does make me wonder about the equation of risk vs reward.

And for the first time in 23 years facing my own health issues, a lung cancer diagnosis, I realize I may not be able to be the linchpin in future caregiving equations and wondering what is more important traditions or prime directives?

Patrick Leer
Caregivingly Yours, MS Caregiver @
My Lung Cancer Odyssey @ 

P.S. As promised for trivia buffs -  the Prime Directive dictates that there can be no interference with the internal development of alien civilizations. … Ooops, those original Pilgrims must have missed the memo from Starfleet. 


  1. For us, with my mother suffering from dementia, it was a difficult decision when we opted to have her remain at the nursing home for holidays. As you said, safety is the primary concern. If we moved my mother either to our home or a restaurant, the move was always fraught with hidden dangers -- trying to get her coat on or off could result in a fall, moving into a house required many hands on board, and the diet had to be watched closely as well. Now, we visit during her main meal on holidays, feed her, wish her a happy day, and leave. She doesn't know it's a holiday and forgets it quickly. It's a difficult decision, but I think our choice was safer. I admire all you do for Patti, and I sympathize so much.


  2. Thanks Muff yep it's about surviving that bugaboo 'tradition'

  3. Patrick - I hadn't thought about my caregiving role in such a way -- what is my "prime directive" in caring for Skip? After mulling this one for a few minutes, I think I'd say maintaining quality of life is the top priority. Thanks for this post ... if I can keep this in mind, maybe it'll keep down my crankiness. :-)

    1. Hi Cranky! Excellent point about quality of life. I am always in that what came first quandary over the egg or the chicken when it comes to quality of life and safety.

  4. Công ty chúng tôi chuyên cung cấp các sản phẩm do go trang tri noi that trong nhà như mau noi that phong khach dep, mau noi that nha bep dep, mau noi that phong ngu depmau noi that van phong dep với giá cả phải chăng và chất lượng đảm bảo. Ngoài ra để hoàn thiện hơn cho vẻ đẹp của ngôi nhà mình bạn cũng có thể tìm đến sat my thuat, san pham gia cong sat, gia cong inox để trang trí cho ngôi nhà thêm sang trọng và ấn tượng. Còn nếu quý khách có nhu cầu về su kien quang cao thì dòng sản phẩm logo, bang hieu ,poster, gian hang hoi cho, cong chao su kien..cung sẽ sẵn sàng đáp ứng nhu cầu của quý khách bất cứ lúc nào


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