Sharing a home cooked, family dinner of corned beef and cabbage on St Patrick's Day with Patti created among many things time to mull over and wrap this up.
Was it all worth it?
"Circle the wagons" is the American frontier family spirit against all odds or any enemy. Our culture, legend, and lore teach us that is what families should do.
Somewhere along our 15 year journey of home caregiving that 'circle' of wagons became more of a 'black hole' consuming everything both tangible and intangible.
The present was overwhelming and the future was chilling.
Patti's MS progression had created several factors that demanded attention; safety, 24/7 attended custodial care, and isolation. Home care could not satisfactorily resolve these issues.
YES! First and foremost, it was worth it for Patti's safety alone. Patti has fallen only three times in a year since being admitted to a care facility. She fell more than that daily in homecare when unattended while attempting transfers. Safety is not an issue that can be 'partially' resovled. Dangerous accidents happened such as a stove fire, or pulling a 32 inch, couple hundred pound TV down on herself. MS is not an acute fatal disease but many with MS suffer serious injuries or are at risk of worse.
YES! Patti's quality of life has opportunity. Total incontinence of bladder and bowels and inability to participate in activities of daily living such as personal hygenie and changing yourself or dressing is overwhelming and frustrating. She now has sensitive, professional attended help 24 hours a day, 7 days a week.
Isolation is a prision of unimaginable loneliness. All of the above problems plus increasing memory loss and cognitive and reasoning challenges were increasingly isolating Patti. YES! Patti now has the opportunity for daily social contact both structured and informal. Unlike home care, she is not the disabled person in a world of able bodied people but among peers more like her in abilities.
For Patti's care now and especially in the future YES it was worth it! Patti is content and always has been with the transition.
What about Megan and myself? ... Patti has MS, she has never had choice. Caregiving is choice, and choice always has consequences. You can evaluate decisions, but you live with consequences ............. and, also dreams.
"The phoenix hope, can wing through the desert skies, and still defying fortune's spite; revive from ashes and rise."
Miguel de Cervantes
Caregivingly Yours, Patrick Leer