Bringing Patti “home” for the Christmas weekend a year ago was a quest, this year I found myself second guessing Christmas at home.
As a caregiver/spouse of nearly 20 years I was still lost last Christmas in the mythology of John Henry vs the Steam Drill Engine, except it was me vs the 3 shifts of staff of a 24/7 care facility.
Talking with Patti as the weekend wrapped up, we shared these thoughts in light of the mantra that "home had to be better". Patti simply reflected, “Why?” … There are times I wonder if it is MS cognitive problems or maybe she just sees clearer than I?
I’ve learned to respect the care and teamwork of 3 shifts of professionals taking care of Patti. Even more important Patti has become somewhat “spoiled” by that level of care. Beyond the human factor are mechanical lifts to help with and improve the safety of caregiving plus facilities are 100% wheelchair accessible.
Home is a one man show, 24 hrs a day. Blessed with the insight of retrospect we should have worked out some hybrid. Perhaps sleeping there and spending all day and evening at home?
Stupidly I pulled a muscle in my arm to kick off our “weekend at home” trying to push Patti’s wheelchair with one arm through a Mall while juggling packages in the other. Without lifts or teams, every remaining caregiving function was affected. Home caregivers have no safety nets.
It was a White Christmas. No snow fall, but plenty of snow cover. Christmas Eve was beautiful and so easy to hear Bing Crosby crooning "White Christmas" from snow piles everywhere.
Attending Christmas Eve church services a hillside community can be a challenge when dealing with a wheelchair. Eventually we had to park blocks away and use the middle of the street as sidewalk curb cuts were blocked by plowed snow that the able bodied could step over. Viewed from the perspective of Patti staying up until midnight (considering her normal bedtime is 7:30 PM) enjoying visiting with her parents and relatives following Christmas Eve services obviously being pushed up and down the streets in the Christmas Eve air was good for her. <grin>
Home caregiving for Patti is intense with a level of disability of 8.25 out of 10 on the Kurtzke Expanded Disability Status Scale (EDSS). 'Activities of daily living' (ADL) or bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are totally dependent activities for Patti. On the Barthel Index of ADL, Patti scores only 2 out of 20. Beyond taking care of her ADL and administering multiple medications several times a day, I had totally forgotten the extent of related laundry and housekeeping chores. Support time seems to never stop and outings often needed to wait for transfer of loads from washer to dryer.
Christmas day intermittent mist fell on snow cover and as temperatures slid I would find myself driving through pockets of thick fog. I often wonder when passing in and out of fog if it isn’t similar to the mental confusion and cerebral symptoms that impair Patti’s thinking when MS flares.
Sleep and bed rest dominates Patti’s MS day. Yet able bodied holiday time tends to be activity driven “go here, go there”, eventually, the ‘best of possible’ times works out for all.
It wasn't a Normal Rockwell or Charles Dickens Christmas but there was laughter and family and too much food and sweets ... (Patti particularly enjoyed the absolute lack of dietary discipline <grin>) and it was "WHITE" and how many times have we dreamed of those.