Progression drives caregiving and that frustrates the hell out of me. Multiple Sclerosis’ unpredictability has thwarted most of my attempts to anticipate it. “Psychic caregiving” might work, but I’m not that gifted.
An enigma of caregiving is that I’m locked in a fight I know I cannot win, while progression constantly ups the ante.
“Keeping Patti at home” was such simple sloganeering in the early years. Remodeling regularly to adapt to physical progression, and just raising the bar on my limits of endurance stayed the course for the first 7 years.
Progression to the double whammy of bowel and bladder incontinence and “dementia like” symptoms was the turning point. Our daughter and her friends returning from elementary school each day were encountering too much for kids that age to have to cope with. Patti’s cognitive symptoms prevented her from directing her own care and basically made part time homecare helpers impossible to incorporate into daily living.
Somehow for another 8 years, basically on my own, I still managed Patti’s care and the environment to keep the house a home. Progression however kept increasing “at risk” situations for Patti. It was more than scary when Patti started a fire on the kitchen stove while unattended. Catheters were experimented with but Patti would get confused and pull them out. Our new “physically” accessible home boomeranged on us as cerebral symptoms rapidly progressed. Falls actually increased, and Patti was pulling things down on herself. She was getting outside confused and disoriented.
Time was my kryptonite and after 15 years of “keeping Patti at home” Patti and I jointly explored and decided on the transition to the 24/7 care facility era. Patti has never expressed a doubt about the decision.
Nor have the nearly 3 yrs of the 24/7 care facility era been an end. ‘Hands on’ caregiving continues to occupy at least 40 hrs a week. The majority of afternoons/evenings each week I bring Patti home or out before transferring and ‘tucking’ her in to bed by myself at her care facility. This phase has been about evolution to professional team care and most importantly safer care.
Progression is the only constant in caregiving. It relentlessly crushes home caregiver motivation, inspiration, or whatever. I can not ‘sugar coat’ that reality. … On the other hand, if you can appreciate the esoteric reward from finishing your morning coffee then running full speed into an ever higher brick wall day after day, year after year, you will do fine. It can be done.
('series' to be continued ...)