Christmas for Caregivers Part III
Life is full of mysteries, but #dementia is far more mysterious than most life events. The disease can arrive with no warning and change in unbelievable ways. Since you can’t predict how long dementia patients will live, most #caregivers face an uncertain future. My mom’s case took some strange turns but not all of them were bad.
If a teenager changed the way my mother did, you might call it a growth spurt. Mom advanced from a state of decline to become a happy, laughing patient who outlived most of her comrades in residential care. After losing interest in life, the help of family members and home health aides revived her.
An Amazing Boost From Home Care
After we brought her home on that cold winter night, we began lifting her out of her chair each day to help her learn to walk again. We took her to a hyperbaric wound center where they treated the sore on her foot. Over time she managed to make it from the dining table to the kitchen using our shoulders as crutches. In a few months she could walk all the way to her bedroom with our help. When we put our arms around her she seemed to remember her teenage love of dancing, if only for a few moments.
For a year Mom went to an Adult Day Care program where her skills improved — at first. We became attached to some of the drivers who ferried her back and forth on the elder transport bus. One of her “sweethearts” rang the old ranch bell outside our house every time he arrived, just so she’d know he was there. On cold winter mornings the drivers sometimes raced into our kitchen for a quick coffee before their next pick up. Then, after a year of forming bonds with everyone involved with her care, Mom began to decline again. Last December the Day Program sent her back to me. I baked a farewell gingerbread cake and drank one last coffee with the guys who helped us out for so long.
A New Arrangement, Again
Last year at this time I recruited helpers from among our friends and neighbors. I needed a rotating crew of aides to help me keep working. During the past year we got assistance from people of all ages: a Girl Scout, her teenage sister, one feisty senior citizen, a former business man from New York, and a tough mom from Long Island. A good friend agreed to pitch in three days a week and an angel neighbor cooked countless meals for my tiny, hungry mother.
Despite everyone’s best efforts, Mom is losing the vigor she regained. Now she has no hang time when we dress her. We have to work like a professional pit crew, racing to pull up her trousers before she sinks. Even in this weakened state, she continues to exert a certain magic with people. It could be her laughter or her bright eyes (which are now more closed than open). She’s held onto a desire to keep living even after losing sight, speech, mobility and coordination.
And What Happens to the #Caregiver
As the disease changes, care has to change. So if you provide the care, then you have to change, too. In November of this year, I felt I had hit my limit. My joints ached and instead of looking sparkly, Christmas just resembled one long list of chores. I could see no way to sustain my health and sanity without finding some respite care for Mom. Our helpers watched me cry after returning from another facility that wouldn’t take her, even for a week. That’s when they told me they had figured out a way to give me the break I needed. Next week’s final segment explains why Christmas for Caregivers deserves a Part IV.