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Christmas for Caregivers Part III

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.

Christmas for Caregivers Part III

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.

Christmas for Caregivers Part II

Christmas for Caregivers Part II  

As a #caregiver for someone with dementia you face strange challenges all the time. So when our failure to obtain respite care brought me to tears, I tried to remember “impossible” problems we managed to solve in the past. Just two years ago, I was also weeping at Christmas while trying to get Mom home for the holidays.

Christmas for Caregivers Part II

Although my mother lived with me when she was first diagnosed with dementia, I moved her to residential care when she began “wandering“. The first time she left the house, I was blindsided. Mom hated being near water. She had a fear of puddles and storms and was terrified by our leaky kitchen faucet. Yet one Saturday morning I returned from the post office to find her stumbling along the bank of a stream in her nightgown. She was wearing her sneakers on the wrong feet. We were both shocked to run into each other by the creek. I gently asked her to return to the house and she agreed.

I hoped that it was an isolated incident, but a second wandering episode made me panic. My tiny mother ran out of the house one rainy morning while I was upstairs in bed. She charged outside into the muddy driveway wearing little pink bedroom slippers. When I heard the front door slam, I raced down to get her. This time she ran away from me and lost a slipper in the chase. That’s when I decided to move her. It was too dangerous for her to live in a house surrounded by woods and water.

Our Residential Care Experiment

Mom spent a few happy years living in structured settings before her condition began to decline. She developed a wound on her foot and stopped walking. Then she didn’t want to participate in activities. Life no longer appealed to her and Mom’s health drifted downhill. My mother’s doctor told me she was on the borderline for hospice services. I could not bear the idea of my mother passing away far from her family. So I decided to bring her home again. I never dreamed that I’d be challenged on my choice, since I’m her Power of Attorney and have been responsible for her care for many years. But I was wrong.

The nursing administrator at her residence would not allow us to move Mom without a medically approved care plan. (The same administrator also refused to sanction an employee who routinely neglected my mother.) My plan was to bring Mom to our house and hire home health aides to help care for her. But the administrator insisted that the home health company send someone to examine Mom in their facility (four counties away) to ensure they could provide required services. It took weeks to coordinate all the assessments during the busiest time of year. I cried every night thinking I’d never get her home in time for Christmas. On December 22nd, my sister, her friend, my boyfriend, and I moved Mom out of her residential unit. We drove her back to the mountains on a cold windy night to celebrate the holidays at home.

That adventure took place two years ago. Once my mother came home, her will to live returned! And that’s how we arrive at Part III…..