Tag Archives: caregiver stories

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…..

For Caregivers on Mother’s Day

For caregivers on Mother’s Day: Is role reversal is part of your life? My relationship with my mom has flipped around many times. Last year on Mother’s Day, I felt like we were on the Titanic ready to capsize. Mom was weak, then strong, then frail again. But she’s lived to see another Mother’s Day. Wow!

For caregivers on Mother's Day

The two of us have taken a beating as her dementia has progressed. If I didn’t remind Mom about her daughters, she might not know that she had any. One of my shoulders has been dislocated several times and my back feels like it belongs to an old lady. (Maybe I’ve become one!) Mom can’t talk or walk and she can barely stand up even with two people supporting her. But she ate the Mother’s Day brunch I cooked for her and still savored the taste of her favorite foods. Despite her lack of language she managed to express her pleasure through laughter and the smile that never quits.

I’m so happy that we had the chance to do this again. Some days are so hard for her. She gets weird electric shocks that frighten her and scare me, too. When it’s rainy, she seems to sleep through everything but meal time. On many occasions, I could have sworn that we were sharing our last dinner together. Then she somehow finds the strength to revive and I think, “All right, the seas are calm. This voyage will continue.”

It is probably easier to pick a Kentucky Derby winner than it is to predict the course of dementia. We’ve been given time estimates, symptom warnings and lots of family education to help us get through this long process. The only thing that really stays consistent is the deep love we feel for my mom. I used to think that love was mysterious and fragile. But as we celebrate one more miraculous Mother’s Day, I see that love is tough and durable. It is more reliable than a diagnosis and more potent than medicine. It’s a bewildering experience to serve as the caregiver for a parent. When it feels too confusing, love is the only true compass.