Category Archives: Uncategorized

Part IV Christmas for Caregivers

Part IV Christmas for Caregivers may surprise you by appearing in mid-January. But if you’re a #caregiver, I don’t need to explain. Our endless stream of duties (doctors’ visits, insurance claims, meal prep, pharmacy…) turns each day into an endless to-do list. Throw in tree trimming and gift wrapping and it suddenly feels like December might kill you.

Part IV Christmas for Caregivers

For me that feeling was becoming too real. My shoulder had been injured more times than I could count and my back was aching. I knew I couldn’t make it through the holidays unless I took some kind of break. Mom’s aides could see that exhaustion wearing me down. More than once they heard me say that I might have to move my mother to skilled nursing because I just couldn’t manage anymore. They worried for me, for Mom, for the future.

My support team is an odd mix of single moms, retirees, teenagers, ex-nursing home aides, a sister, and some friends. They are very loyal to my mother who can still charm people without being able to speak. Some have been helping out for more than a year, a few have been with us longer. I didn’t know they were having a private discussion about my situation until the day I returned in tears from a second nursing home visit. Two of them were standing in the kitchen waiting to learn if I found a site for respite care.

“It’s not gonna work,” I told them, “That facility specializes in diabetes care and they were not prepared to provide advanced dementia care. No place is going to take her because she needs two people for every transfer from her chair.”

I was ready to accept our sad fate which would probably include another move for my mother. This time to a skilled nursing home.

Part IV Christmas for Caregivers, the Real Gift

One of our aides stopped me before I could say one more thing.

“We have it figured out,” she said, “You can take your vacation.”

“What do you mean?” I asked, “There’s no place for Mom to go while I’m gone.”

“No,” the aide told me, “There are enough of us here to cover for a week without you. We just need someone to be you.”

I still didn’t get it, “What do you mean? How could someone be me?”

She laughed, “One person has to stay here every night, like you always do. The rest of us will just come in and help at our regular times to give the night person a break. That way your mom can can keep the same routine, with people she already knows, and you can take a real vacation.”

I considered this for a moment and realized that we might actually be able to work it out. Of course I would pay the person who took over my duties and stayed overnight, but that wouldn’t cost more than respite care. With this arrangement I wouldn’t spend my whole vacation worrying because I already trusted the people involved.

It took a few hours of strategizing to create a schedule for everyone. Once I did it, I felt tremendous relief. For the first time in years, I started looking online for cheap airfares and hotels. I decided to go back to Santa Fe, New Mexico, a place full of creative traditions that always revive me.

The people who help my mom every day gave me the best gift anyone could possibly offer a #caregiver — real rest. In my vacation week I read a great book (The Round House, by Louise Erdrich) from start to finish. The Santa Fe Film Festival was underway so I saw a few movies. I got therapy for my back and shoulder. By the time I got home, I felt like my old self — the person I was before #dementia struck my mom.

Mom is still content in her chair.  We have no idea how long she’ll be here, but I’m so grateful that our support team helped me get a second wind. For right now, that’s enough.

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.