Tag Archives: caregiver respite

How I spent my Caregiver Respite

This is the story of how I spent my Caregiver Respite. I had five glorious days with no one to lift, wash, or feed. The van picked my mother up last Sunday and brought her back on Thursday. The days between felt like an extravagant gift.

How I spent my Caregiver Respite

My first stop was the porch. Our house lies between a pond and the woods. It has a long covered porch that faces the forest. In good weather months, this space becomes my dining room, office, and library. When my mother’s van departed, I sat outside to absorb the summer breeze.

First I read a glossy magazine, then I did some client work. Finally I just sat staring at the trees until I got annoyed by a chipmunk racing past my chair. When I stood up to scold the chipmunk, I noticed a long thin snake scurrying under the picnic table. We haven’t had a snake on the porch in years — and I haven’t had real privacy at my home in years. So I stood on a bench and yelled at the snake AND the chipmunk. Then I went in the house and left them alone.

Although I didn’t want to be indoors on a beautiful day, it was nice to sit in a rocker and enjoy the silence. My mother has been living here for a long time. She’s needed nearly constant help from aides or volunteers for the last 1.5 years. The experience of being in a completely empty house was almost as soothing as time in church. Peace came over me like much needed balm for my soul. I savored a few minutes of quiet and went back to my work.

That night I was able to have dinner with my sweetheart and stay over at his house. This is rarely possible because my mother requires overnight help. He usually has to come to our house. The gift of a night without babysitters pumped oxygen into our relationship. Time, however, ticked on.

I had to complete a 65-page project for a client. The basic outline was complete before my mother left, but I had lots of research and editing to do. Although I did not want to spend precious #respite time working, I had to finish the project before I could do anything fun. I worked Monday night, then all day Tuesday and late into Tuesday night. Wednesday morning I got up and drove to Times Square with a good friend who helps care for my mom.

We went to participate in Mind Over Madness, an annual celebration of the Summer Solstice in New York City. During this event, Times Square traffic is suspended and thousands of people practice yoga together on some of the nation’s busiest streets.

How I spend my caregiver respite

#SolsticeTSq #MindOverMadness

It’s hard to explain how much fun this is, or the energy you feel from doing downward dogs with people from all over the world. It’s the exact opposite of the typical bustling New York situation, so it feels like you’re creating a powerful antidote to the world’s stress. When you finish a yoga session and lie down on your mat, you can look up at the skyscrapers and see the blue sky between them.

#MindOverMadness

View while enjoying #SolsticeTSq

Once we finished our session in the middle of the city, we were famished and thirsty. We headed to Greenwich Village, where the city’s pace is a bit less hectic. Our lunch went down fast and easy. We drank an entire bottle of club soda after working our muscles in the heat.

Last year my #caregiver responsibilities kept me from traveling to New York so I wanted to make the most of this trip. We drove to visit a friend in Queens who has two little boys. Children grow and change so fast. If you don’t see them for a year, you miss a lot. It was sweet to read with them and observe how much they’ve learned since my last visit. When we left my friend’s house we returned to the city and spent a night in a hotel that had wonderful beds. I slept ten hours without interruption. TEN HOURS!

Why caregivers need and deserve respite

#Caregivers give up so many things, often without realizing it. We sacrifice sleep, nutrition, time with friends, and time with other loved ones. Our energy can drain down to the barest minimum if we don’t plug into some powerful restorative resource. On my last day of caregiver respite I felt like my real self for the first time in ages. I’m not saying these things to make you feel bad about your own situation or invite jealousy. I’m writing to encourage you to use any means available to get respite for yourself during this long journey of care.

Ideas for getting your #caregiver respite

Persuade a friend or relative to step in for you — if only for one night. Try to get hospice services, even if your loved one is not yet in dire straits. I resisted asking for this for too long. Nursing homes would not give us respite care because Mom is too fragile. But #hospice groups have contracts with many facilities and they cannot refuse. There are many hospice providers and Medicare pays for these services. Read agency evaluations online before you sign any care agreements. Or use any resource you can think of to get support: the long lost cousin, the generous friend. Try your best to get help for yourself while you’re caring for others. There is no substitute for self care and nothing nourishes the soul like a night of tranquil sleep.

What I did during my caregiver respite brought life energy back to me. Oddly enough, sleeping might have been the best part of my break!

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.