Tag Archives: caregivers

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!

Caregiving versus Life

I haven’t written a post for weeks because I’ve been engaged in a battle: Caregiving versus life. Most jobs make it difficult to be a home #caregiver for a person with #dementia. I’m a writer so, theoretically, I can work at home and still manage my mother’s care. Unfortunately she now needs more support because her condition has slipped. I got a bunch of new writing assignments from clients at the same time. I’ve had to choose between being a good #caregiver and taking care of my own life.

Caregiving versus Life

Caregiving versus life

Most caregivers fight this battle in one form or another. You can’t accept a dinner invitation because there’s no one to stay with your loved one. You get no time to spend with visitors because some medical crisis needs your attention. We  lose lots of opportunities to connect with people who might offer us support.

We don’t just miss social activities, we also forfeit huge amounts of money.  An article published by the Family Caregiver Alliance estimates that “caregiving reduces paid work hours for middle aged women by about 41 percent.” Caregivers earn less because we work fewer hours, but the losses don’t end there. The article states that if you add lost Social Security benefits to the drop in income, caregivers lose a total of $324,044. The financial estimates in that article are drawn from the MetLife Study of Caregiving Costs to Working Caregivers, which was published in 2011. Those numbers must be much higher by now.

all choices have a cost

Like many caregivers, I’ve had to make hard choices. This spring I chose to do writing that would boost my income. That means I had to sacrifice some of my personal projects (like the posts I write for this site). I also decided to be less involved in some of Mom’s care and let the hospice helpers do more. No matter how you manage things, you’ll pay a cost while caring for someone with dementia. If you prefer, you can hand all the money over to a nursing home and let them do the work. But it’s a very imperfect solution. Residential care is not always reliable and you can lose sanity over that, too.

I’ve always felt that there were benefits to keeping our family together by caring for Mom at home. You cannot reduce those benefits to an economic price tag. Nevertheless, during the month of June I’ve made a promise to myself to stay focused on my work and let the hospice staff take more responsibility. It’s hard to give up some of the small acts of care that I enjoy performing. It is necessary, however, if we’re going to have a stable economic future after Mom leaves.