Tag Archives: caregivers

Caregivers Can’t Control Things

Caregivers can’t control things. We often learn this the hard way. I couldn’t write for a month because of chaos in our household. Now that we’ve overcome recent challenges, I’m grateful that our problems have not been worse.

Caregivers can't control things

We were hit by illness. Our aides had crises in their own families. I had to address economic logjams that made all the other problems harder to solve. When things go wrong, it’s way more difficult to care for a person with #dementia. But as I consider recent events, I realize that we are very, very lucky.

Health Challenges for caregivers

*******  A few weeks ago Mom was in terrible pain. She can’t speak to tell us what’s wrong. To get our attention, she grinds her teeth. It’s excruciating to hear someone grind their teeth for hours. Fortunately, we were able to narrow my mother’s list of possible problems down to  a Urinary Tract Infection (UTI). We are LUCKY to have caring, skilled people around who PAY ATTENTION AND UNDERSTAND my mother’s issues.

******* After we figured out what was wrong, our hospice nurse was able to get the presiding physician to prescribe liquid antibiotics for my mom. This was a tremendous help because it’s so difficult to transport Mom to a doctor. She can’t stand or walk. Getting her into a vehicle is really hard. WE ARE ALSO VERY GRATEFUL THAT MOM HAS #HEALTH_INSURANCE, so the cost of her medicine was low.

Logistical problems that derail care

******* While we were dealing with the UTI problem, our refrigerator failed. The fridge was just seven years old, but it was beyond repair. I had to feed my mother small, frequent meals because the antibiotics gave her stomach problems. When stomach pain began, she started grinding her teeth again! Thank goodness I was able to drive to Lowe’s and buy a fridge during their appliance sale. I thought about the people in Puerto Rico who were left for weeks with no electricity. Can you imagine taking care of a sick person while you have no water to drink, no electricity, and no way to get food? I am THANKFUL, THANKFUL, THANKFUL  that our home is not in a hurricane zone.

******* As we stumbled through the fridge crisis, I had to practically beg one of my clients to pay me for work I did last summer. My check was months overdue and I really needed money to pay for that refrigerator! They agreed to write me a check, but I had to drive 100 miles (each way) to pick it up. One of our helpers promised to be here with my mother while I made the trip. Then after I left he called to say that his son had a health crisis and he couldn’t reach our house before the hospice aide had to leave. When I got this message I was 90 miles from home! We are VERY FORTUNATE to have a kind neighbor. She agreed to stay at the house until I could cash my check and race home. The trip was stressful and I drove too fast. But I know we are lucky to have a neighbor who is willing to help.

caregivers live everywhere

Many caregivers face worse problems than I do while looking after loved ones. Residents in Northern California are losing their homes to relentless fires. #Caregivers in Houston, Miami and San Juan are still trying to put their lives back together after devastating storms. People often tell me that taking care of my mom is an act of heroism. But I know better. We’ve been blessed with a lot of resources that help us survive our most serious problems. Wherever you are, I hope you find ways to overcome your worst #caregiver challenges as you deal with the chaos of life.

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!