Tag Archives: caregivers

Bearing Witness as a Caregiver

Bearing witness as a caregiver can be painful. As the new year begins, and my role in Mom’s care continues to shift, I’m paying careful attention to changes in her condition. Unfortunately, most changes are signs of decline. When I was the primary caregiver, I had too many responsibilities and no time to think. Though I have more time for reflection now, my thoughts are steeped in sadness.

Bearing Witness as a Caregiver

My mother’s shift to full-time, skilled nursing care coincided with the end of the year. During most years, I use these dark winter months to consider where life has brought me and decide where I want to end up next December. Usually I go to a book store and leaf through a dozen magazines in search of inspiration. Then I buy a few and cut out pictures to make a vision board. Last year’s board is sitting upstairs with the pictures falling off. I never really completed it because I was always too busy. Even though I have more time now, I’m not as motivated to do a board for 2018. Grief is catching up with me.

When you’re a day-to-day #caregiver, your tears have no path to the surface. You can’t cry while lifting a sick person. You can’t weep while feeding them. Maybe you can sniffle in the grocery store, but your face better be dry before you walk into the cold night air. I can cry in the car at times, but that never lasts long. Grief gets interrupted when someone cuts you off on the highway.

A dozen professionals now deliver my mother’s care. With more moments for reflection, I notice that her ten year fight with #dementia is like a filmed auto accident stretched out by special effects to last a decade. Unlike a movie on DVD, you can’t hit the stop button to avoid watching the accident. And it’s impossible to push fast forward to eliminate years of suspense. Dementia just plods along, stealing things you love until it finally takes possession of everything.

Bearing Witness as a Caregiver

Though we may be tempted to turn away, bearing witness might be our most important act at the end of the disease. Even if someone else takes on the daily toil of cleaning and feeding our loved ones, we remain powerful advocates because we know them so well. The most informed doctor can’t decipher what a double blink means once speech disappears. A nurse can’t know when grinding teeth signify, “Blankets, please!”

It’s difficult to accept Mom’s decline and know I can’t do anything to stop it. But I want — no, I need — to be brave and watch with care. Time can move fast or slow, but it’s always passing and I can’t afford to miss a thing in 2018.

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.