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.

The Daily Reality of Caregiving

The daily reality of caregiving can be monotonous. Tasks don’t change. Pressure doesn’t cease. Then a sudden event like a holiday, an illness, or a weather crisis throws us for a loop. Labor Day made last week difficult for me.  Yet I wonder and worry about caregivers in the hurricane states.

the daily reality of caregiving

A little Extra Stress on Holidays

When there’s a holiday on the calendar, it usually means I do more work instead of less. Last week was no exception. I had a deadline for an important writing project. To finish on time, I had to write over the weekend even while I had family visiting. When people visit, I have to cook and clean more. Plus we just painted the ceiling in the front of the house. I wanted to improve the space before the cold weather arrives. That meant moving furniture and getting rid of junk. I felt like I was working every single minute.

My sister helped with my mom, so that did free up some of my time. But I find that my role as #caregiver never diminishes. I must literally leave the room to restrain myself from doing tasks I normally carry out alone. The #caregiver sense of responsibility is relentless.

A long bike ride was my one holiday treat. We live about 10 miles from the #D&L trail which runs along the Lehigh River. It’s a 22 mile path following the old canal and rail lines that carried anthracite coal across the state. I wish I could take more bike rides but, as a #caregiver, I can’t be away from the house too long. Having another family member at home gave me some liberty to take care of my own health.

Grateful to be safe

As I complained to myself about toiling during the holiday, I watched the news of Hurricane Harvey. The sight of the flood waters and splintered houses made me see how much I have to be thankful for. Old friends of mine who live in Houston were lucky they didn’t have home damage. But they were surrounded by many people who lost everything. I saw photos and stories about children and pets, immigrants and refineries. No news of caregivers crossed my screen. How does a #dementia caregiver cope in a storm like #Hurricane Harvey? Our country has a limited support system for us in normal times. What happens to people with #dementia during a crisis of that magnitude?

These are times to be grateful for whatever peace and support we have in our chaotic lives. If you are a dementia caregiver living in the area affected by the hurricane, please send a comment. If there’s a way we can help from afar, let us know. Labor Day will now mean something new for people in the communities destroyed by these hurricanes. For most of us, dementia changed our definition of ‘labor’ a long time ago.