What are the effects of caregiver burnout?
According to the 2022 Spring Edition of Helix,
“Caring for a person…can take great emotional and physical effort. In fact, studies show more than 50% of caregivers go through times of feeling overwhelmed or burned out. These are normal responses and do not mean you love the person any less.
The effects of burnout are similar to being depressed. These are common:
· Hard time making decisions and solving problems
· Sleep Problems
· Trouble concentrating
It is important to know about caregiver burnout so you can recognize signs. Let yourself grieve—cry, feel numb, be angry. Feel however you are feeling. Remember to ask for help when you need it. Learn more or make an appointment with a patient and family support” professional at your local hospital.
“The Daily Dozen for Caregivers
When you take care of your own wellbeing, you can give better care to your loved one. Ask yourself these 12 things each day.
1. Have I moved or exercised for at least 10 minutes?
2. Have I eaten enough nutritious food?
3. Have I taken a bath or shower?
4. Have I slept at least 5 hours in a reasonably comfortable bed or taken a restorative nap?
5. Have I talked to at least one adult about how I am doing and not just about my loved one?
6. Have I laughed?
7. Have I spent at least 10 minutes in medication, prayer, or quiet thought?
8. Have I set and met a few practical goals such as doing the dishes or walking the dog?
9. Have I looked or been outside or had some exposure to sunshine?
10. Have I had positive physical contact with my loved one not related to caregiving such as hugging or holding hands?
11. Have I let others help me?
12. Have I named one good thing that has happened or been grateful for something in my day that is going okay?”
Speaking of naming something that you are grateful for, this is the month for Thanksgiving. Thanksgiving has looked different over the years for our Myotonic Dystrophy (DM) family.
When our family was young and had less DM symptoms our Thanksgiving was fairly traditional. Our second child and only daughter, Andrea was born the Sunday before Thanksgiving so her birthday often falls on Thanksgiving. For her 3rd birthday we traveled to St. George, UT and stayed in a Marriott and had an elaborate feast at the Marriott restaurant. We felt very classy. Andrea’s best present on that Thanksgiving was a rainbow colored My Little Pony. She was so excited and such a cutie.
We took turns spending Thanksgiving with both sides of the family or traveling to our favorite vacation spot (Lava Hot Springs, ID) and stopping on the way for Thanksgiving dinner at a fancy restaurant – Maddox. Lava Hot Springs is a tiny little town with a few eclectic stores that we would wander through. It is also very cold. The outdoor hot tubs create a setting where we all visit with grandma and grandpa for lengthy periods of time in the cold while being toasty warm sitting in the natural hot springs. We would eat Thanksgiving leftovers for most of the weekend. We went to Lava Hot Springs for many years with my parents and it is a fond memory for everyone.
When our family got older and showed more symptoms of DM we ended up being more and more withdrawn from extended family. It was a lot of work to take our exhausted family to other’s homes and I didn’t have the energy to entertain extended family.
As Michael and Kent’s disease progressed we also had to adapt the food since raw vegetables and salads were potential choking issues. Michael had had several episodes of aspiration pneumonia due to aspirating food into his lungs, like salad. Most traditional Thanksgiving foods are DM friendly, like mashed potatoes, green bean casserole, yams and pie. We would just leave out the raw items or make sure that Michael and Kent didn’t help themselves to the risky items.
Part of my job every day, including Thanksgiving, was to wake Warren which was a lengthy process and interrupted my meal preparations. If I didn’t wake Warren he would sleep through Thanksgiving and never make it over to our house. All of the preparation for the meal fell on me since Michael and Chad were either asleep or exhausted on the couch and Kent was doing his own thing. Kent would help if I asked him to but due to his damaged executive function he couldn’t plan and carry through with a task. I would have to manage him step by step throughout the task and usually it was easier to just do it myself.
After Warren and Andrea moved out on their own we (of course) invited them over. When it was our turn to have them over, and not the in-laws turn, their efforts at bringing part of the meal was limited. One issue was that they were always sleeping and we were lucky if they got up in time to arrive at the dinner. Second, if they brought something they would sometimes need to prepare it at my house because they hadn't gotten up in time to prepare it. This, of course, added to the chaos of my routine for preparation.
To make things simpler I was eventually able to talk Kent into going out to a restaurant. Kent resisted this because he likes his routine and doesn’t realize the extent of what I have to do to prepare the Thanksgiving meal. Many Thanksgivings we enjoyed Bucca di Beppo because it was family style and you could make reservations (preventing a lengthy time waiting in line). Due to the limited income of our children it had to be our treat, which we could afford so that worked out well.
Now Warren and Andrea have their own relationships and no longer spend Thanksgiving with us. When I was at Costco this year I saw roast turkey breast with sausage and cornbread stuffing and a cranberry glaze. Wow, everything in one package. I purchased it and Costco’s turkey gravy. The day before I will buy a pie. Now the only preparation that I have to do is mashed potatoes. Our Thanksgiving dinner has shrunk to Kent, me, Michael, and Chad. We are the highlight of Michael and Chad’s week and they are also the highlight of our week. It has become a simple day. After we eat we will play cards and watch a movie
Over the years I knew that Thanksgiving was a lot of work. For everyone that cooks Thanksgiving dinner it is a lot of work. But ours seemed exceptionally difficult. It is only in hindsight that I can look at the difficulties that DM has created for our national holiday. We adapted the best that we could but when we were going through the years of this annual holiday it was hard to figure out why we resisted going to extended family dinners or why we resisted having extended family over. It felt personal and I assumed that we were non-conformists. But now I realize that our family’s limitations have created a need to distance ourselves. Now that I am older and have a greater understanding of our limitations I could possibly have done it different. But I didn’t have the wisdom or the words to explain it when our family was younger.