With COVID-19 Recovery, My Household Learned While Adjusting
Caregiving lessons supplanted my different, ambitious plans for summer
Hoo-wee! Am I glad summer is over. Not because of any changes or challenges from my ALS, but because of a series of unexpected life events. This year, my summer months felt as if I were on an airplane that hit turbulence, and the “fasten your seat belt” sign never turned off.
A bumpy flight
At summer’s start, I celebrated a week of ALS milestones. And with an ALS clinic visit scheduled in September, I planned to spend the months ahead focusing on new routines to improve my posture, breathing, and voice. I wanted to show up strong and feeling good.
But early in July, my plans hit a setback when both my husband and I caught the COVID-19 virus. Unfortunately, the downtime and extended recovery period ate up the remainder of the month.
Then, during my husband’s various medical tests, I spent several days relying on home health aides. Even though the care the aides provided me was excellent and appreciated, there was a learning curve. Since my husband is my sole caregiver, he has our routine down pat. Suddenly, I found myself giving directions to strangers about where items were in our home and what needed to be done. In the end, it all worked out, but I’ll admit it was exhausting.
With our summer dominated by medical concerns, my husband and I jokingly agreed that our social life was now limited to visiting doctor’s office waiting rooms.
Bringing the summer season to a close, my ALS clinic visit confirmed that at least I maintained my scores from earlier in the year. I didn’t have any new skills to show, but the clinic team agreed that maintaining my current skills was perfectly acceptable for them.
My A-L-S mantra: adapt, learn, survive
Taking a look back at the challenges of these past few months, you’d think I’d be moaning, “Woe is me.”
But that’s not what I do.
Living with ALS has taught me the value of adapting to change, learning from the experience, and not giving up, but instead surviving.
I decided to turn my attention away from the negative things that happened and see if I could learn from them to help me in the future.
My lessons learned
Having and recovering from COVID-19 taught me to have patience and give my body the time it needed to recuperate. And when the symptoms of the virus finally disappeared, I kept a positive attitude and rebuilt my strength one day at a time.
My experience with home health aides had me appreciating that my husband and I had a Plan B in place in case he couldn’t care for me. This is something I urge all ALS patients to do. It’s similar to having home modifications in place early in your disease. Discuss all the “what if” questions surrounding caregiver issues. You may not need the plan today, but in an emergency, you’ll be glad you took the time to sort out your options.
Oh, look! It’s October, and the seat belt sign is turned off. I’m free to move around the cabin. I think I’ll just stay seated and continue to live well while living with ALS.
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