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.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Len Jax
Dagmar,
Sorry to hear you had extended issues from Covid. I had it early on and was only wiped out for three days. Kudos to you for your positive attitude in dealing with the setback of the long haul and coming out at the same level. It's a win! My mantra is to grieve, accept, adjust, and move on. The key, as you said, is to learn from adversity.
In one of your previous columns, you recommended setting up home healthcare services before they are needed. Thank you for that thought. My wife and I were considering researching agencies for respite care so that she would get a break from the responsibility. Your comments spurred us on. We interviewed a few and decided to sign on with one for three hours a week.
I currently have two workers who are a team in training. (I don't know how long I will have both, but it is excellent) The first week I did not have a list of things to do, so I had them do a few things, and I spent most of the time getting to know them. It was slow because I used an iPad app to communicate and type with two fingers. We also played "Guess what Len is saying" for them to experience my speech. It was great fun. They are both in their early 20s. As you noted in your column, young people work more quickly.
For the next week, I typed out a list of things for them to do. I also had my wife buy the ingredients for my Asian stir-fry recipe. I used to do all the cooking, so the three of us cooked together; they were my hands and feet, and I was the wheelchair director! We had great fun; they are learning a lot, and so am I. This week I had them clean, water outdoor plants, leaf blow the porch, driveway, and deck, and we made healthy baked chicken fingers. I always give them a serving of what we make to try - they appreciate it. Next week it will be Minestrone soup.
My wife must do these things, as I can no longer help. She gets downtime to renew; work gets done along with meals for several of the coming days and some for the freezer. She loves it, and I get the joy of doing something for her. Life is good.
Len