For ALS Awareness Month, we asked members of the Les Turner ALS Foundation’s Support Services Committee to help us explore topics in ALS that people should know more about.
For this final week of May, we’re looking at a day in the life of a caregiver, those tasked with providing care for a loved one or a patient living with this disease. In this reflection, Mike Margelewski-Hall talks about his mother’s battle with this disease.
My husband and I sit near my mother Pam’s bed, as we watch The Wizard of Oz. When Judy Garland sings “Somewhere Over the Rainbow,” I take mom’s hand.
“It is okay to cross the rainbow,” I say. She had more than earned her wings.
I was one of my mother’s caretakers. My older brother was the primary, since he lived at home. Being a caretaker for a parent is a part of the circle of life. Our parents care for us when we are infants and of course through our formative years and in some instances, the child then becomes the caretaker.
My mother was diagnosed with ALS (amyotrophic lateral sclerosis) which comes with its very own unique set of rules. In addition to being 100% fatal, ALS is all encompassing, and it is a test of the spirit. Early on, I had to learn that she was captain of her ship, and I had to respect her wishes. She was diagnosed with Bulbar onset ALS which typically progresses more rapidly than other forms of the disease. Therefore, I had to be quick on my toes and know how to easily pivot from one situation to the next.
Her room became her sanctuary. This sanctuary brought her comfort. It housed all of her supplies including her suction machine, feeding system, BiPAP machine, breathing treatments, and general medical supplies. Everything was, for the most part, at grabbing distance.
Depending on the day, she might need extra assistance with any of her daily tasks. Mom was very particular with how she wanted things done; her daily life very much became a routine. Some might say she was demanding, but I don’t think she was demanding at all. With ALS, she lost a lot of control, but she was able to control her routine and how she wanted things done. These small things brought her comfort, and I was happy to provide them.
There were many times that I simply felt helpless. I wanted to be more helpful, but I couldn’t be due to her physical limitations. In the beginning I tried several times to get her outside because she was still mobile, but that meant her leaving her sanctuary, which in turn made her extremely anxious. Remember that your loved one is the captain and we have to respect their wishes. With that said, I always tried to remain positive; hopefully that would rub off on her. If I was having a bad day, I had to shelve those feelings so it wouldn’t have a negative effect on the level of care I was providing.
Being a caretaker can be extremely stressful on the provider. It is important that as a caretaker you are taking time for yourself to unwind. If you feel like screaming, go ahead and scream. Believe me it does wonders.
You often hear the term that being a caretaker is a “selfless job.” I don’t look at it that way at all. I simply looked at it as “repayment” for the care that was given to me my entire life. It brought me great joy that I was able to provide care and comfort for my mother during her greatest times of need. During this time, we both shared some tears but at the same time there were many laughs. I cannot tell you how many times she tried to thank me for getting meds ready, preparing a feeding, or changing filters. I simply would turn around and say, “I only have one mom.”
Mom’s battle with ALS was short, and it truly kept us on our toes. I felt my family was in a constant reaction mode. It was 18 months from onset. On Oct. 1, 2023, shortly after I told her to cross the rainbow, she did, in fact, cross and become a happy little bluebird.
