I’m now the one giving care since my caregiver’s illness
With my DMD, I've been lucky to have this rare relationship. Now it's changing.
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Note: This column contains spoilers for the series finale of the Netflix TV show “Dead to Me.”
As I write this, the date is April 3. I’ve just survived the longest and most helpless week of my life.
Two Sundays ago, my support worker, Glenda, suddenly fell ill from dehydration and had a concerning dizzy spell, shocking my sister, who was having dinner with me that particular Sunday. It felt like my reality was unraveling before my eyes. My emotions have been numb since.
My parents were in Italy on vacation and wouldn’t return here to Singapore until Friday. They’d left me in charge, as my sister had moved out of our family home last year.
In their words, I had to be the one holding the fort in their absence. So you can only imagine the guilt and shame I experienced when I failed to preempt Glenda’s falling sick, even though the signs were already there: Her condition had deteriorated rapidly since the turn of the year.
My relationship with Glenda
Journeying with Glenda through the ups and downs of my life with Duchenne muscular dystrophy (DMD) for the past 16 years has been an emotional roller coaster for both of us. Our relationship is unlike any other.
She started working for my family in 2006 to take over for her younger sister, who’d cared for me since birth. When I was 10, Glenda was 34 and a young mother of three girls in the Philippines.
She’d walked with me in my darkest times and most challenging moments, when I had my closest shaves with death because of a 2011 case of pneumonia and dengue last July. She’s been a constant companion in my struggles with mental health when I had to give up on my promising but short-lived career as a fine artist and lost my brother, Isaac, a few years ago, both due to DMD.
However, it hasn’t all been doom and gloom. Glenda also witnessed me at my finest hour when Isaac and I used our art to raise funds for the Muscular Dystrophy Association (Singapore) in 2007 and celebrated with me when I was at the pinnacle of my academic and advocacy achievements.
She’s my guardian angel and a second mother to me. I wouldn’t be here today without her. Now I fear losing her to illness. Ever since she started caring for me, I’ve felt a tinge of guilt for taking her away from her three daughters, who’ve grown up and are now attending college, all dependent on their mother to support their tuition.
Both sides now
Days earlier, I’d gone to bed close to midnight on three consecutive evenings, binge-watching the third and final season of my favorite tragicomedy series, “Dead to Me.” I wanted to capitalize on the first few days of my parents being away from home, which is rare, to catch up on some of my shows.
Glenda and I struggled to get much sleep due to my overstimulation and chronic insomnia. I also had two outdoor speaking engagements on the Wednesday and Thursday of that week, and the weather in Singapore then was scorching. Glenda was beginning to feel unwell, but didn’t tell me.
The night she fell ill, I couldn’t help but recall the series finale I’d caught the same week.
Without giving too much away, “Dead to Me” is a dark comedy-drama series that follows the unlikely friendship between Jen Harding (Christina Applegate), a recently widowed real estate agent, and Judy Hale (Linda Cardellini), a free-spirited soul with a painful past. Despite their differences, the two women meet at a grief support group and form a deep bond, soon becoming best friends.
As their friendship deepens, however, Jen and Judy become embroiled in a chain of dark and twisted events that they must navigate while maintaining their company and protecting their loved ones.
The series finale brought a bittersweet conclusion to their ride-or-die relationship, with Jen losing Judy to cancer, but not before sharing one last beautiful moment. The ending felt even more moving and poignant in light of Applegate’s multiple sclerosis diagnosis before the final season’s release.
Notwithstanding the morbid themes in the series, I can see its similarities to my relationship with Glenda. Being a Duchenne MD survivor can feel like being a prisoner on death row. Being a caregiver to one can mean chronic burnout and fatigue.
Life with Duchenne MD can feel like you and the caregiver are the main characters in a real-life tragicomedy, with lighthearted and humorous exchanges making it more bearable.
Now that my caregiver’s ill, it’s my turn to care for her.
Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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