In silence, we drove to our apartment the day that Beulah was diagnosed with ALS. When I closed the door, we had inconsolable tears. We were absolutely devastated. We could not understand why. Until that appointment with the neurologist, Beulah was diagnosed with “drop foot.” Until the COVID lockdown, Beulah was making progress following a regime of aquatic, land, and TCM therapies prescribed for rehabilitation.
All we knew from articles and medical literature is that there are no answers about how one contracts ALS, and 90% to 95% of ALS cases have no known cause. Beulah had or has no relatives with ALS, so we assume that it is a “sporadic” case, as 90% of ALS cases are. (The remaining 10% fall into a category called “Familial” or hereditary disease.) We quickly learned that ALS is a terminal disease with a terrible life and a painful death — without exception.
Now our focus is on keeping Beulah comfortable and secure. These are my axioms for caregiving.
I remind Beulah’s caregivers to put ourselves in her place. Often, I try imaging laying with a motionless body where I cannot even move a finger, with a field of vision of, say 15% to 20% of the room. My sensitivities for light, smell, and hearing are consequently elevated. Then having to tolerate a runny nose or tearing eyes or a small mosquito that finds its way under my hospital gown or in my hair before anyone notices. Meanwhile, I am unable to speak due to the trach and because ALS has reached my tongue /throat. Thus, getting your attention is by moans or grunts. -----Now, replicate Beulah’s situation for a mere 20 minutes. This could drive you crazy! Then think about living that for 24/7 for the past 563 days and counting.
For communication, suitable technology exists for expressing an ALS patient’s thoughts and communicating with the outside world. Had we thoroughly thought through the ALS journey before Beulah lost control of her hands and fingers, she might have mastered electronic Eye-Gaze technology. (Patients’ eyes can guide a computer keyboard to write their messages.) Beulah did not slur her speech before her acute pneumonia in October 2021 which promptly led to the insertion of the tracheostomy tube in her throat. Only then did I totally understood Beulah’s need for assistive devices when her life locked to a motionless body with curtailed speech. She could not master the Eye-Gaze technology despite recognizing the need and the active coaching and encouragement from several MNDa society members and TTSH therapist.
The second Axiom: -Safety. I have been told that ALS does not cause physical pain. Instead, pain might happen from accidents, such as when we move Beulah from the bed to the commode to the big chair and then back to her bed. Moving Beulah is highly choreographed to minimise bobbing head, hands falling, bumping whatever, etc. It takes at least two people — usually the caregivers and myself — to move Beulah without incident. A hoist was initially considered to smoothen any movements to protect the tracheostomy from twisting and pinching in her throat, but we decided to go without because we still have more dexterity than belts and crane. Sundays are a challenge because it is the day off for our helpers; they leave after we get Beulah settled. Then it’s me, alone.
Beulah’s caregivers are two wonderful Filipinas who are abundantly empathic and quick to respond. Intuitively they understand Beulah as she communicates her needs with her tongue, eyes, and nods. Both women had previous experience with disabled and aged individuals. Besides their high Emotional Quotient (EQ), they spend their entitled day off upping their skills for caregiving. Because we need to be attentive — Beulah needs 24/7 observation — they work well beyond what is required under MOM rules, often with 16 hours daily shifts. They rotate their day and night shifts every two weeks due to the otherwise- perpetual effect of “jet lag.”
Sustaining a healthy emotional and intellectual life for Beulah is a high priority. Unlike other crippling diseases such as dementia, an ALS patient is mentally alert. Beulah remains alert and engaged, aware of everything going on around her. She is in pretty decent spirits despite her situation, and her days have been filled with a lot of news, Netflix, or family video watching to fill the time. We watch tonnes of TV and movies. Beulah has always had a wide array of interests from architecture, documentaries, and politics to food and travel. We struggle to find meaningful TV to watch.
With the obvious logistical constraints from the Pandemic, Beulah was not well enough to travel outside of our house, let alone to the Philippines where we initially considered seeking further treatment and care, even after the borders between Singapore and the Philippines had finally opened up. I concluded that Beulah receives the best care here in Singapore; though our daughters specifically wonder how much of their mother’s Quality of Life would further improve if Beulah was closer to her extended family, college friends, and loved ones overseas. It would be very difficult to replicate this level of caregiving. We have a daily routine that works for Beulah, her two caregivers, and me. As a group, we have become quite dependent upon the responsiveness of Tan Tock Seng Hospital’s (TTSH) home ventilation team, who deserves the distinction as the centre of excellence for a vast number of ALS/MND patients in Singapore.
The emotional drain is enormous. Most of that drain comes from looking ahead. The moments when Beulah has prolonged struggles with her breathing, especially in the middle of the night, which are very disturbing. Beulah’s vitals may be great, with her oxygen staying stable at 98%, but her newest challenge is having a series of panic attacks. The ALS will bring on increasing spasms — involuntary muscles nerve action connected to her respiratory system. Consequently, this affects our fear of Beulah’s worsening condition. Meanwhile, I try to retain my composure. After these episodes that can last several hours, and being exhausted, Beulah has a deep, relaxed sleep. My emotional state is clouded for much of my day.
We are fortunate to receive spiritual and emotional support from our vast array of friends and our family. While ALS is slicing away Beulah’s strength and we are accepting ALS as a one-way street, seeing Beulah’s bright engaging smile when I awake each morning tells me to endure this journey as long as possible, as vowed the day Beulah and I heard, “you might have ALS.