Taking Care of Mom
Show Up and Give a Shit #
“This is one of those kinds of phone calls,” my dad said during a phone call in December 2016. Mom visited a neurologist at the Mayo Clinic in Jacksonville, FL, where the doctor told her she likely had ALS. A blood test confirmed it a week later: it was ALS. My family was devastated. The same illness that took my grandmother in 1995 had now come for Mom.
I went to Florida the next week. Mom, 64 years old, was having problems with her right hand.
Decision Making #
Shortly after my trip to Florida, L and I made the decision to leave Seattle and move to Florida to help Dad take care of Mom. At the time, her illness didn’t require a ton of care but we knew that would not be the case for long.
Here are some factors that went into our decision:
- ALS is awful, awful, awful
- Mom and Dad will need help
- We’re able: No strong ties to Seattle, we don’t have children and our jobs can be done remotely
- We don’t want to live with the regret of not taking the chance to be with Mom and Dad
In March of 2017, I left a lucrative job that I hadn’t liked much at AWS and joined Planet Labs, which offered 100% remote work. In July of 2017 our family got together in Florida. L and I found a new apartment. Mom insisted we go to Canaveral National Seashore and watched sea turtles lay eggs at night. I remember wearing jeans and a hoodie that evening and still getting eaten alive by mosquitoes.
Moving #
We hired movers to pack up our stuff and move it from Seattle to Florida. Of course, on moving day they didn’t show up on time and I had to bug the moving company to show up. Sigh.
September 2017 was a particularly rough month for our family. In no particular order:
- Texas Hurricanes left my sister and her family without power
- Mom and Dad’s house in FL was also threatened by different hurricanes
- Mom and Dad attempted to go to Niagara Falls, but Mom broke her hip after a fall. Dropfoot on her right side contributed to the fall. She had to have a hip replaced in NY.
- L and I were moving and driving ~3000 miles from Seattle to our new apartment in Florida.
Before our movers arrived in FL, Mom and her brother flew back after her hip surgery and we got Mom home. Dad was driving back from NY. I picked Mom and her brother up from the airport and it struck me how much her condition changed from July to September. She was unable to walk from the hip replacement.
ALS was a stark reminder of life’s helpless moments. L and I came up with a saying that has endured for situations like this:
Show up and give a shit
We finally moved in to our new apartment in Florida. And then we showed up and gave a shit.
Mom and Me #
Tuesdays #
Mom’s decline continued. She slowed it by taking medication for a period of time.
Inspired by Tuesdays with Morrie, I worked with my employer at the time, Planet, and took Paid Family Care Leave, similar to FMLA. The leave enabled me to take Tuesdays off of work to take care of Mom (and relieve Dad). This was the most valuable time to me during Mom’s illness. I’m incredibly grateful for the folks at Planet that helped make this happen. If you’re reading this, Troy, Ryan C, Eliza, Ron, Michio, Brian H, Daniel… thank you.
Since we saw ALS with my grandmother’s illness, our family understood the realities of ALS even when a lot of medical staff did not. There’s a chance Mom eventually wouldn’t be able to speak. She was already in a motorized wheelchair. Her condition was terminal and degenerative, which brings a strange clarity when you know a loved one doesn’t have much time left. For me, I knew we had to make the most of the time we had left together.
Mom and I made the most of those Tuesdays. They were 33% amazing, 33% uneventful, and 33% awful. Amazing Tuesdays included walks in the neighborhood where we left nothing unsaid in our conversations. Amazing Tuesdays were also ones with musicians performing in their home, Beach Wheelchairs, speeding through a storm with the motorized wheelchair, and watching Cheech and Chong while enjoying medical marijuana. Uneventful Tuesdays were ones where Mom was tired and she slept a lot. Awful Tuesdays were the ones where we had new things to grieve, like the loss of use of a hand, or the ones where the weight of the illness caught up with us.
Beyond Tuesdays #
At some point in 2018, I wasn’t just showing up on Tuesdays. I showed up every night, 7 days a week. The “evening shift” as Dad and I called it was similar to Tuesdays: an equal mix of amazing, uneventful, and awful. Dad and I watched Jeopardy every night after Mom was asleep. During this time, Dad, L and I had mastered the transfer disc, hydraulic Hoyer Lift, hospital bed, and motorized wheelchair. Mom could easily navigate her wheelchair in and out of the wheelchair friendly van Dad had leased. She could use an Alexa device to watch TV and manage the lights in her room. I became the family’s pharmacist, tracking all of the medications Mom needed, preparing them for each day’s use, and ensuring refills were ordered.
Mom’s continued decline meant we needed additional help. Family members visited and provided much needed relief for Dad, L, and I. Dad eventually hired caregivers to help us take care of Mom. The caregivers, L, Dad, occasional visiting family members, and I gave all of our energies to Mom.
Every few months, we visited the neurologist at the Mayo Clinic in Jacksonville, who measured Mom’s progression and offered a comprehensive set of services for her. At one appointment, Mom agreed to donate brain and spinal cord issue for research after she passed away.
We also attended monthly ALS support group meetings. Sometimes Mom came, sometimes she didn’t. We got lots of useful information from this group.
Passing #
Mom passed late July 2019.
In April of 2019, her decline accelerated, and all of us caregivers went into overdrive. One afternoon that May we went to the beach for a little while. It was the last time she left the house.
Mom eventually lost the ability to speak, the use of her arms and legs, and the ability to chew and swallow food. Our family simultaneously performed rigorous caregiving activities while grieving the loss of a loved one day by day. Mom’s essence eventually left her body. We honored her by continuing to give her the love and care she deserved.
There was one afternoon I lost my temper on a nurse. I swore at her a lot, even by my foul mouthed standards. The nurse didn’t understand ALS that well and didn’t offer any options that I thought were helpful for Mom or the caregivers. Looking back, of course ALS didn’t present any viable options.
Hospice #
In early 2019, we reached out to Hospice for help with Mom’s illness. The folks with Halifax Health Hospice care were quite helpful during that time. Hospice provided more than end-of-life care for Mom, they helped us with improving Mom’s quality of life in several dimensions before she passed.
On her last day, I administered two doses of morphine (afternoon and evening) as instructed by Hospice. I stayed the overnight the night she passed. It was the hardest night of my life. Dad and I woke up around the same time and realized she was gone. I called L, she came over, and we cried our eyes out together.
The hospice nurse came over that day and helped us properly dispose of medication. The caregiver we had hired showed up and cried with us.
Mom’s final gesture was an act of love for her family. Earlier in her illness, she arranged to donate brain and spinal cord tissue for research. She believed this research could help other family members that could potentially have ALS. Those folks eventually came to pick her up and that was the last time we saw her body. She was cremated.
Memorial #
Nearly a month later, we had a memorial service for Mom. She wanted to be cremated, but her wishes couldn’t be fulfilled until after her donations for research had been completed. Family and friends flew from all over the country to remember her. There was a nice service at the church and we were floored by the turnout.
At dinner after the memorial service, Mom’s brother told us that he was diagnosed with ALS. He was 55 years old. Fuck.