The decision came quite early. My mother and I discussed our options over the phone several weeks after she received her diagnosis. Even though my parents were divorced, I discussed it with both of them. I mentioned the possibility of moving back to Buffalo, though both of my parents pointed out that I wouldn’t get very far career-wise by moving back to my Rust Belt hometown.
“That wouldn’t make sense for you,” my dad said. “There aren’t any jobs here. There’s no opportunity for you here anymore.”
“I mentioned to mom that she could get really good care out here,” I said.
“What did she say?”
“She said she didn’t want to be a ‘burden.’ I told her she could never be a burden. She always planned on moving out West, wherever I was living, once she retired and I was settled down somewhere.”
Indeed, my mom had spoken for years about leaving Buffalo someday. It started in the summer of 2007, when I quit my cashier job after several months of saving up my paychecks and drove towards the Pacific. I was on summer break about to go into my senior year of college. My mother had flew out to Wyoming and accompanied me through that state and on into Montana, Idaho, Washington, Oregon, and finally California. We both fell wildly in love with the northern Rocky Mountains and the seemingly endless beaches that sprawl along the entire Pacific coast. In a work-related conference my mother participated in just a few years ago, she wrote in her professional bio that she lives in New York but plans on someday “moving with my son to the West Coast.” I wasn’t even living out West at the time, but we both knew that it would happen one day – only neither of us suspected the circumstances that would catalyze that moving day for my mom.
Having grown up in Buffalo, NY, we’ve both always held a special place in our hearts for our hometown. But my dad was right – there were no jobs in my field in my hometown. There weren’t many jobs opening up in general at the time, outside of the medical sector and the service industry. Over the coming weeks and months I scoured the web for jobs I’d be qualified for and found practically nothing. The positions I did find were unpaid internships and independent contractor positions that paid minimum wage and not a cent more. In Los Angeles I was making enough money to start an IRA account to plan for my retirement. My girlfriend and I have even begun talking about the possibility of saving up for a house some day. Neither would be feasible if I were making $9/hour in a position with zero growth opportunities. It wasn’t an easy decision, but both of my parents agreed that moving back to Buffalo would be a mistake that would set my career back and ruin my financial plans for the future. Many relatives disagreed with this decision – some reactions were aggressively confrontational to the point of hostility when I asked for assistance making phone calls to facilitate the move. As frustrated as I got, I try not to hold resentment towards them. I’m sure that in their own way, they want what’s best for my mom; it just pains me that they doubt I want the same thing. If we had a calm conversation about it today, I would refer them to the Caregiver Bill of Rights, which reminds us that as a caregiver,
“I have the right to take care of myself. This is not an act of selfishness. I have the right to protect my individuality and my right to make a life for myself that will sustain me in times when my loved one no longer needs my help.”
I was effectively signing up to be a caregiver for my mother, and in order to do that well I would need to live in a place where I had a steady job with a decent salary – an accommodation which, unfortunately, my old hometown could not provide. When I talked to my mom about wanting to help take care of her and spend more time together, she kept returning to the notion that her health would be a “burden” (her words). That was proving to be a hurdle in our conversations, and eventually I had to bluntly tell her, “You’re not a burden. You could never be a burden. I love you and I want to help you.”
“What about Audrey?” she asked. She worried about how my girlfriend would feel during all of this. Audrey and I had discussed it extensively – in fact, in the event that we weren’t able to move my mother out here for whatever reason, Audrey was willing to move back to Buffalo with me if it came down to it.
“Audrey cares about you, too” I said. You’re not a burden to either of us.”
“Could we go to the ocean?” my mom asked.
“Of course,” I said. “If you ever reach a point where you can’t walk, I’ll push you in a wheelchair myself. We’ll go to the beach and up the boardwalk and dip our feet in the water. You and me.”
“I’d like that,” she said. “I think I’d like to move there.”
My mother felt good about the decision, and so did I. My father was also supportive. He knew how much I wanted to help, and he recognized that California was a more practical place to live.
“It just makes so much more sense,” he said. “There’s no snow to shovel, no icy sidewalks. She won’t have to stay in her room all the time when it’s 80 degrees and sunny every day.”
Other family members continued to voice a lack of support. I vented about the exhaustion of this uphill battle to my father, who reminded me that the opinions of anyone not actively working to be a caregiver for my mom didn’t really matter.
“They can think whatever they want to think,” my dad said. “None of that matters. All that matters is that you and mom are happy. This is what she wants. She wants to be with you, and you want to help her. Don’t let anyone else get in your head when you’re doing the right thing.”
I thought about that conversation many times as I made preparations to help my mother move 2,572 miles. My father and my girlfriend offered me assistance in any way they could, and a couple of my mom’s good friends helped make some phone calls when I was too exhausted and overwhelmed to keep going alone. Still, it was an ongoing struggle that continued to test all of us for months.
“Don’t let anyone else get in your head,” I reminded myself. My father’s words became a sort of mantra for me during that time, and I still think of those words with some regularity. Any time I get frustrated or exhausted, I remembered that I’m doing this for my mom, and I know that it will all be worth the effort if I can improve her quality of life in any way.
My search started with apartments for my mom to move into. She was still living on her own and even driving her car at the time, but as with many ALS patients, her abilities and independence decreased in direct proportion to the increase in symptoms. My apartment hunt quickly turned into a search for independent living for seniors, where she’d have the opportunity to segue into assisted living as her condition advanced. That soon collapsed into a search for assisted living communities, and finally, for nursing communities. When all was said and done, I personally had called, emailed, and visited between 30-50 locations. Then, with the help of my mom’s friend Mary, we found Solheim.
The location was perfect. It’s about halfway between my apartment and the office where I work, making visits easy enough to be an everyday occasion. Solheim had positive reviews online, and when I toured the community I knew it was a safe place for my mom. You can talk to as many administrative people as you like or read all the reviews that are posted online, but you won’t have a complete sense of a place until you visit in person and see it with your own eyes. I knew my mom would get good care here, yet still have the independence to sit outside alone and read in the courtyard or by the garden fountain. I sent photos and videos of each of the final contenders to my mom and to a friend of ours, and everyone agreed that Solheim was a good fit.
Facilitating a new home for someone typically feels complete once a rental agreement is signed, but this was my first time finding a residence for someone besides myself, and nothing would be certain until my mother saw it for herself. Her approval was all the mattered. It was going to be an adjustment for her no matter where she moved into. In July or August 2016 my mom had sold our two-story home in Lancaster (just outside of Buffalo), where I’d grown up. In many ways it was a sort of severing of ties for me and my hometown. I’d lived in several different cities and states through the years, but until I moved to California I’d always maintained my New York residency. Any time an official form asked for a permanent mailing address, I’d list the house that my mother and I shared for most of my life and half of hers. She sold it just a few months after receiving her diagnosis, knowing that soon she would have problems climbing the stairs every day, to say nothing of the yard work and general upkeep that home ownership requires. She had moved into an independent living community for seniors and downsized from a whole house to a modestly-sized one-bedroom apartment. Her unit had a full kitchen, bathroom, and washer/dryer, since she was still fully independent last Autumn. By Spring of 2017, she was no longer able to drive herself and her daily showering/dressing routine was becoming increasingly difficult to do alone. Now she was moving into a nursing community, where her needs would be met by nurses and aides. For an independent woman like my mom, that would be a challenge to get used to. However, her own physical limitations continued to grow beyond what could be easily managed at home with some light assistance, and they had already long-surpassed what she could manage on her own.
I flew out to Buffalo to help my mom with her one-way flight back to Los Angeles. My father drove us to the airport, and before we parted ways he said that he knew I would take good care of my mom. We waited at the airport for a wheelchair for my mom. She can still walk, but she gets fatigued easily and she’s lost a lot of muscle strength. When I held her arm for the first time to help her stand up, I was shocked at how easily my hand fit around her bicep. She had never been a weightlifter, but my mother did go to yoga and zumba classes often enough to maintain a consistent muscle tone for many years. I wheeled her through to the security line. A TSA agent directed my mother towards one line for travelers who had been “pre-screened” and approved by the TSA, but I was directed towards another line.
“Please – I need to go with her,” I said. “She’s disabled and she can’t speak.”
“You can’t go with her,” he replied coldly. “She can go with you to the regular line.”
“Yes, but she can’t take her shoes on and off,” I said. “She has ALS, so it’s-”
“You can’t go with her,” he repeated.
“She needs someone with her to answer questions because she can’t speak,” I said.
His patience grew even shorter, and someone in the line behind me audibly sighed and started murmuring. It may have been bureaucratic business-as-usual for the TSA, but for my mother and me it was the first of what would turn out to be many frustrating inconveniences that stem from a basic lack of understanding over what ALS is and how it affects individuals. Eventually I relented, told my mom I would meet her on the other side of security, and waited in a long queue with other weary travelers.
Afterwards at our gate I apologized to my mom. She seemed unphased and unbothered, but I felt like we had been treated unfairly. I tried to make it up to her by rushing to grab applesauce from the airport convenience store so that my mother would have something to eat on our flight. She was already having great difficulty with solid foods, and we worried that the duration of the flight would leave her famished by the time we landed in Los Angeles. I hurried frantically, afraid to leave her alone for long. I realize now that this was the start of a long, gradual change in the dynamic of our relationship: for most of my life, my mom had taken care of me in some form or another. From childhood, when I was helpless on my own, to recent years when I was stressed out in grad school and needed someone I could talk to on the phone about my problems, my mom had always been there for me. Now it was my turn to help take care of her.
I let my mom have the window seat because I wanted her to be able to see Buffalo and Los Angeles from above. I glanced over her shoulder and watched the rusting grain elevators, the waterfront, and the skyline of downtown Buffalo grow gradually smaller and smaller until it strained my neck to see them as our plane turned and aimed us southwest. As we approached LAX on our descent several hours later, I excitedly pointed out the Los Angeles skyline, the sprawling circuit of streetlights and car lights and illuminated houses that populate LA County, all of it a twinkling mass of little lives, just as important to the people living them as this life is to my mother and me. That’s the thing I love most about big cities – for some, the vastness and overcrowding feel uncomfortable, but I relish being a part of something so huge and complex. Each little light was a life; some were happy lives and some were marked with tragedy and misfortune. Some were celebrating birthdays and new births while others were mourning recent deaths. In the daily chaos of life it can seem like the world is indifferent and uncaring, but when you see whole communities from above you’re reminded that we all share the same basic wants and needs, that your life is no more important nor any less meaningful than any of the other lives you bear witness to. I was nervous, taking on this new role, as I was sure my mother was nervous about moving across the country, but I knew before our plane even landed that no matter what else happened, we would still have each other.