I had just logged onto a Skype call to meet with my team in India, barely professional from the waist up, when Robert started groaning on the floor next to me. I was sitting on the couch, a cup of coffee nearby with my MacBook on a pillow on my lap.
It’s 5 o’clock somewhere
My hair was patted down to something not quite bedheadish and I hoped that by the time my image made it across the world, it would be a bit fuzzier. Perhaps with enough pixelation, I’d even appear rested. Robert was at my feet, propped on his right elbow, leaning against the couch trying, without success, to get up off the floor.
Robert had lowered himself to the carpet to do his morning “Pilates”…a carefully orchestrated, 5-minute set of various leg twirls that were meant to keep him in shape and flexible. His routine wasn’t adequate to the job, but it was his routine – it kept him busy and moving, so who was I to interfere?
Days of the pandemic
These were the early months of COVID-19 – 4 months in and counting. We’d settled into a routine that involved me working until breakfast then breaking for food and a rousing game of “Let’s get Robert dressed for the day!” Robert was losing his ability to handle the simple acts of daily living (ADLs). He lost the ability to dress himself shortly after losing the ability to cook and use his debit card.
When my call concluded, as I tried to roll Robert to a recliner nearby, I had a weird, almost out-of-body experience. I saw myself as someone just entering the room might see me: hunched over, heaving and straining, too overweight and disheveled to feign any sort of grace, attempting to move a 180 lb man across the floor. I remember thinking, “This is really nutty.” Finally, between the couch and the recliner, Robert was able to pull himself up to a sitting position.
Split personality
In those days, my mind and body were assigned completely incongruous tasks. How could I be a professional person, good at my job, and context switch to assisting my husband put on his underwear? Talk about compartmentalization. I was the queen of operating in tight, circumscribed, little boxes. Another impossible task executed! Another morning salvaged! Good for me.
But that day I decided “I can’t do this anymore. I need help. I need to be able to fully give myself over to work during my workday and not worry about whether Robert is safe either at home or out in the world.” The carefully constructed boxes that held my life together were falling apart.
Why wait?
Why did I wait so long to get help? Because I didn’t want to need it. I knew, intellectually, that we were never going to get a reprieve. There was never going to be a moment, a month or two when Robert recovered his mind. But as I shared in Dr. Canio and the POLST, acceptance comes in tiny steps, in fits and starts. Recognizing that I needed help with Robert was a grudging acknowledgment that I’d be responsible for running our lives forever. I didn’t want to be responsible for everything. I didn’t want Robert to disappear.
Several more years would pass before I would feel the persistent physical heartache of losing him. I was supposed to grow old with Robert. I’ve shared most of my life with him. He has been my steadfast sweetheart. He was meant to be the grandparent beside me watching our grandkids on the soccer field or at the science fair or school play.
I feel his absence in my life every day. I might be having the very best possible day, but any tiny reminder of what we’ve lost can activate a rivulet of anxiety that runs through my core. In those moments, I feel like I’ve just flown off the highest turn on a roller coaster and I’m waiting for my stomach to drop back into my body. What is good and true has been physically wrenched from me. This level of loss was just too profound to feel at the beginning of our journey. As mere mortals, we can’t take it in all at once.
Why wait still?
Why did I wait so long to get help? Fear of the expense. Money would start to slip through my fingers like sand in an hourglass…only faster. Providing care for Robert has been tremendously expensive and will be until he passes. That sounds so horrible in the telling and yet it is true. I can’t escape this reality just because I’d prefer not to speak of such things. I never wanted to hold my dearly beloved in the same breath as talk of money, but I find it hard not to.
And I’m lucky. I’ve enjoyed the relative privilege of having enough money to pay for Robert’s care. Most Americans don’t. I have paid for Robert’s care with money from our retirement savings, our intended legacy, to be inherited by our children one day. I have spent hours with spreadsheets trying to figure out how to make the money last longer. I’ve laid awake nights wondering if I’ve accounted for taxes in this or that calculation, second-guessing whether I’ve adequately planned for inflation in my living expenses for the next 10 years, stewing over life expectancy calculations for Robert. Yes, even that.
No. There is no relief on the way.
Contrary to what many people think, Medicare does not pay for long-term care. Memory care facilities are private pay businesses. There is no federal or state funding that makes this life stage affordable. Only 7% of Americans have long-term care insurance. 22% of applicants aged 50-59 do not qualify for long-term care insurance. 44% of applicants aged 70-79 are rejected. The long-term care problem was not fixed by the Affordable Care Act either. It was just too expensive to implement.
But I’m getting ahead of myself. I wasn’t ready to move Robert to a home. I just needed help a few hours each day.
In my next story, I’ll share the process I went through to engage a caregiver for Robert. How do you choose someone to care for the person you love most in the world? Will anyone ever be good enough?