Caregiving is Like Blind Cats Driving Bumper Cars
Caregiving is Like Blind Cats Driving Bumper Cars
In 2016, I moved to Florida to be close to my parents in case they needed anything as they aged. Dad was diagnosed with Alzheimer’s disease, the most common type of dementia, and Mom was having some slight mobility issues. I figured I would have time to work on my own projects where I would continue to earn money and still help my folks out; bonus…I’d be away from the New England snowstorms.
How it started
First, Dad totaled the car driving from New York to Florida after I sold their New York apartment for them. After that, he didn’t want to drive anymore. Mom flunked her cognitive test at the memory center, and it was recommended she no longer drive. Bye-bye snowbird status for them. Hello…That marked the beginning of me losing control of my life.
Early in the process, we met with lawyers, veterans’ administrators and financial experts to make sure paperwork was in order for how my parents wanted to live and what would happen if they outlived their assets. To ensure that I followed what would make my parents feel heard and remain comfortable, I needed to know: What were their wishes? What benefits were they entitled to? I needed to know details because I also did their tax returns. I learned how to do that by working in dad’s tax office for nine years when I was in high school and college.
How my caregiving progressed
Since those first days, I’ve transitioned my parents from their waterfront condo to independent living in a senior community. I’ve gotten them through what feels like thousands of doctor’s appointments (including a cardiologist, dermatologist, ear/nose/throat doctor, urologist, gastroenterologist, podiatrist, dentist, ophthalmologist, primary care physician, physical therapist, audiologist, etc.) — plus Mom’s emergency visit to the hospital and subsequent stay for an atrial fibrillation event. “Did you know she also has COPD?” They asked me. “Um, no. When did that start?”
I also helped Dad when he needed a new pacemaker, cancers removed from his skin every six months, and other urgent medical issues. Bing, bong, bouncing off the rubber walls.
Then the hallucinations started where Dad walked into the hallway of his building at 2 a.m. in his underwear trying to find the non-existent people talking too loudly. Or the time when he scratched his hand raw trying to get rid of hair growing on his palm. Then there was the psychiatrist who reassessed Dad as having Lewy-Body dementia — not Alzheimer’s. New drugs were added to the list he was already taking. (Did I mention drug management — and all the side effects — falls on my list, too?)
And then COVID-19 happened
All the while, each year it seems, I was protecting them from worsening and more frequent hurricanes as we evacuated to my friend’s homes to keep us safe. Two in the morning alarms to take cover for tornadoes had me running us into unfamiliar walk-in closets. Cleaning out refrigerators with spoiled food after power outages and sweeping up sand that came in under the sliding doors became part and parcel of caregiving. (Maybe I should have stuck with snowstorms?)
Okay — now throw in the drama and instability that COVID-19 created. I couldn’t visit anymore. I had to make sure my parents received vaccines. I became their new phone buddy, teaching them to Zoom and Facetime, because isolation in their building made them lonely. Food was delivered to their apartments with singing staff and fun treats, but was that enough? I was worrying about their interactions with people who had contact with the outside, but the lack of socialization led to the advancement of mental decline as well as physical decline for both parents.
Eventually, Mom couldn’t take care of Dad alone all day. He needed all his activities of daily living handled by someone. This included:
- Washing up
- And more
Eventually, Dad was unable to stand and became bed bound. Once confined to his bed, I was no longer dealing with three or more “lift assist” calls to EMS each week because dad had fallen and couldn’t get up. I was now worrying about urinary tract infections, catheters, bed sores, pressure sores, etc. — which became yet another set of tasks for me to do or supervise.
In the past year, I became an employer, managing a staff of four aides providing daily care for my father twelve hours a day/seven days a week. When one didn’t show, or one resigned, or someone needed a vacation, I would enter panic mode. There was payroll and scheduling, taxes and fees, forms to fill out, and so on to manage the staff. (It’s a good thing I used to work in human resources!)
A personal care conversation
“No Mom, I don’t want to see a picture of dad’s catheter insertion.”
“Why not?” she asked.
“Because he’s my father and that’s a part of him I don’t want to have to look at.”
At which point she launched into reassurance that “it” was shrinking. URGH!!!
Text messages arrived between 9 a.m. and 2 a.m. each day from Mom that she needed more diapers, more wipes for Dad’s rear-end cleaning, antibacterial soaps — because, let’s not forget, it was COVID. So “personal shopper” was added to my job description. Mom didn’t quite get the order-it-online process. And she couldn’t just make a list because she needed to send it when she thought of it or she would forget. I was the recipient of multiple, daily text messages with items needed at Costco, the Publix supermarket, Target, Walmart, or the drug store, etc.
“Shut off your phone,” a wise person might say, but how can you when any time the call might actually be that call: of someone in the hospital or dead? The constant fear of that call makes being a caregiver emotionally taxing and physically challenging because (like when you have an infant), you never REALLY sleep deeply. You’re living in constant anticipation.
Then when hospice got involved with Dad’s care, I had a case manager, a nurse, and a new primary care physician to add to the list of people I was in touch with about his care. At the same time, I was also communicating weekly — sometimes daily — with my siblings so they were aware of what was going on with my parent’s so, if anything happened to me, they would be able to continue care. I often emailed during the night when I had a break and could sit for a minute.
A caregiving simile
My friend said one day that I sounded like a blind cat driving a bumper car. “Hi everyone…nice to meet you. Sorry if I’ve crashed into you lately.” Being a caregiver is an overwhelming and confusing proposition whether you live in the home with your loved one or you are managing/trying to help long distance.
Not all of your efforts are always welcomed or appreciated which adds to the sense of futility and “why do I even bother?” self-questioning. Sibling conflicts and financial challenges create more dramatic turns and bumps.
For people fortunate enough to have assets, long-term care insurance, and/or extensive family around them…all of these things could be managed by people we hire or ask to contribute to the responsibilities. But when you’re the designated caregiver and you are there day-by-day — alone — and others are just there to give you what they assume is helpful advice, caregiving can be lonely.
When you are running out of assets to care for your loved one, you feel an impending sense of doom about what will happen when the assets are depleted. How will you manage? And, if you’re like me, you continue using your own money to live but you can’t work because you’re caregiving. You wind up with nothing left to reboot your life when caregiving ends.
It seems like we need some better plans in place for caregivers whether it’s through work, government, or family. Maybe some education for what to expect would make the job easier? I’ve tried to share what I’ve learned along the way.
My father passed away on Oct. 1, 2021. It was a very, very sad day but also with a sense of liberation. My mother could stop listening for Dad to stop breathing. I could stop waiting for that call. He is at peace. He is not confused or in pain any longer. I cry. But I am relieved, too, and I think all caregivers need to accept that it’s okay to feel relief.
I know my dad is still with me. He is guiding me and he let me know that he wants me to start taking care of myself. I am comforted by that. But what does that look like?
I’m still caring for Mom, though she is able to live independently right now. I’m managing their condo and all of its out-of-date appliances and decaying finishes, along with mom’s apartment, medical needs and finances. I’ve depleted my resources physically, emotionally, and financially over these last seven years, and now I’ve got to transition myself back to a version of ME I want to be.
I must focus on healing my body. Replenish. Riding around like a blind cat, banging into other people and walls, can really mess you up! How I start to live my own life again is the challenge and journey I now begin. Maybe the road will straighten out a bit, and I’ll allow people to guide me so I don’t keep banging into obstacles.
I’ll keep writing about what I find that helps me get back to me. I’d love to hear your thoughts and what’s worked for you. Reach out in the comments below!
Fern Pessin is the author of I’ll Be Right There, A Guidebook for Adults Caring for Aging Parents.
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