My dad has trouble eating.
His head is always bowed slightly due to Parkinson’s disease. He’ll gingerly stab at whatever food is in front of him and then slowly guide the fork to his open mouth, his hand sometimes shaking. Dad has trouble closing his lips fully, so some food always escapes onto the front of his shirt.
Sitting with him at Barnes and Noble, where we made our usual father-daughter stop last month, I held my breath on his every bite lest he lose a bit of his favorite dessert. Sometimes, though, I would have to look away. I have an early memory of pressing my head against this man’s chest at age three as Fourth of July fireworks went off around us. Now, 46 years later, he can barely pick up a drinking glass.
We aren’t raised to be ready for the moments when we suddenly find the roles with our parents so oddly reversed. We begin life with mothers and fathers orchestrating our worlds, and years later, many of us find ourselves helping them to stand, providing rides and performing other duties that they used to help us with. It’s disconcerting how fast it happens.
I was talking to a woman at the gym a few weeks ago who told me that she was slow to catch on to the fact that her mother had dementia. She used to get irritated when the older lady would ask her to repeat herself over and over. Now she is caring for her mother, which includes feeding her and helping her to the bathroom. She is still in shock at what she has to do now. I know the feeling.
MY FATHER FOUND OUT HE HAD PARKINSON’S IN EARLY 2014, BUT HE KEPT IT FROM MY BROTHER AND I UNTIL LATE IN THE YEAR.
By that time, a variety of symptoms had begun to slow him down. We all traveled to his home in Oregon for Thanksgiving that fall, and by that time, his strong walk had turned into a shuffle. He was slow and awkward in movement and could barely drive. I remember at one point sitting in the passenger seat with him at the wheel, wondering if I was safe with him.
By Christmas, Dad’s lower legs were swollen with cellulitis. Getting up and down the stairs at my brother’s house was a serious endeavor. I had to help him put on his compression socks in the morning and take them off again at night.
To say that my father’s fall from able-bodied to severely handicapped in the space of 18 months is a shock is a serious understatement.
None of my older relatives died under any special care. My grandmothers passed away while living independently in their own homes. Those were my role models in aging. But my dad outlived his parents by several years, and with that sometimes comes diseases and conditions that our ancestors didn’t live long enough to manifest. The world as Dad knew it came crashing down the night before my birthday just over a year ago. He fell while at home and couldn’t get up. Twelve hours later, his two best friends came by to pick him up for a lunch date and found him on the floor. After a hospital visit, he was sent home, but the Parkinson’s had really taken hold.
We helped him find in-home caregivers: the Visiting Angels. And as I saw when I traveled to his home over the summer, they lived up to their name. They got him breakfast, helped him shower and dressed him. They made him lunch, changed his adult diaper, gave him his medications and cleaned the house, all with a great sense of humor. But as I learned, caregiving is a backbreaking job, like parenting.
Dad was having the Visiting Angels come in the morning and evening. While I was there, he let them take the night off. That left me getting him dinner, taking off his socks, finding the medication—and being incredibly vigilant.
One afternoon, Dad was in the bathroom as I worked on the computer in the next room. I had an ear cocked his way, much like a parent listens when her children are playing upstairs. Sure enough, he called my name, and I braced myself as I walked toward the closed door.
“I can’t get the button buttoned,” he said of his shorts when I walked in.
I decided after that trip that I could be a caregiver. I had, after all, worked as a dining room server at a retirement center when I was in college. I just couldn’t be a caregiver for my own father. It’s so hard to see someone you love in a vulnerable state, like he is.
Now that Dad is in an assisted living facility, however, I’m not even sure about that. I am in awe of the caregivers there. The patience and friendliness each shows to every senior is an attitude this society could really use. Caregivers seem to march at a pre-21st century pace, as if the population hadn’t yet exploded and social media was never invented; they seem more highly evolved.
My father worked for the state for 30 years and receives excellent benefits. He can pay for his own assisted living. But many other seniors aren’t as fortunate. If their middle-aged children can’t afford to get help for their parents, they often become their caretakers. It is an issue we will undoubtedly see more and more as baby boomers continue to age.
MY FATHER’S DECLINE HAS TAKEN BOTH OF US FULL CIRCLE AND BROUGHT US CLOSE AGAIN, AS WE WERE WHEN I WAS A CHILD.
It’s not just the sharing we do during daily phone conversations but the intimacy brought about by my caretaking when we are together.
I’ve got helping him stand up down to an art form; I guide him through doorways and around corners in public; I waited outside the Barnes and Noble restroom—after I’d partially cracked the door with the trash can—to make sure he was managing alright.
At breakfast three days later—the morning we would all leave—I helped him navigate his meal. I poured his syrup, wiped his nose and got him a straw for his juice. When Dad reached a trembling fork out to get the last sausage on the plate, I quickly stabbed it with my own fork, put it on his plate and cut it up for him. He glanced to the side at me, as usual, accepting the help without acknowledging it.
My brother gets impatient with what he sees as Dad’s stubbornness. I can’t get mad at my own DNA. Dad was raised in hard times and had to be strong at a very young age.
Similarly, I have trudged through some hellish fires over the years because I can’t bring myself to give up, even when it all looks black ahead. The urge to keep fighting throbs in my every cell. The first time Dad walked by the front desk at his assisted living residence and told them he was going for a walk, they were shocked. The man moves at a snail’s pace in his walker, and the store he likes to go to is three to four blocks away. But he went that day and he keeps going, about once a week. Dad is the comeback kid: just when you think he’s down, he swings again.
This is why it’s so hard to see his small stature hunched over his walker like a question mark. His body no longer suits his spirit. Fortunately, though, that spirit is still a beacon of light.
“Well, we didn’t get to go over that writing of mine, did we?” he said in reference to his own personal essays.
I reassured him we would have plenty of time to do that when I returned in two months.
When I slide into depression, I am inspired by my father. If he can keep writing, reading, walking and telling jokes while facing down three deadly diseases at age 81, then surely I can keep going. If he can have the patience to keep trying and trying, so can I.
Last summer, I was talking to the best Visiting Angel caretaker about my father’s hardheadedness. Her perspective on him was invaluable.
“It’s good to see that he’s still fighting,” she said. “A lot of people we see have given up, and they’re just waiting to die.”
I’m working on letting that knowledge ease my heart the next time I see my father struggle with a simple task.