Third Hand: I'm A Backup Caregiver and I'm 200 Miles Away

Jun 09, 2024

Participating in my dad's care from a distance can be challenging, so here are some observations from my experiences

In the last year, my father — who has lived a long and robust life — has declined and is physically and mentally frail. Our family is saddened by his decline. Dad's mental state has often been sharper than those around him, so it is devastating when it is not.

I bragged to Dad recently that because of the books I've read, he could quiz me on any World War II battle date. "When was the Battle of the Bulge?" he asked about one of the most famous. I missed it by a year. Lesson learned: don't mess with an expert who's been reading World War II books 25 years longer than you have.

With me hours away, Andy, my only sibling, is Dad's primary caregiver.

In the Midwest, we characterize travel by how long the drive takes — the trip to Dad's is about four-and-a-half hours. We lose an hour going from Central to Eastern time. To arrive before noon, we leave around six a.m. if we include refueling and bathroom stops. With me hours away, Andy, my only sibling, is Dad's primary caregiver.

Andy helps Dad almost daily. Dad has lost much — mobility, eyesight, and overall strength and health. Andy takes Dad to doctor's appointments, takes him on short day trips, and brings him chocolate and other sweet goodies. Andy is the primary family contact for the facility. He lives about two miles away from Dad. I am the backup person.

My brother relays information well, but I sometimes need help. I worked in health care. I am interested in specific values from tests. My brother is more of a bottom-line person. We have worked this out; now that Dad is in assisted living, I have access to his medical portals to track his blood pressure and learn of changes in medication or doses.

Going to the dining room is like eating at a restaurant meal. It was important to Dad that Mom looked nice.

Dad uses incontinence products, which he bought in the basement store at the facility. He may have been too embarrassed to ask my brother for help. But the pads were poor quality, and Dad threw some clothes away, which tipped the nurses off to a more significant problem. So I thought, "This is an easy one. I can find out what he needs and have it sent monthly."

In what may have been a foolish idea, I asked my colorblind brother what I should get. His answer was, "Get the blue ones." Did he mean blue packaging or actual blue garments? Or did he mean green? Or magenta, the Pantone color of the year? No one will ever know.

I called the nurse's station for a recommendation. Dad gets excellent care, and I assumed they would know a particular brand for him. I expected a specific answer, Product X, Size X, and Thickness X. Instead, the nurse called me back and said, "I checked with the floor staff, and they think that Depends is the best."

Got it. Blue. Depends.

I'll be all over that.

If I don't laugh about this, I will cry.

When my mom was alive, Dad took meticulous care of her. She had vascular dementia. Dad helped her shower, placed her dental bridge each morning, put her earrings and jewelry on her, and dressed her. He insisted I take her shopping for new and fashionable outfits. Going to the dining room is like eating at a restaurant meal. It was important to Dad that Mom looked nice.

Knowing how Dad felt about Mom's appearance, it is hard to understand that Dad doesn't hold the same stock on his own. He is stubborn about his clothes and would only buy pants from a Yoder's in Shipshewana, Indiana, 150 miles away. We tried ordering from there, and it didn't work.

He was never happy with what he got. Meanwhile, with aging, he was losing weight, His pants often sag, and he holds them up with suspenders. My brother solved this problem so brilliantly. Andy bought Dad several pairs of pants, shirts and pajamas.

As family members, we share the same motivation: the best care and life possible for the loved one in decline.

While Dad and his girlfriend ate dinner two floors down in the main dining room, Andy put the clothes away in Dad's closet, and Dad would wear the items. Did he know they were new? We're not sure.

My mother didn't work outside the home and spent about 15 years as the primary caregiver for her parents. Her only sister lived on the East Coast and visited once or twice a year. My aunt was lovely and charitable, but Mom sometimes felt her visits were an inspection tour. Like me, my aunt wanted to help, and it was challenging to weigh in from a distance.

I've understood that hard place on either side, as the caregiver who lives nearby and the backup who lives far away. As family members, we share the same motivation: the best care and life possible for the loved one in decline.

So I've worked to be helpful and not critical, which is tough. Here are some thoughts from my experiences.

At 93, he still engages in the world with a failing mind and body. Since college, Dad has played euchre, a card game popular in Indiana, Michigan, and Ohio. Dad always has a deck of cards in his Rollator seat.

Sometimes my brother will take Dad to play at his church or attend the Friday night euchre group at the facility. Dad and Andy, both agricultural majors, were members of the same fraternity at the same college, where euchre was popular. So when Dad and Andy are playing together, if they win a round, they yell, "Milk 'em, milk 'em, milk 'em," and then join hands in a motion like they are milking cows.

Dad can't remember what time church starts but knows all the moves he played in 1949 in the card game. What a gift when we can still see his flashes of brilliance and humor and still get a bear hug.