My friend and neighbor, Joe, was in his 80s. His wife, who had been his ears since he lost his hearing in his 30s, had died. The natural thing for me was to basically adopt Joe. I became his ears and his helper. My young sons joined me in helping out. Now grown, they’ve got many “Joe stories” that pop up during our casual conversations.
The fact that Joe needed help was obvious. However, he was my first care receiver, other than my grandmother who lived with us when I was a teenager. That was different, since with Grandma my parents were mostly in charge. Joe learned to depend on my daily visits for company and my help with doctors, groceries and some small chores. But I learned from Joe, that there is a line that we caregivers should not cross, and that line isn’t always clear.
Joe was an independent guy and liked living alone in his old fashioned house. He loved birds, and he fed them all year long. During our long, snowy winters, Joe would insist on filling the bird feeder himself, even though I wanted to relieve him of that “chore,” as it was dangerous for him to go down his two back steps and out to the feeder. However, Joe had a clothesline set up so he could grab it for balance. He’d slide along, holding onto the line, as he carefully found his way out into the yard to the feeders, which hung from the far end of the clothesline pole.
I could see Joe through my kitchen window and I’d literally hold my breath as I watched him shuffle out to feed his beloved sparrows and the few blue jays that were brave enough to tough out our winters. But I left him alone. He’d made it plain that this was one of his few joys and he was going to do it. I knew that after he’d fill the feeders, he’d go into his kitchen and sit at the table to watch as the birds came to feed. I could not take that from him, even if it meant that he risked falling. It was hard for me, but I knew it was just as it had to be.
Multiple Care Receivers Mean More Chances to be Wrong
Joe was good training for me, as the future lead me into caring, over time, for six other elders. All were family. There was a time I was juggling five frail elder situations as well as caring for my two young kids. It was hectic, to say the least. There were four developing dementias, all different. With each person, I had a new learning experience. How much help should I offer, and at what stage? How much was good for them and how much was doing too much, perhaps denying them the joy of accomplishment or their dignity? This question was always there, and the proper answers changed with the person and the day.
I needed to be time efficient, especially during the time that my mom was in her apartment, my dad had moved a nursing home where my uncle had lived since his last stroke, and my mother-in-law lived in her condo. All needed help. Mom needed me each morning to help her shower and do other morning chores to get her going. Later, she would need me to pick her up and take her to visit my dad and uncle. We’d do that together, and then I’d take her home. In the middle, I’d run errands for them all, get my mother-in-law lunch and tend to her other needs, and also get my children to and from school. You caregivers know the drill.
During this time, and during all of my caregiving for that matter, there were times when it would have been easier for me to just “do it all.” And, indeed, I often did. I spoiled everyone by my doing it all. And most of what I did was appreciated. However, as I look back I wonder if I was always wise. Of course hindsight is perfect. But should I have left more chores for my mother to do, even though the pain from her severe arthritis made every movement excruciating? Should I have pushed my dad more, when he was in a sleepy mood and didn’t want to do anything, rather than just say, “Let him sleep. He’s earned it?”
A man recently asked in a forum, “Can you care too much?” His wife has Alzheimer’s disease and he wonders how much he should do for her and how much frustration he should let her suffer. All I did was share my experience and tell him I was, I’m sure, often wrong. I tried to help my elders without taking away anything they wanted to do for themselves. But often that line wasn’t clear until I’d done something for them, and then they seemed annoyed. Yet, if I just stood and watched them struggle, was that right? Especially, when they resented that, as well?
As caregivers, we sometimes have to go with our gut. We’ll often do the right thing. We’ll occasionally do the wrong thing. Many times we won’t know which it was - right or wrong. We have to learn to live with not knowing. We have to also learn to forgive ourselves for sometimes guessing wrong. We do our best. We’ll never do it 100 percent right.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.