- By Donna Jackel
When my widowed father suffered a major heart attack, I overnight joined the 44 million Americans caring for a family member aged 50 and older. According to the National Alliance for Caregiving, 66 percent of us are women.
My father, Max, had to move from Asheville, N.C. to Rochester, N.Y., where I live with my husband and two children, so I could care for him. He barely survived the flight. At 86, with his heart pumping at 35 percent capacity, he was a fragile ecosystem, dependent on a regimen of pills to keep him going.
'I Aim to Thrive 'Til 95'
Gradually, my father adjusted to his new home and regained some strength. He moved from assisted living to independent. He talked hopefully about driving again and informed his doctor, “I aim to thrive 'til 95.” He flirted with his nurse and cheered his team, the New York Giants, onto victory in the Super Bowl.
But in his 89th year, Max’s body stopped responding to the medications. His cardiologist recommended him for home hospice care. Max changed his anthem to “89 and doing fine.” His will to live never wavered. For inspiration, he quoted from a Dylan Thomas poem, “Do not go gentle into that night… Rage, rage against the dying of the light.”
Max, the youngest of five, was born on the kitchen table in an apartment on New York City’s Lower East Side, so it made sense that he wanted to die in his own bed. I was proud I made that possible, with the help of the hospice team.
A Bolt of Jealousy
Shortly after his death, I ran into a woman who had visited my dad weekly through the home hospice volunteer program. Curious, I asked about their last visit. “He was very weak. We sat on the couch and held hands, and I read him the paper,” she said.
I felt a bolt of jealousy. My dad and I never held hands.
I began to reflect on our time together those last months. I had no regrets over the life-altering decisions I'd made: Uprooting my dad had been a necessity. We had found him an excellent medical team; Max chose his senior citizen community where the residents looked “happy and relaxed.”
To my surprise, the words not spoken and simple deeds left undone were what filled me with remorse.
My Regrets and Wishes
Here's the advice I would give myself if I had to do it over again. Maybe what I learned can help other caregivers.
More TLC I'm sorry I didn't give my dad more hugs, kisses and “I love you’s.” This is a common regret, says Brian D. Carpenter, an associate professor of psychology at Washington University in St. Louis, Mo. “Caregivers often wish they had been more emotionally open with family members, disclosed more about their feelings, both positive and negative … [and] made more physical contact," he says.
Withholding emotions can also be a form of self-protection, says Randy Kamen Gredinger, a psychologist and educator who writes regularly for her website, drrkg.com. “The anger, sadness and guilt are complicated, painful feelings that people don’t want to feel, by and large,” she notes.
Express gratitude My dad taught me to ride a bike, drive a car and a lot more in between. I wish I had been better able to express my appreciation.
(MORE: How to Care for Your Parent Without Losing Your Job)
Share more simple pleasures I would have driven Max to Wal-Mart (he loved it; I hate it) and invited him to sit in my flower garden more frequently (it gave him such pleasure).
Be a more obedient child Max was the quintessential backseat driver. I would have driven slower, instead of taxing his frail heart.
Force yourself not to parent my parent I would not have nagged my dad for eating too much ice cream or drinking that extra glass of wine.
Seek respite I should have called upon friends to prepare a meal or run errands. “People often want to help more than you might expect,” says Gredinger.
Avoid martyrhood I waited way too long to ask my brother, who lives downstate, to visit more frequently. When I did, he was happy to.
Set boundaries I found it very difficult to say "no" to my dad. In retrospect, he was a reasonable man and I know that if there were days I couldn’t visit, he would have understood.
Don’t neglect others It’s painful to admit, but I know that while caring for my father, my family often got short shrift. They rarely complained, but looking back I would have divided my time more equitably.
BYOC (Be Your Own Caregiver) Next time I’m a caregiver, I will eat healthy, get eight hours sleep daily, exercise and splurge on a weekly massage and a monthly facial. That’s the way to go, says Gredinger. “Caring for yourself is of crucial importance if you want to provide optimal care for your loved one,” she adds.
Regrets, I have a few, but I also have immense satisfaction of knowing I made my dad’s last years good ones. Max looked forward to Sunday dinners at our home. We went to book sales, the barber and Chinese restaurants. I kept him well-stocked in creature comforts: a bottle of red wine, Lorna Doones, Cheerios, prunes, bananas, movies and thick historical books.
And to all you past, present and future caregivers, I say: Don’t judge yourself too harshly.
“It’s useful for people to think carefully about what happened,” says Carpenter. “[But] it’s water under the bridge and you can’t change things. Use your regrets as a chance to examine your values, your priorities, and put them into action moving forward.”