I am my dad’s caretaker.
He was diagnosed with dementia two years ago.
My role as his daughter has since significantly diminished; he now needs me to be more like his mom.
It’s been an adjustment for us both.
Dad is losing his short-term memory more quickly than either of us are comfortable with, but he is still able to clean his house, cook his meals, and drive to the grocery store and back. He is divorced and has been alone for 10 years. If he’s being honest, he’ll tell you he likes it that way.
We talk almost every day. Some days, he is upbeat and cheerful and happy to hear my voice. These are the days we talk about his beloved rock garden, how many hummingbirds saddled up to the feeder, and the dreaded W word (wind). He’ll tell me about his latest excursion to Walmart, and you can bet he wants to consult the calendar I created for him to confirm upcoming doctor appointments.
On other days, when his voice is somber, gloomy, and sulking, it’s a dead giveaway that he’s swirling in a mix of confusion, laced with upset, jumbled up with frustration.
Much of his distress comes from everyday electronics—his computer screen is blank, the garage door won’t open, or one of the smoke alarms is chirping—and his knee-jerk solution of indiscriminately pressing buttons or flipping circuit breakers before calling me always compounds the issue.
Sometimes he can’t find his dentures or a pen.
Most of these issues are now taken care of by an old friend who moved in last September at my request and insistence. Dad didn’t want the company. I told him it was the only way he could continue living in the house as long as possible. That’s my promise—for as long as possible. He relented. Dad now has someone on-site to watch out for him, change the batteries in his remote, and be my eyes and ears.
It gives me peace of mind. I think it gives him peace of mind too.
The stressful calls have thankfully dissipated, and most days, Dad is cheerful unless the dreaded W word is swirling.
This week, though, he called with an entirely different issue—a matter of the heart.
Dad had written a letter to my sister’s eldest son for his 18th birthday. He was so proud of himself he was crooning like a rooster. He wanted to read it to me, but as he began, his voice cracked and he kept clearing his throat.
It turns out this letter was an attempt at amends. In chicken-scratch scrawl that even he had trouble reading, Dad wrote how sorry he was for being absent, for missing past birthday celebrations, for not being a good grandpa. His words oozed with regret and pain.
I stopped doing the dishes and really listened to him, his emotion, and his distress.
Dad was an absent father. He’s been an absent grandfather, too.
Unfortunately, these late-life realizations are occurring through the lens of dementia. Dad is looking back just as his memories fade. Each hazy, vague, just-out-of-reach recollection flirts with and then mocks him, before being carried away by the dreaded W word. Perhaps that’s why it irks him so much.
Dementia is a cruel jailor. Every day, it seems, another memory is locked away.
Dementia also seems to enjoy wreaking emotional havoc. Today, Dad remembered that his life wasn’t always well-lived, and his inner critic (a constant companion who continues to play an oversized role) launched a withering attack.
He kept telling me he was confused and didn’t know what he was supposed to do.
Being Dad’s person takes a toll. At the end of hard days, it can feel like I’ve been through an emotional war. It’s devastating to watch someone I love continually be rearranged, and then rearranged again, in a constant shuffle.
In this moment, in this matter of the heart, what he needed most was comfort and reassurance. He was beating himself up and needed permission to quit punching.
He needed me to see him through a soft lens and accept him for who he is now, not judge him for who he once was, and to feel tender in our connection today rather than lament how different it used to be.
He needed to know acceptance in order to access acceptance for himself. He needed to feel forgiveness to allow forgiveness.
Dad once said that I reminded him of his mom, and it was with my Gram’s grace that I tried to help him move through his overwhelming regret.
Deep feelings are not something Dad tends to dwell in. They are too difficult; he feels too exposed. I knew I only had a short window before his convoluted mind shut down tight again.
“Everybody is mad at me,” he said quietly.
“That isn’t true, Dad. No one is mad.”
“But I wasn’t there.”
“You’re here now. The past doesn’t matter in the grand scheme of things. You only have the present. By sending the birthday card, you are showing up now, and that’s what matters.”
Silence for a minute as he mulled it over. I let him feel.
“I screwed up,” he said defeatedly.
“Everyone screws up sometimes. You did the best you could.”
“I missed out.”
“I know you did.”
Like a small child he then asked, “Am I okay?”
“Yes, Dad, you’re okay. I love you.”
“Should I send the card?”
“Okay, I will.”
I am not sure I helped my Dad accept himself so much as I pacified him in the moment, but I do know that I tried to hold a mirror up for him to see himself as I see him: sweet, tortured, kind-hearted, beloved, perfectly imperfect.
The next day, Dad cheerfully called to tell me he had sent the birthday card.
It was sent with a lot of pent-up love.