Unpaid caregivers are the superheroes for Kansans who have Alzheimer’s I Commentary

I recently attended a meeting where during an ice-breaker activity I was asked to tell a little about myself, including my chosen superpower, if I could actually have one. I thought of the ability to fly, be invisible or heal.

But in my 20 years of working for the Alzheimer’s Association, I have learned that there is one superpower above all others — the ability to caregive. In the dictionary, the definition for superhero is “a benevolent fictional character with superhuman powers.” Substitute “real” for “fictional” and you have the true definition of caregiver.

In Kansas there are 55,000 individuals with Alzheimer’s disease and 85,000 caregivers providing unpaid care for them, valued at $1.3 billion. There are many different kinds of caregivers — some live with their loved one, some are long-distance or part-time caregivers who share responsibilities. The fact is, no matter where you fall in the caregiving scheme, you are a caregiver because you choose to be one. The caregiver experience can be exhausting, leaving little energy for yourself or your own family.

This month is National Family Caregivers Month, so join me in recognizing Alzheimer’s caregivers for all they do every day.

Christy Barnett is a long-distance caregiver for her mother. She drives six hours one way to visit her. Barnett says, “When someone is given an Alzheimer’s diagnosis, the worst thing that can happen is that friends disappear from their world. I have a lot of guilt because I can’t be with my mom every day and it would help if friends could stay connected.” Barnett suggests that if another family member or friend does visit her mom, that they send her a text to let her know because it helps her realize that her mother is not alone.

Al Melichar is a caregiver for his wife, Turi. They have been married 53 years and he has been by her side every step of her 13-year Alzheimer’s journey. “I’m the kind of person who needs as much information as I can get my hands on. It took a while for me to accept it, but thanks to the education classes and support groups that the Alzheimer’s Association provides, I’m getting through it,” Melichar says. He meets a group of men every morning for breakfast to help him start the day, then he goes to visit his wife. “The best thing someone can do for a caregiver like me is to offer kind support, prayer, and wish us well — that is much better than trying to give advice.”

Susan Peters traveled across the country to be with her mother once a month as she shared caregiving responsibilities with her siblings. Peters says, “I will always treasure the moments of joy I had with my mother.” She says that not being able to be with her mother every day made her realize that she was missing out on precious moments that she knew would become fewer and fewer as dementia progressed. That realization taught Peters to enjoy each moment, including laughing together. She says the best gift a friend could give a caregiver is one hour of respite. “Just a short break can make all the difference for a caregiver.”

All of these superhero caregivers know that Alzheimer’s or dementia is their nemesis and they need our help to fight it. Learn more at alz.org so you can be better supporters of the caregiver. The more you know, the better you will understand and the more you can relate. If you have questions, call the Alzheimer’s Association 24/7 Helpline at 800-272-3900.

The holidays are around the corner and that can add to the caregiver stress. Consider tackling a to-do list for the caregiver, offer to bring a holiday meal, or simply check in with a phone call or text. There is a caregiver out there waiting for you to honor them. Now go and do the right thing.