Valentine’s Day last year, most of us had no idea of the drastic and looming changes that would disrupt our lives. We heard rumblings about a pandemic across the ocean. We heard about Chinese officials asking people to refrain from New Year travel. But it all seemed so far away. Then, in mid-March, the bottom fell out. Respite centers and daycares closed. Our memory care and medical appointments had to happen over a computer. We became isolated. Some of us watched loved ones deteriorate without consistent social outlets or exercise regimens.
So this year, I want to update my annual Valentine’s message to care partners of persons living with dementia. You are all heroes, true front-line caregivers:
Chocolates, plush animals, and romantic cards. Maybe even masks with cupid decorations. These are today’s Valentine’s Day staples. But want to see REAL LOVE in action? Watch a care partner for someone with dementia.
(Apologies to Saint Paul; I used his First Letter to the Corinthians, verses 4-13, as the platform for this post).
Love really tries to be patient. Especially when I try to figure out why a certain behavior is happening. Love is kind; I play to his or her strengths instead of dwelling on the not-so-great parts.
Love gently provides the same answer to the same question asked 6 times in the last 5 minutes. Especially about the masks we have to wear now. Love sweetly listens to the same stories over and over again. Love is entering the person with dementia’s reality to understand the behaviors.
Love is creative as I find meaningful activities that respect his or her preferences. Which is even tougher without respite programs. I’m grateful for the weekly Zoom sing-a-longs, but it is just not the same.
Love is accepting more care responsibilities because the home health agency has limited some of its services, due to the coronavirus. Or the services are available but I am nervous about having a parade of people into my home.
Love is laughing at oneself and seeing the humor in the situation. Love is understanding that the person with dementia is not doing things to be disagreeable; the person with dementia is trying to make sense out of a sometimes scary and nonsensical world with mixed-up memories.
Love is sometimes trying to be brave and cheerful when visiting my relative in an assisted living, plexiglass between us. Trying to explain why I can’t come in and hug her. So I tell her I have a bad cold and don’t want to get her sick.
Love is fighting to stay at his side while he is in the hospital, visiting restrictions be damned.
Love is becoming the memory. Love is helping to dress and bathe. Love is feeling thrilled that he put the left shoe on the left foot today. Love is feeling joy that she knows who I am today. Love is feeling triumphant because I figured out how to get him into the shower without a fight today. Love can be boastful: “Yay!! We had our first telehealth visit! Look what WE did!!”
Love is mastering ZOOM myself and helping my loved one connect with friends and family.
Love never fails, although I feel like I do at times. But where there are yucky days, and there seemed to be more this past year, they will pass. Where there are challenges, and 2020 felt like on long one, they will fade. For we know in part how to handle situations because we are learning, and every day brings more ideas and abilities than the one prior. Before I became a care partner, I talked, thought, and reasoned differently. When I became a care partner, I began to see the world through my loved one’s eyes.
Faith, hope, and love remain. My faith gives me the strength to do some pretty difficult things. My hope helps me to persevere, because I am optimistic that this journey will continue to yield positive and surprising lessons. But it is my love for my care partner, the greatest of the three, that make it all complete.
Happy Valentine’s Day to the greatest examples of love: the care partners for persons with dementia.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.