I take my place in a comfortable chair at an Alzheimer’s support group session with the usual participants; mostly older women serving in the role of unpaid care partner to an aging loved one.
At the opposite end of the room sitting quietly is a twenty-something, striking among the gray hairs with her flowing auburn locks and beautiful brown eyes. Those eyes however carry undue burden for such a young person.
In the course of the evening Emily introduces herself and shares her story. She’s soft-spoken in a way that draws you in quickly and completely. Emily’s been caring for her mother Jane, diagnosed with early onset Alzheimer’s when Emily was just 20 years old.
The last straw bringing Emily to the support group on this cold, winter night was an intervention she led taking the car keys away from her mom. I listen to Emily recount all the rational reasons why she had to do it while fighting back tears. Her story instantly transports me back to the moment I took the car keys away from my mother.
My mom had been living with our family for years after dad died. She displayed signs of dementia we were all blind to, until her hallucinations and delusions turned dark and violent. I was 50 years old when I took the cars keys from my mother, thirty years of life experience more than Emily when forced to remove a parent’s universal symbol of independence.
Emily’s voice brings me back to the room as she shares an even more profound tale; her head hangs heavy describing a tragic love story.
She and her boyfriend had been together since high school. She imagined they’d survived insurmountable odds. She believed the union solid until the day he bolted, no longer able to support Emily’s caregiving role. She didn’t blame him, taking on her perceived fate without protest.
With such heavy responsibilities, how could she spare time to find or nurture a new relationship? Emily was convinced she’d have to sustain alone.
Although it’s been years since that night, I’m reminded of Emily reading the report recently published by the Journal of Neurology, Neurosurgery and Psychiatry stating, “People who have been single all of their lives have a 42% higher risk of developing dementia.” Agree with the study or not, it suggests there may be a causal link to being in a significant relationship with a healthier life style and stronger social stimulation that can reduce the risk of these brain diseases.
Millennials should take special note given they now make up ~25% of all Alzheimer family care partners in the US; as they care for parents, grandparents or other loved ones. And the ranks of millennial care partners continue to grow.
There are many lessons we can take from attempting to balance caring with relationships. As a dementia caregiving survivor, many of these lessons I learned the hard way:
Socializing beyond caregiving is not only good for you, it’s good for the person you care for – Caring relationships become destructive when a primary care partner believes no one else is capable of providing care. Both the caregiver and the individual in care benefit from social interaction beyond just each other. It’s critical to make room for support, allowing time to focus on self-care.
You may be in the role of care partner for a long time, pace yourself – Care through aging or debilitating illness often requires the skill of a marathoner, not a sprinter. My mother and I shared 18 years together through dementia, something I never planned on top of a busy work and family life. No matter how worn out you feel, schedule time in your calendar to be with others who support YOU. Only by nurturing your most significant relationships will you find emotional support when you need it most.
Consider channels to connect with others you might not have used in the past – You may have dismissed these however online dating services and social networking sites can provide opportunity to connect with others who share your interests and your burdens. Built-in flexibility with these sites may better support your caring commitments. You can utilize filters and search functions to help zero-in on the type of support and relationship you need. I found a compassionate group of individuals through a social networking site that enabled me to believe in myself and begin writing about my dementia caregiving survival story.
Understand: the right match for you may take time – Be selfish and don’t settle for those who don’t understand or support your caring role. The last thing you need in your busy life is more people to care for!
Research tells us it’s critically important to build strong relationships in our lives in order to be healthy. In caregiving, it’s too easy to lose yourself along the journey while you focus on your loved one. It’s difficult to do, but find balance in your life by prioritizing YOURSELF near the top of all other caring responsibilities.
Remember to put your oxygen mask on first, before assisting others.
Lisa B. Capp is a writer, activist and dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board for the Desert Southwest, is a member of the Alzheimer’s Impact Movement (AIM) and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profit organizations around the globe. Her passion now is focused on empowering dementia caregivers to survive their journey with grace.
Join Lisa in a conversation about grace on Twitter @lisabcapp and LinkedIn at LisaBCapp.