In the Era of Caregiving: Relationship Reality Bites
March 19, 2018
In the Era of Caregiving: Relationship Reality Bites

By: Lisa B. Capp

I take my place at the conference table for an Alzheimer's support group session with the usual participants; mostly older women serving in the role of unpaid caregiver to an aging loved one. 

At the opposite end of the room sitting quietly and alone is a twenty-something woman, striking among the gray hairs with flowing auburn locks and beautiful brown eyes. Those eyes, however, carry undue amounts of burden for such a young person.

In the course of the evening, she introduces herself as Emily sharing her story in a soft-spoken fashion that draws you in quickly and completely. Emily has been caring for her mother Jane, diagnosed with early onset Alzheimer's when mom was 42 and 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 to take the car keys away from mom. I listen to Emily recount all the rational reasons why she had to, while fighting back her tears. Her story instantly brings me back to the moment I took the car keys away from my mother. 

My mom had been living with my family for nine 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 more years of life experience than Emily when forced to remove the universal symbol of one's independence from a parent.

Emily's voice brings me back to the room as she shares an even more profound tale; her head hangs heavy describing young love. She and her boyfriend had been together through high school, college and into adulthood. 

She imagined they'd survived insurmountable odds, declaring 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 caregiving 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." The study suggests there may be causal effects to being in a significant relationship including a healthy lifestyle and social stimulation that can reduce the risk of the disease.

Millennials should take special note given they now make up ~25% of all Alzheimer family caregivers in the US, caring for either parents or grandparents. And the millennial caregiving ranks continue to grow. 

There are many lessons we can take from attempting to balance caregiving with relationships. As a dementia caregiving survivor, many of these lessons I learned the hard way:

  1. 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 caregiver 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 you time to focus on self-care.

  2. You may be in the role of caregiver for a long time, pace yourself - Care through aging or a debilitating illness often requires the skill of a marathoner, not a sprinter. My mother and I shared an 18-year journey 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 most need it.

  3. Consider channels to connect with others you might never have used in the past - You may not think of yourself as an online dating-type however dating services like eHarmony and social networking sites like Meetup can provide opportunity to connect with others who share your interests and your burdens. Built-in flexibility with these sites may better support your caregiving commitments. You can utilize filters in dating sites and search functions in networking sites to help zero-in on the type of support you need, making it possible to bypass some opportunities for inappropriate relationships. 

  4. Understand: the right match for you may take time - Be selfish and don't settle for those who don't understand or support your caregiving role. The last thing you need in your busy life is one more person 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. Find balance in your life by prioritizing YOURSELF near the top of all other caregiving responsibilities. 

Remember: put your oxygen mask on first, before assisting others.

Lisa B Capp is a blogger, an activist and a dementia caregiving survivor. She serves as a co-chair to Alzheimer's Association Leadership Board (Vermont), member of the Alzheimer's Impact Movement (AIM), and AlzAuthors. As a High Tech Change Consultant, Lisa's worked with leaders of global business, government agencies and non-profits. Her passion for building strength through transition is now focused on helping others find their power through the caregiving journey. --- Permission granted for use on

Posted by Staff at 10:09 AM