As the daughter of an extraordinary woman living with Alzheimer’s, often people who meet us together for the first time will ask me if I am also ‘Marlene’s caregiver.’ The title has never been one that I have accepted for myself since my mother has other family members who also ‘give’ their time in ‘caring’ for her. So I’ve always struggled with the title.
I participate often in a monthly Alzheimer’s support group and recently I posed this question to the other members: “Do you all consider yourselves caregivers?” There were 10 people in attendance and at first everyone looked at each other to see who would raise their hand as a vote of yes. Surprisingly, only half did. I then asked a follow-up question: “What do you consider your role to be?” One of the participants whose husband has dementia offered a very simple answer, “I am my husband’s wife for better or worse.” That silenced me in that moment and confirmed my own role in my mother’s life and how it has not changed from when she raised me as a child to how I care for her as an adult. I am simply her daughter.
The members of my support group and I all agreed on one thing - that caring for someone full-time is truly a calling and not everyone can do it. It takes special patience, and the ability to see the joy, beauty and wonder in the little things that your loved one can still do day-to-day.
Over the past few months my mother has been slowly losing her ability to feed herself. But then one Saturday morning this month, I made her favorite peaches & cream oatmeal and placed the bowl in front of her then stepped away to get her some milk. As I finished pouring her a cup, I walked back to the table to then begin feeding her. I stopped dead in my tracks when I saw that my mom was not only holding the spoon and feeding herself but was halfway done! In that moment I was as proud of her as I have ALWAYS been throughout all of her accomplishments and I didn’t see my role as her caregiver but instead as one of my callings in life to always support her.
The title caregiver is best described as - a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person. Don’t get me wrong, I totally agree that the term caregiver is needed as a distinct identifier to describe what more than 15 million caregivers* in this country alone do every day and the majority often unpaid.
Last week, Juliet Holt Klinger described the role as a partnership and suggested we shift from the term Caregiver to Care Partner. That’s what I do with my mother as we are on this journey together. I don't see myself as Marlene’s caregiver - I am Marlene’s daughter who loves her dearly. Caring for her comes with the territory and it is my honor to serve her.
*2016 Alzheimer’s Disease Facts and Figures report