Caregiver Spotlight: Rachel Eisley
My older sister, Rachel Eisley, has agreed to be interviewed for my first installment of "Caregiver Spotlight". I want to highlight the diverse experiences caregivers have, and how we all process it differently. Rachel has been living a few hours away for the bulk of my mother's illness process, and has experienced it uniquely from me. Here she describes her experience being physically far, and the influence is has on her daily life. Thank you, Rachel, for contributing your thoughts!
What is the hardest part about being geographically far from mom?
The hardest thing about being geographically far from mom is knowing that if something happened or something changed, I couldn't be there immediately. Feeling separated from the rest of the family as they continue to deal with the illness' progression. When I was finishing my Masters and her illness was getting worse, I moved home for a few years, I felt then it was most important for me to be present. Now that she is in full-time care I feel more permission to focus back on my own life.
What are your main fears and anxieties about mom's condition?
My main fears about her illness is not knowing for sure what kind of pain she is experiencing because she is non-verbal, in addition to feeling worried about whether or not my sister and I will also have FTD in the future. Throughout her illness duration I have also personally struggled with how to stay supportive and helpful to family while also establishing my career, the balance of the two has often felt overwhelming to maintain. It's also been very difficult to witness my father slowly losing his life and business partner. I have deeply struggled with the many unknowns of FTD, what will come next, how long will my mother be living with this disease and whether or not I will develop it in the future.
How do you cope with your worries being far away?
I've chosen not to ever be located more than five hours from my family by car. I feel like that's a reasonable distance because I can be back home the same day if I needed to be. Knowing that I could make the trip in a day makes me feel less worried about whether or not something is going to happen with her, and whether or not I am going to be able to be there. I visit as often as I am able, calling and video-chatting to make sure everyone is ok. Focusing on my own work helps create forward progression in my life and allows for stability which helps me feel better about that part of my life while my family life is more difficult. I'm thankful that she has been in such a good care facility and that allowed me to move back to New York, and to focus on my life more. Feeling steady and established in my own life will help prepare me for dealing with her loss as her illness progresses.
What is your favorite memory of Mom?
Every time I think about what I love so much about my Mom is her incredible zeal for parenting, and how supportive she was of every single activity and educational opportunity that I wanted to pursue. Knowing that she was so encouraging makes me feel less guilty about not being as close geographically to her right now. I know she wouldn't want me to abandon my own life while she is ill and I believe she would want me to pursue my passions and interests in her absence. I recall all the theater and dance practices she took me to, piano lessons, swim team meets and other things that are influencing what I am doing today and it makes me feel like she would want me to be able to live my life and not be consumed by her illness. I am so thankful for her example as a confident, strong and elegant woman, capable of many complex responsibilities and roles: pianist, educator, gallerist, host, mother, and loving partner to my dad.