10 years ago Lindsey Jordan-Powell wrote about being a 16 year old caregiver for her father living with Alzheimer’s in The Shriver Report: A Woman’s Nation Takes on Alzheimer’s. Now looking back, she tells the WAM Weekly about her experience and the advice she has for other young caregivers.
WAM: When you wrote for The Shriver Report in 2010, you were 16 years old and a caregiver to a father with Alzheimer’s. What happened to your life as a caregiver over the next few years? Fill us in on the next part of that journey and what it was like for you.
Jordan-Powell: After I wrote my essay for the Shriver Report in 2010, I continued to advocate for Alzheimer’s by giving speeches, performing at events, and hosting my own benefit shows such as “A Concert To Remember” in 2011. My father, Charles Jordan, had moved into his care facility in 2008 and I would visit often and put on shows for the residents there as well. During high school, I tried to create some sense of normalcy. I was very involved at school, participated in multiple clubs, productions, and put on many Alzheimer’s awareness events around campus. I was also elected Student Body President and President of “CORE”, our community service honor society, during my senior year. My father passed away during my first year of college in 2013. I decided to take some time off from school and focused on moving forward and healing with my mother, Darlene. The next few years were definitely rough, but we eventually made it through thanks to the love and support of our amazing family and friends. The sun began to shine again and I was able to focus on myself for the first time in my life. I went back to school and am close to finishing up my degrees in Political Science and Theatre. I was able to get back into acting and met my husband while doing a production of “Avenue Q” in 2018. We’ve been married for a year and a half now and couldn’t be happier! In my original essay, I spoke about my father not being there for future milestones. \Now, I reflect on the reality of that statement as I graduated from high school, performed in shows, and got married without him being there. He wasn’t able to walk me down the aisle or meet my husband, but I was able to make it through the parts of my future that I had dreamed about with dread. I know he was smiling down from above and was with me every step of the way.
WAM: What were the biggest challenges to being a teenager with a father who couldn’t be a part of your daily life? Is it different from kids who have grandparents, rather than parents who are diagnosed?
Jordan-Powell: In my opinion, having a parent with Alzheimer’s is much different than having a grandparent with Alzheimer’s. My father started showing signs of dementia when I was in kindergarten. He was officially diagnosed with Alzheimer’s in 2002, I was 8 years old and he was only 51. For me, being a caregiver was my norm as I had been doing it for most of my life. It was definitely different living in the moment as opposed to looking back on it now so many years. Back then, I didn’t have any expectations about my father being able to attend big events or milestones because I knew that was never even a possibility. I used to say that we switched roles as I had to become a parent to him in most ways. I would wake up before school and help get him into the shower and feed him breakfast. During more lucid moments, it was sometimes difficult because he didn’t understand why he had to listen to me and didn’t want my help with minute tasks. It was very difficult for my mom because she had to go back to work part-time so that we could have some income. I ended up being homeschooled for middle school because my father couldn’t be left alone by that point. Since my father wasn’t very old and was physically fit, it was terrifying whenever he would walk out the door or get lost. There’s a different journey for a child taking care of their parent as opposed to their grandparent. As a child, you expect to be taken care of by your parents and they are equivalent to a superhero in your eyes. Watching a parent forget who you are at such a young age is a difficult thing to process as a child.
WAM: When you were in high school. How did you organize your life practically to be supportive of your mother and any other caregivers who participated in your father’s care? Did you have schedules and calendars, or did you wing it daily?
Jordan-Powell: My father was placed into a care facility the summer before I started high school. We actually moved because his facility was about 60 miles away from our home. They were the only facility that would take him due to his being so young. When we placed him into the facility, he was battling with the final stages of Alzheimer’s. Being back in school, I had to factor in my academics and extracurricular activities as well. My mother and I would visit him and would try to feed him but he wasn’t eating much by then. He couldn’t really talk anymore and wasn’t able to recognize us when we visited. I would always sing to him when I visited because it would spark something inside of him and he would return for a few moments. My father would wake up every morning and would walk around the whole facility non-stop until dinner. He used to run an X-Ray Department, so we always figured that he thought he was running around at work. He started losing weight rapidly and was eventually bedridden. We had the best team caring for my father and we’ll be forever grateful to them all.
WAM: What is the advice you offer other teenagers dealing with caregiving for someone with Alzheimer’s? What did you learn that can help them?
Jordan-Powell: I gained a whole new perspective as I got older and had time to reflect. When I was younger, caregiving was my duty and I wasn’t disappointed that I had to miss out on the kid aspects of my childhood. I loved my father and would do it all over again if I had to. I never really got to know my father before he started his journey with Alzheimer’s. If you’re a kid dealing with a parent that has this horrible disease, try to live in the moment and don’t take what time you have left with them for granted. Ask all of the questions, ask to be told stories from their past before they can’t remember them themselves. I hear stories from other people about my father but I never got the chance to hear about his life straight from the source. Never stop creating memories for yourself because those memories will be treasures that’ll stay with you for your entire life. Trust those around you and ask for help when you need it. Your family is always a great team to confide in, but remember that everyone deals with their struggles in different ways. In my case, some family members were very helpful while some were finding it difficult to come to terms with the diagnosis and everything that came after. I’m so grateful for my amazing family as well as my chosen family, my friends, because they were the ones that were truly there for us and still continue to shower us with their unconditional love and support. Lastly, continue to love your parent through the good and the bad. Alzheimer’s can make people do things that they normally wouldn’t do, and I would always remind myself of that during new or tough times. Whenever he would do things like have an outburst or take all of his clothes off in a public restroom, I would always help him without judgement because that was the Alzheimer’s speaking. Stay strong and continue fighting because there is a light at the end of the tunnel. I felt a sense of peace while moving towards the final stages of this disease because I knew that I had done everything that I could to help him. I was happy that he would finally be able to rest peacefully after all of the years that he suffered.
Thank you to Maria Shriver and everyone involved with The Women’s Alzheimer’s Movement for continuing the fight against Alzheimer’s.
Read Lindsey Jordan-Powell’s original essay for The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, here.