My husband and I are currently under contract on a beautiful house here in Florida. For the first time, I am actually excited about living in Florida. Hell, this is the first time in a very long time that I’m actually excited about anything at all. I’m just not a very excitable person. I tend to be more of a Grumpy Cat. I’m here. I’m breathing. I get it. I just don’t get that excited about things. But, for the first time in a very long time, I’m actually excited about something. And you know what, I couldn’t possibly feel any guiltier.
Ugh. This sucks. So much.
You might be asking yourself why I feel so guilty for being excited about buying a house. The thing with having a parent who has Alzheimer’s is that you feel guilty about pretty much everything. This current dose of guilt is a little bit different because it doesn’t really have anything to do with being a caregiver. It has more to do with being a daughter.
Over the years, I have convinced myself that I have no right having a life outside of Alzheimer’s and my parents. I have convinced myself that all of my time and all of my thoughts must center around my mom and dad and what they’re going through. I felt like I always had to be thinking about my mom and her Alzheimer’s. I always had to be thinking about my dad and what he is going through as her full-time caregiver. I felt like I always had to be doing something to help or support them and if I couldn’t do that, then I must just sit and torture myself thinking about the sad reality of their daily lives. And at times when I realized that I hadn’t been thinking of them for a while or that I had been thinking more about something else, I redirected my thoughts back to them and Alzheimer’s. How dare I ever think about anything else!
Knowing what my parents are going through all day every day has made me feel extremely guilty for having an escape. I always felt guilty that I had my own house to go home to and my own family to spend time with. I felt guilty for having time to sleep in, go to the gym, or hang out with friends. I felt guilty for being able to go away on vacations with my husband. My dad doesn’t have the option to do any of those things. He has no escape from his caregiving role. Even though he’s able to go out for a few hours each day, he’s never really able to escape it. Why should I have the option to live a life outside of Alzheimer’s when he doesn’t? Why should I be able to be happy and enjoy life when he can’t?
Feeling this way has kept me from doing so many things. For one thing, I am very limited with what I share with my dad. I don’t want to tell him about vacations or send him pictures because I don’t want to feel like I’m rubbing it in his face. I hesitate to share good news with him because I don’t want him to be resentful. I hesitate to share bad news with him because I don’t want him to feel like I’m complaining about nothing. I never ask him for help or advice because I don’t want to add more to his plate. I also feel like sometimes he doesn’t really care what’s going on in my life because he’s so overwhelmed in his own. He often has very short responses and doesn’t seem to be all that interested. Sometimes I don’t bother sharing things with him because I don’t want to be disappointed when he doesn’t seem to care. It’s hard, especially during times like this when we’re buying a house and I hear my husband talking to his parents about it, but it is what it is. Basically, there’s a lot I don’t tell him about my life.
Feeling this way has also prevented me from writing about anything other than Alzheimer’s. I really started writing when I started my blog a few years ago. It’s hard for me to write about anything else because I feel like I’m cheating on Alzheimer’s. I feel like I can’t justify taking the time to write about anything else. I’ve been a runner for much longer than my mom has had Alzheimer’s, but for a while I had convinced myself that I should only run races that raised money for the disease. I also convinced myself that I had to wear purple in every single race I ran as a way to honor my mom. I realize now how ridiculous that sounds. My mom didn’t get me into running. She never ran a day in her life. Alzheimer’s didn’t get me into running. I started running over twelve years ago to get in shape for the police academy. Truthfully, aside from running races to raise money for Alzheimer’s, one really has nothing to do with the other. Running has always been my thing, so why should I feel the need to make it all about Alzheimer’s now that my mom has the disease? Why should I feel the need to make my whole entire life about Alzheimer’s? Am I not entitled to a life outside of Alzheimer’s?
Of course, I am! I have learned (or rather, am currently still learning) that I am allowed to have a life outside of Alzheimer’s. I’m allowed to enjoy things that have nothing to do with Alzheimer’s. I’m allowed to sleep in, go to the gym, or spend time with friends whose parents don’t have Alzheimer’s. I’m allowed to watch movies or shows and read books or articles that are not about Alzheimer’s. I’m allowed to write about things other than Alzheimer’s and run races that don’t raise money for Alzheimer’s. I’m allowed to go on vacations with my husband and take a bazillion pictures. I’m allowed to cuddle with my dogs and take naps and go shopping. I’m allowed to get really excited about buying a beautiful home in Florida and creating a beautiful life there. I’m allowed to enjoy a life outside of Alzheimer’s. I should never feel guilty for that. And neither should you.
This Alzheimer’s stuff is hard. There’s a lot to learn along this journey. Someone else can tell you something a thousand times, but you won’t believe it until you learn it for yourself. Everyone in my life always told me that I shouldn’t feel guilty for living my life, but I never believed it. I’m learning now that it’s ok. My mom has lost so much of her life to Alzheimer’s. My dad has lost so much of his life in caring for her. Why should I give up my life, as well? My parents struggled to get pregnant for fifteen years before they had my sister and me. My parents gave me this life so I can live it the best way I possibly can. I’m not about to disappoint them.
Lauren Dykovitz is a blogger and author. She lives in Florida with her husband and two black labs. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010 at age 62. Lauren was only 25 years old at the time. Jerie is still living with advanced Alzheimer’s.
Lauren writes about her experience on her blog, “Life, Love, and Alzheimer’s.” She has also been a contributing writer for several other Alzheimer’s blogs and websites. Lauren self-published her first book, “Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s.” She is also a member of AlzAuthors, a group of over 160 authors who have written books about Alzheimer’s and dementia.
Please visit lifeloveandalzheimers.com to read more about Lauren’s journey.