I see you, Alzheimer’s Daughter, trying to smile through the pain. I know how much it hurts. You feel as if both of your parents have just disappeared, vanished into some other world. Alzheimer’s World. They are gone forever. Only they’re not really gone. They’re still alive and, maybe, they live just a few miles away. They’re not gone, but they are gone. You didn’t lose them in an instant or in the blink of an eye. You lost them slowly and painfully over a long period of time. You want to see them, to talk to them, and you still can, but it’s not the same anymore. It will never be the same. Your mom has lost her mind and her identity to a progressive, degenerative, neurological disease. One for which there is no treatment and no cure. No hope. And, your dad has lost his mind and his identity in caring for her. There’s grief, but there’s no closure. There’s no healing. Your pain just continues to grow over the years with no end in sight.
I see you, Alzheimer’s Daughter, putting everyone else’s needs before your own. You feel obligated to help care for your parents the way they once cared for you. They gave you life and raised you right and you feel it is your duty to return the favor. How can you ever repay them for all that they’ve done for you? How could you ever just walk away when they need you most? You struggle to balance your home life, work life, family life, and social life. And yet, here you are helping your mom comb her hair, get dressed, or use the bathroom. Here you are calming her when she is agitated or trying to make her laugh when she is sad. Here you are distracting and redirecting her as she repeats herself over and over again. Here you are scheduling appointments for your dad and picking things up at the grocery store for him so he won’t have to go. And, here you are buying and wrapping Christmas presents for them to give to each other, while you still haven’t finished your own Christmas shopping. You do everything for everyone else, but tell me, who does things for you?
I see you, Alzheimer’s Daughter, scrolling through your Facebook feed, thinking to yourself, “Must be nice.” All of your friends and other people your age are out enjoying their lives. They are spending time with friends, family, their children, or their grandchildren. They are working their dream jobs and going on their dream vacations. They are complaining about problems that seem all too insignificant to you. You think to yourself, “I can’t relate.” You go to a party or out to dinner with your girlfriends and listen as everyone catches up on their lives. You listen to them talk about their jobs, their kids, and their vacations. You hear them complaining about problems that seem minor to you. You think to yourself, “I can’t relate.” Your husband comes home from work in a great mood and is excited to tell you about his day. He goes on and on about how much he loves what he’s doing. He says that everyone tells him he’s doing an excellent job and he wonders what his future might hold. You think to yourself, “I can’t relate.”
I see you, Alzheimer’s Daughter, scratching your head and racking your brain, trying to come up with something to talk about with your friends. Something other than Alzheimer’s. You realize that you don’t have anything to say. You don’t have a “real job” and you haven’t done anything exciting in years. You know that you can’t talk about what you actually do all day. You can’t share how your mom hands you her used toilet paper when she’s done using the bathroom and that you just take it because it’s better than her storing all of it in her pockets. You can’t tell them about how she didn’t remember who you were when you got to her house that morning or how you had to constantly remind her the whole time you were there. You can’t explain how your mom was upset and yelling all afternoon because “they” were being too loud and if “they” don’t stop then “they” have to leave. You can’t tell them how you look at your mom and you don’t even recognize her anymore. How you struggle to remember what she was like before she got sick. What did she look like? What did she say? How did her voice sound? You won’t tell them how you look in the mirror and don’t even recognize yourself anymore. What were you like before she got sick? Who are you now? You have changed so much. You just quietly sit there and let everyone else talk because you know there’s no point in saying anything at all. You think to yourself, “They can’t relate.”
I see you, Alzheimer’s Daughter, rolling your eyes as other women your age complain about their moms. Like, really? They’re complaining to you of all people about their moms? Complaining about how their moms didn’t do this or that or maybe did too much. While other people’s moms are still taking care of them, you take care of yourself. You don’t have a choice. Your parents don’t do things for you anymore. You do things for them. You are jealous of your friends that have good relationships with their moms. Their moms are their best friends and they’re always doing fun things with them. You think to yourself, “I wonder what that’s like?” You never got that chance.
I see you, Alzheimer’s Daughter, cancelling plans or not even making them in the first place because you’re tired in a way that no one understands. You’re not just tired in your body and in your mind. You’re tired in your bones and in your soul. You don’t have the energy for meaningless conversations anymore. You can’t remember the last time you had fun. You hold back from doing things for yourself because you need to be available to help your mom and dad. You put off having kids, taking that job, or moving away because you would feel too guilty to leave your parents. You feel guilty for a lot of things. You’re never doing enough. Your life is on hold.
I see you, Alzheimer’s Daughter, reaching out for a hand, any hand, that might be able to understand how you feel. Often times, you don’t even tell your significant other or your closest friends how you’re really feeling. You know they won’t understand. If you said aloud every thought that came to your mind, everyone would think you were crazy. No one would understand why you feel the way you do. Why sometimes you wish time would speed up so that you can just get this all over with. No one would understand why you go to sleep feeling sad and wake up feeling even sadder. Why sometimes you cry yourself to sleep for no reason at all. No one would understand how you can feel such highs and such lows in one day’s time. How you can go from feeling perfectly fine to sobbing, crying just like that. You’re looking for someone who can relate to what you’re going through. Someone who you won’t need to explain all of your feelings to because you honestly don’t even know where to start. You want to talk to someone who just “gets it.”
I see you, Alzheimer’s Daughter.
I see you.
I feel you.
I am you.
You are not alone.
I am here.
*If this post resonates with you, you should consider joining my membership called the Alzheimer’s Daughters Club. In it, you will learn how to cope with your guilt, grief, anger, resentment, and all of the other feelings that come with being an Alzheimer’s Daughter. Plus, you will instantly gain a supportive community of other Alzheimer’s Daughters upon joining! Check it out!
**If you liked this post, you will love my book “When Only Love Remains: Surviving My Mom’s Battle with Early Onset Alzheimer’s.” It’s available on all Amazon marketplaces.