There is no warning label or preparation kit that can prepare you for the feelings that crash through your body when your loved one is diagnosed with Alzheimer’s disease. There is no article or research paper that can fully explain to you how it feels when the person you’ve adored and grown with over the years can no longer remember your name. Millions of dollars in funding to search for a cure cannot give you back the person you long for. Loving someone with Alzheimer’s disease is such a lonely experience, because you cannot talk to that beloved person about it. You can’t sit with her and process your feelings. You can’t say goodbye to her in a way you might want to, at least not in a way that she will be able to receive. You are there, loving her and remembering her, and she is far away, with you but not with you anymore.
Loving someone with Alzheimer’s disease is like loving someone you no longer know. Grieving for a loved one with Alzheimer’s disease requires grieving twice. When she loses her memory and you lose your history, and when you lose her for the final time. The first time, the time when she stops knowing who you are and the life you’ve had together, is heartbreaking. What is a life if not a tally of memories from past experiences? What happens to a relationship when one person no longer shares the past joys and sorrows, anguish and happiness? How do you move forward with someone when she is no longer moving forward?
And the second time, the time after you’re quite tired and she’s quite tired. The time when you feel worn down by all the care and the sickness and the loss, but then she breathes her final breath, and it’s like a punch in the stomach all over again. Because she wasn’t really here, but she was here. And now she is gone and you have to sit with all the memories alone again. And it doesn’t feel fair or right. How can you lose someone you love twice? How does any human bear such a thing?
But after the fire, after the consuming grief and pain, eventually comes a time when you start to breathe easier. The smoke clears away and you see once again that person, young and happy and how she was when she could still dance. You remember her deep laugh, how infectious it was to everyone around her. Or you remember her fiery side, when she didn’t let anyone walk all over you, and she said things she probably shouldn’t have but you loved her all the more for it. You remember how she always made big plans at the last minute because she hated to be tied down but she loved adventure.
As the grief eases, because we know it never really goes away, you don’t remember her in the sad and frail days so much. You choose to remember her vivaciousness and her kindness and her heart for the underdog. You remember how it felt to hold her hand and sometimes this makes it hard to breathe, but God, it also brings you life to remember her like that. Loving someone with Alzheimer’s disease is like loving two different people. And you love them both more than you can handle.
And you realize that you aren’t really alone. She’s still there, in the expressions you use and the way you toss your hand in the air when you’re annoyed. She’s always there when you’re sick and making her favorite homemade remedies that you aren’t sure even work, but you will do them forever. She is all the best and worst things in your life because she was there and then she was gone. And how do you live with that? But somehow you do. And you keep going because you know if she was here, she would look you in the eye and tell you to just get on with it already.
So you do.