Do you ever stop to think about when was the last time your loved one did something? When was the last time you took your mom out to lunch or to go shopping? When was the last time your dad came over your house to fix something? When was the last time your wife cooked a meal for you? When was the last time your husband mowed the lawn? Or even simpler things, like when was the last time your loved one took a shower and got dressed by herself? When was the last time he didn’t need your help to use the bathroom? When was the last time she walked or fed herself? Do you ever think about these things? I do.
It’s crazy, but no matter how hard I try to remember, I have no idea when the last time was the last time. I have some idea from looking through pictures or Facebook memories, but I don’t know exactly when the last time was for many, many things. With Alzheimer’s, you lose little pieces of your loved one steadily, over a long period of time. My mom was diagnosed almost nine years ago, so for the last nine years, I have lost little bits and pieces of her, but not all at once. It would be different if I lost big chunks of her at a time. Then I would probably be able to pinpoint the losses and figure out when they occurred. But in losing her bit by bit, I have no idea exactly when it happened. My mom didn’t just suddenly stop walking one day. It occurred little by little over a span of time, until one day she just wasn’t walking anymore.
Not only are you experiencing the continual, gradual loss of your loved one, but you also never know when the losses are coming. Alzheimer’s is unpredictable. Your loved one could linger in a certain stage for a long time or it could move quickly from one stage to the next. Just because your loved one is able to feed herself this week doesn’t mean she will be able to next week, but it also doesn’t mean she won’t. It’s completely unpredictable. We can’t anticipate what’s coming. We don’t know when the little pieces will be lost for good, so we never get the chance to say goodbye to any of them. We don’t get the chance to appreciate and enjoy what we have before it’s gone. If you knew today would be the last day your dad ever spoke, you would make sure you spent the day listening to his voice, burning it into your mind and heart forever. But Alzheimer’s doesn’t give us that luxury.
Losing someone slowly, piece by piece, makes it difficult to remember what they were like when all of those pieces were put together. It’s easy for me to remember parts of my mom, but I struggle to remember what she was like whole. I remember the way she dressed or the way she wore her hair, but I forget what she looked like. I remember her voice or certain things she would say, but I forget what it was like to have a conversation with her. I remember how she hated to cook and loved to keep a neat, clean house, but I forget what it was like when she was able to do all of those things. I remember pieces and parts of her, but I forget what she was like as a walking, talking, fully-functioning, whole person. When I just loved my mom and she just loved her daughter and there weren’t all of these complicated emotions involved. I don’t remember what that was like.
Sometimes I sit and think, I mean really wrack my brain, trying to remember what my mom was like “before” and I just can’t. How sad is that? My mom has been sick for so long that I can’t even remember a time when she didn’t have Alzheimer’s. Pictures and Facebook memories help, but I can’t remember her on my own. When a person dies, you remember them as they were when they died. You don’t remember them from ten years ago. You remember them exactly as they were right before they died. The way I see my mom now is not how I want to remember her, but sometimes I feel like I don’t have a choice. It’s so hard for me to remember her before and I worry that I’m losing more and more of those memories as time goes on. Once she’s gone, will I have anything left?
I’ve lost so much of my mom and so many memories of her, but she isn’t even gone. I’ve cried so much and endured so much pain, but the worst is yet to come. There are a lot of terrible illnesses and diseases out there. There is no good way to die, but sometimes I wonder. Is it better to rip off the band aid quickly, all at once, or to pull it off slowly, little by little, so you can feel it pulling each hair on your arm? Both hurt like hell, but at least the first one is over and you can move on. Then again, I’ve never experienced the sudden death of a loved one. I’m sure it’s equally as painful, just in a different way.
Some people still don’t understand how horrific Alzheimer’s disease really is. It’s not just that your loved one forgets things sometimes. It’s so much more. The pain that a family experiences losing a loved one, slowly, little by little, is unlike any other. The helplessness of standing by, watching while your loved one is stolen right out from under your feet, is unmatched. Alzheimer’s is an unforgiving, unrelenting, menacing disease and there is nothing else like it.