Sometimes I picture some of the things my Mom had to go through when she was sick, and I get a pain in my chest. And that sometimes is often at this time, 3am. I think about her fear, pain, frustration, confusion, heartache, anger, embarrassment, longing. She was so strong, yet I can only imagine her internal strength fading away as her memory and ability to communicate did the same.
Mom was diagnosed with Lewy Body Dementia at the age of 61. She had symptoms, as we know now, for several years before her diagnosis. I don’t know how many years. Folks with dementia have the ability to hide or cover up some of the “signs”. She died at the age of 65 in December of 2012. That’s more than 2 and a half years ago. I think about her every day. As you do, when you lose loved ones so close to you. She was my best friend, you see. I talk to her now, I thank her for nice things that have happened to me…things I know she’s had a hand in. I tell her I love her and miss her. But sometimes, like at 3am, I see her as she was near the end of her life. I think at 2 and a half years out, those images should NOT be the first ones that pop into my mind. So…they can go away now. Please. Just get out. They are sad pictures. And I think I know why they’re still there.
When I was growing up, I was pretty self-involved. My Mom was very much a part of my life, but I thought about myself the majority of the time. That was until she got sick. When I left San Diego to go back East to be with her, I became hyper-focused on her, and everything that was happening…in her disease, in her care, all of it. I can see the first time I walked into her assisted living facility, and her shirt was on inside out. It was orange and had three buttons in the front. I recall the first time I found some sort of bread product in her purse, taken from a meal for “later”, I don’t know how many days ago. When she lost her speech, I would try to guess what she needed, and then act. I remember clearly the time I walked into her nursing home and she was rocking in her wheelchair, unable to speak, unable to tell anyone her foot was twisted under the pedal. How long had she been in pain? How many other times did things like that happen in the course of her disease? So many. Too many. I was with her when she died. It was peaceful, but it was ugly. My poor Momma. Breaks my heart.
I think the images in my head now are from when I was paying attention to Mom and her needs, and likes, and moods, and feelings. So, the lesson in all of this: Open your eyes now. See what’s happening with the ones you love. Hear them, watch them, share good and loving and special experiences with them. Take those moments, and pause, and revel in them. Let them fill you up. Be less annoyed. Call more. Visit more. Put aside differences with family members. See them as they are now. And store those pictures in your mind, not just on Facebook.
I share because I care. About you and your journey now or in the future, in this heartless, painful disease. If anything I write can make this process of caregiving just a tad easier for others, I will get up and write every day at 3am. I just hope next time, the image in my mind is of Mom smiling and welcoming me home with a glass of iced tea and cheese and crackers. Miss you Momma. #ENDALZ