My mom was hospitalized just before Christmas. During this hospitalization, she was diagnosed with dementia. As horrible as this may sound, this diagnosis actually brought a bit of relief, initially. It meant there was an explanation for what had been going on for the last several years. Along with the relief, though, came a wave of guilt, fear, and anxiety. Guilt for not having recognized the symptoms, fear for what the future might bring for my mom and for our family, and anxiety well because guilt and fear just isn’t enough on its own. Oh, and let’s also throw anger in that mix of emotions, because I’m super pissed off too.
During the hospitalization my mom was unable to hide the symptoms she’d been dealing with and it became quite obvious to all that the dementia had progressed enough that she would no longer be able to care for herself at home alone. We had known this for at least a year. We weren’t able to convince her that she needed help until December. We got my mom placed in an assisted living facility, which was another great relief. I honestly thought that with the structure, socialization, regular meals, and medication management she would be happy and healthy, and things would be great for quite some time. Not so much.
My mom’s condition has nose-dived. The type of dementia she has, Lewy Body Dementia, is awful. Robin Williams was diagnosed with this same disease, after committing suicide. He experienced all of the same symptoms my mom has. It’s a tortuous condition to witness. I cannot even imagine what my mom is going through. My hope is that her soul is already somewhere else, at peace, and that it’s just her body and brain left here on the earth. She is angry, paranoid, aggressive, and restless most of the time. When she’s not, she experiences hallucinations, and can’t make a lot of sense. We are learning to roll with that. But it’s hard.
My mom has a Master’s degree. She loves crossword puzzles and Starbucks coffee. She loves the Snake River Canyon, and music. She loves her grandkids and great grandkids. She loves to read one book after another and writes beautiful poetry. She loves to craft and sew, have dinner with her friends, and laugh until she cries. She doesn’t do any of this anymore. She can’t.
I grieve the relationship my mom and I once had, not too long ago. We will never have that again. I grieve for my mom while she is still alive. I have no idea what tomorrow has in store. I have no idea what the next hour, or minute has in store. But I do know that I’ve already lost my mom to a horrible disease. It has consumed her mind and will eventually consume her body.
I’m trying to quiet the guilt. It serves no purpose. I try not to feed the fear. It also serves no purpose. I’m working on addressing the anxiety, but that’s not likely to disappear. My focus is keeping myself healthy through this experience and maintaining some sense of balance in my life. It’s a challenge. I cry almost every day. Some days I cry multiples times.
I’m reading as much as I can about Lewy Body Dementia. That helps, but it’s also sad and scary. There isn’t a happy ending to this story. There’s just the story.
This will eventually make me stronger. But right now, this moment, I don’t feel very strong at all.