Grieving a loss over the course of years is wearing on the soul. Watching someone, especially your mother, slowly disappear before your eyes is devastating. There are things no one tells you when a parent receives an early onset Alzheimer’s diagnosis. One can assume and attempt to prepare for, but you don’t really understand it until you’re in the depths of it.
The early onset threw everyone off in the beginning. No one connects the dots to any type of dementia when you’re in your 40’s. My mother had me and my brother at a young age and hitting her 40s meant she was just beginning a new chapter in life without caring for kids. Until she started struggling with stressors at work and it became noticeable to the people around her. It was easily chalked up to anxiety, pressure and a heavy workload so she adapted with a lower stress, part time job. But even that seemed to be too much.
At the same time her job switch was happening, so was my separation. I was so wrapped up in trying to get myself and kids out of a domestic abuse situation that her forgetfulness and anxiety seemed more like early menopause and minor compared to my troubles at the time. We were neighbors, living on the same property and we spoke every day. It wasn’t until later that year that I really started to realize this was not early menopause and normal forgetfulness. This started to look like something more and so she went for a cognitive test. And that was the beginning of her diagnosis. At 49.
Like so many other people with loved ones who’ve been diagnosed with this crushing disease, I began researching everything I could. Joined Facebook groups. Googled stages so I’d know what to expect or what to be looking for. Spoke to everyone I could that had any insight. Everything is so up in the air. I needed affirmative answers and most dementia conditions vary from person to person. You get numbers like…survival is anywhere from 3-20 years. Well, that’s a broad spectrum and I don’t do well with those so I would google over and over and over again over the last 7 years in hopes that maybe the answer would change. Maybe I’d find a new source I didn’t see the other 1.5 million times I searched.
The answers never changed, but the compulsion to look on a weekly basis never changed. Even early on. I spent so much time looking for “what does the dying stage look like for an Alzheimer’s patient”, but you could never really find an answer. Everything all written pretty much the same, but with no real specifics. And again, it’s because it’s all so different. I see that now, but what I didn’t realize was how clear it becomes once you are watching it for yourself.
She had been in the last stage, according to the neurologist, for what seemed like a really long time. A year and a half or better. And you keep thinking “oh my gosh, is it going to get worse than this? It’s got to be coming soon because this seems like the end.” But it did get worse. I think the problem with researching is that you really can’t see it or describe it until it’s happening. Then you know. You just know.
It was mid-February and all of the sudden you could see the shift. The shift of her beginning to leave this world and enter a new one. All the weight loss over the prior 6 months and facial changes were nothing compared to the sudden contrast between pictures from January to February. It was over the course of a week that she went from being in palliative care and going to daycare during the day to hospice and bed bound at home. She had a few days in between where she walked unsteadily in the house. She had a few days of sitting on the couch or in a wheelchair, but honestly those came and went quicker than I realized they would. There was no time to dwell during those phases. I went from wishing she would sit because of her unsteadiness and falling to wishing she would get off the couch but couldn’t because she just didn’t have the strength. Those were emotions you only had a few days to process before the hardest stage of it all.
By the time the beginning of April came around, Alzheimers had ripped my mom of yet one more thing… the part of the brain that sends hunger and thirst signals. All that was left were the few memories I had from recent days. One of the most precious was me singing a gospel hymn with her in her hospital bed, eyes closed, hand raised in the air. Just like she used to do in church services.
I was at her bedside when God finally released her from the prison that had become her life. And although I am sad, I am grateful I was with her until the end. I am grateful that after being nonverbal for so long… she can walk and sing and talk in Heaven. She is finally free of a disease that she would have hated.
My mother was the epitome of independent and didn’t like asking for help so to be solely dependent upon others to take care of you is not how she would have chosen to live out her remaining years had she had a choice. She was feisty yet patient. Opinionated yet gracious. She was my mother. We were the same, yet different. She wanted me to become everything she didn’t get the chance to be. She pushed me to follow every dream. She showed me how to be a woman and a mother. She is with me and always will be. She bought me my first journal in middle school and told me to write it all down, that I might need it one day. And this is for her. She wanted me to be a writer. This might not have been the writing she had in mind, but this is the writing I do. And she would be proud.