Each time I sit by Mom’s bed in the nursing home and her eyes are open but there is no recognition, no light, no “mom” left I find myself watching carefully for any glimmer of the woman who gave me life, taught me to be self-sufficient, sacrificed so much for her kids. She once loved music and reading and gardening. She lived a simple life but was content with her cat, with taking long walks and watching TV. She used to ask about our lives and wonder about her grandchildren. She used to make me laugh. She used to be here but she isn’t anymore. I miss her.
Mom has dementia. Normal pressure Hydrocephalus dementia. It’s similar to Alzheimers. Certainly, the symptoms and memory loss and acting in ways that are completely out of character for the Mom we knew and loved, are the same. And the end result will be the same.
When symptoms first started they were so subtle we didn’t even notice them. We’d laugh and tease her a bit when she couldn’t remember what grade her grandkids were in or would get their names mixed up or our names mixed up. That happens as we get older, right? And when she repeated the same questions over and over we’d chalk it up to her not having much to talk about that day. When she started sleeping most of the day and forgetting to make it to the bathroom before she had to go and her gait was more of a shuffle than a stride; that’s when we clued in. That’s when we admitted this was more than forgetfulness.
We didn’t fully understand what the progression would be like but as we witnessed her slipping away a little more each week, each month, it was as though we’d entered an extended period of mourning. Each new decision we had to make on her behalf made us realize that the “Mom” we knew and loved was no more and our roles had been reversed.
After her diagnosis, she managed to stay in her own home for a while, but the time soon came when we had to get her into a nursing home. That was tough for her. She didn’t understand why we were doing that to her and would get angry, belligerent, call us names. The days of joking around with Mom were gone. All that was left was anger from her; sadness and feelings of helplessness from us as we watched who our Mom had been slip away a bit more each week.
She was about 74 when she went into the nursing home. She is 81 today. We’ve witnessed our beloved mom – our rock – go from a strong, independent, feisty woman with an acerbic but loveable sense of humor, to a woman who would be appalled, angry and so embarrassed to know her life has come to this – being fed, wearing diapers. I am forever grateful to her caregivers who treat her with patience, kindness, and dignity. They are so special and appreciated more than they can imagine.
People always say this is such a terrible disease and it is, it truly is, but we can be thankful that Mom isn’t in pain, is getting excellent care and we do still have the opportunity to sit with her, read to her, hug her and tell her we love her – even if she doesn’t respond. Over the past 7 years, I guess you could say we’ve been allowed to “ease in” to losing our Mom as she’s disappeared, gradually, right in front of our eyes. I have to see it as a gift for us but I’ve always felt that losing a parent suddenly, while devastating and shocking to those left behind, would have to be a better ending for the person who died. They wouldn’t have to suffer the pain or indignities that go with a long, slow decline.
With the possibility of developing dementia myself (Mom’s father also had it) I am fully aware of what could lie ahead for me and I would selfishly prefer something quicker. I don’t want my family to go through the period of guilt, sadness, and regret that can last for years as they wait for the inevitable. When Mom does finally succumb to this disease that has, really, already taken her from us, I will have done my mourning for her. I struggle to understand what the lesson is for me in all of this. Perhaps it’s to show me how to live my own life more fully now, while I’m still here in body and mind. Maybe I’m being reminded to embrace the spirituality I’ve often lacked so that I can find, if not understanding as to “why” she must endure this, at least a sense of peace knowing a higher power is in control.
To lose our parents is inevitable but to lose them bit by bit; to watch them disappear right before us is tough and I can’t imagine how hard it’s been for Mom. Some will say that at least I still have her and can visit her but I disagree. The Mom I know and loved and looked up to is already gone. Yes, I can give her physical body a hug but when she doesn’t hug back and her eyes don’t “smile” anymore and there is no recognition of who I am I realize my “goodbyes” have already been said. I am sad that she didn’t get to know and enjoy her great-grandchildren and sad that so many good years were taken from her but I am beyond grateful for the years we had her fully here with us. I will send my prayers up and will celebrate the life she had before dementia; I will be thankful for all she has given me and the lessons she has shown me by how she lived her life. But I will also be grateful when she can be rid of the earthly constraints that hold her here knowing she will finally, truly be free, and I imagine those blue eyes twinkling again as she smiles and greets her loved ones who’ve gone before her.
(Mom, 1987 – 51 years old)