When Glen Campbell was diagnosed with Dementia, he wrote one last song. A song that embodies everything that is this cruel disease…
I’m still here, but yet I’m gone
I don’t play guitar or sing my songs
They never defined who I am
The man that loves you ’til the end
You’re the last person I will love
You’re the last face I will recall
And best of all, I’m not gonna miss you
Not gonna miss you
I’m never gonna hold you like I did
Or say I love you to the kids
You’re never gonna see it in my eyes
It’s not gonna hurt me when you cry
I’m never gonna know what you go through
All the things I say or do
All the hurt and all the pain
One thing selfishly remains
I’m not gonna miss you
When I was growing up, we spent a lot of time at my grandparents house. My mom was a stay at home mom and was pretty close with her parents. They had a big house, with lots of land to play on. There was a stream in the back, and a long rock wall to jump off, my grandfather had two storage buildings packed full of cool things we could play with, and there was even a path mowed into the woods so we could walk up and play with the salt block my grandfather had out for the deer (no idea why this was awesome, but it was, and we did it almost every time we went out).
I have some amazing memories at my grandparents house. Like the time my grandma let me eat mac and cheese until I was full (we all know exactly how much pasta and cheese I can eat in one sitting) and then I threw up in bed in the middle of the night without even waking up. She had no clue until the next morning when she was trying to brush my hair and kept finding noodles. Or the time I got a splinter on the old wooden bridge out back and my mom had to hold me down while my grandpa pulled it out.
We would spend hours sitting at the dining room table playing solitaire with grandma. Her cigarette would be smoldering in the ashtray, her coffee would be cold. After dinner she would send one of us down to the garden to throw out the compost, and then we would eat ice cream with chocolate syrup as a nighttime snack. They kept a basement fridge for soda, and many a time I was caught sneaking down those rickety wooden steps to steal a coke or a root beer after mom had specifically said no more. The basement door also doubled as a growth chart for every kid in the family. We would delight in having PapPap measure us against the door and then laugh at how short we were compared to our older cousins.
Christmas was always a big deal too. On Christmas Eve we would all cram into grandmas dining room where there would be a giant spread of ham, cheese balls, dips, peanut butter candy, and moms gingerbread cookies. There were too many of us to even attempt a table so we would just wander the house with our plates and eat where we could find a place to perch. It was loud and it was hot, and it was fun. We would all open presents, and us kids would squeal with delight at all our new goodies. The whole family would show up, cousins we hadn’t seen all year, and aunts and uncles who showed up well after midnight mass. We would all laugh and talk and visit. It was a true family Christmas.
As time went on, we got older, our visits became less frequent. Once we all moved away, it became harder and harder to get together. We would still make time for Christmas Eve, but it wasn’t as crowded as it once was because the cousins and other family were getting married and going to the in-laws or staying home to celebrate with their kids. There were no more long foggy mornings with cigarettes and coffee. The stream out back dried up, and the garden no longer got planted. Grandma seemed to be getting confused more often as well.
It started small, she would forget to turn off the stove, or set her wallet down at the store. No one seemed to even notice, she had always been a dependent, forgetful type woman. It used to drive my mom crazy that my grandma was so dependent on my grandfather. I mean, I don’t even remember a time that my grandma drove anywhere by herself, or drove at all. My grandpa was just always the man of the house and took care of things. I doubt she ever mowed a yard, or cleaned a gutter. They are just traditional like that. So it took a few years for us to figure out that her forgetfulness was a bit more than just her being oblivious.
She would call us the wrong names, understandable since there are lots of girls in the family and we all share similar traits, its only natural you get the name wrong once in a while. But then she started to forget who we were, and how long it had been since we had last visited. She would ask me if I knew who my own parents were, and when I said yes she would then go on to tell me about how they had gotten a divorce. She wrapped everyone’s Christmas presents in Hanukkah paper, and couldn’t remember how to make her famous cheese balls. We started to get worried.
When she got sick with a UTI and ended up in the hospital we all started to get really worried. It was a fast track downhill from there. She couldn’t remember where she was and she would get irate towards my grandfather when he had to leave for the night. The doctors explained that sometimes something as small as a bladder infection can set off Dementia.
It was the first time we really came face to face with the disease that had been creeping up for years. There was no denying it. Within weeks she was in the nursing home, she couldn’t remember the storyline of an hour long tv show from start to finish. She couldn’t read a book, or carry on a conversation. Every time we would visit she would tell us that no one came to visit, but we all knew that everyone was going in shifts. She didn’t stay long, they released her within a few weeks to go home under my grandfathers care. Within a month he had hired an at home nurse to come 6 days a week and help him care for her.
It’s been almost two years since then.
The family still takes turns going to visit, but instead of solitaire and ice cream we spend our time reminding grandma who we are, and how we are related. Some days are good, she will laugh and smile and be tickled that we have taken time out of our day to spend time with her. Some days are bad and she doesn’t recognize her own husband. The dining room that once hosted grand family gatherings now hosts grandmas bed because she can no longer go up and down the steps. The doors that were once welcoming and open are now constantly locked to keep grandma from escaping outside.
I have struggled to write this post and put my thoughts and emotions into words. It is a difficult thing to deal with, especially being a new wife and mother, I am empathetic towards my grandfather who has to watch every day while his wife of 50+ years forgets their lives together. I can’t imagine. It is the opposite of when someone dies before their time. Instead of a young person having their life stolen away, my grandmother has lived a good life and is now having her memories stolen. While she doesn’t miss us, and doesn’t remember what is happening from one moment to the next, we are left with the struggle and pain of watching someone who means so much to us slowly forget that we ever meant anything to her.
I will continue to go down, and take Little Darling to spend time with her Great Grandmother. I will continue to remember the good times and the memories that have been so cruelly stripped from my grandmas mind. I will pray that she has more good days than bad, and that my grandfather can stay strong while caring for his ailing wife.
For more information on the disease Dementia, please visit: http://www.alz.org/what-is-dementia.asp
If you or a family member are experiencing any of these symptoms, I strongly urge you to see a doctor immediately. While there is no cure for Alzheimer’s or Dementia, there are treatment options.