Friday, September 27, 2013

The 36-Hour Day

Those who have a loved one suffering with mental illness know exactly what I mean when I say "The 36-Hour Day". For those of you who don't, to someone with a degenerative mental disorder, such as Dementia or Alzheimer's, the days drag on and on. They seem much longer than they really are because so much of their day is stuck trying to remember things, searching for words, and just running through thought loop after thought loop.

I had the amazing privilege of calling one such extraordinary person my grandfather.

Although I wasn't old enough to remember, there was a time when my grandpa, George, was on the top of his mental game. He worked at a company named Bailey as an industrial designer and invented many things. The News-Herald, our local newspaper, wrote an article all about him and his work at Bailey in which there were quotes from him. Reading it after I had seen him go through this struggle for years, it was so difficult to believe that, at one point, this well spoken man was the grandfather I knew.

He was a member of the Studebaker Driver's club; there was nothing that he liked more than old cars, except maybe being a father and a grandfather. Almost every weekend he would take me to car show at the city hall down the street from his house. I can't even count the times he would exclaim "Ooooh!" and run off for a car, camera in hand, or the times my grandma and I would be walking and talking only to turn around and realize he wasn't there, but instead was off admiring a car engine.

One of my most fond memories was just taking walks and talking about life, admiring the stars or going for walks in the woods. He answered every single question I had without a second thought. But then, as I grew older, my questions got more difficult, and his mental health was declining, the answers didn't come so easily.

He had trouble even forming the most simple sentences, which was awful to see. You see the thought process working in his mind, but the words just never come out. It was so devastating to see the frustration in his face as this remarkable man couldn't even put a sentence together to ask what was for dinner. I can only imagine what he was thinking and how he was feeling. It is amazing to think how strong he had to was to not just give up.

He suffered through this illness for more than 15 years as it slowly took the words and thoughts away from him.

One day, my mom got a call from my grandma. My grandpa had been admitted to the hospital for a simple infection on his leg, his first, and inevitably last, hospital admission of his life. He was confused as to what was going on and why he was staying the night at the hospital, and got "belligerent" on the hospital staff. (I still cannot imagine him ever getting angry). They had to sedate him and strap him to the bed. They gradually took him off the sedation and removed the bed straps. By this time, he hadn't eaten in days.

As he slowly regained awareness, I tried to motivate him to get better. At this time, we still believed there was hope of him being discharged. I was talking to him about how my wedding was coming up in a few short weeks and I wanted him to eat so he could be there. When I said "I'm getting married", his face just lit up. His eyes got huge and he smiled in the goofy way he always used to; this was the only emotion, besides despair, I saw during the end.

My mom got another call from my grandma, who told her he was going to be moved to hospice. He still hadn't eaten. It was real now. This is the end.

I visited him with David, who had just gotten home from AIT, and we said our goodbyes. I thanked him for making me the person I am today, for answering every question a little girl could ever have, and for instilling in me the sense of wonder I still have over the wonderful things in nature, the night sky, and a love of capturing these things in photography. I made sure I told him I loved him, and that whenever he was ready to go we were ready to let him go.

At the hospice house, we played Simon & Garfunkel and all his favorites and just sat around and talked to him, hoping that it he could still hear us. My mom even drove almost an hour away to go get him some sodas that he liked, Cel-Ray and Birch Beer. Because he couldn't have liquids, we had to swab it in to his mouth. The Cel-Ray wasn't a huge hit, but he loved the Orange & Cream soda she got me. I wasn't around for the Birch Beer. The last weeks of his life were spent just keeping him informed, entertaining him, and sharing in things he loved one last time.

I had this horrible dream that I was going to have to make the announcement during the wedding that he had passed away, but luckily he made sure he stayed around for the wedding, even though he couldn't be there physically. After a long, well-fought battle, George Whaley passed away on July 9th, 2013 to frontotemporal dementia, just three days after I was married.

Although, it is one of the most amazing things to be related to someone with Dementia or Alzheimer's, it is also one of the most frightening. You constantly run the worst case scenarios through your mind, like "Will he/she forget who I am?" or "When will it be me?".

My best piece of advice for everyone, but especially if you're related to someone with an illness like this, just live your life to the fullest and don't sweat the small things. If your relative is still alive, don't get frustrated with them when they are searching for the words, just have patience and treat them as you would want to be treated if, God forbid, it ever happens to you.

If you wish to contribute to the research of Dementia, donations can be made in George's memory at: www.dementiacarefoundation.org. Please leave a comment or feel free to email me at meganevans679@gmail.com if you would like to share your story, get advice or support, or ask for prayers.

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