I'll write tomorrow about today and how it went with calorie counting and not eating after dinner. But for today, I'm going to do a writing prompt. This is a topic that has come up quite a bit lately in various situations, so I've been talking more and more about it.
I've touched on this a little before in 2016, but it was a sponsored post by Prudential, and I didn't go into much detail. Also, the fear has gotten worse since then, so I thought this would be a good writing prompt.
My Biggest Fear
Aside from the obvious--the passing of a member of my family--I have one fear that I don't think most people think about when asked about their biggest fears. Spiders are a huge fear of mine, but not that's not very significant--and if I had to choose between eating a spider or getting cancer, or something like that, the choice would be simple. I'd eat the goddamn thing.
My actual biggest fear is much deeper than that, and I get super anxious when I even think about it. I can remember the very moment that it started--back in November 2010. I was in the hospital at the time for my broken jaw and I was moved to a much quieter room in the ENT ward--a room to myself! It was very exciting ;)
Jerry was there with me in the evening (he stayed there almost 24 hours a day, sleeping on the tiny, uncomfortable couch in the room. Anyway, I remember the quiet room, the lighting being soft and not so harsh, and I just felt so comforted (or high on dilauded, haha). I just felt... happy. Relaxed.
I was relaxed enough to drift off to sleep, but just for a few minutes. Jerry was sitting next to me, and I felt safe as I fell asleep.
The next thing I knew, I opened my eyes and completely panicked. I had absolutely no idea who Jerry was or why he was in that room with me; I had no idea where I was or why I was there; scariest of all, I didn't even know who *I* was. I felt sheer panic like I've never felt before.
I started asking the strange man (Jerry) a million questions in row--firing at him the who, what, when, where, why questions. He had to explain between my panicked questions what was going on. The whole thing lasted probably about 90 seconds, but it was--literally--the scariest moment of my life.
And from that moment on, I knew I never, ever wanted to feel that way again. I was paranoid about going to sleep and I was so sure that if I did go to sleep, it would happen again. Thankfully, it didn't happen and it hasn't happened since then. But it remains my biggest fear.
My grandmother (who was affectionally called "Gobby" by her whole family) died of Alzheimer's in 1999. I was only 17 years old at the time, and I couldn't really remember what my grandma was like in the Before period. I only knew the After.
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| This was in the After; my birthday, in 1996 |
She was an active part of my life, however. We weren't close (I was a stupid teenager that found it embarrassing when my friends would meet her), but we saw each other often.
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| Right after I was born |
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| I was trying to tell her that I'm a cat person, not a dog person! |
When she was diagnosed and it became apparent that she couldn't be home alone, my aunts and uncles started to care for her in shifts. When it was my mom's shift, I'd go with her sometimes (my grandma lived right behind me).
I remember bits and pieces from Before. We played a game called Hate & Malice with two decks of cards. We would watch Wheel of Fortune and Jeopardy. I saw a commercial once for something called "the roller ruler" and seeing the amazing drawings people made on the commercial, I mentioned I wanted one too.
Several weeks later, my grandma gave me one. (Just a few years ago, my mom and my aunt were going through all of my grandma's paperwork, and they came across the receipt for her order of the "roller ruler"! It was a nice reminder of Before.)
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| This is my favorite photo of us |
Most of my memories are from After. I remember my grandma calling me "Sue" (my mom's name). I remember her asking when "D" would be home (she called my grandpa "D"). I, and the rest of the family, called him Pippi, even though I'd never met him. He actually died on Father's Day when my mom was 16 years old. He had a heart attack in the middle of the night. This was the saddest time, when Gobby asked for "D". Although as an ignorant teenager, I found it odd and kind of funny that she couldn't remember these things.
Pippi died in 1968 (I may have that wrong by a year or so). And at the time that Gobby was going through Alzheimer's, it was in the mid to late 90's. She couldn't remember that her husband was dead for 30 years. At first, when her children told her that "D" had died, it was like my grandma was hearing it for the very first time. Can you imagine living that moment over and over again?
Eventually, they just started telling her that "D" would be home soon, he was just out. She would soon forget that she asked.
Once, she left the house in the middle of the night. I don't remember the details around this, but it was a big deal. After that, my mom put a motion detector chime near the front door so that whoever was staying the night would hear if she tried to leave agin.
My mom and her siblings sacrificed so much for a few years to make sure that she was comfortable and that someone was with her 24/7. As an adult, I think about that and it's the very last thing I would want! I certainly don't want my family to have to take care of me. I would be just fine in a nursing home (or, if euthanasia was legal, I would take that option for sure).
More recently, my aunt (Gobby's daughter, my mom's sister) is now going through the stages of Alzheimer's. When I see her, it causes extreme anxiety because it brings up this fear inside of me. I don't ever want a day to go by where I don't know my children's names.
Getting Alzheimer's in my biggest fear.
There is genetic screening to see if I carry the affected chromosome that may carry it; I really want to do the screening, but so far, I've been too chicken. I would really love to just KNOW--either way, good or bad--so that I can start planning now for either scenario.
However, I have a feeling that Alzheimer's will be in my future eventually. I don't know if it will be early onset. I find myself forgetting things much more frequently than I used to, and each time I can't remember something (especially words--I can describe what I want to say, but I just can't come up with the actual word for it) I question whether it's happening.. Each time this happens, it's like another tick on the clock toward the disease.
I've told Jerry my wishes--I don't want him caring for me, I want to be put in a home (or euthanized via the Death With Dignity plan--although Alzheimer's doesn't fit the criteria for that, because you have to be of sound mind. I've written so much about this that I hope it's clear for what I want. Jerry has said he'd never be on board with that, however.)
I would just be a burden to him and my family. That is not what I want at all, and that's one of the reasons that Alzheimer's is my biggest fear.
My grandma died just before Christmas, on December 19, 1999. Just over 20 years ago. (God, has it been that long?). She'd been on hospice care (at home) to make her comfortable in the end.
I remember one day just before she died, the whole huge family--kids, grandkids, great grandkids--all went to her house while she was lying on her death bed. She was loaded up with morphine, and she couldn't open her eyes, but she could slur a couple of words at a time.
Someone suggested singing a few Christmas carols to her, and even though I wasn't super close with my grandma, I lost it. I couldn't handle it. I went outside and sat on the stoop crying, just waiting for the singing to stop. I hate that song to this day.
My mom and aunt were there with her when she passed. My mom told her that she was going to see "D" soon. And my grandma gave a very soft smile and said, "That is good". Before taking her last breath.
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| My last time in her house. We were packing everything up for the new owners. |
I don't ever want my kids to see the day where I forget who they are. Or if it affects my brain in the way that I turn very mean and hateful toward people, even loved ones. I'm not a hateful person at all.
I really don't ever want to wake up not knowing who I am again. It was terrifying. And that's what made Alzheimer's become my biggest fear.
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| Trying to show her how a "word processor" works |
P.S. It drives me crazy when people call it "Old timers" disease or some sort of mesh between the two (Aldtimers). I remember when people first started talking about it way back when, and people tended to call it Old Timers. I honestly think that some people don't know the proper word.
Do any of you have experience with Alzheimers? Has it made you as scared as it's made me?
