February 03, 2020

My Biggest Fear (a writing prompt)


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.

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.

Right after I was born

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.)


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.

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.

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?


14 comments:

  1. I have no experience with Alzheimer's, but my two great-grandmothers (on my mother's side) both had dementia after suffering strokes. One of them was convinced I was a boy, and would take me around to the other residents of the nursing home, introducing me as her "wonderful grandson" which of course, at the time, I found humiliating, but I went along with it so as to not hurt her feelings!

    My own grandmother became confused just before she died--I came to visit her at the nursing home (she'd been having trouble with her heart) and she suddenly didn't know who I was! She acted like I was a stranger, and chatted with me, but it was clear she had no idea who I was. At first I thought she was being mean (we had never had a close relationship, really), but when I went out to my car and called my husband, he said, "You should go tell the nurses, that doesn't sound like her at all," and when I did, at first they brushed it off as her being tired, but after I insisted they come talk to her, they found out she didn't know really where she was, and she thought she was waiting to 'go home' and that somebody was coming to pick her up. It was very disconcerting, she had always been as sharp as a tack even as she entered her 90s.

    Hospice later told us that often when people are close to death, they get forgetful and have what looks like dementia. Something about the brain shrinking. She passed away a week or so later. So she didn't suffer the forgetfulness very long, for which we were grateful.

    I have to say I've never been afraid of Alzheimer's, maybe because there isn't a history of it in my family, but I am also not afraid of being a 'burden' on my family. That's what family is for! I don't consider my children a burden on me when they're sick, and I take care of them, or my husband either. When I was recovering from serious surgery a while back, I remember apologizing to my husband, who was bringing me meals and basically carrying the load while I recovered, and he said, "If I didn't want to take care of you, I wouldn't have married you! That's what our vows were about." Why else be part of a family?

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    1. I'm so sorry that you've dealt with dementia in some form or another in your own family! It's so hard on the family members because it's sad to see the effects of what is happening, even if the person doesn't understand, we have to see them going through it. That's great your husband is so supportive! (Jerry is too, but I don't want him to be in this case, haha)

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  2. My dad has Alzheimer's. He's also lost his vision, so he has no visual input to help him "remember" at all. He's in a nursing home at this point, because once he lost his vision, my mom couldn't care for him. It's so hard to go see him. It's a mix of emotions of my childhood and wishing there were things I could say/do (both reconciling old issues and also wishing I could get his advice). He's met his granddaughter, my 3 year old, many times but has no idea who she is. Thankfully, she's not afraid of him at all. She loves grandpa's house and wheelchair. She thinks the nursing home is fun. But it breaks my heart she won't know the man I know. It's so hard. I am also afraid of getting it someday. There are things I'm trying to do now to make it better for me someday. They say dance is great for your brain, and I teach a dance class every week. They also tell you to find something tactile with your hands because that muscle memory is strong and can keep you busy/keep your brain working when nothing else comes to mind. I'm working on picking up a tactile hobby, like knitting or crochet or painting or something. I don't have to be good at it, I just have to establish that muscle memory.

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    1. Oh my gosh, that has to be so hard! The loss of vision is terrible--as if Alzheimer's isn't bad enough. I think it's amazing that your daughter love him and isn't afraid. Children are so innocent and kind! Knitting and crocheting is fun--I really want to get back into it, but I feel like I rarely have time to make for it!

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  3. Getting Alzheimer's is also my greatest fear. I cannot imagine how scary it is for them to look around and not know where they are or the people who are with them.
    My Grandma on my dad's side has Alzheimer's. She was a teacher for over 40 years and she was diagnosed with it a couple years after retirement. My grandpa cared for her as long as he could, but finally they had to put her in a nursing home. At first, she tried to leave, but now the disease has progressed so much that she is in a wheelchair and can barely speak. She is no longer the person she was and it makes me so sad.
    My grandpa on my mom's side just passed away. He had dementia that came on after he hit his head. He was not as bad as my grandma is now. I went to visit him at the nursing home a couple months before he passed and he knew I was family, but he didn't know who I was. He really was doing probably the best out of most of the people at that nursing home. He thought he was staying at the Elks Lodge.
    I am very hopeful, because there has been a lot of research on Alzheimer's and I pray there will be treatment to reverse the effects before I get it. I don't know if I would want to do the genetic test to find out if I have the gene or not.
    As for euthanasia, I used to be against it; but as I watch my grandparents age, especially the ones with Alzheimer's, I feel like it would be the humane thing. If they choice was made prior to being diagnosed, I feel like it should be allowed.

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    1. Wow, I am SO sorry for what you're going through. I was too young to REALLY understand Alzheimer's when my grandma was going through it, but I just find it so sad that they can't remember who people are. My grandma didn't even remember who my mom was! You're right, it's so sad. As awful as it sounds, I'm glad that you understand my thoughts on euthanasia. I really wouldn't want to live like that, and I think that if someone makes that choice before displaying symptoms, their wishes should be respected. I'm sorry for your family having to go through this!

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  4. I too worry about Alzheimer’s. I have chronic migraines, which have given me white matter lesions on my brain.

    I too have a lot of Aphasia ( when you forget the Work you are thinking of) Many Doctors have said it comes with getting older and menopause. But I do have air a lot especially right after a bad migraine.

    My husband is a Doctor and has read a TON on prevention so this is what I do: no gluten (it’s inflammatory on our blood vessels), I intermittent fast (helps with longevity, and I sleep better) Not sleeping well shaves years off your life. I take supplements, and try and eat as much “real” food as possible. In the last 4 years I have started to exercise 5-6 days of week I do a HIIT boot camp, and yoga. I also started to work part time (to keep me busy as my kids are older) and volunteer, again to try and keep my mind active. I like you play word games on my iPad and read a ton too.

    I know how scary Alzheimer’s can be. There is so much research about the disease and I am hoping soon they come up with some concrete solutions.

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    1. That's scary about the sleep! I have NEVER been a good sleeper--I'm lucky to get 4-5 hours a night, and even that is when I'm awakened several times. Maybe it's time for a sleep study! I am really hoping that they make some serious advances toward the disease. I think it is so sad that so many families (not just the ill person) have to watch it progress.

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  5. I was a NA for a home and several of the people there had it. One woman her husband came faithfully every day to see her and you could see the pain and love but the hurt was there cause she didnt know him. I have always told my kids I never want put in a home. I dont fear this disease but it isnt something I would want to experience.

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    1. That would be so hard for me to watch! That's amazing that her husband came every day, but how heartbreaking for him when she didn't recognize him. <3

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  6. I never thought that much about Alzheimer's disease - I knew it was bad and something I certainly didn't want to have - until my 55 year old husband started exhibiting symptoms. It took over a year of testing to get a diagnosis, but he has early-onset dementia and has had to stop working now at 57. I'm in the process of trying to get Social Security disability started for him . . . something I never thought I would have to do. This is a time in our lives when I thought we would be traveling and spending time with our grandchildren. Now, I'm having to take over managing EVERYTHING in the house and plan for the day when he won't be here - which is coming sooner than I think.

    If you're worried about Alzheimer's and dementia, I recommend reading "The End of Alzheimer's" by Dr. Dale Bredesen and "The Plant Paradox" by Dr. Steven Gundry. You can ease into incorporating the protocols they recommend into your diet and life. Basically, it's getting rid of processed foods & eating a more plant-based diet. My husband and I are working on it - I know it won't take him back to the man I married and love, but maybe it will help.

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    1. Oh my gosh. This totally breaks my heart. I can't even imagine what you are going through right now. You're right, at that part of your life, you're expecting to travel and enjoy being with your family. You must be so strong to take charge like that, and I just want to tell you that I think you're amazing. I'm so so sorry. Please email me any time, even if you just want to vent. I'd like to know if you find any help with the books you've read and the lifestyle you're working out. <3

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  7. I would offer you two things. First off, please remember that as women, our hormones can totally mess with our brains (just like happens when we're pregnant) and it can cause temporary memory problems. I have a family friend who had an extreme version of this during menopause and they really did think she was showing the early signs of Alzheimers. Turned out it was just menopause.

    The other thing would be a Ted Talk by Alanna Shaikh that I thought was so interesting and introspective. She talks about the things that happened to her Dad when he had Alzheimers and what she's doing to prepare herself in case. This actually gave me a bit of peace because it shows that we do have the ability to shape our future even in those days.

    Bottom line, try not to stress. There's not a lot we can do other than enjoy our lives along the way and build strong relationships!

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    1. I never knew that about menopause! I (think) I'm too young for menopause, but my memory has gotten really bad over the last few years. However, one of the side effects of my bipolar medication is memory loss (temporary, thankfully). Still, I immediately jump to conclusions when I can't remember something. I would love to watch that Ted Talk, so I'm going to look it up right now. Thanks for suggesting!

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