Following Up in Dementialand

Several months ago I wrote a blog post about why I dislike the movie, The Notebook. In short, I take issue with how it presents Alzheimer’s. On an unrelated note, I think it promotes stalking as romance.

You can read all about it here:

https://welcometodementialand.wordpress.com/2015/03/09/my-least-favorite-dementialand-movie/

I had no idea the Facebook messages and emails I would get after this post. Sure, some people agreed with me. Other people sent me comments like:

“Chill, honey, it’s just a movie.”

“So what if it’s not realistic. It’s a damn movie. Relax.”

“You don’t seem to understand the purpose of a movie. Why do people have to overanalyze everything and take away all the fun?” 

I was surprised that this post caused a stir, but I’ve realized that I’m a poor judge of which of my blog posts people will be controversial. I never would have guessed that my post about The Notebook would earn me the most hate of all 50-some posts I have written. People acted like I was killing kittens. And I can laugh about this now…

I predicted that Monday’s post about care partners who pray for their loved ones to pass away would offend someone. I thought I’d get a few emails from people who didn’t like the way I presented this, or maybe were just uncomfortable with the whole premise.

I got a little bit of feedback on Monday morning, mostly from people who said they could relate to the post. A few people thanked me, and in general people said reading the piece made them feel a bit more comfortable with their experience of wishing a loved one would die–rather than continue to live a life that they were pretty certain wasn’t worth living. I went for a run and checked my email when I got back. And whoa.

I had a lot of emails. Nineteen to be exact. They were from individuals who had experiences to share that related to the blog piece. Many of the emails were from care partners or former care partners of those living with dementia. However, quite a few of the emails were from those who had lost a loved one to cancer or another illness. And I thank those of you who gave me permission to share parts of your emails and Facebook messages. (A few people also posted very insightful comments on the actual blog post, if you are interested.)

Here are excerpts from the messages I received:

“My mother in law lives with us and has vascular dementia. I hate to say it, but I’m ready for her to pass away. It’d be different if I thought she had any joy in her life now. But I don’t think she does. There is a time when somebody is just done. She’s done. But her body is still here. I haven’t told my husband this. I don’t know if he’s there yet.”

“I have felt guilty for years because my mom was dying of cancer and I wished it would just be over. I prayed for her suffering to be done. Then when she died I felt awful. Not because she was gone but because I prayed for her to be gone. But she was suffering. I just couldn’t do it anymore.”

“My mom has Alzheimer’s and she has had it for about 10 years. The first 5 or so years she was happy. Now she’s not. She lives in terror. I know it must be scary for her. It’s scary for me. I just want it to be over. I want the nursing home to call me and tell me she’s gone. When the phone rings, I hope they are calling to say she’s gone. Maybe that’s awful, but it’s the truth.”

“My dad doesn’t want to be here anymore. He has cancer and Alzheimer’s. We don’t make our animals suffer. We know the kindest thing is to end their suffering. But people have to suffer until the bitter end and we have to watch it….Dad asks me to help him end it in a joking way. He says I should just shoot him and laughs. But I wish I really could.”

“For many years I have felt bad about praying for my mom to die when she was at the end of her life. The doctor kept giving her antibiotics and meds. I wanted them to stop giving her the medicines but I didn’t know how to tell them that and was scared they’d think I was a bad person. So I kept giving her all these medicines but hoping they wouldn’t work…Reading this made me feel more normal.”

“My mom had Alzheimer’s and I prayed she’d die for over a year. After she finally passed, I missed being in dementialand. I guess I got used to living there. I also felt useless like no one needed me. I didn’t know how much I needed to be needed.”

“Amen. My husband is at the end of dementia and has COPD. He is tired. I am tired. I don’t eat, I don’t sleep, he doesn’t know what’s going on. I want to fast forward time. If I had a remote control I’d hit fast forward. Then I think about how I know that after he’s gone I will want to rewind but still can’t stop from wanting to hit fast forward. Don’t know how to change how I feel.”

“I thought I would feel sad when my sister died of Alzheimer’s but I didn’t. I really just felt mostly relief. But I still feel horrible that I felt relief. I feel like a good sister would’ve been sad. This blog post helps a little.”

I usually feel good when I write something that people “get.” If people say they can relate to something I write, I feel like I’ve been successful. However, I didn’t get that feeling as I read through people’s comments on this one.

I just felt…sad.

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