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Shes a menace i tells ya

A Detroit style pizza I made for my wife and her friend.

My wife is 36 and has a rare disease that causes low vision, mobility issues (Parkinsonsims) and dementia like symptoms related to memory loss, etc. Her older sister passed away in 2024 from the same disease at the age of 35 and my wife was diagnosed in May of 2024.

She still remembers me, but a lot of who she was is gone. My wife was a big fan of all things fantasy, a huge fan of Lord of the Rings and a general nerd. I can’t remember when she last talked about Lord of the Rings, though she and her friend watched Clue when I made that pizza.

Most of my time with her is dealing with her immediate needs. Managing her meds, doing chores, cooking her food and even putting toothpaste on her tooth brush. I know things will get worse; in some ways they have gotten worse over the last couple of years. I did finally convince her to use her wheelchair when we go out places.

That said…I feel incredibly lost. My person isn’t really here any more. While I have wonderful support from her mom and other sister, I still don’t have my wife really. I can take her out on a date…but in truth it’s mainly me making sure she is okay during whatever outing we do.

My friends try to understand, but none of them have dealt with someone who has had dementia. Even their parents.

I honestly don’t even know what I’m posting this other than the sense of loss that I have. In some ways I feel selfish about the loneliness; I’m not the one dying after all but I know that selfish feeling isn’t healthy. I miss her. I miss having a partner, a friend, romance and my person.

Edit:

Just wanted to thank everyone for their support. I learned about a new subreddit that I should follow, received a lot of kind words and encouragement for something that I already knew, that I should start up therapy again.

My wife doesn't have Huntington's, sadly her neurologist isn't even able to identify her disease. It's similar enough to some of the spinocerebellar ataxias. She, and her late sister, suffer from cone dystrophy which impacts her acuity and vision. Her cerebellum has significant atrophy which impacts her motor control, balance and movement. This is harder especially with her lack of depth perception.

Cognitive impairment, memory loss, aphasia are all things that she suffers from. Her sister also had seizures, though my wife hasn't had those.

My wife used to love to write poetry and that's one of the saddest things that she's lost. She has tried to write some over the past year, but her desire to do so has diminished. With her aphasia and struggle with words that was one of her favorite activities that was first to go.

She was the perfect kind of nerd for me. A fan of the Lord of the Rings extended editions, though I honestly struggled to sit through those. She loved the latest Spider-Man movie and wants to see the new Jumanji one. I think those are easier for her to associate with since she grew up with the original Jumanji and we've watched a lot of the Marvel movies.

Edit 2: Not entirely sure why my comments don't seem to be showing up. I turned off some privacy feature.

To u/PressureCoomer I am indeed a human. So is my wife for that matter. Unless I was replaced at birth...my brother did call me an alien once.

It's big.

Very strange spot, not sure what to do with it. I thought maybe some totes for storage and a curtain to cover, but honestly I have no need for the extra storage.

I thought about some decorations, like some kind of display but it being right above a toilet it feels unclean for many items (Lego, books, etc)

Would appreciate some ideas!

most wholesome thing I saw all week

Chill Guy (My New Character) - Phillip Banks

Chill Guy was used as a meme coin in 2024, resulting in Banks having to copyright the character, but this resulting in him getting doxxed by Crypto-Bros

Silly Cat (Later known as Boykisser) - Mauzymice

Silly Cat was only used for silly gifs, but later on someone else made a caption that would later be known as the Boykisser, what made it worse is that the boykisser gif was later used for predatory purposes. Resulting in Mauzymice to get harrassed off the internet. (wait what do you mean it got worse recently?)