7/2/15

Coffee break

Life is so much easier when I can actually clean without tripping over people. Mom has a couple appointments today, the boys are hiding upstairs and I'm enjoying an actual coffee break. No TV. No Food Network. No can you do this 30 different times.

It's been a trip. This life of ours. I've made a lot of mistakes, things I should have known better than. Some things we're learning along the way. Every day is a learning experience. So much is going on with J. And once we think we have one thing ready to go, something else pops up.

I used the MELD Calculator yesterday. J's MELD is holding steady at 10. Thats a good thing. It means he's not sick enough for transplant. I went by his labs on June 19th. Part of the what I want to use this blog for is to raise awareness for the issues we deal with. So much more research needs to go into these things. J is an interesting case, a challenge for most doctors, a bit more than some want to take on. I'll be adding pages, blog posts and links to articles as I find them and as I find time.

I also want to draw attention to the growing problem of Homelessness due to medical issues and Medical Bankruptcy in America. Homelessness, I have some experience with. I also want to draw attention to the problem with the destruction of the All American Family. Something else I have way too much experience with. So many families are dysfunctional today. I wish I knew what caused the breakdown, but I can only assume.

I want people to know that despite all of that, there are ways to move on. There is a possibility of forgiveness, not for them, but for you. There are people out there that care. You just have to find them. Honestly, with today's social media platforms, its not horribly difficult. You just need to strike up conversations. And I do understand that loneliness that is just all too real. Especially going into yet another, what used to be, big family holiday.

I'm not the only one feeling the pinch. My boys have never known the big family picnics, so they're fine with spending the day together and hitting a fireworks show. But my parents remember. Mom can't do much anymore. She went from a fairly active (if you assume Bingo is active) lifestyle, to sitting on her bed watching Food Network twenty.four.hours.a.day.every.day. Dad spends most of his time either gone or in his room. He comes downstairs to go out to smoke, talk to Mom, and complain about what needs done. Thats it. He finds somewhere to go almost every day. Honestly, it doesn't take three hours to go to Giant Eagle or WalMart and seriously, what is that thing about him always taking a book with him?

Mom still sits on her bed. Usually falling over going to sleep. Now and again she gets a bug up her butt about doing something. She has her puzzle books, her coffee, her Mountain Dew. It's rare that someone calls who isn't one of her care team. Rarer still when someone visits. I get so damned frustrated with her, but truth be told, she is living a pretty pathetic existence. People claim that they can't stand to see her this way, but she honestly could stand just to see anyone. Yes it's hard, but this is life as true as it gets. Nothing is going to change that.

Yes, it's hard on the boys and I to see all of this going on. I hate emptying an adult potty chair, the boys have become experts at giving her whatever privacy they can so she can take care of her bathroom needs, dressing and bathing. And yes, it is incredibly frustrating to deal with, we know she doesn't have long. We know we aren't particularly wanted here, but we're all she has. We'll be here as long as needed. I could deal better with things, and I'm going to make an effort to try. That doesn't mean I won't slip up. It doesn't mean I won't get pissed off. It doesn't mean I won't cry. It means that I care enough to try and I truly want to better myself as a person.

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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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