I’m gonna miss her when she’s gone!

I guess that’s why I felt the need to write that last post. Of course I’m going to miss my mom…but this week…I just have a feeling that she’s tired of fighting the ALS. Her spirit isn’t the same - it’s changed somehow in the last couple of weeks. Maybe since she gave-in to the fact that she’d have to quit work…? She’s just not the same lately and I can’t shake this feeling that she’s hoping she’ll die in her sleep.

Why am I thinking these things!?!?!? Am I a bad daughter? Should I be doing something different? I feel lost…sad…confused…helpless…

Brother stopped by at lunch today - we only chatted for about 20 minutes because I had a meeting for work - but it was good to see him. I told him that he needs to get out to see Mom and he needs to get the kids out there as often as possible. I told him about my feeling that things were drawing to a close…he mumbled something about not waiting until it was too late and something about regret and then he was gone. I really hope that he gets out there…it would mean the world to Mom.

 

Just another laundry Sunday

So I’m folding towels last night and my 4-year-old was helping and the way she folded the towels just about drove me nuts! Am I the only one that has to have towels folded a certain way? There’s the square-fold and the tri-fold. I prefer the tri-fold for bath towels. Anyway…she always helps me by folding the washcloths and hand towels. She can’t really mess up the washcloths (unless I happen to notice the stripes). When I fold a towel, seams to the inside, fold on the long edge, etc. Why does this bother me so much? I’m the same way when it comes to loading the dishwasher - everything has a certain way to be arranged in the dishwasher. And - it’s only the dishwasher - I could care less how the dishes are arranged in the cabinet. Shirts need to be hung on the hanger the right way (did you know there was a right way?). Cap just puts the item on the hanger and hangs it - but if I catch him doing it backwards, he has to re-do it. Everyone knows the right arm of the shirt goes on the open side of the hanger - and the right side of the shirt is at the back of the closet.

The kids are all gone today - it’s just me and Cap - I’m doing laundry and making loaves of bread (by hand - none of that bread machine stuff) to share with the in-laws and Mom. TP is with Grandma decorating for Easter. BT is out skating. Cap’s playing Shadow of Rome which has turned out to be a pretty good game.

Yes - it’s true - Cap plays video games a lot and instead of fighting it - I’ve embraced it. The games that he plays are sort of fun to watch. Usually RPGs - it’s like watching a movie that I can participate in. I’m not so keen on the battle parts - but the puzzles and the plot I really enjoy. My favorite to watch (I’ve even played a litte) is Final Fantasy.

Sis just called -I’m really getting sick of her. I don’t know why she’s so opposed to helping out with Mom - but she’s making me crazy. The way she complains about the lack of help from our brother, you think she’d be on top of the game - but as it turns out - she’s no better. I know she has to deal with it on a daily basis since she lives with Mom - but damn! Where’s her compassion?! She moved in with Mom back in the summer - so she could help Mom and so she could pay off the loan faster that she used Mom’s car as collateral for. As soon as she had everything paid off and when Mom needed her most she decides to buy a house and move. How incredibly selfish! She’ll stay there as long as she needs Mom - but whe mom needs her - forget it. This means that Mom as to move and has nowhere to go. She can’t come here - she can’t get into either of the bathrooms -she can’t go to my brother’s for the same reason. Mom’s semi-handicap accessible apartment is really it and we’re all she’s got.

I’m not sure where she’ll go the end of this month - I wish I had been smarter and insured that I had the money and resources to cover something like this - I feel really guilty that I can’t help Mom more after everything she’s done for me. I don’t think that I’ll ever forgive myself…

 

Just another day in…paradise?

I spent the last couple of hours wading through medical bills from the last few months. It turns out it’s not as bad as I thought it was. I owe 18k and there is 14k that was never billed to insurance. Hopefully they will pay a large portion of that 14k. I set up payments with everyone so maybe now my phone will stop ringing! I also set up my next follow-up appointment with Drs. Davis and Davis - Monday I’ll call Amber and schedule the PET scan.

Today was good - work was quiet - I snuck in some laundry. The weather was so nice - the kids played outside this afternoon riding bikes and playing on the trampoline and in the sandbox. It was nice to have them out of the house.

This evening, my Cap is working on taking the glass out of the 300 gallon fishtank that he built. The thing keeps springing leaks. He thinks that the silicone holding the glass on the gel-coat isn’t sealing like it should. Poor guy - after so much work! But as least he has a hobby.

I talked to sis today and found out that Mom’s not using her BiPap at night to help with her breathing. She also said that Mom’s gasped a few times and she had to go help her. ALS is such an awful thing to watch. I find myself staying away - simply because I don’t want to see what it’s doing to my Mom. I still see her nearly daily - but I don’t just spend time with her like I should. I think that Mom turned in her resignation at work today. I know that had to be really hard for her. She told Grandma and Grandpa B yesterday that it’s getting to where she can’t give shots anymore. That means her hands are going. I knew that her arms were getting weak…but didn’t realize how significant the weakness in her hands was. The ALS is now evident in every part of her body - her legs (where it started), arms, hands, torso, throat…it kills me to think that it’s going to get even worse.

I know that I need to talk to Mom about the hard stuff - but I just can’t seem to bring myself to do so. I need to ask her about feeding tubes and tracheostomy and what her wishes are. I just don’t know and if there were an emergency (since she’s been choking and gasping) - I wouldn’t know what to tell the paramedics and/or doctors. I think that being a nurse and always having been afraid of this disease that she will not want anything but God keeping her alive. But I just don’t know - she’s got so much to live for. So much to stick around and see. And I guess that’s the point - that’s all she’ll be able to do eventually - just watch from her prison which she used to call a body.

I can remember during the Jerry Lewis telethon one year - probably around 1987 or 88 - Mom was explaining to me what ALS was how you became a prisoner in your own body - how your mind remained sharp, your eyes and ears unaffected, but unable to move, eat or breath on your own. How it would have to be the most horrifying way to live. Fast forward nearly 20 years and she is literally living that horrifying existence… It’s like she knew in some strange way…