Friday, March 26, 2010

Update from my new toy

Has it already been two weeks? It doesn't seem like it. I have been keeping busy, as usual, like all of you. I did a nice thing for myself and bought an early birthday present--an iPod Touch. I've had it for a few weeks but just realized I could update my blog from here. I'm on my iPod all the time at home after work. Somehow it's less offensive to use the iPod instead of my PC at the end of the day. Being on my laptop all day at work is enough computer time--the iPod doesn't feel like a computer though. Probably has a LOT to do with being able to hold this little baby in one hand. My laptop is 3 years old and weighs a ton.

Anyway...... Maybe I'll be able to blog more often.

Things are mostly the same. Sophie went through a horrible migraine spell last week and we figured out she's now sensitive to all chocolate. We've eliminated that and several other common triggers to see if it will help. So far so good. She's had some dizzy days but nothing horrible. It's been hard for her, giving up chocolate especially, but she knows it's worth it.

My weight and body are the same--152ish and squishy.

No changes with my dad. His decline is still happening but slowly. We are all surprised he's still with us. He could be here another 6 months but I hope not. His mind is sharp and he isn't ready to die but his body is done. It's so hard to watch.

I bought a book from Kindle (also on my iPod) that Jilligan recommended called Bad Childhood Happy Life. I've just started reading it. I see a lot of myself already.

Leaving for St Louis this afternoon for a Brownie weekend with Sophie and several other moms and daughters. Should be a good time. I'm so thankful she's health enough to go.

- Posted using BlogPress from my iPhone

Monday, March 08, 2010

When you feel like you can't say anything nice, don't blog anything at all

It's really hard to blog when you feel like you've got nothing positive to report. And mostly I've just felt like keeping my mouth shut. But I realize I owe my friends a report once in a while, or you might think I got hit by a big bus. Thank you to Vickie for always pulling me back. It does mean a lot that you are keeping tabs on me!

So, here I am....trying to figure out how I can write something today that won't sound dire and pathetic.

I guess I'll start with the good points in my life.

My husband has FINALLY decided he's getting healthy. A few weeks ago he had a calcium score done on his heart, & he has mild heart disease on the right side. For many this might sound like horrible news. But for Mark, it's good news. His dad died at 50 & his oldest brother at 57 of massive heart attacks. Mark will be 48 this year. Last year he pretty much felt like he was under a death sentence. But the term "mild" implies that impending doom is not so impending after all, and it also helps him realize he still has time to make changes to his diet & exercise to keep his heart as healthy as possible. He's already lost almost 20 pounds, he looks better, & he feels better.

The kids are wonderful. Sophie did just go through a long dizzy/migraine spell. 10 days this time. She missed 6 days of school. She's still a bit dizzy but it's not debilitating and she made it back to school today. We see the neurologist for a follow up in April. I'm guessing Sophie might need her meds adjusted. We'll see. Luke is healthy and hysterical. He keeps us all in stitches. He's the most loving and precious little boy ever. Not that I'm biased or anything.

There are probably other good things. I've got a roof over my head, clean clothes, plenty of food in the fridge, business is OK right now, spring is on the way.

But so much of my being is tied up in the negatives. My brain must be sucked nearly completely free of happy chemicals, despite the wellbutrin (and calcium & other healthy brain supplements) I take daily. I cry a lot & at the slightest things. I feel tremendous guilt over my Dad's situation. I was trying to take care of him 2 days a week, so I could "do my part" and alleviate my sister's time at Dad's. I just couldn't do it. I did for a few weeks, but it got so overwhelming--I basically had one day off a week (Sunday) and it just wasn't enough. I spend a couple hours almost every day at work on Dad's financial & medical stuff. I handle all his bills, his medical appointments, his VA paperwork & requests (thank God he was a veteran, because he's getting a lot of money every month which is paying for his supplemental nursing care and his specialty equipment--we'd never have been able to take care of him properly without the VA), his Visiting Nurse schedules, and the overall schedule of who is going to be there at what times to take care of him. It's not like I'm not doing anything for him. It's just that my stuff is behind the scenes & no one sees it but me. All the paperwork and phone calls are time consuming and can wear me out.

Mostly, though, I can't handle my dad's physical and mental state. He can't do anything for himself--and I mean nothing. He has to be moved with a Hoyer lift, which is difficult and frustrating because he weighs 240 pounds and his belly is hugely distended. He can barely swallow anymore. He can't talk at all. Everything takes hours--an hour to take his medications, 2 hours to feed him one meal, 2 hours for a bowel movement (and yes, I had to clean my dad after a BM...that about did me in), 2 hours for washing & grooming, an hour for a simple conversation because he has to spell out every word one letter at a time on a letter board (he can still move his hands, just a little bit).

Just writing all the things that he can't do brings me to tears. As hard as it is for me, I can't imagine what kind of hell Dad is going through.

Admitting that I can't be around him anymore is excruciatingly difficult. Worse than that, though, is my ever present thought that if he'd just die already, I could get on with my life. I can't even describe how hard it is to live with that thought. He'd be better off gone, we'd be better off if he was gone. ALS is not curable and there are no meds to make him better. His doctor gave him 6 - 12 months to live back in September. But Dad refuses to give up. He just got an eye gaze communication device last week and a new laptop computer so he can do whatever he thinks he can do with his hands while they can still move. He is as difficult and stubborn as ever. He can be very abrasive and hurtful--even one letter at a time.

Last Thursday I drove the 30 minutes to his house after a long day at work, to see him & his new eye gaze machine & to let him see Luke. I didn't have long to visit, maybe 90 minutes. Instead of asking me how I was or how my kids were (Sophie had been sick over a week at that point, & he knew it), he spent his time with me asking how much he could spend on a new laptop PC and explaining all the bells & whistles he wanted on it. He spent around 30 minutes on this with me. Not once asking me about me or my family. I don't know why it surprised me. I guess it didn't surprise me, just disappointed me.

There's a reason I haven't been part of my Dad's life the past 10 years. It's not gone away just because he has ALS. He's an emotionally disturbed & unbalanced person. And he's still my Dad.

Remarkably, I'm not the size of a house yet. My weight is steady at 152, give or take a pound. I am squishy, though, & haven't worked out in over 3 weeks, despite now having a treadmill in my bedroom. I've completely scrapped the marathon/half marathon on April 11th.

Which brings me to my other crisis of mind--I'll be 40 in a little over a month. The marathon was going to be my big "F--- You Forty!" Instead, I am probably the most out of shape physically and mentally that I've been in several years. I wish I didn't feel so freaked out about turning 40, but I do. It's just one more thing messing with my head.

I've talked with Mark and a good friend from church about all this. I need to talk more. I have an appointment for my quarterly meeting with my psychiatrist next month. I'm doing lots of pampering things for myself. Last week I had my nails done, my hair done, and my toes done, all in the same 7 day period. I can't for the life of me make myself get on that treadmill. I know if I would I'd feel better. Maybe just writing about it will make me try again.