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.

18 comments:

Monica said...

Dear Laura!! I know EXACTLY how you feel. My father passed in July from a ugly Cancer. He had both an Ostomy and Urostomy bag. My mom, sister and brother all had there hands in cleaning him up, but I never did. I JUST COULDN'T DO IT!! I cried to a friend of mine about this and how I felt bad that I couldn't help my family in this and other ways, and she kindly and sincerely told me..."That isn't your gift!" Lisa-I have no doubt that you are supporting your family in many ways. Ways that may not be always hands on with your dad. You and your family are definately in my prayers!!

Monica said...

oops...i meant laura :) Lisa was the name of the person i was talking about.

Jilligan said...

Laura, I am so sorry to hear what you are dealing with. I know you don't have much time but if you can, try to squeeze in time to read the book, Bad Childhood, Good Life. My sister Jodie gave it to me and it was very helpful. I still stay bitter over alot of things but at some point you have to get rid of the relationships that are killing you. Maybe he is your dad physically but doesn't sound like he has ever been your father emotionally or even positively.

Monica said...

Hey Laura...turing forty was easy...someone's going to have to drag me out of bed to get me to face my 50th...Don't think I'll be able to handle that one!

Jill said...

Oh Darlin - how I wish I could take all of it away and make it better for you!!

First of all, that is so great that Mark is getting healthy!! Really, he is adding years to his life and his marriage - that is so wonderful!

Sophie hasn't had a spell like this in a long time has she? I wonder if your Dad's situation might have anything to do with it? (Probably not, just thinking out loud here.) And thank God for the little ones! They always seem to provide a laugh just when we need it! :)

I just don't know what to say about your dad. I have no idea what it's like and I won't pretend that I have some words of wisdom to get you through. Just know that I am pulling for you and praying for you.

I think everything you are thinking and feeling is probably normal in situations like this. I'm sure there are thousands of others who have the same thoughts as you while caring for a parent. "They" say it's one of the most stressful things a person can go through. Hey, maybe you should start a blog about it? That would probably just be one more thing on your list then, right? Don't need that right now!!

As far as turning 40 goes - sweetheart we are in our PRIME! Do you know how HOT 40-somethings are right now??? That's right girl, we got it going on! Embrace that age, and work it!! There's no way I'd go back and do 30 again, let alone 20! No way sister! 39-40 is where it's at!! (Does that make you feel better? Cuz I can go on and on if you want me to!) :)

Keep talking to Mark and your friends - you know what good therapy it is to get it all out (isn't that why we blog? for the free therapy?), so keep letting it out. And remember that your blogging buddies are here for you!

Love you bunches, Chica!! ((((hugs))))

Laura I. (G.G.) said...

Don't be so hard on yourself! You're doing the best you can, and you've got a rough row to hoe right now.

Thoughts and prayers are with you.

Vickie said...

hugs

MCM Mama said...

{{{HUGS}}} No advice. Just know there are lots of us out here thinking about you.

Helen said...

Laura...so happy that Vickie reminded you to post. It does help to write. And you are going through A LOT of stuff right now...I think your feelings are totally normal and appropriate for the situation. I, thankfully, have not had to go through what you are going through with your dad (my dad died suddenly and my mom is relatively healthy). But DB did have to go through something similar with both his parents. He expressed to me a lot of the same feelings you are having. What is important, I think, is to do what is right for YOU. Do what will make YOU feel good when you look back on it...whatever that is.

And, 40? Best birthday of my life! Make it yours. :-)

Shauna said...

Oh Laura... I wish I could give you a big hug... that sounds like hell. I don't know what to say but please know, i am thinking of you xxox

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Annimal said...

I worked many years as an RN on a critical care/long term care unit (now they are quickly shuttled to other facilities). I took care of many, many patients like your father. It is a 24/7 commitment, requires a lot of skilled knowledge as well as a cement stomach (bowel care, not a good time). Add that to the fact that this is your Dad, makes a very tough situation for you. Don't sell it short or feel guilty for very natural feelings. Many times I would just think that they'd be better off dead. But then I'd remind myself that there is a purpose for all things on earth. Maybe this time is to give yourself strength, to find what are your priorities and maybe it'll help with the grieving process after.

Cindy...154 said...

I am glad you posted. I know you are going through a tremendously rought time. It is pretty amazing that your weight is stable, even if you are not working out and you feel squishy. I relate totally to your title. I have not blogged as much either, and its pretty much for the same reason. Hang in there and so will I!!

steffy said...

Hang in there. Even in tough times - there is some lesson. When I was handling the family while my husband was doing chemo - it was hard but made me realize how much I appreciate our family.

No other advice about getting on that treadmill except, maybe just getting on it and seeing what happens. See if walking turns into running or heck just go for a walk now that spring is almost here!

steph h
www.livefitandsore.com

lsalant said...

Hi, Laura. Judging from experiences with my own elderly close relatives (father, mother, aunt), near-end-of-life self-absorption sort of comes with the territory. Towards the end, none of them showed much interest in any of their loved ones, despite having always done so in the past. I dealt with it by telling myself that it took every molecule of their being just to try to hold on and stay alive, so it was no wonder they couldn't get past themselves. Try not to take it too personally. It will just wear you down more. Having wiped a few elderly butts myself (which is difficult and humiliating for them, too), I can tell you that whether you visit out of love or responsibility -- or some combination of the two) -- your dad is happy to have you there. And years from now, despite the stress, rudeness and unpleasantness, you will feel much better about things because you hung in...whether he deserved it or not.

GWYN said...

Laura, I just discovered the wonderful world of blogging and stumbled on yours. I am so sorry for what you are going through. All I can say is keep keeping the faith. What you are doing, even if you think no one notices is tremendous! Just keep doing the best you can but remember you have to take care of yourself or you can't give to others! All the best....

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Vickie said...

it's been over two weeks - been thinking about you and wondering how you are holding up as things drag on and on. Please take a minute to drop us a note - even if you don't feel that you have anything positive to say - we are all missing you.