Wednesday, September 02, 2009
I'm going back home in a few hours. I just checked to see if I could extend just another day, but it's not working out that way.
I have a list a mile long still to complete.
My Dad's not ready to be left here without me.
But we're as ready as we'll ever be, and if he can't manage with this week's worth of propping up, we're going to have to make even more drastic changes.
We got some good news today and some bad news, but the good news about the bad news is that it's only bad news if my Dad doesn't act on it.
The good news is that they figured out what all the pain's from. He has a completely untreated compression fracture in his T11. It's not cancer, but it's definitely compressed. T12 is the one they already filled. That means if they do vertiboplasty, and it works to fill that fracture, he could be almost perfectly fine as far as pain goes.
That means he'd be off the narcotics, which are causing the pain, nausea and constipation. He'd get his appetite back, too.
But he'd have to go through the vertiboplasty, and after the biopsy, I'm not sure he'll choose to do that. (We did learn that the biopsy was way more invasive than we suspected. He had to go back over 5 times to get a good sample, with a larger needle than he originally used. No wonder, right?)
Additionally, there's actually a way to rebuild some of the bone loss that he already has. Forteo is a daily injection that can, over 2 years, give him more solid bones than he has now. BUT, he doesn't want a daily injection, he's too shaky to give it to himself, and it probably isn't something that fits under Hospice care as it's cure-oriented.
I pointed out to him that he's got 2 things he can do that are fairly low risk. In other words, Dad, without major surgery, you might actually be able to recover to some kind of normal place.
HOWEVER, then he's got the emphysema going on, and it's pretty obvious that's wearing him out, too.
Sigh. I talked to him about screwing his face all up in a frown and being negative all the time, but you know, it's kinda like talking to Sarge the tree sometimes. :) His branches wave in the wind some, I can make a few suggestions that make a little change, but for the most part, they've grown how they've grown how they'll continue to grow.
Thanx for reading all this and letting me chronicle it all out.
Time to get more tasks and packing done. *I* need some of these caregivers to come rescue me. :)
Tuesday, September 01, 2009
I'm utterly completely exhausted. 4 hours of sleep again, headache when I woke up, people in and out of here, all this information, all these errands, all these decisions, putting together a schedule for my Dad to follow everyday, and trying to do all this while my Dad is exhausted and overwhelmed, too.
Then, there's work pulling on me, email messages, clients, questions, employees.
But who cares. It doesn't matter one single bit.
Because they called. The nurse called. That was my favorite part. I always want to hear from the nurse and not the Dr. because the Drs. always deliver the BAD news.
She left a message, but before she even gave me the answer, I knew. You could hear it in HER voice.
And the answer is? The test results were negative. No cancer found. Woohoo!
Is there something wrong with me? I almost PUKED when I found out! What? Don't you almost puke when you get bad news? My knees went weak, I started shaking, and I literally was so frigging happy, I almost puked.
My Dad? He's so happy it wiped him out and now he needs a nap. But first, there's someone here giving him a shower so he doesn't smell like a goat.
The home health care workers are recommending he receive Hospice status as "adult failure to thrive" because every time they pull services out from under him, he craters.
But no cancer.
Yup, we need to make some serious decisions about his future. Obviously if he's having such serious problems they suspect cancer, some changes have to be made.
But no cancer.
I'm so happy, I could puke.
Monday, August 31, 2009
4am - Dad wakes moaning. I bolt upright, full-tilt panic, fly into his room. He's nauseous, so bad, he says he's going to throw up. At 4am, I can't figure out why. Everything's been regulated for awhile.
No more sleep for me, I'm terrified to close my eyes.
6:45 am - Time to get dressed because the nurse is going to be here at 7:15am.
7:09 am - The nurse arrives to evaluate Dad to see what kinds of services they can provide, review his meds, and discuss arrangements. Did I mention I didn't go to bed until probably 2am cuz I couldn't sleep? I'm supposed to complete sentences and make life decisions for my Dad?
The nurse was here until 8:15. She tells us that the nausea is probably caused by the increase in his pain meds. Sh*t! Because it was delivered in a skin patch, and he was already wearing a lower dose, I didn't think to ask!
There's going to be a nurse here twice a week, a home health aide twice a week. A social worker and a physical therapist will be here, too, but I don't know how much. I have to get all of this set up on Tuesday before I get on the plane to go home.
Between 8:15 and 9:15am, I got my Dad's pill's sorted out (no small task), his breakfast and lunch set up, my stuff packed, tell him I'm scared to leave him alone all day, but then had to haul out the door because I was supposed to pick my Grandma up at 10, from a church an hour away. That's right. I have 45 min to get to something an hour away.
I was talking to my husband about the general situation, and drove right past an exit I've been taking my entire life, making me even later to pick up my 98 year old Grandma from the back of a church. My husband had to look up on a map online and tell me how to get to the church, while I was 1500 miles away, sweating from every pore and not managing well emotionally (see how nicely I worded this?)
But then I got to the church.
And my world slowed down for just a little bit.
My Grandma, who everyone else in the family thinks is a b*tch, was a bright spot of sunshine for me. I have a special day, ordinary yet unforgettable, that I'll remember for a long time to come.
She came outside, and never even noticed I was late. She was happy to see me, very happy to see me. Healthy, wants to open her OWN car door, put her OWN seat belt on. BTW, if you haven't seen me post about my Gma yet, she's 98, blind, and lives in her own house.
We went to the bakery, the Family Dollar store, the Pick n Save, and Target. In there somewhere, we went to lunch. And she let me pay without arguing. We split a waffle and a frittata. We talked about obituaries, and funeral protocol, which sounds rather morbid, but was really a great conversation.
And then I showed my Grandma what a text message was because one of my SparkBuddies and I (PSUEDOBRITCHICK) have been texting to keep what we can of our sanity. She heard the beep and asked what it was. So I texted my Grandma on the cell phone I got for her several years ago. Then I showed her how her phone would text me back. I know she can't do it, but she's interested, and that's a blast to see.
Then we went back to her house where she tried to push donuts on me (fail) and grapes (success). I addressed sympathy cards for her to my own family because my uncle passed away. That was weird.
I showed her an incredible notebook and pen called a Livescribe that records what you say while you write, then plays back what you were saying at a specific spot on the page when you tap on it. (I'll be writing a review about this tomorrow or the next day for a magazine.) We played with that for awhile, and she thought it was wonderful.
She noticed my hair was cut. How did she do that when she's so very blind. Oh, the dark didn't go down as far. She liked it. Is that a good thing when someone who can't see likes your haircut?
She noticed I was thinner, too. We talked about what she could actually see. No details, just shapes and smears of color.
She tried to give me this little weather thing with a witch and a boy and a girl that I've loved since I was little. No, Grandma, I don't want that in my house, I want it in YOURS. It can be in my house later.
She started talking about not being here anymore, said she's ready to go. I said Grandma, are you happy? I know you have issues with vision, but are you enjoying your life? She told me about all her friends, about the things they do, the charities she supports, the organizations she belongs to. But she said if her MOTHER could see the mess her house was, she'd be very ashamed. I said Grandma? Your mom's not around, so who cares. Live your life. You are happy, you are enjoying your life. I told her I love being with her, and although I know she can't live forever, I want more time with her.
She gave me directions for how to get back to the hwy I've been taking back to my Dad's for the same number of years I've been coming there. I kind of poo-poo'd it, but of course, you and I know I didn't find my way there too well, so maybe I needed it. I called her a little while later, right before I got on the main hwy and said "Hey, did you get that crazy granddaughter out of your house?" to which she effusively told me how much she loves me and how much fun she had and how precious this day was. And you can't IMAGINE how NOT my grandmother this is. I don't think a soul in my family believes it when I tell them how she is with me after I set boundaries down for behavior with her.
Then she told me when I called I'd gotten her off the "pot" as she calls it. My call to my Dad telling him I was heading home got him running in the hall to the phone. Good for BOTH of them, eh?
I got to my Dad's, ran more errands, got groceries, made him dinner. We had a great conversation about part of his work life. We talked until 11:30pm, he was awake, and alert and feeling much better. He went to bed, I stayed up until 3.
And got a big fat zero on my heart rate monitor for the week.
I'd write about my day today, but it's not over. So far, no test results.
I'm grateful, as always, for all of you, but last night? I was incredibly grateful for the respite of Netflix Instant Queue and those mindless episodes of The Office. As I don't watch TV and haven't for almost 2 decades, there's lots of mindless activity I haven't experienced out there, just waiting for me to enjoy in the digital world.
I've noticed that after a short time, while you're waiting, if everything SEEMS a little okay, you can quickly put yourself squarely into denial about what might actually be going on underneath. More about that when I write about today tomorrow.
Thank you so much, all of you, for commenting, sending me goodies, writing me emails. This site right now is an incredible resource for relief, distraction, comfort, friendship, care. It was really created to provide a resource for weight loss, and in a way it is providing that for me. It's taking a little weight off my heart by giving me a place to let all this out.
Saturday, August 29, 2009
They set him up for a biopsy like it was no big deal. But I know how fragile he is, and my alarm bells went off.
So I came up here again.
And it all fell apart.
My brother was here yesterday, but he had to leave. So I'm here alone.
I had to call an ambulance this morning, and we've been here since 7. My brother and I are getting on the phone and talking this through, and at first I was thinking it wasn't fair that I was having to deal with this, but it's probably best we're not both here. That way he can step back and think about it, which he's doing, and I can sit in it and talk to resources and make observations. And together we can figure out what's best, which we're doing.
I'm in between calls right now. We got cut off and he needed to do something else.
Dad doesn't want to go back to rehab. He's been crying and clenching his fists. He feels helpless and frustrated. He's hurting, he's scared. I bet he feels like his world is tilted like I do, and if we move it just so, it will go back to right.
This logical part of me knows that I'm wrong. His logical part knows it, too. But we're trying to make deals, if only for a few days. He wants to be there, if only for a little while, just a few days. And I'm trying to figure out how to let that wish happen. At least until Monday, when we get results from the labs.
All that hope, pinned on Monday. But as my brother pointed out, and I'd been thinking about too, Monday really doesn't exactly matter. Because even best case scenario, his body is crumbling and falling apart. He's made of glass. A twist in a shower broke ribs. He's lost 10 pounds. He can't feed himself, he can't deal with any tasks, and he sure can't manage a crisis.
And that's before we even factor in what might be the root cause of all this.
Then I'm supposed to come back and deal with my own issues, these lumps in my neck that are burning. But it looks like I may need to stay until Wed., when he goes back to the pain clinic for final answers. Who else will ask all these questions. Which underscores how he shouldn't be up here in this city alone.
It's like everything has come too late. We should have done something before there was crisis. Now it's too late to move him and too late to fix this, and too late to have many choices.
I told my Dad about Sarge, the tree, today. Perhaps not a good idea because it brought a fresh round of tears. But I wanted to tell him how much we cared, and how much I wanted things to be different.
I wrote a blog last night about how amazing all your comments were when I asked for ideas. I have to post it later, but for now, please know that just your comments, laid intermittently over my day yesterday, brought their own kind of comfort, their own kind of relaxation, a moment of respite, a warm hug in the dark. Exactly what I was asking for, too. It meant more to me than any of you can know.
I appreciate you reading all this. I just need to get it out because it helps me think it through. And it helps me to hear from you, too. I know you can't fix a thing just like I can't. But next time you're asking yourself why you're here? Please know how much you've helped me.
And next time I'm asking myself that question? I'll remember the many times in the past few days my dad's told me I'm an angel and he doesn't know what he would have done without me.
Friday, August 28, 2009
First, thank you for all your kind comments on my last blog, your goodies, and emails and comments and love. The friendship and warmth and caring I've felt from you and my face friends has made this more bearable.
I'm in Wisconsin now, my brother is here, and my Dad is asleep. He went to bed 2 hours early, exhausted from some bathroom issues today.
My brother and I agree that regardless of tomorrow's biopsy outcome, something has to change in my Dad's current situation. He's not able to take care of himself, and as my brother pointed out, when he slacks on eating, drinking and walking because he doesn't feel well, it has a circular, tail-spinning effect.
We don't know what the answers are to anything yet. I feel like my world has been tilted sideways, like I have vertigo and I can't get my head right. I'm struggling because I go to sleep and for a few hours I forget. Then I wake up, and some nasty panic sets in immediately, as soon as I remember and realize this isn't a nightmare, it's for real.
And my son, who I hadn't seen in 5 years until not so long ago, who I had coffee with the other night, is leaving for a job in Afghanistan tomorrow.
I've been sick for over a month now. I've been writing about it, and if you read Broken Heart, you know I finally figured out what the pain I've been feeling is; my heart.
I'm sitting on my dad's couch, and the pain is so constantly with me, that it's robbing me of what little ability I might have to concentrate in the midst of all of this distraction and upset. My back is tense, my ears and neck hurt, my chest is tight.
My hours are insane, and working together has been pretty hard on my hubby and I recently. There's other stuff going on, as you've been hearing about, but I'm guessing having major issues with health, marriage, career, parent and son all simultaneously probably trump any other small stressor I might have.
I will solve what's wrong in a bigger more permanent way as soon as I can. But there's this moment, and this day and this week to get through, and they're not going to be easy.
So in the meantime, I need some ideas. A quick fix, something to hold me over until I can get to a place where I have space to make some bigger changes. A hold-over, a first easy baby step. I've seen so many of you solve such difficult challenges. I'm hoping you'll have just an idea or two you can share with me.
I need a routine, something dependable, easy to remember, effective, useful in an emergency. I need to be soothed. I need to find peace, and fast. I need something to watch, follow, do, so I don't have to think. It can't stretch or twist me (no yoga), it can't involve needles, it can't make me sit too still either. If I don't stop hurting, I'm gonna go crazy.
I know I can't change what's coming or fix it. I am trying to remind myself that the whole reason love and life are so precious is because of the persistent presence of constant change, and the finite nature of our existence.
But if I can find a little relief so I can face this with a little less of my own physical pain, maybe I can have a little more grace as I walk through these inevitable moments.
I'm not religious, but I'm asking for a miracle, I know. This isn't easy to fix. But it's not the only area of my life in which I'm hoping for a miracle right about now. And it's definitely not the only area in my life that's gonna be crazy hard to fix.
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