Wednesday, October 17, 2012

The single worst day of my life

Bob, the year I met him.
Before you read the rest of this, let me assure you that my husband is getting better.

But that wasn't the prognosis three weeks ago, on September 26, when a doctor and his staff called me in for a meeting. I had a knot in my stomach on the way to the hospital, and the knot got a little bigger when I saw a few too many un-cheerful faces.

In the meeting, the doctor droned on for what seemed like an hour about all the things that were wrong with my husband. A whole litany of organs weren't doing well. On top of everything else, he hadn't woken up since they took him off sedation. His gut wasn't working, so they couldn't feed him. He couldn't breathe on his own. He needed too many medications just to stay stable.

The doctor finished his monologue by saying they didn't expect him to get better and that the best they could do is keep him comfortable. There was no chance he'd improve. There was no hope.

I choked out, "how long does he have?" and the doctor said it could be a few days or a few months, but it was up to me, because I could schedule a time ... Hearing that was just about more than I could bear.

There are seven stages of grief, and I went through all of them simultaneously. Then I started over again. I was swinging from being an emotional puddle to being completely rational and logical. I cried buckets of tears and gasped and howled and hyperventilated and whimpered.

I went to my in-laws house to tell them their son wasn't going to make it. Or, really, I just collapsed in their doorway.

I spent several hours informing the rest of my husband's family by phone, one after the other. Then I went back to the hospital for a while to say a few words to my husband and hold his hand.

Then I came home to take my elderly dog to the vet. I'd made the appointment the day before, after she'd hurt herself while I was out. She had been trying to get up from a nap, but couldn't do it on her own and had managed to snag a dew claw and bleed all over the floor.

So I made an appointment at the vet, and brought her in on the day I was told my husband wasn't going to make it. I was a wreck. I had hoped I could keep my furry companion around for a little longer, but she let me know it was her time to go.

All I could think of was that at least when my husband got to the other side there would be a wet nose and wagging tail to guide him on his way.

It was the single worst day of my life.

I spent the night tossing and turning. You think of strange things at a time like that. Towards morning I dozed off, but was awakened by a call from the hospital. Bob had suddenly taken a turn for the better. His eyes were open, he was responding to commands, and they had taken him off most of the medications he was on. His vital signs were good without any help.

It took me a while to process all of that. To realize it wasn't some sort of dream. To realize that the day before wasn't a nightmare. To rekindle that glimmer of hope that the doctor had extinguished with the certainty of his diagnosis.

Back at the hospital, everyone was all smiles again, and plans were being made for Bob's continued care with a renewed commitment towards recovery. I was exhausted and elated. This time, informing the family was a much more pleasant task.

If my life was a made-for-TV movie, there would be a scene with Bob moving towards the light and a black dog growling and snarling and not letting him past. Bob finally gives in and wakes up. The dog smiles, wags her tail, and leaps into the light. And all is well. Credits roll.

But my life is not a TV movie.

And we're not anywhere near the end of this story.

Since that day, Bob has been improving. Slowly, for sure, and he's got a long way to go. But now the focus is beginning to turn towards rehab. He's still got medical issues - a surgical wound needs to finish healing, and he's got a persistent lung infection. But these are things that can be fixed.

He is being weaned off the ventilator and is doing well, but it tires him out a lot. They've inserted a feeding tube and have removed the IV feeding. They have started re-training him how to swallow - first with ice chips, with the hope that he'll be able to being taking food soon.

The therapists are working with him to get his muscles working again. He's getting movement back, but he has very little strength. A helium balloon could win in an arm-wrestling match.

Some days there is significant progress, some days there is just a little. Some days, he's just plain tired. But he is moving in the right general direction. For someone who was supposed to have a few days left, he's doing amazingly well. For someone who drove himself to the doctor because he wasn't hungry, he's in pretty lousy shape.

Did I mention that this is going to be a long recovery?

I don't mean long in terms of weeks. I mean months. Bob will not be home soon. When he gets released from the hospital because his medical issues are fixed, it's likely he will be transferred to a long-term rehab facility. It will be a long time before he is home again..

Meanwhile, there are other issues to contend with ...

I've been pretty public about my husband's medical condition, but the one thing I haven't mentioned is ... insurance. Or lack thereof.

It's not quite as bad as it seems. I won't be homeless. I won't starve. But it's going to be incredibly sucky for a while. The good news is that my husband has been in the hospital long enough to qualify for medical financial aid. When that's good news, you know things are pretty lousy, right?

The bad news is that my husband hasn't earned any income since he went into the hospital on September 6, and he's not going to be making any money in the foreseeable future. I can hear some of you thinking, "unemployment" but you don't qualify for unemployment unless you're actively looking for work. I can guarantee you that my husband hasn't been sending out resumes from his hospital bed.

I am filing to gt my husband on disability and hoping for the best. I've been told that it can take several months before a decision is made, and that they might deny us on the first time around, and I might need to hire a lawyer to appeal. Maybe things will happen faster. Maybe not.

I hate asking for help, I hate the idea of taking handouts ... but the other option is eventual bankruptcy, and that's something I like even less. By taking the financial aid, the hospital and doctors will get paid. With bankruptcy, the hospital and doctors will get stiffed. I'd rather see them get paid. I'll take the aid and find a way to pay the rest.

So, long term, we'll probably be fine. A few years from now, it will be nothing but a bad memory.

But for now ...

It's not just my husband's income that's an issue. I've taken some time off of work, so my income has been greatly reduced. Not to mention that I'm mentally exhausted, emotionally fragile, and usually sleep-deprived. I know I need to start making more money, but it's going to take some time before I'm up to full speed again.

Short term, the money for paying everyday bills will be running low pretty quickly. I know I can borrow, but I don't want to borrow money that I might not be able to pay back. So, I'm gonna go the beggar's route and put up a PayPal button and if anyone wants to chip in, I will be forever grateful.

Support Amounts

Note: if you've been here before you might notice that the Donate button is now a Pay Now button ... PayPal has rules about donations, and I didn't want to run afoul of them. What are you buying? A great big heartfelt THANK YOU!

If this is something you don't want to do, that's perfectly fine. I honestly don't expect it. I'm just putting it up there so those who want to, can. If I had the energy, I would run a bake sale or raffle off stuff, or sell an e-book, but at the end of every day I run out of time and energy before I run out of things I should have done. So, no baked goods for you. Maybe later.

Please note, too, that this is not a tax-deductible donation - I am not a charity. This is more like me standing on the corner with a tin cup. Or however you want to picture that.

Please, if your situation is worse than mine, mentally, physically, emotionally, or financially, don't even think about donating. We all have out own needs, and I know that there are many, many people worse off than I am.

And if you have any doubt whatsoever about the truth of my situation, please don't think about donating. Like I said, I won't end up homeless. I won't starve. I won't rob a liquor store. But rest assured, if you do donate, the money won't be used to pay for illegal drugs or hookers. Unless you consider gas and electric illegal drugs or you think the insurance company is run by hookers. Which I guess is possible. But, nah, not likely.

And on the positive side ...

This whole situation has really changed my attitude about a lot of things. In many ways, it has made me see things in a more positive light as I celebrate each small improvement in my husband's condition and appreciate the time I share with him.

It has also highlighted the fact that money certainly isn't everything. All I really want is for my husband to come home to me, healthy. I'd sort of like to have a home for him to come home to, but I don't care if I never have another new car or a vacation or a latte at Starbucks. None of those things are necessary for happiness.

There will, however, be much joy on the day my husband comes home, and much happiness with each step he takes on that long journey to get here.

If you do donate, thank you from the bottom of my heart. When I am in a position to do so, I will return the favor.

If you haven't been keeping up, here are the previous posts I wrote about his hospitalization: