February 2009 - The Worst Fall Yet

Two weeks ago, a friend told me it was time for me to have a life again. I realized it has been five years since diagnosis. Five very long years. What does that mean, I thought, to "have a life"? I think I have carved out an existence that, though very different from five or six years ago, is certainly okay. I don't think I'm depressed, though I'm very sad sometimes. Who wouldn't be? Anyway, I've been thinking about it. I know this friend meant that I should consider letting in the possibility that there might be someone special out there who could become part of my life again someday, that I could at least begin to have friendships with others of the opposite sex. I realize that I've given up on that idea and that maybe my friend is right and it is time to explore the thought. Five long years.

What triggered the conversation is that my husband was taken off hospice. They said he hadn't had a fall with serious injuries in the last 60 days and his weight seemed to have stabilized. Oh, sure, he'd had falls. The nurses and aides at his nursing home find him on the floor now and then in his room, but for the past 60 days there had been no trips to the ER for deep gashes in the forehead or for broken arms or ribs or anything. I didn't fight their removing him from hospice care. Maybe they're right, I thought, maybe he's stabilized. And the next thought was what if this goes on for several more years? How will I survive it? And then the guilt, stabbing me in the heart. How dare I be sad that he might have stabilized and might live longer than the original prediction of lifespan? For the last two weeks, I have agonized over each possibility, finally concluding that my friend was right. I have to figure out a way to have a life.

And then came last Friday morning, 12 days after the hospice decision. I knew it was coming, of course, knew it was inevitable. When they took him off hospice, the hospice provider took back the bed and wheelchair they'd provided for him, and he'd gone back to a bed and chair provided by the nursing home. That's not good or bad, just different, and different is never good around my husband, Dick. He really doesn't tolerate any kind of change very well.

I was getting ready for work, which I always refer to as "therapy I get paid for." I love my job and it is what keeps me sane. That morning I had been working from home on my email first thing and was just getting ready to get dressed and go in at 9 a.m. when the phone rang. Caller ID said "Interlochen" and my heart sank. His nursing home only calls when it's trouble. It was a nurse, Margaret, shouting that he'd fallen and they were calling an ambulance. "No!" I shouted. "Wait for me to get there. It will be less than 10 minutes."

The last four times they have insisted on an ambulance, it has been a huge ordeal for Dick and for me, and the people in the ER acted like I was nuts. That's because nobody knows what FTD or PSP are there. The last time, four months ago, Dick was agitated because he fell right before dinner and he kept insisting that he get out of their bed and go get something to eat until I sent my son to get him a sandwich. It takes hours and hours, and then they just taped up the wound anyway, the same thing the nurses at the nursing home could have done. They give him a prescription for an antibiotic each time and he refuses to take it, as he refuses to take all medications for the past year or so, saying he wants to die. And then I spend months wrangling with the insurance company, the provider, hospice, debt collectors, etc., trying to get his bills paid without it dragging me under financially. I also know that, when he's in a hospital, they have to ignore the Do Not Resuscitate (DNR) order that keeps medical workers from attempting any foolish last-minute rescue attempts (who would want to live this way any longer than necessary?) When he goes in the hospital, I have less ability to enforce Dick's wishes. That's why my first reaction was "No!"

I was at the nursing home in 10 minutes, foregoing taking a shower or brushing my teeth in the interests of getting there quickly. They'd already called the ambulance, despite my reminding them -- again -- that I am his guardian and have medical consent (as well as financial responsibility) and I have the authority to refuse medical treatment and had done so. But the ambulance is there, the same company that has debt collectors calling me constantly despite my written disputes and explanations that the insurance company says I don't owe any more, so that I have stopped answering my home phone completely. But there they are. Dick is already on the gurney and they are preparing to take him to the hospital. He doesn't want to go.

I tell them I want to see the wound before I agree to send him to the hospital. The nurse and the director of nursing are arguing with me, saying he must go because the wound is too deep. That's what they said the last four times too, but in all of those cases, the ER just taped it up and asked me why the nursing home hadn't handled it themselves. They show me and this time, I agree with them. Off he goes to the hospital in the ambulance, hungry because he fell before breakfast.

At the ER, they look him over and agree he needs stitches. The doctor says they should do a scan to check for internal bleeding. Inwardly I groan. Here we go again, another useless scan of his brain. But Dick protests this time and just says, "No scans!" Surprisingly, this doctor listens to him and doesn't insist. I breathe again, relieved. It only takes 4 hours in the ER this time. The doctor who puts in the 22 stitches is calm and competent, focused on her beautiful stitching, and I admire her work. There are 2 high school students who are there to watch, deciding during one of their high school courses whether they want to become a nurse or doctor. The doctor uses his stethoscope and asks if anyone else has told me he has a rattle in his lungs. The start of pneumonia?

When they're done, I put Dick in the car for the trip back to the nursing home. I am completely exhausted, my adrenaline level coming back down. I call hospice and they agree to come out for a re-evaluation later that day. That night, they start a 24-hour watch for him, because he insists on continuing to get up on his own and go to the bathroom. It won't be long until the next fall kills him. Or maybe he's getting pneumonia?

There is not going to be a happy ending with FTD. I know that. I dread the end but I also welcome it. How do I have a life again?