Never ready

"Waiting for something good takes forever, but bad happens (snap) that quick!" my dad always says. That's why, when my cell phone rang just now, I panicked.

I was in the kitchen, having just gotten into my sad excuse for pajamas, one hand retrieving a mug of hot chocolate from the microwave. No, not now! It'll take time to get dressed again; I'm not ready -- I'm not ready at all! Where's the stupid phone?

It was in the other room, and in the time it took for me to figure out its location, an eternity passed; civilizations built and collapsed; a lifetime before I could make my feet cross the house to answer.

Just before the last ring was through sounding, I answered with a feeble "hello."

"Cheereele, it is Josephine to tell you about your fadder," the nurse began. "Ders an area of skin near da anus opening which is a leedle sore ..."

Holyshit, at 10 p.m., she's telling me he has a bed sore. A bed sore! My heart was pounding so loud, I could barely make out anything else she said. It was the end of her shift, and Josephine is very fastidious, calling me just as requested, with any changes in my father's condition.

One of these times, it won't be a bed sore. One of these times very soon, I still won't be ready, and it'll happen anyway. He'll be gone, and I won't be dressed. It'll happen right in the middle of everything, of my life, and I won't be prepared. I won't be done being his daughter. I'll never be ready.

Cohen's Nuthorse

I've been wrestling with bringing myself to have the most difficult conversation of my life -- with my dad. I think I should probably ask him if he knows what's happening (that he's dying) and then ask him if there's anything he wants to tell me, and to assure him that I'll take care of Pam.

I'm not sure there's ever a good time to bring something like this up, let alone guess how this will be with Pam in the room. But, it seems like he's in the same position. He can't bring himself to tell me that he's dying. Not only is he scared for himself, I think he's very worried about how I'll take the news. That is, in the back of his mind, I think that's what's there. What's in the forefront is very vague; he can't really sort through the clouds. Seems he knows he's uneasy, but he can't really express the source of the problem.

Language is the first thing my dad lost in this whole, long last leg of his lifetime. It's one of the signs of Dementia, and has been very frustrating. When he first started losing words, I'd chide him. "Dad! You can't remember the name of (insert any subject here)?" He'd say, "Well, how the hell do you think I feel?"

When his health really started declining, the language began leaving him in leaps and bounds. He'd answer the phone with the most bizarre greetings. "Cohen's Nuthouse" became "Cohen's Nuthorse", or just "Cohen's Nut." He once wrote a note for me to pick up some "Glander Will".

"Dad, I don't know what a glander will is."
"Sure you do!"
"Uh, no ... no, I'm pretty sure I don't."
That's about when the shoulder shrugging started. Sometimes, during one of these inventions, he'd start laughing and try to pass it off as something he just thought would be funny. But I could see the fear behind the laugh. He could hear the words coming out wrong, and by the time they did, he didn't even remember what he was trying to say in the first place. Another shrug.

One time recently, it became apparent that he didn't remember my name, and I was determined to drag it out from wherever it was buried.
"Dad, what's my name?"
"Sweetheart."
"No, really. What's my name?"
"Sweet Sue."
Sue's my middle name, but that's not what was he was going for here; he simply couldn't remember.
"What's Bruce's sister's name?"
(shrug.)
"What's Cheryl's name?"
"Cheryl! See; I told you I knew it!"
I laughed with him and Pam (who hasn't known my name for some time now) but I cried all the way home. I know it was very tough for him, too, even though he was trying once again to pass it off as a joke.

This becomes doubly-crazy, as Pam's Dementia has a completely different form; she has not lost language at all. Hers is usually in the form of wild stories and a completely altered reality. For example, she often talks about being carried on the back of the activities director to the fourth floor of the single-story facility.

I have a giant dog, a Great Pyrenees. One day, while chatting about several different things that I was doing to prepare for a trip, Dad asked me, "How are you going to get all those animals in there?" I could only guess that he meant how was I going to get my dog into the car.

"On their feet, Stupid!" Pam yelled at him from across the room.

Sometimes, I feel like I'm at a tennis game, sitting in the middle of the court, following the crazy banter from bed to bed.

I've spent the last year and a half protecting my dad from bad news, bills, legal problems and medical decisions. Do I now bludgeon him with a conversation about his death, or just let it lie still, until the conversation is moot? If he had something important to impart to me, could he express it anyway, or would he just shrug it off like everything else that's too hard to think about?

I guess I won't ever know the answer to my questions for sure, but I guess I can fill in the blanks if he gets stuck. Maybe we don't need to express the words at all, since we seem to muddle through without them most of the time, anyway.

(shrug.)

What's good

Last night, I received a call from the Cathedral City Citizens on Patrol (COPS) program coordinator, who wanted to tell me that they're ready to bring a caravan down to Lemon Grove to honor my dad with a plaque for his service in their city. I first heard about this about a year ago, when someone told my step-brother, John, that they intended to do this. They contacted me last October. I suppose it takes awhile to get five busy people together to make a road trip like this.

He asked how Dad and Pam are doing, and I had to tell them that Dad is dying. I don't know how I did it without crying, but I was able to fill him in on his condition and give directions, collect his email address in order to send him a map -- no sniffling; no sobbing. Just the facts, ma'am.

Last night, Dad seemed stressed and uneasy. He can't express what's wrong, but I can tell by his restlessness and his frowns. He asked if he had an appointment coming up, and I told him as he has no pain, I didn't see the point in taking him to see a doctor. He shrugged his shoulders, just like he always does when he doesn't know what to say.

Now, he doesn't really ask me questions in entire sentences. I have to use all my psychic powers to flesh out his sentences. I can tell if I got it right or not; he'll let me know right away. Fortunately, we're strongly connected, and I'm usually able to get it right.

This blogging about the folks is exhausting, and probably boring. So, about this time, if I were listening to someone else sing the blues over and over again like this, I'd ask them, "What's good?"

What's good, is Robert. He's tireless -- at least he is for me, when I call him sobbing about my family's plight. Everything's so drawn out and taking so long, yet he's steady and always there for me.

What's good, is that even though my friend Susan is in prison, she's able to send me emails about funny stuff she's been reading. If she can find humor in her situation, then certainly I should be able to do the same.

What's good is my dog, Plenty, who shoves his face through the crook in my elbow as I write, trying to remind me that the sun is coming out and it's time to get out of here and take a walk.

I think we will.

Pimping through Christmas

The holidays have been mostly about eating. This has probably always been the case, but now, my heart isn't in it as much as usual. Maybe it's because I now, at 5'2", probably outweigh my 6'5" dad.

I have always hated the holidays, altogether. Too much money for gifts I can't afford, receiving gifts that I know the givers can't afford, and always dreading the New Year's Day stuff. That day is forever welded with the date of my brother's death.

It was with great relief and excitement that I embraced the thought of leaving every year for a vacation with Robert this time of year. This year, the escape was short-lived, but at least we got out of here for a week.

I just canceled Dad's oncologist appoint on the 4th. They'd have to bring him in on a gurney, and I don't think I've ever seen anyone there in that condition. Too much stress on Dad. I also put the kibosh on the weekly weighings -- can you imagine how that must be for a man who can hardly even bear to have the head of his bed raised?

They told me yesterday that in his condition, he could last a long time. I sure hope not. He's been telling the nurses he's dying, but not me. He only tells me he loves me and that I'm a good daughter.

Pam asked me last night "where's the woman who was over there in that bed?" gesturing towards Dad's bed. "That's Dad's bed, Pam." "Ohhh, yeaahhh. Dad's bed," she repeated, not believing a word of what she was saying. I don't think she knows who her husband is most of the time, but she seems to accept with a shrug that whomever he is, it's okay with her.

In normal times, I'd ask to borrow the pimp hat that Pam received from Tommy, a great nurse that we all love to joke with. It's a fuzzy red fedora, trimmed with white fake fur. Put that together with set of gold grilz for my teeth, and I'd have a wonderful holiday laugh here in da hood.

I wonder how my neighbors would take that?

Chicken Little

I should have known. Actually, I did, I think. When Robert and I left for this winter's trip to hike in Oregon, I gave him the perennial speech about how we may have to come back suddenly if something happens. Something, of course, is if my dad or step-mom dies, or I get wind that they're about to leave the premises.

I know they're dying. Logic dictates that in their condition, it could be any moment for either of them. However, every time I think that moment is close at hand, I'm proved wrong. it could be tomorrow, or it could be in years. Everyone urges me to get some respite, to get the hell outta Dodge while the gettin's good.

So, I decided to ignore my impulses and go on our usual winter excursion to hike to waterfalls in the Pacific Northwest. But right off the bat, I didn't like the way Dad sounded when I called from the hotel room at night after we'd get back from the trail. He sounded more frail, nonsensical. I began having serious regrets for leaving. But, then, I always do.

I'm no doctor, but since I'm the one who sees them daily, I am also the one who sniffs out the pneumonia or the urinary tract infections, or the fevers, or whatever it is -- before the nurses and doctors do. And, since I can sense the slightest change in their behaviors, it's often before anything will show up in a test. By the time they're diagnosed (they take turns at this, you see,) they're near death, the nursing home is asking me if I want them to get hospice involved and I'm calling my brothers and telling them to come right now if they want to see them while they're still alive. The medical treatment comes and the parents immediately rally. By the time Bruce and John arrive, the folks are upright, conscious and chatting away. Not necessarily making any sense, but very animated. And again, I've declared that the sky is falling when it's clearly still firmly in place where it's always been. Maybe a bit cloudy, but certainly not the storm I'd predicted. It's come to the point where even I think I'm a charlatan.

So, one week into the two week trip, I talked to the nurses, who told me he's lost another eight pounds (in a week!). I asked them to check on him because he's not making any sense at all now when I talk to him. They called the doctor earlier that day and he ordered some tests, but he said I shouldn't come home early; Dad's going to wait for me to come home before he dies. Even though it'd gone through my mind more than once, I found it a bit shocking that I wasn't the only one thinking it. I also wondered about the logic of why I would have him wait for me; I want to see him alive, not dead. I don't want him to have to hang around any longer than he needs to, but ...

I called Dad and the only lucid thing he said is that he felt like hell and asked me to bring a knife to help him "cut his throat because he wants to die." I told him I wasn't inclined to do that, and asked him to hang in there. How does one respond to that? I'm no expert in this stuff.

Devastated, I hung up the phone. One look was all it took; Robert asked me to decide if I wanted to go home or not. I didn't see any options; Dad needed me. Robert immediately began packing the car while I made cancellations for the rest of the lodging for the trip, and we left within minutes. What a prince Robert is; he didn't hesitate for one second, and promised he would not be upset if I said we needed to go home. I believe him.

While driving through a mountain pass, I got a call from the nursing home, but was disconnected. The voice mail message said Dad was severely dehydrated and needed an IV, but they needed my okay before they'd proceed. Dad's health was being held captive to a cell phone connection. Luckily, I was able to get through at the next freeway exit, and give my authorization. The nurse assured me when I called later that Dad should begin feeling better shortly.

By the time I got back last night, it was pretty late, but I went to the nursing home, anyway. Dad and Pam were both sleeping, but I woke them. Dad was incoherent, but stroked my face with his hand. Within a few minutes, he was able to verbalize a little. He understood I was back, and that I had come home to see him. I could tell he was glad I was there.

He's not going to die today. I'm still Chicken Little, but I don't care; I made the right decision to come home.

December 1, 2007

This morning, I brushed the dog hair off a box labeled "Parents' Christmas Decorations" and threw it into the trunk I'd just emptied out. The night before, I'd filled it at the nursing home with boxes of endless old newspapers and magazines, mixed with packages of hot chocolate mix, pepper packets and several wooden airplane model kits in clear plastic bags. My dad doesn't build anything anymore. In his day, actually since the early '40s, he'd built the most intricate model planes imaginable, from scratch. In fact, he'd been featured within the pages of earlier editions of the same magazines I was throwing into my trash bin. Ever since the "Great Fall", when he injured himself and was diagnosed with multiple health issues, the model building was reduced to little toys. Soon after moving him to the nursing home, he began having trouble fitting the simplest parts together. He used to be one of the most organized people I've ever known, but those days weren't exactly reflected in this mess of Nestle's Hot Cocoa envelopes and old mail. It's been a harder fall than anyone expected, least of all, him.

Pam has been suffering from Dementia for some time. One of the ways she has demonstrated it at the nursing home, is to refuse showers. She points her little bony finger and scolds in the most authoritative tone, that she's already taken one at 5 a.m. just like she always does. Of course, the truth is, that nobody at that facility would be giving showers at that hour. They're probably hoping that the residents are fast asleep, so that they can finish out their shifts with as little effort as possible. One way that the staff has finagled the showering, is to appeal to her vanity. They promise to put her hair in rollers and then, they style it for her. Most of the time, this has worked very well. But for the past few weeks, she's been unusually compliant, and takes showers upon the first request.

Upon arriving with the Christmas decorations today, I was told that Dad refused to bathe, saying he'd just had a shower the day before. He had not, of course. In fact, it had been three days ago. What were they going to do, I wondered, bribe him by offering to curl his hair?

I sidled up to him on the bed, looked him in the eye and lied. I said that if he started refusing care, that Medi-Cal would no longer cover them and that I could not pay. He wasn't happy, but decided to take a shower.

He complained about pain in his leg, so I asked the nurse to give him some Tylenol. She told me she'd have to crush it and put it into some applesauce, because someone (I think she said Bruce) caught him spitting his pills back into the little cup instead of swallowing them.

He didn't touch his lunch. After he was bathed and back in his bed, he apologized to me for being "so much trouble." I told him I love him, and that he's no trouble at all.

Oh, there's going to be so much more trouble...