This almost changes everything...

...we don't need to settle down
we live our lives upside down
to figure out
we are just like love and war, baby

...we wake up
break up
make up
fall asleep and do it all again

~Red Wanting Blue, Spies and Lovers, Pride: the cold lover, 2005

(An Oh-hia-ia based band)


Driving the other day, I woke up from zoning to note that I was on a familiar route; the same one I drove to take care of my Auntie when she was at the local hospice facility, with the above song playing on the iPod.

It made me think about how much time changes things. And how little time changes things.

When Auntie H was ill, it was fall, the most beautiful time of year here. The gently rolling hills are covered with blazes of red and orange, flashes of yellow fire, dynamic, vibrant colors. We even see the sun, a little bit, in the fall; when we do, the sky is an autumnal blue that you don't see the rest of the year, a deep, vivid hue. Combined with a crisp chill in the air, it makes me think of apple cider, Halloween costumes, new #2 pencils.






That same route in January is darker; the trunks and limbs of the trees look grey from a distance, sometimes tinged with small hints of red, but mostly dark. The farmer's fields are either plowed under, (the corn fields) or shorn of wheat. When there's no snow on the ground, everything looks dirty, from the overcast horizon on down, as if the whole world could use a good scrubbing. When there is snow, it looks clean, at least, but no less overcast.



And yet.

The road is still in terrible shape, it has needed paved for at least 10 years. The hospice still sits back a bit from the road, with a lovely view of soothing countryside. (If you can ignore the gloom; I'd probably draw the blinds rather than look out at the grey skies.) The gas station and pizzeria on the corners of the nearest 'major' intersection are still there, unchanged.

Time hasn't eased my grief a whole lot. I know I complain about this happening quite a bit, but I see people who at first glance I think are my aunt, and when I look again, there's no similarity whatsoever. That second look happens after your brain registers...'hey, there's Auntie H!' and you almost call out, and then reality crashes back down on you as you remember that she's gone. It hurts, a sharp stab that sometimes takes my breath away.

I can't help but wonder if that happens to me because my subconscious thinks about her, (with me mostly unaware as I go about my daily business) or if it is because of an explanation I like a whole lot better even though it is crazier; that there is some tenuous connection between this world and the next (if there even is an afterlife) and she wants me to know that she's all right. Because that first glance almost always shows me a big smile and I feel waves of reassurance.

The world keeps on turning, the days continue to pass by, and other things do change. Life continues, sometimes in predictable patterns...Pilates classes on Tuesdays and Thursdays, nights with not nearly enough sleep, dinners contemplated and prepared, work attended to.

And then along comes something that is a change, something that does change things, or something that has the potential to make changes. We find new hope, or new ideas.

Is it as a culture, or as humanity in general that we hope for new beginnings and yet fear change at the same time?

Slowdown/Shutdown

There are many things over the last week or so that I've wanted to write about; but I've been too exhausted to actually write the posts. And my focus over the last week has been entirely on my Aunt and my mother's family, some of whom are dealing better than others, so that's what's been on my mind.

I realized a day or so ago that I didn't even write a Brain-Dump post last week. Something I wanted to be sure I did this week before things get more crazy than they currently are.

I spent a total of 5 nights sitting with my aunt overnight, and the result of having my usual routine turned on its head was about 3-fold. One, as I've already said, I'm beat. Physically, yep, but emotionally, too. Two, I wasn't eating much...and I lost about 2 pounds. Three, I didn't get to the gym but one or two days last week, which I firmly believe contributes to the exhaustion.

I'd come home from the hospice each morning and climb into bed after a shower and tossing a load of laundry into the washer. I'd sleep until 2 or 3 in the afternoon, get up in time for DH to come home from work, get something to eat, spend a few hours with him, and head back to hospice. Turning that back into my usual routine of sleeping at night has thrown off my body's internal clock.

On Friday last week, they moved my Aunt from the local hospice house to a nursing home. Why? Honestly, I don't have much of an answer for that. There are a few contributing factors, but when you add them all up, they don't make much sense to me. The local hospice facility is small; they have only a few more than 10 beds. So they only have room for those who are very close to death. I've always thought that once you entered a hospice facility that you stayed there until you died, but it seems that such is not the case locally. The next thing was that she stabilized; by the time Friday rolled around, she was at a point that, theoretically, she could have stayed at for several more weeks. Then there's some complicated bullshit with Medicare only allowing hospice time for a certain amount of time unless you're critical; I don't pretend to have any comprehension of that at all.

Once at the nursing home, she lapsed into a non-responsive state. She isn't sleeping, exactly, but neither is she awake and alert enough to answer any questions or respond when you talk to her. She opened her eyes for her kids and grandkids yesterday, and for a minute for my mother, but it seems that she lacks the strength to say anything. It also seems like she wants to say something.

The hospice nurses and social worker will continue to track her, and she still has the morphine pump. They gave the family two books about the physical process of dying after a long illness, and she's exhibiting several of the signs that both books talk about. It is simply a matter of time. While I thought that she could have stayed in the state that she was at the hospice for several weeks, her current condition is something that I think will not last very long at all. A day. Perhaps two. Not much more.

The majority of the family gathered at the nursing home yesterday, and the atmosphere was understandably grim. I mourn the loss of the more relaxed mood that we had at the hospice. The nursing home staff is nice, but...it is far noisier there than at the hospice house, and it seems that not all of the nursing home staff knows, or perhaps they haven't been told, that she's dying. While standing in the hallway yesterday, my cousin stopped several aides from going in to the room for blood work (which we stopped a week ago), to give medication in pill form (dude, she can't swallow), and even to deliver a meal tray that she wouldn't have touched even if she was awake.

I'm tempted to print out a big sign on my home printer that says something like "Knock on this door only if you want your head taken off by one of the family." No, it wouldn't help, and antagonizing the staff isn't a good idea, but it would make me feel better to be able to lash out at someone. It is easier to be angry than it is to be sad.

In reality, I don't want to be sad or angry. My Aunt isn't old, at 70, but neither is it like the work that I used to do with terminally ill children. Losing a six-year-old is tougher, in my eversohumble than an older adult. I want to be glad for the life that she's led, sad to lose her, but able to accept it.

Everyone is asking what they can do. That's the hell of it all, there isn't a damn thing that anyone can do at all. Perhaps that's the worst part of losing someone, the feeling of powerlessness that we all have. I'm a take-charge kinda gal. I fix things. If something's going on that I don't like, I DO something about it. Rarely do I adopt a wait-and-see attitude about anything. Looking at all that, you have to wonder how on earth the demons of depression ever managed to take up residence in my head. Ah, just add that to the ever-growing list of things I don't understand. So when someone is dying, I can't do anything about it, and that frustrates me. A. Whole. Lot.

Time to go. My mother just called with the news that she's instructed my sisters to get home from New York and Los Angeles. There are phone calls to be made and a few things to be done. Sadly, that soothes me a bit, that I can do something, anything.

Please don't allow this post to make you sad. Celebrate your own life and the lives of those you love. It is short and precious, and to be treasured.

Update: She passed away about 15 minutes after I originally posted this. Peacefully, surrounded by her sisters and her daughter. I wasn't there, but I didn't think I wanted to be there when she actually passed anyway. Thanks so much for all the kind wishes you've all sent over the past few weeks.
~LA

From Hospital to Hospice

Just as the ad campaign says, what a difference a day makes.

We're no longer in the hospital, but at an inpatient hospice facility. This place is amazing, soothing, beautiful. I can't say enough nice things about both the facility and the staff, who are forever asking what they can do for us, for my aunt.

I've gained a whole new lexicon of words; palliative, subcutaneous line, comfort-care. A whole new understanding of what it means to pass on.

She's comfortable, and the decision has been made to discontinue any invasive medical procedures, which includes IVs. The hospice nurses take her blood pressure, listen to her heart and lungs, and administer the strangest medicine I've ever encountered in my life. More about that in a second. It is an enormous relief to not have them drawing blood, poking, prodding, waking her up. Anything she wants is provided in minutes. We should all be so lucky as to have people like this care for us at any time during our lives.

They don't administer medication in any manner that I've ever seen before in my life. Not in pill form, not through an IV, not inhaled. Instead, she has a morphine pump that gives a small dose of pain medication every hour. The line is directly into muscle tissue, and keeps her comfortable. But then the other medications they're giving her are absorbed through the skin.

They bring a syringe without a needle (can it still be called a syringe then? I don't know.) that has a brownish gel inside it. They rub that gel into her arm, around the veins in the wrist and up the forearm about halfway to the elbow. The meds include something to help with the swelling where her IV lines were, something else that has made her much more aware of her surroundings, something that has a calming effect. It is a rare and wonderful thing to have medications that clear the mind and soothe the pain.

Sometimes she's frightened. Dude, I'd be freaked right out of my mind if it was me. Mostly, though, she's peaceful, so much less agitated than while in hospital. Personally, I am at peace with the decisions that have been made to stop invasive procedures, to make her comfortable. I've had my meltdown moments, don't get me wrong. Mostly those come during or just after talking on the phone with other family members who are far away about what's happening at ground zero, as I've had to explain that yes, the end is coming soon.

I was on the phone with my youngest sister, talking about the last few nights that I've spent by her side and my sister said, "I'm sorry that you're the one {of the three of us} that has to go through this." I responded immediately, "I'm not." Because I am not. I'm glad I'm able to be here. This paragraph makes it sound a bit like I'm the only one with her, but if that's the impression that you've got, it is incorrect. My other aunts and several of my cousins also take shifts with her. I've volunteered to be with her overnight because I'm the logical choice. No kids, no job, therefore I can sit up all night and not have to worry about being somewhere on 2-3 hours of sleep. But as a result of my usual routine of gym, run errands, send out resumes, make dinner being disrupted, I can't tell you what day it is. Forget about what the date is, no clue.

There's a commercial for Travelocity where the gnome that is their symbol plugs an American appliance into a European wall socket. He gets zapped and flung across the room, and then as he's lying there, he asks plaintively, "Am I going to die?" and it is funny. My aunt hasn't asked us that; instead, the other night she told her daughter and I, "I'm going to die." It was heartbreaking, and neither of us knew what to say----'no, you're not' would be a lie----but it was spoken as plain, simple fact.

I don't believe in an afterlife in the traditional sense of heaven and hell. Telling me that she's 'going someplace better' holds absolutely no water with me. I haven't believed that since my young cousin died at 28 leaving her 3 young children to grow up without her. But I do think that my aunt will be at peace when she breathes her last, and I take great comfort from that.