Strange attractors

Today is my last Friday of break. In one week, I will be back in the full swing of classes (only three this quarter, instead of four, but on the other hand, I will be beginning my dissertation and preparing presentations for two conferences, so I'll be plenty busy). I feel myself gathering in during this brief time of pause,and pouring my thoughts out in writing because I know that once the quarter starts, I will have much less attention for this blog, so if you feel like I am writing a lot, that is why. (I'm sure it won't last. ;)

I've been thinking about the meaning of this blog for me. I can feel how it takes on the quality almost of a character in this drama we are all living, focusing some of the swirl that touches us all, though it is experienced differently by each. (I heard on the radio yesterday a review which described the camera in the mocumentary "The Office" as a character--snagging the gaze of the viewer on unexpected details and ironically commenting on the reactions of the actors.)

This blog is also taking on the quality of a kind of tribute--a gift of my own struggle as a contribution to this process we as a family are going through, marking the lifecycle events of our members.

Perhaps most importantly, this blog is becomming a place where I explore and begin to understand my own complex feelings around these important issues--being a caretaker, entering the middle of my life, being alive and opening myself to a new kind of understanding of death. I really appreciate those of you who have sent me emails or coments of appreciation and support in this process. I really value knowing you are along for the ride.

Hopsice update:

The "homemaker" worker came today. Her name is Yime (pronounced "yah-MAY") and she was really lovely. Grandma and I were just talking about how many of the women working for hospice just seem like such amazing women. I forgot to ask Yime her nationality, but I'm guessing maybe Somali or Eritrean. I really got such a good feeling from her sense of competence and respectfulness. So much of how I judge how well people will work with Lil is how they speak to her in the first few minutes--if they understand how to talk loudly, and with understanding for memory lapses while still treating her like the very sharp, very intelligent person she is, and Yime did great.

The funny thing about having a house cleaner come is that, of course, you have to clean the house first--well, not too much in this case--living with Lil has us in the habit of keeping it pretty clean already, but at least it got me to sort through the fridge and take out all the old containers of leftovers. I felt bad giving Yime such a yucky job on her first day, but at least, it was a brief one. For the most part, the jobs Yime is doing are the same ones I am doing--she will just make them happen more often (like changing Lil's sheets and washing the kitchen floor and other stuff I have a hard time fitting in). She made two big lasagnas for lunches for the week, and had lunch with Lil. I took the opportunity of Yime being here to go for a walk in the Arboretum with my good friend Kathleen, which was just wonderful, especially on a gorgeous day like this. We tallked therapy technique the whole way like two starving people even though we feast on it all the time! (She is in her first month of practicum with Laura Brown--a famous local psychologist, psychotherapist, and feminist author).

Hospice make a big point about how the support workers are there to give primary caregivers a break, but it is hard to know where the lines are in a funny way (like am I really working hard enough that I need "a break"?)--especially with someone like Lil who does need daily care, but doesn't need it 24/7. Lil's care needs are also a moving target, as she becomes less and less capable of being here alone in some ways. On Tuesday, for instance, after the nurse left, I talked with Elaine on the phone and learned that she was on her way over to visit and cut Lil's hair. I had an errand I had been hoping to do all day but I had waited at home for the home health aide who turned out to be not able to come that day because of a miscommunication.  Anyway, it is still fairly frequent that Lil is here by herself for a few hours at a time, and knowing Elaine was coming soon, I told Lil I was going to do my errand and left.

When I got back, I found out that Elaine had arrived, knocked on the door, and heard a loud thump. Turns out Lil had gotten up too quickly to answer the door and had fallen from her chair and was unable to get up. (Falling while getting out of her chair was the way she ended up with a very bad knee bruise which sidelined her with Bursitus for a week at just this time last year.) Luckily Elaine has a key and let herself right in and helped Lil up, but it just leaves me feeling a little shakier about Lil being here by herself. It is hard not to feel guilty when something like that happens, and yet I tell myself that it is not realistic for me to believe I can do everything possible to keep Lil safe--heck, it could just as easily happened if I had been sitting at my computer at the kitchen table.

The unavoidable thing is that something, sometime is going to happen and there will be nothing I can do. It is tempting to want to feel omnipotent, to feel that by trying really hard, I can in some way control events to protect myself from remorse and guilt, but there is another part of me that knows there is no way to avoid those feelings--that no matter what happens, I will feel irrationally guilty, as if doing something other than what I did might have made a difference. It's just that old familiar death anxiety raising its hoary head--somehow we all keep wanting to believe in our own small potency in the face of that yawning gulf of unknowing.

I have to cop to the fact that some of my irrational guilt comes from the conflict between my core longings to be the idealized caregiver I described yesterday, and a very healthy impulse in me to keep living my own life and having my own identity, no matter how much I am wrapped up in managing all these other lives.

Odd as it may sound, it is a guilt that comes from a culturally incongruent but healthy recognition that Lil is at the end of a long rich life and that however she dies, whether it is sooner or not so soon, it will not be unexpected, as well as from the knowlege that death, in this case, is not something to be prevented, but something to anticipate and plan for and usher in as gently and gradually as possible.

Though I recognize these impulses as healthy, I feel at the same time somehow covert about them--as though it is not kosher to think of death as something ok, something allowable, something real. I recognize that when Lil does die, whenever that may be, there is a part of me that will shrink from the fact that I have even considered the possiblity of her death--as though considering it lets it in, makes it wished, makes me the pointer of that long, dark finger. Sometimes the sticky threads of our true powerlessness and our compelled need to be doing to keep those fears of death at bay are difficult to untangle.

And if they are difficult to untangle for me, with my years of philosophical critique about the way our culture distances from death--sanitizes, medicalizes, sentimentalizes and simplifies it--how much harder will they be for my sons, I wonder?

When Marty and I first started considering this move, we weighed very many factors in the balance--our desire to live in Seattle for our own schooling and for the boys, our need to move before the school year started, our questions about whether Lil would be able to tolerate the mess and noise of kids (and the mess and noise of us grownups too), Stefan's long residence in the downstairs apartment and whether he would feel displaced, Lil's need for support (which was less at the time), the very significantly smaller space (and my not insignificant inclination to amass great quantities of Extremely Important Stuff), Marty's questions about moving into such an intimate family relationship with a grandmotheer-in-law he did not know all that well, and many more I'm not thinking of right now.

One of the factors that was most important to me in this move was my values around providing meaningful integenerational family connections for my boys--modeling for them what it means to truly get to know our elders in a way far deeper than holiday visits and construction paper cards. Embedded in this value for me is the values around death that have been modeled for me by mom and papa.

We are a family who takes care of our members throughout life--and at home, if possible. Five of the seven of us grandkids (six out of eight if you count Katie) were born at home. Grandma's mother lived with her for several years here in this house (did you know the front room used to be half as big, and where the TV now is was another bedroom?). Mike and Steve both cared for their father at different times (disaffected and complaining till the end) even when they had no space and barely enough to live on themselves. Grandma Ruth lived first with uncle Eric and Patty and then with us until one week before her death. (I remember how her vocabulary began to erode as the brain tumor grew, so that odd words floated into the place of familiar ones--"Sebalius" for "sherry"). Uncle Karl lived with mom and Papa and Stefan all through Stefan's teen years and then died quietly upstairs (it is one of Lil's ritual stories to tell about the night he died when she happened to be there--as though kneeding over the quality of that death makes her own somehow more pliable).

We are a family who does not hold death at a stiff arm's length. Like all families, we feel the conflicted and irresistible pull of meaning around that ultimate singularity of mortaility, but at least we do not try to drown it out with invalidating platitudes and empty ritual. Part of my reason for wanting to live here with Lil at the end of her life was that I want my boys too to know that death is a natural part of life, that old age is not creepy or foreign, but quiet and familiar and soothing, and that the thing to do in the face of death is to stay connected, and to draw closer if you can.

They will face death, and most likely sooner rather than later, and no matter how well I prepare them, it will be confusing and painful and irrationally guilt inducing (they wouldn't be normal if at least a small part of them isn't just the least relieved to see her go). But still I want them to know that death is something which can be experienced in a way that holds all those conflicting, confusing, terrifying emotions at once, and that most of all, it is something to experience together.

Because as close as they are to Lil's illness, as difficult as it will be to experience and understand  their own layered reactions to her death, it is far more difficult to understand Daniel's illness. At the other end of the arc of life, it is far more galling to face off with the terrible unfairness of a terminal diagnosis in the span of a life not yet fully lived, and to tentatively, painfully finger the wound in my own soul born not only of anticipating that Daniel will die at the crescendo of his potential rather than the diminuendo, but of the loss of not having come to fully know that potential even now.