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Back to our regularly scheduled programming, courtesy of my sister:

What I'm thankful for

Although my father's obituary has been in the newspapers all over the country, and even world wide, this one from The Regional is one of my favorites.

Here's the short list of what I'm thankful for today:

• I'm thankful my father was able to hold and burp the first six of his ten grandchildren, while singing "I've been working on the railroad."


• I'm thankful that he died in his sleep with pain management.


• I'm thankful for John Markoff of the New York Times, who wrote a great article that has been picked up by newspapers around the world. It is somehow comforting to know that other people think my father was a great guy.


• I'm thankful for my ever-supportive husband was able to drop everything when the call came in the wee hours last week.


• I'm thankful that my children have such fond memories of my father.


• I'm thankful that my daughter has the patience and understanding to help her grandmother set the table for Thanksgiving dinner.


• I'm thankful for that neighbor of my mother's, whose name she can never remember, dashed out of his house with a jar of his homemade apple butter as a gift.


• I'm thankful that my father took the time to show his special carving techniques to Mark, who spent time explaining them to Large yesterday.

Albert V. Crewe should not be remembered only as being a great scientist, artist and father, but as an influential person who worked hard to lobby for research funding and wasn't shy about expressing his rage over the lack of it. He was an intellectual who was as much a fixture in his laboratory as he was at our swim meets, the hardware store, piano and dance recitals.

Complicated Question

I have often been asked lately how I am doing. It's a difficult question to answer. On the face of it so simple, but when you get right down to it, extremely complicated.

Am I really "doing," for example? What am I doing and how am I doing it? A short glance around my living room or bedroom shows that I am not doing much. Not physically anyway. Some days I don't even shower. I am usually dressed by noon, though, so maybe that is something.

The kids get to their scheduled activities. Most of the time. They see their friends, attend their classes, get their basics done most days. They could be doing more. There's that gym class I want to enroll them in, the play dates I never get around to scheduling, the allergy shots that are supposed to be twice a week and sometimes we go two weeks between, the swim team and swim lessons, museum day - all these and more I have failed to organize and do.

My three siblings and I cannot seem to have a discussion over my father's care without someone getting angry and belligerent. We can't agree on the simplest of things and some refuse to even take a part in the discussion, preferring to criticize from the sidelines. I have been unable to forge a truce or maintain the peace. On the contrary, because I am the closest, I am the target.

My mother now needs more help than ever. I am able to help her twice a week. This I can say that I "do." Writing checks, buying groceries and supplies for my father's caretakers, making her appointments, managing her calendar, listening to her fears and worries. I get to go home, to put some distance between me and my dying father. My mother is home and the love of her life, the man she has been married to for 60 years, is slowly dying before her eyes. It's no wonder she needs more help, the emotional and physical strain on her is unbearable.

And then there is my father. I can help him try to stand up, he isn't able to do this on his own anymore. But he wants to try and I can hold one side while an aide holds the other. He was a tall man, but now his legs wont straighten and he is shorter than my 5' 8" frame. Not nearly as wide, though, his body isn't tolerating much in terms of calories. I can try to interpret for him, make sure his medicines are ordered and sufficient, help the aides with their questions, distract him when he is agitated.

So, I am "doing," or at least am active. I am not, however, doing anything particularly well. It took me a long time, probably a month, to realize that my kids were no longer active and engaged in their math program and that it needed to be changed. Little is still not a good reader, he is reading things that his siblings read a full year ahead of his age.

The friends still willing to talk to me - and there are several who cannot right now because their own grief is too fresh to be cut open by mine - are probably bored out of their minds when they ask how I am. I feel I have become a lead weight in their presence. So, when I am in town, I stay inside my house and limit my outings to the kids schedule. Yesterday I took Small to dance and then went to the library to reserve the room for our science class. After those two brief encounters with the outside world of small talk and business, I was exhausted. They simple act of smiling, so natural for me normally, is draining.

So how should I answer? Fine. OK. As well as can be expected. Or just smile.

Floating

I feel lately as if I am just floating in the ether. Not really a part of my life or my family's life, detached and floating. Occasionally I touch down for a moment of connection, of reality and the float up again into the amorphous space that surrounds me. Here are some of the things I have managed to touch upon:

• My father calling for people from his past in the wee hours of the morning. Not frightened, often just calling "Hallo!"
• My mother weeping with the understanding that her children may be saying goodbye to their father for the last time.
• My siblings, laughing over a bit of family history and then brought back to reality by a sobering cough from the other room.
• My completely unresponsive father when I said one day that all his children would be here the next day. Then seeing him the next day insisting on being dressed, forcing himself to stay awake until my brother made it through a storm from California at 3 a.m. He heard me.
• My children enjoying their science lab while I was able to enjoy an hour with a dear friend who let me babble on and on incoherently in a Starbucks.
• My doctor, two hours behind schedule, listening to my every word and telling me it was OK to let myself go while my father let himself go. But that it was not OK to only be able to sleep with the help of Tylenol p.m. Me relishing the relief from her acupuncture.
• My brother complaining about the quarter mile inside the grocery store we had to walk from the meat to the wine.
• The sight of my mother having her pedicure on a treat spa visit with my sister. Completely relaxed, composed and happy.
• Me understanding deeply, for the first time, that Mark and I will not likely see the 60 years of marriage my parents have lived through.
• The bizarre experience of all four siblings showing up at the local fitness center at the same time to sweat off the grief and anxiety. It must be genetic. We paid a guest fee for the privilege.

It goes on, these brief landings on earth to witness the world around me. Then I am back in the fog. Floating to the next touch down point. I do and do and do. But all I do is touch the surface and disappear. This can't go on forever.

But this ether can be seducing. I haven't summoned the courage for more than a cursory glance at my email in over a week. My father has been dying for seven weeks now. He managed until a week ago to have more lucid moments than not. Now he is in his own hell of incomprehension and hallucination. His brain was so important to him. And to us. He held on to it for so long and now it seems that the Parkinsons has taken the one thing left to him. His increasingly vocal worry since his diagnosis has turned into his whole life. Worry over the weather, his finances (where there is no need to worry), the condition of the house (where there is, but all fixable), his worry over my mother (again, founded in reality), his lab (long since dismantled).

We have much wind tonight and I know Dad will be shaking the bed rails, wanting to check out the damage. I had the aide move the electrical source for his bed to the outlet service by the generator - we had a minor tornado there in August and witnessed only a flicker of the lights. It will likely be a bad night for my father. And a bad night for me in the ether.

My New Heroes

Six weeks since my last blog post. And that post was so full of hope for my father, hope that he just had a broken hip and would get better.

But then he acquired pneumonia in hospital and has been home in hospice care ever since. We have had days where there was much hope. Days when he has walked, used the toilet, spoken coherently. We've also had many days when he did nothing but lie in bed, hallucinating, agitated or just sleeping. It's been a roller coaster.

The worst days were when he first came home from the hospital, terribly sick with pneumonia. The hospice nurses only thought he would last a few days. My sisters flew in. We made plans, he dictated notes to all of us, repeatedly begged us to take care of our mother. We all prepared for him to die. But he didn't, he got over the pneumonia and regained some of his strength.

But now we are back to thinking he only has a short time left. Kidney failure is likely now, his body may be shutting down. He's had hallucinations, anxiety, lack of elimination. I had thought myself better prepared to deal with his death, but it still hits me like a blow to the head. Have I really had my last conversation with him? Will he only be unintelligible from now on? No one can say.

These hospice nurses are unbelievable. Our whole family has received wonderful care, advice, concern, attention. Taking on that job is a true calling. They are my new heroes. Without them we would all be somewhat adrift, relying on doctors or nurses in a hospital. Uncomfortable and unknowing. With them, my father is able to rest in the house he built on top of the tallest sand dune, look out the window at the tree tops and the lake, be as comfortable as possible in his waning days.

Today is another day when the schedule was shifted in order to take care of my parents. No registration for Girl Scouts, no grueling trip to the north side. Instead we have a trip - equally as grueling - to Indiana. I hope my kids don't resent me for this time, and don't think they do. They are sad to give up their activities, but continue with their life learning wherever we are.