Hi, this is Don. I don't really know what to write, so I'll try
to add something of my personal perspective. I'm the spouse,
which means I'm at the focus of everything; not Linda's twin, not
her parents. Me.
The hardest thing about the week has been making decisions. And you'll
notice that we have changed our mind about things a lot. There is a wonderful social worker here named Kathy and she assures me that this is OK. I said that I expected her to say that, and she told me that her record for that kind of thing was 8 changes of plans. I said we'll never do that many
and she said, "Never say never." I asked her how many plans we have had
so far and she said 4.
The thing that makes decisions so hard is that it is difficult to get lots of
information early enough that you can make use of it. In abstraction, when
you fill out you "Living Will" in the kitchen when you are healthy you have no ide what you are deciding, and it's no better when asked the first time at the hospital. So you say "no." It isn't until you have more info and, more importantly, time to process it that you may say "yes," instead. In my opinion, a living will is a junk document Give durable power of attorney to someone who loves you instead.
Everyone has had that problem; me, Mary, Linda, the physician, the social worker. Everyone. But I am fixing it where I can, and as the focal point, I can do a lot.
That's the reason Linda and I have chosen not to make decisions for some days. I really used my deity-ness (ask Jen about that later) to get someone from Rusk rehab to talk to us on Friday because Monday just wasn't enough time to think. And he came, which was good. I feel like we are getting information, and in particular Linda is getting it when she can use it.
That's really the trick. Since she can decide, we have to honor her choices legally and ethically. And since she was asleep so much, I had a lot information, Mary (Linda's identical twin) had less, and Linda had the bare minimum. So the person who had to decide didn't really know how to decide. Since she only had YES and NO. She couldn't ask questions or even say "I don't know."
I think we are getting our infomation under control now.
I can eat now. I'm actually ravenous. Everything is really hard at first--eating, thinking. Every new idea is crippling. The first night, the crippling idea was "What will I tell Ellie?" That's no problem now, she's great. Then it was the DNR (Do not resuscitate) order. That was the clear low point. When you give that, it feels like a lot of different things. It feels like you are deciding to kill your best friend; like for one moment you have the power of God and decide to withhold it.
There have been others I guess, but, after that, things haven't been as hard. And I've been able to talk a lot with Linda, and I think it has been easier for her too. I usually come ever around 6am since she wakes up early, and that is our time.
I don't cry uncontrollably now, not even in quiet places. At first nothing can stop you from crying. After that, you are only crippled by internal dialog when you go somewhere quiet, like the bathroom or shower. My hardest part of the day was usuallly the drive alone back to the hospital in the morning without anyone to talk to. I can be alone now. It's not really possible to stay in an altered state of consciousness indefinitely. You just can't stay euphoric indefinitely, and you can' do that with weeping either. You eventually have to return to your center. And you laugh. Even in the middle of tragedy, people say thing that are just damned funny. Linda laughs too some.
Where things will go, I will not say. I believe Linda has decided what she wants next, but we aren't deciding things this weekend, so you'll just have to wait.
to add something of my personal perspective. I'm the spouse,
which means I'm at the focus of everything; not Linda's twin, not
her parents. Me.
The hardest thing about the week has been making decisions. And you'll
notice that we have changed our mind about things a lot. There is a wonderful social worker here named Kathy and she assures me that this is OK. I said that I expected her to say that, and she told me that her record for that kind of thing was 8 changes of plans. I said we'll never do that many
and she said, "Never say never." I asked her how many plans we have had
so far and she said 4.
The thing that makes decisions so hard is that it is difficult to get lots of
information early enough that you can make use of it. In abstraction, when
you fill out you "Living Will" in the kitchen when you are healthy you have no ide what you are deciding, and it's no better when asked the first time at the hospital. So you say "no." It isn't until you have more info and, more importantly, time to process it that you may say "yes," instead. In my opinion, a living will is a junk document Give durable power of attorney to someone who loves you instead.
Everyone has had that problem; me, Mary, Linda, the physician, the social worker. Everyone. But I am fixing it where I can, and as the focal point, I can do a lot.
That's the reason Linda and I have chosen not to make decisions for some days. I really used my deity-ness (ask Jen about that later) to get someone from Rusk rehab to talk to us on Friday because Monday just wasn't enough time to think. And he came, which was good. I feel like we are getting information, and in particular Linda is getting it when she can use it.
That's really the trick. Since she can decide, we have to honor her choices legally and ethically. And since she was asleep so much, I had a lot information, Mary (Linda's identical twin) had less, and Linda had the bare minimum. So the person who had to decide didn't really know how to decide. Since she only had YES and NO. She couldn't ask questions or even say "I don't know."
I think we are getting our infomation under control now.
I can eat now. I'm actually ravenous. Everything is really hard at first--eating, thinking. Every new idea is crippling. The first night, the crippling idea was "What will I tell Ellie?" That's no problem now, she's great. Then it was the DNR (Do not resuscitate) order. That was the clear low point. When you give that, it feels like a lot of different things. It feels like you are deciding to kill your best friend; like for one moment you have the power of God and decide to withhold it.
There have been others I guess, but, after that, things haven't been as hard. And I've been able to talk a lot with Linda, and I think it has been easier for her too. I usually come ever around 6am since she wakes up early, and that is our time.
I don't cry uncontrollably now, not even in quiet places. At first nothing can stop you from crying. After that, you are only crippled by internal dialog when you go somewhere quiet, like the bathroom or shower. My hardest part of the day was usuallly the drive alone back to the hospital in the morning without anyone to talk to. I can be alone now. It's not really possible to stay in an altered state of consciousness indefinitely. You just can't stay euphoric indefinitely, and you can' do that with weeping either. You eventually have to return to your center. And you laugh. Even in the middle of tragedy, people say thing that are just damned funny. Linda laughs too some.
Where things will go, I will not say. I believe Linda has decided what she wants next, but we aren't deciding things this weekend, so you'll just have to wait.
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