I'll go first.
I don't know what there is to say today, but I said I'd send around another email today, and it seems important simply to stay connected. This morning I felt very isolated and devastated when I woke up-- this persists in being real. I started reaching out to people at 7:30 a.m. (thank you, Carol, for answering and being up).
I will say one thing: Yesterday Don and his mother and I (I persist in not using her name because it is also "Linda" and that would be so confusing) had some pretty frank and difficult conversations, the details of which I don't really feel like talking about right now. I was just there, and I'm a pretty blunt person, so there you go.
If people want/need something to do, do this: write about Linda for Ellie. If you have pictures, give copies to Don.
Keep letting Don know that you are thinking about him. He does want the emails and ecards at the hospital. Yesterday he said that he doesn't cry anymore when he wonders what to tell Ellie. Now, he cries when he thinks of the scene from the Lord of the Rings, the point at which Froto says, "I wish the ring had never come to me."
He said, "I'm Froto."
I don't know that he is. I think Linda is Froto, and Don is Sam. But I suppose it doesn't really matter.
A co-worker gave me some comfort this morning. Her husband had brain cancer two years ago, he has recovered, and when they asked the doctor for his chances for survival two years ago, the doctor said, "You know, I threw away my crystal ball a long time ago. There is no measuring stick for the human spirit."
If anyone needs to talk, I don't know that we should limit this mailing list to updates-- especially when updates may not come frequently. Rather, I propose that we use it as a means of talking about this to each other, to provide comfort to each other, and talk about how we can help Linda, Don and Ellie together. We are their village.
Jen
Hello Again,
The wonderful woman at the gift shop has brought me down to use her computer! If you want to send E-cards that will be delivered to Don, so he can read to Linda, go to http://www.boone.org and click on the link to e-cards.
I am going to go into a lot more detail in this email-- and if you are feeling very sensitive and emotional, there are things you will NOT want to read-- this is as much for the things I need to verbalize as to give the minutest detail to those who want/need it. But I would say that some of you may want to skim, rather than read.
Linda has not been told of her condition. The family doesn't see any reason to tell her at this point.
Don tells me he hasn't yet sent out an email and he will be able to check about once a day, but if you send E-cards, then he won't have to try to use his computer. Please do send email. I can't reiterate that strongly enough.
Well, Linda has pneumonia now, which seems to have happened so fast. This is very very dangerous. Don says she will be in ICU for a very long time. Again, she can't have gifts-- anything sent to her like flowers (she isn't a stuffed animal person I belatedly discovered), etc., will be intercepted at the gift shop, and the card delivered instead. You can send things to Don-- he may appreciate fresh fruit, as he will be surviving on hospital and fast food for some time. He is having trouble eating more than yogurt right now, understandably. He says, "I'll be starving, and then the food will come, and I can't eat it." But he did eat dinner last night and breakfast today, and I am nagging him to hydrate. He says the hardest moments for him are when he is in the car alone driving from Kathryn's to the hospital-- it seems to be important to him that people are near, though when too many arrive, he retreats to chill out be Linda's bedside.
Now that I have more time, I'll describe the situation here. Linda is in ICU, which means she does have a curtain for privacy, but there are no separate rooms. We have to call into the nurse's station to enter one at a time. I have only seen Linda once, but Don goes in and out every time she wakes up. Fortunately, Linda is very tired and sleeps most of the time. This morning, they tried an alphabet board with her for the first time. You have five rows of letters to make things easy, and first you ask her which row she wants, and she rolls her eyes to answer yes or no as you point to it, then you go letter by letter: "This one?" It exhausts her-- she spelled out C-A-T this morning, so then Don asked her what she meant: are you worried about the cats? Cat from Georgia? Catheter? No, No, No. I said, later ask her if she spelled cat because it is easy and she wanted to make sure she could do it.
The ICU is locked, as I believe the fact that we have to call to enter indicated. Don's sister figured out the password last night pretty easily (being an EMT)-- and we had to laugh as we looked at the keyboard because the password numbers are all different colors... However, we respect the password and continue to call in, even though sometimes they don't answer.
Linda's cardiologist arrived this morning-- the same one who treated me in August. They really do not think this stroke has anything to do with her heart condition. They were doing an echocardiogram when I left, so they may tell me something different when I return upstairs, but this stroke seems, unless a hereditary disorder is revealed, so be just a fluke, the same kind of horrible stroke that we are all at risk for. Obviously, the doctors think Mary should be tested, though, and probably someday Ellie.
Ellie has not come down, and Don's mother believes it would be traumatic for everyone for Ellie to see Linda right now. And because we are not talking to Linda about her condition and she has enough to deal with, I don't think anyone has asked her if she wants to see Ellie. Ellie seems to be doing fine with Linda's mother and sister.
You should know that although there are tears, it's mostly just the four of us (Don, his mother Linda, his sister Diane and I) sitting around in the hallway talking. We have taken over the hallway because it's right by the ICU doors, and every so often, we have to get up and move our chairs as they bring patients in and out. There is a man with meningitis, and a woman who had an aneuryism. Her large family has been in and out-- her husband stays. Last night, they had a birthday party for one of the children, and sang quietly to her. Then, later, they shyly came out and offered us cupcakes, and we took them and we ate them.
From where we sit, we can see the helicopters come and go, and patients wrapped in blankets being whisked in and out. Mostly in.
But we don't talk exclusively about Linda-- the neurologist has said that there is really no point in speculation, and we are not waiting to hear a prognosis. We are not waiting for anything really-- hoping that the pneumonia will not worsen, hoping she doesn't get a UTI which could also be fatal. I don't know at what point they will determine she could be moved, but certainly not until the pneumonia has passed. At this point, she is breathing on her own, but the possibility of a respirator and perhaps feeding tube looms.
I am sorry if this is depressing and sad and morbid. It is horrifying and shocking-- nobody down here has really really absorbed it either, though I think they have a better grasp, with medical backgrounds, than I do. They have explained a lot. She will always have a catheter. She will require round the clock care for the rest of her life. It is the worst. The worst. Don does fine until he talks about what he will say to Ellie-- and it will not be one conversation, but years. He has been talking about compiling all of her journals and writings-- well, I'm not going to go there right now. Every once and awhile Don and I slip into, "She will never..." until Diane tells us that that is not helpful and to shut up. And she is right. But it is not a case of "Oh, don't say that because you don't know"-- but rather a case of "Verbalizing it isn't helping anyone."
Again, Linda does not know. Don points out that she is very smart and will figure it out-- he has said, "She knows what she can and can't do right now."
It turns out that there are about five levels of reflexes: I don't know what they are, except for the lowest two, because these are what we are dealing with. In response to pain, Linda tends to push out with her hands, so her hands and feet are extended outward and Don describes her as looking like a mummy. Last night she seemed to go up on level, pulling upward in a gesture that is more protective. The pushing out is really at the level of reptilian almost, for lack of a better word. It's the final reflex before death. The pulling towards her is almost what you'd expect from a newborn. At this point, these are the things that we can reasonably hope for/expect in terms of improvement: moving up a level or two with reflexes, and being able to look to the right or left. There is the remotest of possibilities that someday she may regain enough muscle tone or movement in her mouth to eat-- but very remote. Her vocal chords are another matter-- she probably will never be able to speak.
Okay, I think I've done with this now.
Love,
Jen
Hello Everyone--
I just lost a very long update, and have only a few minutes to summarize:
For those of you who do not know, Linda has had a massive stroke and tne neurologist has described her condition a
s Locked In. This is a worst case scenario: in effect, Linda is trapped, intelligently, in a body she cannot move except to roll her eyes up and down and blink.
As much as everyone is still very much in denial, Don's mother is a nurse, his sister an EMT and they are very realistic about the prognosis. If Linda were someday able to look to the right or left or be able to clear her throat, or even to eat, these would be significant recoveries. However, only time will tell.
Linda is still in the ICU-- forgive my brevity--NO FLOWERS, please. Please send Don emails. Visitors are welcome. Don has family here, so does Linda, more are on the way.
I will be more eloquent later.
Jen
I don't know what there is to say today, but I said I'd send around another email today, and it seems important simply to stay connected. This morning I felt very isolated and devastated when I woke up-- this persists in being real. I started reaching out to people at 7:30 a.m. (thank you, Carol, for answering and being up).
I will say one thing: Yesterday Don and his mother and I (I persist in not using her name because it is also "Linda" and that would be so confusing) had some pretty frank and difficult conversations, the details of which I don't really feel like talking about right now. I was just there, and I'm a pretty blunt person, so there you go.
If people want/need something to do, do this: write about Linda for Ellie. If you have pictures, give copies to Don.
Keep letting Don know that you are thinking about him. He does want the emails and ecards at the hospital. Yesterday he said that he doesn't cry anymore when he wonders what to tell Ellie. Now, he cries when he thinks of the scene from the Lord of the Rings, the point at which Froto says, "I wish the ring had never come to me."
He said, "I'm Froto."
I don't know that he is. I think Linda is Froto, and Don is Sam. But I suppose it doesn't really matter.
A co-worker gave me some comfort this morning. Her husband had brain cancer two years ago, he has recovered, and when they asked the doctor for his chances for survival two years ago, the doctor said, "You know, I threw away my crystal ball a long time ago. There is no measuring stick for the human spirit."
If anyone needs to talk, I don't know that we should limit this mailing list to updates-- especially when updates may not come frequently. Rather, I propose that we use it as a means of talking about this to each other, to provide comfort to each other, and talk about how we can help Linda, Don and Ellie together. We are their village.
Jen
Hello Again,
The wonderful woman at the gift shop has brought me down to use her computer! If you want to send E-cards that will be delivered to Don, so he can read to Linda, go to http://www.boone.org and click on the link to e-cards.
I am going to go into a lot more detail in this email-- and if you are feeling very sensitive and emotional, there are things you will NOT want to read-- this is as much for the things I need to verbalize as to give the minutest detail to those who want/need it. But I would say that some of you may want to skim, rather than read.
Linda has not been told of her condition. The family doesn't see any reason to tell her at this point.
Don tells me he hasn't yet sent out an email and he will be able to check about once a day, but if you send E-cards, then he won't have to try to use his computer. Please do send email. I can't reiterate that strongly enough.
Well, Linda has pneumonia now, which seems to have happened so fast. This is very very dangerous. Don says she will be in ICU for a very long time. Again, she can't have gifts-- anything sent to her like flowers (she isn't a stuffed animal person I belatedly discovered), etc., will be intercepted at the gift shop, and the card delivered instead. You can send things to Don-- he may appreciate fresh fruit, as he will be surviving on hospital and fast food for some time. He is having trouble eating more than yogurt right now, understandably. He says, "I'll be starving, and then the food will come, and I can't eat it." But he did eat dinner last night and breakfast today, and I am nagging him to hydrate. He says the hardest moments for him are when he is in the car alone driving from Kathryn's to the hospital-- it seems to be important to him that people are near, though when too many arrive, he retreats to chill out be Linda's bedside.
Now that I have more time, I'll describe the situation here. Linda is in ICU, which means she does have a curtain for privacy, but there are no separate rooms. We have to call into the nurse's station to enter one at a time. I have only seen Linda once, but Don goes in and out every time she wakes up. Fortunately, Linda is very tired and sleeps most of the time. This morning, they tried an alphabet board with her for the first time. You have five rows of letters to make things easy, and first you ask her which row she wants, and she rolls her eyes to answer yes or no as you point to it, then you go letter by letter: "This one?" It exhausts her-- she spelled out C-A-T this morning, so then Don asked her what she meant: are you worried about the cats? Cat from Georgia? Catheter? No, No, No. I said, later ask her if she spelled cat because it is easy and she wanted to make sure she could do it.
The ICU is locked, as I believe the fact that we have to call to enter indicated. Don's sister figured out the password last night pretty easily (being an EMT)-- and we had to laugh as we looked at the keyboard because the password numbers are all different colors... However, we respect the password and continue to call in, even though sometimes they don't answer.
Linda's cardiologist arrived this morning-- the same one who treated me in August. They really do not think this stroke has anything to do with her heart condition. They were doing an echocardiogram when I left, so they may tell me something different when I return upstairs, but this stroke seems, unless a hereditary disorder is revealed, so be just a fluke, the same kind of horrible stroke that we are all at risk for. Obviously, the doctors think Mary should be tested, though, and probably someday Ellie.
Ellie has not come down, and Don's mother believes it would be traumatic for everyone for Ellie to see Linda right now. And because we are not talking to Linda about her condition and she has enough to deal with, I don't think anyone has asked her if she wants to see Ellie. Ellie seems to be doing fine with Linda's mother and sister.
You should know that although there are tears, it's mostly just the four of us (Don, his mother Linda, his sister Diane and I) sitting around in the hallway talking. We have taken over the hallway because it's right by the ICU doors, and every so often, we have to get up and move our chairs as they bring patients in and out. There is a man with meningitis, and a woman who had an aneuryism. Her large family has been in and out-- her husband stays. Last night, they had a birthday party for one of the children, and sang quietly to her. Then, later, they shyly came out and offered us cupcakes, and we took them and we ate them.
From where we sit, we can see the helicopters come and go, and patients wrapped in blankets being whisked in and out. Mostly in.
But we don't talk exclusively about Linda-- the neurologist has said that there is really no point in speculation, and we are not waiting to hear a prognosis. We are not waiting for anything really-- hoping that the pneumonia will not worsen, hoping she doesn't get a UTI which could also be fatal. I don't know at what point they will determine she could be moved, but certainly not until the pneumonia has passed. At this point, she is breathing on her own, but the possibility of a respirator and perhaps feeding tube looms.
I am sorry if this is depressing and sad and morbid. It is horrifying and shocking-- nobody down here has really really absorbed it either, though I think they have a better grasp, with medical backgrounds, than I do. They have explained a lot. She will always have a catheter. She will require round the clock care for the rest of her life. It is the worst. The worst. Don does fine until he talks about what he will say to Ellie-- and it will not be one conversation, but years. He has been talking about compiling all of her journals and writings-- well, I'm not going to go there right now. Every once and awhile Don and I slip into, "She will never..." until Diane tells us that that is not helpful and to shut up. And she is right. But it is not a case of "Oh, don't say that because you don't know"-- but rather a case of "Verbalizing it isn't helping anyone."
Again, Linda does not know. Don points out that she is very smart and will figure it out-- he has said, "She knows what she can and can't do right now."
It turns out that there are about five levels of reflexes: I don't know what they are, except for the lowest two, because these are what we are dealing with. In response to pain, Linda tends to push out with her hands, so her hands and feet are extended outward and Don describes her as looking like a mummy. Last night she seemed to go up on level, pulling upward in a gesture that is more protective. The pushing out is really at the level of reptilian almost, for lack of a better word. It's the final reflex before death. The pulling towards her is almost what you'd expect from a newborn. At this point, these are the things that we can reasonably hope for/expect in terms of improvement: moving up a level or two with reflexes, and being able to look to the right or left. There is the remotest of possibilities that someday she may regain enough muscle tone or movement in her mouth to eat-- but very remote. Her vocal chords are another matter-- she probably will never be able to speak.
Okay, I think I've done with this now.
Love,
Jen
Hello Everyone--
I just lost a very long update, and have only a few minutes to summarize:
For those of you who do not know, Linda has had a massive stroke and tne neurologist has described her condition a
s Locked In. This is a worst case scenario: in effect, Linda is trapped, intelligently, in a body she cannot move except to roll her eyes up and down and blink.
As much as everyone is still very much in denial, Don's mother is a nurse, his sister an EMT and they are very realistic about the prognosis. If Linda were someday able to look to the right or left or be able to clear her throat, or even to eat, these would be significant recoveries. However, only time will tell.
Linda is still in the ICU-- forgive my brevity--NO FLOWERS, please. Please send Don emails. Visitors are welcome. Don has family here, so does Linda, more are on the way.
I will be more eloquent later.
Jen
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