Tuesday, February 15, 2011
Quick changes, Not going home
Just got an update.
B is in a state that make is it impossible to move her. She is staying where she is.
That is, they are not going home. Updates when possible.
Andreas
Going home
Tomorrow morning they are going home to Laguardia place. There is a person that will live with them and take care of B. My wife will help out two times a week. I am also under the impression that B is not in a very good shape. Will update when I know more.
Andreas
Barbara is not doing well
Our understanding from Ed and Mimi is that Barbara has been getting steadily weaker - her breathing has changed, her pulse is elevated, she is not opening her eyes or eating. There no signs from Barbara at all that she knows what is happening. Ed was hoping to move her home, but she is in a state that makes it impossible to move her. She is staying where she is. Ed is by her side and has not slept much if at all. Do not know what one can do to help them right now, but Jean-Luc 608 287 6419 is visiting today, and Andreas 917-348-1018 is keeping track, they will know better.
[a link on breathing difficulties]
Saturday, February 12, 2011
Sara & Predrag visiting Feb 24 - 28
We will visit Barbara and Ed, arrive evening Thu Feb 24, leave afternoon of Monday Feb 28.
Predrag 404 487 8469
Sara 212 460 5896
Predrag 404 487 8469
Sara 212 460 5896
Friday, February 4, 2011
A Bad Patch
When I last reported on Barbara's condition, I was guardedly
optimistic because her walking and talking had noticeably
improved. It is true though, that I did not mention that she was
still plagued by an intense fatigue that kept her sleeping throughout
much of the day. That feature of her condition has worsened since
mid-January. (I write this on Feb. 3-4 between episodes of various sorts.) Even worse is that Barbara can no longer stand up on her own, let alone walk. And she is very uncommunicative. This may cause me to give up on or postpone the project of moving her home that has been our goal for some time. But, so far, I am still trying to keep moving in that direction with enormous help from Mike S. Also Alan W. has now begun to lend some assistance, especially in
peripheral legal matters.
Today we were told that Barbara could no longer have physical therapy because the medicare coverage has run out. Moreover there is no mechanism that would allow me to pay for this myself. And today, we could not rouse her for speech therapy. Her smiles, which kept the spirits of everyone who saw her uplifted have become infrequent and visitors are coming less often.
The difficulty of her not being able to stand led to her having a fall while she was being changed into her nightgown a few nights ago. The fault apparently was the inexperience of the caregiver who should have known that Barbara should have been seated for this operation. The experience was made worse by the uncontrolled behavior of the caregiver after the fall. Since Barbara's decline had begun before the accident, who knows what its contribution was. I share some of the fault since I should have realized that the person in question was not sufficiently experienced in these matters of caregiving and I should have controlled her better in the aftermath. She was a replacement for someone else who seemed even less in touch with reality. I had prepared my case for an improvement in the caregiving on that day but the person in charge did not show up and I had no way to present my case.
Another decision I have had to take is that, despite my misgivings about the demeanor of our oncologist, I have concluded that Barbara needs medical attention at that level. As he knows her case best, I have made an appointment to have an MRI and an evaluation by this oncologist on Feb. 8. But I think there may be other medical issues.
Barbara has been having breathing problems. Is this connected to the tumor? I have been trying to catch one of the two visiting doctors to ask for an opinion. But they are rapidly moving targets. There is a swelling around her throat. Is that goiter? Her hands and feet have been twitching and I was worried that this might be a form of mini-seizure. Certainly the amplitudes of these motions went down this morning after Barbara had her anti-seizure medication. Barbara now sleeps fairly continuously, opening her eyes occasionally but not speaking.
As I mentioned in a previous note, I was planning to contact Dr. Grewall of Great Neck at the suggestion of Dr. Hsu, Louis T.'s high school classmate whose advice has been invaluable. It turns out that Dr. Hsu had asked Dr. Grewall to contact me. Our letters crossed but we finally made phone contact. Dr. Grewall is in favor of trying Avastin, a drug that inhibits the formation of blood vessels that feed tumors. In the present circumstances, I feel this approach is worth considering. But 1.5 hours of travel each way for treatment is too much to submit Barbara to. So Dr. Grewall recommended Dr. Pannullo at Cornell Medical Center and I have written her. There has been no response, so I will try to reach her by phone. As we enter the weekend, there is great uncertainty about our situation.
The Barbara of January has left us for now and who knows if we shall see her again. But, as the bard wrote, "Love is not love that alters when it alteration finds."
Today we were told that Barbara could no longer have physical therapy because the medicare coverage has run out. Moreover there is no mechanism that would allow me to pay for this myself. And today, we could not rouse her for speech therapy. Her smiles, which kept the spirits of everyone who saw her uplifted have become infrequent and visitors are coming less often.
The difficulty of her not being able to stand led to her having a fall while she was being changed into her nightgown a few nights ago. The fault apparently was the inexperience of the caregiver who should have known that Barbara should have been seated for this operation. The experience was made worse by the uncontrolled behavior of the caregiver after the fall. Since Barbara's decline had begun before the accident, who knows what its contribution was. I share some of the fault since I should have realized that the person in question was not sufficiently experienced in these matters of caregiving and I should have controlled her better in the aftermath. She was a replacement for someone else who seemed even less in touch with reality. I had prepared my case for an improvement in the caregiving on that day but the person in charge did not show up and I had no way to present my case.
Another decision I have had to take is that, despite my misgivings about the demeanor of our oncologist, I have concluded that Barbara needs medical attention at that level. As he knows her case best, I have made an appointment to have an MRI and an evaluation by this oncologist on Feb. 8. But I think there may be other medical issues.
Barbara has been having breathing problems. Is this connected to the tumor? I have been trying to catch one of the two visiting doctors to ask for an opinion. But they are rapidly moving targets. There is a swelling around her throat. Is that goiter? Her hands and feet have been twitching and I was worried that this might be a form of mini-seizure. Certainly the amplitudes of these motions went down this morning after Barbara had her anti-seizure medication. Barbara now sleeps fairly continuously, opening her eyes occasionally but not speaking.
As I mentioned in a previous note, I was planning to contact Dr. Grewall of Great Neck at the suggestion of Dr. Hsu, Louis T.'s high school classmate whose advice has been invaluable. It turns out that Dr. Hsu had asked Dr. Grewall to contact me. Our letters crossed but we finally made phone contact. Dr. Grewall is in favor of trying Avastin, a drug that inhibits the formation of blood vessels that feed tumors. In the present circumstances, I feel this approach is worth considering. But 1.5 hours of travel each way for treatment is too much to submit Barbara to. So Dr. Grewall recommended Dr. Pannullo at Cornell Medical Center and I have written her. There has been no response, so I will try to reach her by phone. As we enter the weekend, there is great uncertainty about our situation.
The Barbara of January has left us for now and who knows if we shall see her again. But, as the bard wrote, "Love is not love that alters when it alteration finds."
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