Hi all.
We had another family meeting today. Dr. Fryer came in on Saturday morning to meet with Doug, Nancy and Joyce, and Joanne and I. She reitereated and confirmed many of the things we discussed a week ago, Thursday. The Herceptin (cream of the chemo crop) has been discontinued, as has the pamidronate (bone builder). The continued use of these two drugs was contingent on improvement in Alice's functioning and condition. In fact, we saw quite the opposite. Her processing has continued to slow down and she had trouble keeping track of the lines of conversation today. It was a little esoteric in nature, but also quite concrete at times. Sometimes the shifts in focus seemed to leave Alice behind.
She was able to participate, though, and her answers were always on topic. It took a long time for her to formulate them, however, and sometimes we could see the threads of her thoughts slipping away.
We met at 10 am--she was already very tired. Nancy, Joyce, Joanne and I excused ourselves after a few minutes and left Alice, Doug and Dr. Fryer alone to talk. I think lessening the participants in the group was helpful. While they were talking, Gerard, the visitation chaplain from Alice and Doug's church, stopped by. Aunt Joyce called his visit 'divine intervention' and we couldn't disagree. Both Alice and Doug are fond of Gerard and are very comforted by his visits. He spent about an hour with them and conversation seemed to flow.
So, back to Dr. Fryer's comments. She noted the discontinuation of the chemo (Alice did not receive her chemo yesterday) and the continued need for blood. She repeated that Alice's need for blood would only grow greater and her body would be less and less able to effectively utilize the blood, over time. She noted that, medically, there is little left to do beyond ensuring comfort. Alice is more than welcome to stay in the hospital, but a move to Sakura House (hospice) is possible and appropriate at this time. Alice indicated that she would like to see Sakura House again (she and Doug visited during their grand opening, three years ago) in order to make an informed decision.
This has been arranged for tomorrow morning. A wheelchair accessible taxi will pick her up at 10 am and deliver her to Sakura House. We'll have a quick tour and return to the hospital.
Nancy, Joyce, Doug and Joanne and I went there this afternoon, to satisfy our own curiousity and perhaps to ask questions that might be considered inelegant, with Alice present. It is a beautiful and luxurious place. It is flexible and accomodating and personalized. Residents can request special meals and there is space for family members to cook for them. Each room has a patio, a private bathroom, a wee fridge and microwave, a flat screen tv, a pull-out couch and a gorgeous recliner. There are volunteers and staff that will assist with bathing, meals, or just be company, if one wants. There is a massage room, a huge-screen tv in a sound-proof room, a jigsaw puzzle table, a library, extensive decks and gardens...Pets are welcome, as long as they've had their shots. Even cows!
This is certainly a hard moment for us. The realization that we are losing her has been dawning for several weeks, now. It is getting more and more real and certainly touring a facililty devoted to end of life only brings our thoughts closer to this idea. We are not sure how much Alice is understanding about all of this. She seems to be keeping up, but her constant fatigue and somewhat vague answers tend to leave us with many questions about what she is thinking.
We had another family meeting today. Dr. Fryer came in on Saturday morning to meet with Doug, Nancy and Joyce, and Joanne and I. She reitereated and confirmed many of the things we discussed a week ago, Thursday. The Herceptin (cream of the chemo crop) has been discontinued, as has the pamidronate (bone builder). The continued use of these two drugs was contingent on improvement in Alice's functioning and condition. In fact, we saw quite the opposite. Her processing has continued to slow down and she had trouble keeping track of the lines of conversation today. It was a little esoteric in nature, but also quite concrete at times. Sometimes the shifts in focus seemed to leave Alice behind.
She was able to participate, though, and her answers were always on topic. It took a long time for her to formulate them, however, and sometimes we could see the threads of her thoughts slipping away.
We met at 10 am--she was already very tired. Nancy, Joyce, Joanne and I excused ourselves after a few minutes and left Alice, Doug and Dr. Fryer alone to talk. I think lessening the participants in the group was helpful. While they were talking, Gerard, the visitation chaplain from Alice and Doug's church, stopped by. Aunt Joyce called his visit 'divine intervention' and we couldn't disagree. Both Alice and Doug are fond of Gerard and are very comforted by his visits. He spent about an hour with them and conversation seemed to flow.
So, back to Dr. Fryer's comments. She noted the discontinuation of the chemo (Alice did not receive her chemo yesterday) and the continued need for blood. She repeated that Alice's need for blood would only grow greater and her body would be less and less able to effectively utilize the blood, over time. She noted that, medically, there is little left to do beyond ensuring comfort. Alice is more than welcome to stay in the hospital, but a move to Sakura House (hospice) is possible and appropriate at this time. Alice indicated that she would like to see Sakura House again (she and Doug visited during their grand opening, three years ago) in order to make an informed decision.
This has been arranged for tomorrow morning. A wheelchair accessible taxi will pick her up at 10 am and deliver her to Sakura House. We'll have a quick tour and return to the hospital.
Nancy, Joyce, Doug and Joanne and I went there this afternoon, to satisfy our own curiousity and perhaps to ask questions that might be considered inelegant, with Alice present. It is a beautiful and luxurious place. It is flexible and accomodating and personalized. Residents can request special meals and there is space for family members to cook for them. Each room has a patio, a private bathroom, a wee fridge and microwave, a flat screen tv, a pull-out couch and a gorgeous recliner. There are volunteers and staff that will assist with bathing, meals, or just be company, if one wants. There is a massage room, a huge-screen tv in a sound-proof room, a jigsaw puzzle table, a library, extensive decks and gardens...Pets are welcome, as long as they've had their shots. Even cows!
This is certainly a hard moment for us. The realization that we are losing her has been dawning for several weeks, now. It is getting more and more real and certainly touring a facililty devoted to end of life only brings our thoughts closer to this idea. We are not sure how much Alice is understanding about all of this. She seems to be keeping up, but her constant fatigue and somewhat vague answers tend to leave us with many questions about what she is thinking.
One thing that she has been clear on is that she is not in pain. Of all the things that are emotionally painful and confusing, I am most grateful that she is not having to deal with the indignities of physical pain, too. It is comforting to know that, at this time, pain management is not an issue.
I'll let you know how the tour goes and if she makes a decision, one way or the other. As I understand it, there is no rush on this choice--Sakura House will be there if she wants to be there.
She is still enjoying visitors--keeping coming for short visits. She is not talking much, these days--a sentence or response takes so much effort for her to put together. I think she is happy to hear your stories and remembrances. She definitely has chocolate to share--the good stuff, too (thank you Bev and Dan)! I'm afraid her pink llama's wool blanket has gone awol. We are trying to consider its disappearance charitably, as a laundry mishap. It was not labelled with her name or room number, so if mistakenly put in the laundry, how could it be returned to her? I hope whomever is cuddled up in it now is enjoying it as much as she did.
Keep us in your thoughts. We appreciate all of your notes and messages and good vibes.
love, Robin
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