Today has been hell. She spiked a fever of 101 last night and was
experiencing severe pain in the buttocks and tingling in both
legs. They believe it is all caused by disease progression. Rehab
made the decision late yesterday, before all this happened, they
absolutely would not take Sandi as medically there was no point to
rehab at the hospital. There was some discussion of trying to move
her to a nursing home/rehab place for 20 days as allowed under
medicare when you don't have a supplement so she could get maybe
an hour a day of rehab. But, in the end it was decided, with lots
of tears from both of us, that she will move to hospice for
however long she has left.
She will be doing hospice at home as she wanted. As of now, we
are to meet with a hospice coordinator tomorrow morning to put
things in motion to deliver a hospital bed to here at the house as
well as other supplies and start coordinating aides and medical
staff. The goal at this point is to have her come home sometime
Friday.
I think the last 24 hours brought it home to her what was
happening and she decided enough was enough. Everyone on her
medical team, including two nurses that have been absolutely
wonderful with her the past two weeks, all told her in private
conversations when Scott and I were not around that there really
was nothing more that could be done to stop all the damn cancer.
I knew this was coming and it was still a brutal and devastating
day.
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18 comments:
Kevin,
I am so deeply saddened to learn the news. I am sure 'brutal and devastating' describing the day only touches the surface. It is good that Sandi will be able to return home, which will be of some comfort to her.
You all remain in my prayers.
So, so sorry, Kevin.
Thank you both. In recent days I had let myself that just maybe she could go to rehab, get a little better, and they could then decide to do something to keep her around awhile longer. I thought that the fact they were considering rehab meant we still had a chance.
If it ever did, and I am not at all sure about that now, that is gone now. We had so many plans....
You have no idea how many people care, thanks to your writing, & to Sandi's vivid presence online. Words do matter.
I'm just one of many, a quondam online acquaintance, a DorothyL lurker--who is thinking of you & Sandi right now.
Bill Crider always says it better. "So, so sorry, Kevin."
I'm sorry, Kevin. You are in my thoughts.
Because I know Sandi, have spoken to her at length a number of times, I don't know what to say here beyond the fact that I'm terribly, terribly sorry for her, and for you, Karl and Scott. All of you are in my prayers.
I have no words except you are all in my thoughts and prayers.
When my sister died, the only word I could think of for cancer was evil.
You will find that hospice will be of great comfort for the both of you. You'll have a chance to say the many things that often go unsaid, even though they should be said every day over and over. Strangely, there will also be laughter and memories of all the good times -- the things that make life worth living and sharing.
My thoughts, as always, are with the two of you.
Thank you everyone. I don't know what to say anymore. It all hurts so much.
I'm so deeply sorry to hear the news, Kevin. We went through home hospice four years ago with my father, and it was as good an experience as one can have under the circumstances, as the hospice folks were wonderful. My mother-in-law just passed away after being in hospice for three months (at home and then in a facility) and again, she had very good care (as did my father-in-law last year). Unfortunately, it also appears that my mother, currently in the hospital, is also headed for home hospice, and we're getting that all set up now, so your experience sounds all too familiar. Thoughts and prayers to you and your family, and I hope it will be as gentle and peaceful a transition as we had with my parents and in-laws. It's hard to say good-bye, but honoring a loved one's wishes is a special gift.
Hard times for all of you, Kevin. Hospice won't ease your heart, but it will ease her pain. That will be a comfort, at least. And they know very well what you're going through. My experience with them was nothing but good.
I am so very sorry to hear this. No matter what she should not have to endure much pain. I think that she needs as much relief from pain as possible. Both of you will be in my thoughts and prayers. I hope that she has the very best hospice workers.
To all of the compassionate, articulate people posting here, please know that your words have a resonance. And to Kevin: this is just one among many gifts that you & Sandi have been offering all along. My--our--deepest thanks to you both.
I am incredibly sorry to read this, Kevin. Know that you and Sandi and the boys are in my thoughts and prayers daily.
My heart breaks for you all. No words can help in such a situation, but I hope that knowing so many are thinking of and praying for you all will bring some small comfort.
Thank you everyone. I appreciate it so much. I know I am not the only one to deal with this. I am just overwhelmed and having a very hard time with it.
The reality of our situation continues to coming crashing down on me. She came home yesterday evening by ambulance and was very out of it. This morning, after considerable struggle, I got her out of the bed and changed as well as the bed changed.
Got her back in the bed and then started working on her morning meds. Because they had medicated her before she left, I did not look at the paperwork. This morning I looked as part of doing her morning meds and realized the list of 20 medications had shrunk to five. Her list has not been so short since before she was diagnosed back in 2011.
Kevin, you're not the only one to go through a similar situation, but you're the ONLY one to go through YOUR ordeal. Every situation is different and the way you handle is is yours and yours alone. It's different for all of us and you have to deal with it your own way as best you can. That's been impressed upon me over and over. Let yourself have some time and some breaks from whatever you need breaks from.
I hope you have an excellent Hospice team. Ours was great for him, but I haven't gotten much out of it since his passing. Many others have said that was valuable for them. I hope they are fully there for both of you and for Scott.
I don't know how good they are. The people I have met seem to be really good and certainly seem caring. But, the promises I have been given so far are not materializing in the time frames I have been told.
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