I apologize if I gave anyone the wrong impression with my previous post. I do not expect Alicia to die in the next few days. I do expect that they are working to get her more effective meds. We simply felt that after a busy weekend, a couple days of solace may do her good as she seeks an inner peace.
I sometimes feel that by being open and honest and trying to keep as many friends and family aware of what was going on that I made a mistake and opened the door too widely. So, to appease the appetite that I whet:
Alicia is at home. She is sleeping in her own, unmodified, bed. She gets up and goes to her own bathroom. Most of the time she does so without assistance, occassionally she will ask for help. She does some tube feeds, but is not as consistent as she was, and we expect the number of these to continue to decline. She sleeps quite a bit, but she also lies quietly with her eyes closed, not actually sleeping quite a bit as well. Most of the time she doesn't care if someone is in the room with her or not. If she wants someone to be there, she asks. If she wants someone with her, she is interactive and has some good conversations. She writes clear notes on a whiteboard to "speak". Her cognitive ability has not been affected. She is still very swollen and in some pain. Her discomfort has simply outpaced the increasing dosages of meds. Hospice has been more than helpful. They have been wonderful to have as the lead of her care team. Chris is off from work to coordinate Alicia's needs. Bo goes to the babysitter during the week. The girls stay at home some and also rotate to some other family and friends.
We all anticipate this will be the drill for some time. Should that change I will let everyone know. When so many people are reaching out to all of us, it simply makes the already consuming task, so much harder. I want to reply to everyone, and so does everyone else, but just thinking of a response takes more energy than it is worth. We aren't ignoring you, we simply don't have anything to say most days. I don't want to offend anyone, and I don't want to push anyone away or brush anyone off, but I just needed to share my feeling here. I don't do that very often in this space, as I am very cognizant that this is not about me, but I needed to share that, not just for myself, but for Chris, and my parents and everyone else who is trying to correspond with dozens of people each day, when also juggling what is happening right in front of us.
I most likely will not have an update for some time. I may have a couple posts about the rapidly approaching fundraisers.
Thank you for your prayers.
~Sarah
I sometimes feel that by being open and honest and trying to keep as many friends and family aware of what was going on that I made a mistake and opened the door too widely. So, to appease the appetite that I whet:
Alicia is at home. She is sleeping in her own, unmodified, bed. She gets up and goes to her own bathroom. Most of the time she does so without assistance, occassionally she will ask for help. She does some tube feeds, but is not as consistent as she was, and we expect the number of these to continue to decline. She sleeps quite a bit, but she also lies quietly with her eyes closed, not actually sleeping quite a bit as well. Most of the time she doesn't care if someone is in the room with her or not. If she wants someone to be there, she asks. If she wants someone with her, she is interactive and has some good conversations. She writes clear notes on a whiteboard to "speak". Her cognitive ability has not been affected. She is still very swollen and in some pain. Her discomfort has simply outpaced the increasing dosages of meds. Hospice has been more than helpful. They have been wonderful to have as the lead of her care team. Chris is off from work to coordinate Alicia's needs. Bo goes to the babysitter during the week. The girls stay at home some and also rotate to some other family and friends.
We all anticipate this will be the drill for some time. Should that change I will let everyone know. When so many people are reaching out to all of us, it simply makes the already consuming task, so much harder. I want to reply to everyone, and so does everyone else, but just thinking of a response takes more energy than it is worth. We aren't ignoring you, we simply don't have anything to say most days. I don't want to offend anyone, and I don't want to push anyone away or brush anyone off, but I just needed to share my feeling here. I don't do that very often in this space, as I am very cognizant that this is not about me, but I needed to share that, not just for myself, but for Chris, and my parents and everyone else who is trying to correspond with dozens of people each day, when also juggling what is happening right in front of us.
I most likely will not have an update for some time. I may have a couple posts about the rapidly approaching fundraisers.
Thank you for your prayers.
~Sarah