I'm not even sure what to say or write about the last few days... I'm sorry to have been out of touch. Lots of company. It's definitely harder to get to the blog when there are so many people and so much commotion. Mom is definitely having a bad stretch. We tried the Fentanyl patch a few different ways, a few different dosages, and finally decided with the help of the hospice nurse today that it's just not working. We all became afraid that this totally "freaked out" look in Mom's eyes which seems to be there all the time when she's awake, may be due to the Fentanyl. It seems that she started with this bad, "freaked out" stretch at the same time as that medication, maybe it's a coincidence but it was enough to make us all agree today to take the patch off and resort to back to our old stand-by, Ativan. We all agreed that Mom's anguish is more mental and emotional than physical pain. But she's definitely having a hard time. We're performing suction to her mouth and throat pretty constantly, she's having many more episodes of choking and being really unable to clear her throat, which feels very scary while it's happening. None of us are very sure of how to help except to thrust Mom forward in her seat and try to suction as far down her throat as we can. It's truly awful. She is pretty much crying out all the time that she's awake and doesn't seem at all able right now to calm herself in order to focus on conversation or communication. It's seeming less and less possible to "reason" with her and she remains very resistent to medication. Every single dose of any medication that she takes is a struggle. We've pretty much decided that "there will come a point"... we don't know what it is yet... but we're hoping we'll recognize it when it's upon us! There will come a point when we can no longer trust Mom's ability to make any rational decisions for herself and she'll be completely dependent on us to decide for her when and what medication is appropriate. It sucks to become the parent to your parent.
Adam came up on Sunday and helped with the lift to Mom's shower. On a brighter note, Mom LOVES her shower... she's been getting carried upstairs consistently 2x per week and she absolutely loves it. She's warm and content and quiet and cries out with anguish once she realizes that we are finally forced to shut off the water when the hot has finally run out! Adam called before he came and asked "How's Mom Doing?" I found myself just completely unsure about how to answer that question. I feel like I just have no perspective on how she's actually doing. It keeps feeling like we're just never settled into anything predictable. I wish we were... the only thing I know for sure is that the only way to manage this is to stay completely fluid and just know that from one minute to the next, we have to be ready for whatever it's going to be like today... and whatever it's like today will be very different from what it was like yesterday! It's totally unpredictable. I don't know how Mom's doing. Her vital signs remain stable, her oxygenation level is always in the upper 90%... I think today it was 96% when the nurse visited. Blood pressure is good, her pulse is always high... I think it was 118 today. Her skin is great... she's been sitting on a new Roho cushion which is like the "Cadillac" of support surfaces... intended to prevent skin breakdown. She says it's very comfortable and she doesn't seem to need to be scooted up in her seat quite as often during the day. She's still getting 4 cans of her feeding every day... and we were able to replace the little rubber stopper on her g-tube today since it was just about all the way broken. She 's well cared for, Mercy does a great job during the overnight and calls us if she ever needs help. Annie and I are mostly just around all the time during the day, Mary's been visiting since Friday so Mom's getting lots of loving attention. I think though, after these few days, we're all kind of at wits end a little bit. At least today it was warm and we were able to get in a good walk. We even stayed outside and sat in the warmth and sun today after the walk. For a minute there, it even seemed that Mom might fall asleep sitting outside. It was nice to see some sunshine on her beautiful face.
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