Thursday, November 10, 2011

A New Act

Home Sweet Home. The good news is I did get some sleep - the most in the last two weeks. I did wake up around 2 and 4 - but that may have been due more to hospital programming - I went back to sleep until 6. The bad news is I was awakened by Meagan telling me she was going to throw up.  What a way to start the day.

She's gone back to sleep - her nausea I suspect was due more to mucus and clogging up of her throat. She has thrush - which is very common when you've had chemo and steroids. As a result over the last several days she has lost her voice - can barely be heard - and her throat is sore and scratchy. She is due for a new scopolamine patch around noon today so I hope that with that and some tea and lozenges to clear her throat she will be ok in that department.

Physically she is very weak. She cannot stand on her own nor can she push herself up from the chair or toilet to get to her walker or wheelchair. She can use her walker but only go a little way. She is shaking continuously (a family trait magnified) and when she is sleeping or dozing she gets body spasms - a bit disconcerting. The new bathroom arrangement has worked really well. The only downside we need to address now is she has no place to look at herself in the mirror and do her make up, etc. That is the next phase of our project. Mentally she can carry on a conversation, although it can wander or what she says can be unrelated. She will ask questions or make comments that are not connected to the current conversation. I'd say this most recent event has caused another step down in cognition. She's eating fine, and used her computer some.

We have the physical therapy agency coming for an assessment at 11 today. They do an assessment and submit to the insurance company a plan, which will no doubt be approved. We went through the same thing after her stroke with this company. Someone will likely come in 3-4 times a week for an hour each time to work with her on strength and getting her to be able to stand.

Separately, I'm also looking for someone to come in for 2-3 hours 3-4 days per week. I've got an inquiry in to one agency. Meagan is not at all thrilled about this - she values her independence and doesn't like people in our home. So we had a discussion about it last night. It's very difficult for her - but I think she has acquiesced to the situation. I simply cannot be the full time caregiver when she requires so much more support. She needs someone with her all the time. It's been a long march and I'm pretty burned out, and with a very rugged journey ahead I need more help. It's not hospice support - yet. More like personal support and assistance - so I can get away for short periods of time. But I would like to find one person who can be with us all the way to the end. It's not a friend or relative either - she values her dignity and wants to be able to conduct her relationships on equal footing. So I'm thinking this person could help her schedule visits and hover in the background.

If any of you in the Seattle area know of someone who would be interested in this kind of work - please contact me.

Today we are going to buzz the rest of her hair off and get her cleaned up. She might be able to take a bath today, although she can't shower and get her head surgical site wet. She's going to pull out Audrey, her wig, again.

She starts brain radiation on Monday. She is scheduled for 20 treatments, which occur Monday-Friday. On Wednesday she will get the staples out of her head. And we need to schedule a visit with Dr. Kaplan for Tuesday or Thursday. Along with physical therapy that will be a busy week. So it will be nice to just hang at our home until then.

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