Difficult Decisions

Ugh... It's 6pm on Sunday night. Mama Marian is back in restraints with one leg over her padded bed rail and her hands busy picking at the blankets. She just informed me that she does not think that the dog has been fed yet today. She then asked me, "when did you become the ace of your group?" I tried to give her a curly fry and she smacked it out of my hand. She's also been talking to "the person on the other end" of the one-way intercom and leaving voicemails aloud without a phone.

This is not easy... and I'm just a visitor here at UCONN Hospital. Mom has a one to one "sitter", a nurse, several doctors, housecleaning, and room service here. Dad and I have a decision to make and we need to make it soon. We could take Mom home with Hospice in place a couple of hours a few times each week. We also might be able to transfer her to Branford Hospice, an inpatient Hospice, about an hour and 15 minutes from home. If she does go there, though, they require a two month or less prognosis and she would have to be sedated somehow because they do not allow patients needing one to one supervision or restraints. Her prognosis is, at this point, unknown because of failed attempts at getting another MRI. The CT scan does not give enough information to determine the extent of damage or infiltration of the tumor, though it does show a seemingly stable level of edema.

The decision feels like the hardest one yet; harder than the DNR orders that we signed last week, harder than the call to Boston to cancel her scheduled treatments. We want Mama Marian to be home. We would love for her to be where things are familiar, where there are no constant beeps, unknown people coming in and out, no IVs, no intercoms, code blues, etc... But we don't want her to come home if we can't manage her and keep her comfortable. We don't want to bring Mom home just to have to bring her back to some hospital or transfer her to inpatient Hospice. Transitions are nightmarish these days; just changing the bed pad under her requires two people and always brings agitation, yelling, and the almighty death grip. Little changes, movements, extra noise, etc... seem to terrify her and the immediate response is defensive and hostile. And she still isn't sleeping. In fact, through the duration of her week-long hospital stay she has slept about 15-20 hours total. For the most part she has been only eating about 20-30% of her meals. Mama Marian continues to be "on the go" and seems to be relentlessly trying to get out of bed "to leave" and remains restless even when she is lying down. Thankfully, though, she has not had much pain at all over the past few days.

So, here we are with a choice that we are not yet sure is fully ours to make. Tomorrow we will be able to talk more with the social worker, case manager, doctors, Hospice, and Branford. We were hoping that our decision would be a little easier or more clear after the weekend, but things remain much the same as they did last week.