how's it going...

... in Virginia? Pretty rough. I have long realized that anyone who finds themselves in some sort of compromised position, unable to fend for themselves needs an advocate. Whether that individual is stuck on the merry-go-round of the legal system, or in a situation where they need medical help, a child without a 'voice' in foster care. Anyone cannot speak up for themselves: tied to a bed with tubing and wires, in a sterile hospital setting, or a minor who becomes a ward of the state: they need someone to be a mouthpiece to be insistent on their behalf.

The wife was with him the entire time he was in the hospital: staying there day and night for nearly three weeks. As well as being the primary care-giver after he was discharged to return home, having  a seriously dismal prognosis.  He and she have been here in this house since late January. I think yesterday when I sat with him on the deck behind the house on a bright warm sunny afternoon was the first time he has been outside since he was released. She was able to get away, run some errands, do some shopping without the urgency of returning, worry about how he was responding to paid sitters. 

There has been a hospice worker sitting with him two nights this week. Bless you Tracy. He gets meds. that should make him sleep for at least several hours, but wakes and thinks he needs to get up about every forty-five minutes. We've all had that happen: You set the alarm. Go to bed. Sleep hard until one a.m., then suddenly wide awake, on full alert, thinking some drama is occurring and you absolutely positively must jump out of bed to handle some crisis. Or wake every hour thinking it did not go off/you missed hearing it chime, and now drastically late, heart racing, in a crisis mode.

He naps occasionally during the day, but a round-the-clock caregiver cannot, needing to get things done during normal 'doing things': washing, food prep., personal care. And if you are the one who has been up intermittently at least twelve times during the night shift - there's not much left of you to make it through the day. Especially if you anticipate another night of: sleeping in a chair at his bedside, constantly on the alert.  Urgent necessity of The immediate needs of  a guy who awakens every forty-five minutes ready to get out of bed, but unable to stand independently or walk without assistance.

There seems to be a disconnect with the care/attention they are receiving from the local hospice program/staff. When the nurse made the decision (based on guidelines, I am sure) that he should only have a visit from the staff once a week, it seems they became considerably less attentive. This cannot go on much longer. She is well past the end of her ability to hang on, but keeps hanging. Reminding me of the poster we've all seen with the kitten hanging on to the end of he rope: with the print telling us 'when you get to the end, tie a know and hang on!' It seems to me like there is nothing left - this family is well past the last little shredded string that they might hang on to...