Apparently the head nurse feels that she doesn't need to consult the family about anything. I find these things out through other workers there that I trust. Unfortunately they don't always know what she is up to since she's their boss.

You could [as probably should] contact the Vermont ombudsman agency:
http://www.caregiverlist.com/Vermont/nu ... dsman.aspx

My dad is in Maryland, so I guess there is one there. I plan to talk to the acting director at the ALF when I get there. Doing all this by phone is just so crazy. No one is there when I call, and they invariably call back at a bad time.
I'm not sure why the hospice folks aren't very communicative with the Pathways folks. That on top of the ALF not communicating results in about 5 - 10 phone calls a day that shouldn't have to happen. This is such a waste of people's valuable time. I'm assuming these folks are all busy and extra phone calls to straighten out the mess would help them be more productive.

One thing that I know is that for a family caregiver to effectively manage care for a loved one with LBD at an ALF it is at least a part-time job. The organizational and communication relationships must be developed and this takes a lot of time. I say that it takes a village to care for my LO but there has to be one manager of that village. The only way that I really know what is going on is to be there in the flesh. Watch. Listen. Participate. Day and Night. When I delegate, I ask lots of questions that can't be answered with a yes or a no. Make decisions even though I know that they may possibly prove wrong in the long term.

I'm thinking that the head nurse may be confused or taking advantage of the fact that there are two POA's. It sounds to me like she thinks she is the head of the village of people taking care of your Dad rather than one of the team.

I see two choices. (1) Accept the reality that someone else is managing your Dad's care and help out when you can or (2) Choose a primary POA who is local, willing, and capable of spending the time and energy to take charge of his care.

I don't see these choices in "bad" or "good" terms. Caregivers have their own lives to lead. I believe that we only have one life and we should spend it wisely. However, we may not be happy with the care that someone else provides. On the other hand, if LBD is genetic we may be spending years of good mental and physical health that we will never get back. Either way even if we do nothing, it is a choice.

Good luck to Lynn and to all of us facing these choices.

You raised some excellent points Annie. I am going to explore (again) moving him to VT, even though he refused to move there last year when he was mobile and it would have been a lot easier to get him there. The health care opportunities are so much better and there is a choice of good facilities close to me.
A move is going to be very hard on him, but I think we are very close to being asked to leave the ALF because he is more than they can handle. A move to a NH is probably in the near future anyway.
We'll just keep doing the best we can with what we have....

Lynn,
Your right this is an eventuality. It will be hard on him but I am sure it will also pass and hopefully he will get used to it, now how far is your sister from him at this time?

My sister is living in Florida half the year and will be back in MD May 1 for the summer. My dad is verbally abusive to her most of the time when she is there so it is difficult for her to be with him more than once a week or so. She was there last week and saw him twice. The first visit, his response to everything was "bull s__t" and the second visit she couldn't awaken him at 10 am even though he'd been up for breakfast just prior to her getting there. And so it goes.....

Lynn,
Thats a shame for your sister, I feel bad for her, now if you take him near you will he be the same way with you as he is with her? If so will you be able to take it? We guess we all just have to have faith that this will work out for the best!

Well, that is a good question indeed Irene. I have to think about that. In general he has been nicer to me the last year or two than he has been to her. Part of it is she tends to argue with him, but even when she doesn't he goes ballistic over nothing. I'll have to see how he is with me next week. When I talked with him today he was really anxious to see me and my husband. He thought I had told him we'd be there this past Monday, and I reminded him that it's next Mon. we'll be there. His speech was slurred but his thoughts were clear today except he still gets time mixed up (yeah, the Aricept is still working!!!).
If I do move him, he'll have my youngest son, my husband and me nearby.

We were turned down again last week by Hospice. They were supposed to start him with a Pathways volunteer last week. I'll have to call and see what happened that no one came. Hospice says he needs to continue to lose the weight at the rate he was losing it and/or his albumin level has to decrease significantly. It's 3.4 and they need it to be less than 2.4 or 2.5 to be eligible for Hospice. His kidney disease is now at Stage 3, so I'd think that would make him eligible, but that didn't do it either!
Lynn

Lynn,
Sure sounds like they have tightned admission rules, when we started some 6 yrs ago, they came to our home and spent maybe an hour with the intake and that was it seems many are having a more difficult time with admittance these days, sorry it didn't work out but in time it will!

I never had a patient denied Hospice. Of course, none were dementia patients. They had more 'diagnostically precise' illnesses. I guess you've given us a lesson in what might lie ahead! And Irene is probably correct: They seem to be tightening up the requirements. I think we're going to see a lot of cuts in care for seniors in the years to come and we need to be prepared for the inevitable.

Pat,
I know of few that have been denied and I know of a few that were entered in Hospice and later taken off it. So one never knows!

At least this particular Hospice is very by-the-book with the Medicare criteria. The "failure to thrive" aspect didn't seem to matter unless he loses a lot more weight. I think 82 lb. in less than a year is a lot unless you're on "Biggest Loser". LOL

Hey there, been a long time... mom has been getting a lot worse so I have been busy. We did get accepted in hospice finally they have her in under "Lewy body Disease". It is still a struggle though. I am going to have to hire someone to sit with her that can do complete care when I need to get out and shop and run errands. Because she is incontinite in both now. She can barely walk. Anyway, hopefully they will start looking at Lewy Body as the diagnose to get them in Hospice everywhere. It is a terminal disease.
I will keep you and all in my Prayers Lynn.

Tammy