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 Defiance 
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Jennifer:

The one piece that lets Jon and I sleep nights, knowing we're doing the right thing by Cal, is that in the place where he lives, there's so much more social interaction than we could possibly program for him in a million years.

Part of this, for us, is that we have clear performance expectations for the facility. When things don't happen as we expect, we have a candid conversation with the administrator and we expect that there's a corrective plan in place and we monitor for it. If it sounds cold and hard-a#*$d, well, it is. That's how we make it work.

So, my advice is to outline the dozen or so things (some major, some trivial) that you're going to watch at first. You stop by at random times - we actually have a key to the front door - and make sure those dozen things are being done to your satisfaction. They could be big things (right meds in the right dose at the right time, 100% of the time), or little things (eggs hot at breakfast). It honestly doesn't matter so much what metrics you measure as that you're measuring them. It's about the process of performance management and about creating an expectation that your mom deserves excellent execution of the care plan.

I'd say, right now, we're on about 10 visits / week. Things have been a bit rough with the UTIs of late. We can get down to 5 or so on a *great* week, but we're still there a lot.

E

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Thu May 17, 2007 4:14 am
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Joined: Wed Feb 21, 2007 11:39 am
Posts: 87
Location: Lucca, Italy
Post Condolences
Steve, What a sad story and I am so very sorry about your father and particularly for how he was treated or I should say mistreated. It is a lesson for the rest of us still fighting LBD on our LO's behalf....watch the medications and less is best! For your father it is too late and this should not have happened. I hope you will come to terms with your loss and know that he is at peace. Irene in Italy

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Irene in Italy


Thu May 17, 2007 5:23 pm
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Post Re: new member very sad!!!!!!!!!!!!!!!
steve c wrote:
My name is Steve. I just losed my father to this disease called LBD. ! Steve c :cry: :cry: :cry:


Dear Steve, I am so very sorry for your loss and please extend them also to your Mom from us here at the LBD forums, What a Horrible Horrible story, LBD has proven us right time after time if the incorrect drugs are used these people die too soon, I know that sometimes it becomes nessessary to get these people under control but many places go over and above, they like them calm and there is nothing about LBD that is calm at times, such a shame that a Doctor couldn't DX him long before and he could have been maintained on better drugs instead of the harmful ones. Steve your dad is in a better place now than he had been as of late and I hope this can give you some comfort. :(


Thu May 17, 2007 5:58 pm

Joined: Wed May 16, 2007 9:01 am
Posts: 4
Post Re: new member very sad!!!!!!!!!!!!!!!
Irene Selak wrote:
steve c wrote:
My name is Steve. I just losed my father to this disease called LBD. ! Steve c :cry: :cry: :cry:


Dear Steve, I am so very sorry for your loss and please extend them also to your Mom from us here at the LBD forums, What a Horrible Horrible story, LBD has proven us right time after time if the incorrect drugs are used these people die too soon, I know that sometimes it becomes nessessary to get these people under control but many places go over and above, they like them calm and there is nothing about LBD that is calm at times, such a shame that a Doctor couldn't DX him long before and he could have been maintained on better drugs instead of the harmful ones. Steve your dad is in a better place now than he had been as of late and I hope this can give you some comfort. :([/quote Thanks Irene!!!!


Thu May 17, 2007 9:15 pm
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Joined: Thu Jun 28, 2007 12:32 pm
Posts: 9
Location: Knoxville, TN
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Hello to all,

I am still very new to this forum stuff...This is about my 5th or 6th post. First, Jennifer, I am so sorry to hear about your mom. Has anything new happened? Are things going any better for you? I sure hope so. And Steve, so very sorry to hear about your dad. But thank you so much for sharing with us. Please know that you are both in my thoughts, as are so many of you that I read that are going through some of the same things as I am.

My dad and I are experiencing a lot of defiance with my mom. She reminds me of a little child who has to be watched carefully. She don't get around well...she's a high fall risk. And she stays at home under 24/7 watch, except for whenever we might have a cool day, then my dad may take her for a drive or get her an ice cream or something. She forgets about how to use the walker safely. She constantly has to be reminded how to do things correctly and safely. I've never really been good with kids (I guess cause I don't have the patience). But I am trying to fill this role of caregiver. I just feel like my nerves are shot and my rope is running out. I know my dad feels about the same. I also feel for my mom, bieng so paranoid all the time afraid to trust anyone, even us. Being so afraid because she don't quite know what's going on. I know she must be in a really dark place. Does anyone have any suggestions about this? :?

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Sun Jul 08, 2007 9:13 pm
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