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 update on JIm 
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Joined: Fri Jul 16, 2010 4:54 pm
Posts: 8
Post update on JIm
Well, despite discussing the need for safety precautions in ambulating, I got a call from the nursing home this morning, and Jim had fallen trying to walk down for breakfast.
I had just seen him Friday afternoon, when a mutual friend of ours went with me for a visit.He didn't walk far that day, but he did ok.
The nurse this morning described to me how he was trying to walk when he fell...and she described exactly the same problem he had here last weekend.I guess the weekday shift doesn't communicate with the weekend shift.
He didn't hit his head, he didn't appear to have broken bones...but man oh man he will be sore tomorrow, and with being on Plavix,he will have widespread bruising.
Again, I am told that there are too few staff to help so many patients all the time.
Anyway, I spent several hours with JIm,we had a meal together, I worked on his room, and even got him to sit in his overstuffed chair instead of bed! He told me how scared he was when he fell.I urged him to use his call button any time he had trouble in or out of bed,or going to have trouble walking.
But, I didn't really want to leave...I do see that the Parkinsonian symptoms are increasing very rapidly recently...it's tough not just for him.
As an aside, I had my ultrasound and blood tests done on friday.My dr.found a mass on my thyroid..should hear fairly soon what comes next.
Please keep us both in your good thoughts.<smile>
CJ


Sun Sep 12, 2010 10:13 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: update on JIm
You and Jim are in my thoughts. It is so difficult to prevent a fall, and once they fall they need a lot of care. My LO doesn't use the call button either. And to her, fifteen minutes on the floor becomes 20 hours. I'm sure I would be the same. We are on 24-hour care for my LO from a recent fall. She is not on coumadin (blood thinner) any longer; I thought the risk of a blood clot was more acceptable to bleeding in the brain when she falls. I hope that your own health problems will turn out to be something benign. Good luck to you, Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Sep 12, 2010 10:57 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: update on JIm
Hi Cindyjo,
When it rains it pours, doesn't it? You and your LO are certainly in my thoughts. With a family the size of this LBDA forum all thinking happy thoughts for you, you are sure to get through this quickly and with a clean bill of health. Get rest, take care, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Sep 12, 2010 11:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: update on JIm
CindyJo, you and your LO will be in my prayers! I had a thyroid biopsy a few years ago and it was, thankfully, negative. I pray it will be the same for you. --Pat

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Sep 12, 2010 11:52 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: update on JIm
Cindyjo, More thoughts and prayer for you and Jim. The road was a tough one to begin with, so only positive thoughts for your outcome.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Sep 13, 2010 5:36 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: update on JIm
Cindy - sending lots of good thoughts your way. We went through many falls last year, and I know how scary it is for everyone. Keep us posted on your own health and try to take care of yourself as much as you possibly can. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Sep 13, 2010 9:51 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: update on JIm
CJ,
Wishing you well with your results, I hope everything turns out well.

Sadly falls are a part of this and it is hard to control, no real warning, they just have to watch him more closely!

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Irene Selak


Mon Sep 13, 2010 5:38 pm
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: update on JIm
Cindy -

You & Jim are in my thoughts and prayers. Take care.

Karen


Mon Sep 13, 2010 6:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: update on JIm
Many people in our local support group find it necessary to hire a sitter to be with their LOs in care facilities when the LO is awake and might get up to walk. Ideally the sitter is trained by a PT to know how to closely escort someone when they walk.


Mon Sep 20, 2010 4:18 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: update on JIm
What's the purpose of a care facility if they do not provide the care that is needed? Why have the LO there? Nan


Mon Sep 20, 2010 5:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: update on JIm
The type and amount of care a person receives in an ALF or NH can vary a lot. The fewer CGs who work there, the more your LO is on his/her own. We are very lucky - my dad has a visit minimally once an hour from his CGs. Luckily not everyone there requires this level of care, and frankly, I'm surprised at the amount of attention he gets. Since he can no longer pick up the phone to signal when he needs a CG, they do poke their heads in pretty often in between scheduled hourly visits.
It does seem ridiculous that we pay all this money for our LO to be in a good, safe place and still feel that sometimes we need to hire an additional CG on top of the exhoribitant fees these places charge.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Sep 20, 2010 6:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: update on JIm
No care facility that I'm aware of has a 1 to 1 ratio of staff to patients. This is what would be required to be sure that anyone who walks can do so safely.


Mon Sep 20, 2010 6:04 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: update on JIm
Nan:

I'm with you. "Excuse me, I'm paying all of this $$ and you aren't paying attention?" Surely, this doesn't require a 1:1 ratio.

Gail


Mon Sep 20, 2010 11:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: update on JIm
Gail & Nan - I don't think people should have to pay for extra help when we are already paying so much for care either. But, I guess I have become either more realistic in my expectations of what people get. The rehab facility/NH where my dad was last year, just coming out of the hospital, was supposed to be the best one around that area. The patients were basically left on their own almost all day unless they were in PT or OT. I was there almost every day of the 3 weeks he was in there, and nearly every time I came in, there were 3 or more CGs just "shooting the breeze" for long periods of time while the patients sat alone in their rooms. There seemed to be plenty of staff, but what they chose to do with their time didn't appear to be caregving. (and this place cost almost twice what the ALF where my dad is now)
There are 39 residents with 2 CGs on during the day at the ALF and 1 on evening and night shift. They not only have to go to the people's rooms and take care of things there, but they have to set up the dining room, serve the food, clear the tables and get them ready for the next meal, and give people like my dad showers. I think they also do the residents' laundry. I think they should hire more CGs there, but with a private corp. the bottom line is the bottom line.
I guess my point is, the staffing ratio can vary a lot and the care can vary a lot. You do the best you can picking a place and if you feel your LO needs more/better care than they are getting, a meeting with the director isn't a bad idea. Sometimes just a request for increased expectations over what is happening can have an amazing effect on people and systems. I wish you luck. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Sep 21, 2010 7:10 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post ALF Help
Here's the way it works for us. My Mom is at an ALF specializing in dementia care. I spend 2 hours an afternoon there, my husband spends 2 hours in the am when she gets up, 2 hours in the pm when she goes to bed. The CG's at the ALF are at a 8:1 ratio with a LPN on staff during day. The three reasons we spend so much time there are:
1. To keep her from falling, especially when she sundowns, early morning, evening.
2. To keep her from being alone when she broods and becomes anxious/delusional/depressed.
3. To constantly communicate her unusual needs to the caregivers and educate the staff as the staff turns over.

We also hire private caregivers to give us a break twice a week or to stay overnight if she has fallen and hurt herself because she needs to heal. She is more apt to fall when she is in pain because it exacerbates all of her Lewy conditions.

By doing this I'm able to work. She has a place where she can walk around and around with her walker to burn off anxiety and somebody is always keeping at least one eye on her. She participates in activities because the ALF CGs go get her and include her. There's always something going on even if it is just another resident acting out. She has a great relationship with the private caregivers and when they are there at night I know I won't get a call that she got up to go to the bathroom and fell.

This system works but it takes every element to work. Our time, private caregivers, ALF caregivers, LPNs. And I know it will change but maybe I'll be retired by then. We'll find out, won't we?

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Annie, daughter of brave Marie, dx 2007 and in ALF


Tue Sep 21, 2010 7:45 am
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