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 SERIOUS PROBLEM - discrimination when it comes to LB 
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 46
Post SERIOUS PROBLEM - discrimination when it comes to LB
Folks,

I am way down the path in the journey with my mother. I wanted to make EVERYONE aware of the discrimination that is out there. I have a 100% rejection rate from skilled nursing facilities. The social worker in the hospital was unsuccessful. Now....Mom is back in assisted living (there before symptoms) and they are wanting her OUT. I have had no success in finding placement. SOOOO...I hire a GERIATRIC CARE MANAGER. So far.....no luck either. The facilities look at her anti-psychotic meds and say "we can't meet her needs". The Care Manager is telling me unfortunately, when they see her diagnosis and meds it is a red flag, and the facilities understandably don't want to deal with behavior problems. And believe, my Mom has them. She has 4 behavioral issues: 1. Depression (treated with 15 mg of Remeron)
2. Anxiety (treated with 2 mg. of Klonapin)
3. Hallucinations/Delusion (Zyprexa 2 mg.)
4. severe agitation (2 mg. Haldol)
Before this regimen, Mom was "off the chain". Would you believe she is in assisted living with 24 hour sitting care? (required by the facility because she is too unstable emotionally) The facility wants her out because she has become a 2 to 3 person assist. I understand. HOWEVER, no facility will accept her.

THERE NEEDS TO BE A SPECIAL PLACE FOR THESE PITIFUL PEOPLE. I have actually heard "We don't take Lewy Body." We may have to resort putting her in an apartment with 24 hour nursing care. $$$$$$$

Folks have asked me about putting her in my home. People, she is an emotional wreck. When I drive in my driveway from her facility each day, I crash. My home is my only refuge away from this nightmare.

There is a new facility opening with many open beds. They are coming to assess my mother on Monday and are already questioning her psych meds. Yes, she needs every last one of them. She was at Wake Forest Baptist on their geriatric floor for 6 weeks. She stumped five doctors, some ranked in US News as "America's Best Doctors". The former dean of the School of Medicine has said "It is as bad as it gets."

No solutions.


Thu Sep 18, 2014 10:28 pm
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Joined: Thu May 15, 2014 10:41 pm
Posts: 128
Location: Phoenix, AZ
Post Re: SERIOUS PROBLEM - discrimination when it comes to LB
Denshaw - What a terrible situation for you and your mother! It is hard to believe no facility is willing to take her. All my best wishes and healing thoughts are headed your way. I agree with you that there is no way you should bring her to your home. You must look out for yourself! Best of luck to you!

_________________
Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Thu Sep 18, 2014 10:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: SERIOUS PROBLEM - discrimination when it comes to LB
I'll second what Molly just said. You cannot have anything close to a healthy life yourself if you move her in with you. Your own health and your family's will suffer, and that's not ok.
I know this would be a pain, but it may be a solution for you. Can you move her to a facility in another location where you already know they take people who are in your mom's condition? It might be far away, but at least it would be a place for her to live. Surely there is someone on the forum who lives maybe within a few hours of where you are who has a LO in such a facility???
What a nightmare. I hope someone comes up with a solution for you all soon. Do NOT move her in with you! I just don't know what social workers are thinking when they suggest that people with this level of problem move in with their relatives. A close friend of mine has a psychotic brother who has been in a mental hospital for 3 yr., wants to get out and has nowhere to go if he gets out. The social worker suggests that my friend move her paranoid schizophrenic, hallucinating, delusional, non-mobile, incontinent brother who refuses to take meds when he's not hospitalized, in with her. Do they want to ruin the health of the rest of the family members or what? Most of us are not equipped to handle this level of patient, even if they are our a biologically close relative.
Good luck, I hope you get some positive news soon on placement, 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.


Fri Sep 19, 2014 1:29 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 65
Post Re: SERIOUS PROBLEM - discrimination when it comes to LB
I agree. Early in my Dx, we tried to gain admission into various Continuing Care Retirement Communities in Virginia. My symptoms were few and controlled. From the outside, I looked "Normal". But, we were totally honest and told the facilities of my Dx. All of them said NO except one, who said, deny your Dx, stop the meds, and tell us nothing!! In other words, lie!

But, here in Florida and Alabama, the CCRC's policy is, as long as you are functioning well enough to live independently, we will admit you. No med issues, no Dx issue. We are in the process of qualifying for the CCRC in our area. We have our Cognitive Skills review next week. We will see.

But, there is definitely DISCRIMINATION against LBD patients. Even doctors know little about our disease and treat us like fakes our crazy people. If you find a neurologist that understands this disease, count yourself blessed! Skilled nursing centers will have to kern to deal with us.


Fri Sep 19, 2014 6:56 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 310
Post Re: SERIOUS PROBLEM - discrimination when it comes to LB
Hi denshaw, I just posted that I was glad to hear things had settled down for you - I guess that was an old post! So sorry to hear things are just as stressful. I totally understand how you need to have a safe place to go home to and try to stay sane. Moving your mother in with you would take away any chance of sanity you might have left - definitely better to deal with the caregivers and assisted living than that. Because the situation is so difficult, are there psychiatric facilities in the area you might explore?

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Fri Sep 26, 2014 11:33 am
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 46
Post Re: SERIOUS PROBLEM - discrimination when it comes to LB
Thanks, all. No luck on any acceptance into skilled facility. I give up. Mom has deteriated sooo much due to Haldol, that Hospice has agreed to take her as a patient. They will be visiting her facility to help with wound care that is needed since she is totally immobile, thanks to Haldol. Mom refused it one evening and her mobility and alertness improved tremendously the next day HOWEVER she was SO agitated from the med skip that she turned into the Tasmanian Devil and the facility called me to come there immediately to help get the situation under control. We gave her Haldol and she calmed down. It's a no win situation. Dr says picked one side to 'err' on: sedation or agitation. I chose sedation. He says 'there is no balance' with the meds for LB patients. So disturbing.


Tue Nov 25, 2014 12:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: SERIOUS PROBLEM - discrimination when it comes to LB
I am so sorry things haven't settled down. I do know of several others who have had to choose sedation for their LO since there were no other alternatives that worked. Big hugs, 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 Nov 25, 2014 4:22 pm
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