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 Hospice turned us down. 
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Joined: Tue Jan 05, 2010 5:27 pm
Posts: 146
Location: Fl.
Post Hospice turned us down.
I finally stopped the RN ans PT & OT that the doctor had to come out and help mom. It just wasn't helping her. The nurse said herself that it wasn't doing any good. I had a talk with the doctor and she thought it was a good idea to get Hospice involved. She gladly wrote a referall. Well the nurse came out and saw that mom could use a walker. and said no. She was not in her last stages. I asked if she new anything about LBD, and she says a little. Well I began telling her about it and how LBD does not have stages and you can never put a time line on it. My mom has lost 10 pounds in 2 months ans mentally she is going down hill very fast. She is incontinent, and totaly gone mentaly. She talks but does not make any sence at all. She thinks her mouth was her vagins and her vagina her mouth. Her body parts are all mixed up in her mind. She is getting very angry alot of the time now. Mosty always at me. It is ok, I know it is not her, I dont take her out anywhere now unless we have to,but I just wish these doctors and nurses would please know what they are dealing with before they make a diagnose. I told her LBD has no stages. You can not time this terrible deasease at all. Our doctor totally agress.
She even has the gaul to ask me well does she have anything else.. maybe if she had something else that would put her in. I looked at her and told her ( and I was nice)beleive me it was hard by this point. I think Lewybody/demintia /w parkinsons is quit enough! I was just so surprised!!! I knw the Lord has something better for her so I am just waiting on Him.
I tell you one thing after she left, I cleaned the house so much!!! I clean when I get really MAD!! In between the times dealing with my mom that was so telling me off half the time on how I wasn't taking care of her right. lol ,lol,lol, You have to love your LO to do this.
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Mon Mar 08, 2010 11:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Oh, Tammy! I'm so sorry things have not been going well for you. It's a nightmare, isn't it? I, too, often wonder what the Lord is teaching me through all of this. But I know His will is perfect. :) --Pat


Mon Mar 08, 2010 11:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Tammy,
How disappointing! Could you try a different hospice organization? Tell them that you have a doctor's referral already. Does the home health agency you were using have a hospice arm? Or does it recommend a particular hospice organization?
Robin


Tue Mar 09, 2010 12:04 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
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I'm sorry for what happened with hospice Tammy. This is why I have been reluctant to contact hospice where my dad is now - both at the NH where he was last summer and the ALF folks act like I'm NUTS to even think about talking with hospice at this point. (even though my dad has almost no use of his body and his mind is shot for the most part too). I just don't want to deal with the rejection, frankly, because everything about this disease is so frustrating I don't want to put myself in that position again.... I suppose I'll get my energy up to seeing some hospice people when I am back in MD in a few weeks.... I hope you can get some help.... Lynn


Tue Mar 09, 2010 8:38 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Tammy, I share your frustration
I'm so sorry that you had to go through this ordeal. I had a similar experience, although my LO is not as far along as yours. She is mobile although she has many LBD conditions and at the time was losing a lot of weight. The way it was described to me, it seemed like hospice would be a great help. When she was turned down the hospice nurse said that dementia did not qualify and that she would most likely have to be bedridden. She also asked me if my LO had any other medical conditions.

I was devastated. My family had been through a very rough time. I totally lost it, crying uncontrollably in a very public area of the ALF. And I am known as the strong one in the family.

While this is about you, not me, I can tell you how I plan to approach hospice next time (and there will be a next time). First, I will not put as much hope into the outcome. Second, the next time I apply for hospice I will prepare myself with medical notes, blood tests, etc.and make a case for hospice. If we are turned down, there will be another time.

Hang in there. I hear you and support you through this forum.


Tue Mar 09, 2010 10:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Hospice seems to treat dementia differently from other terminal diseases. When I worked in Hospice, nearly all my patients had cancer, with a few cases of emphysema and congestive heart failure. I guess since AD can last up to twenty years before the end stage takes someone, they are reluctant to accept a 'terminal' diagnosis in any kind of dementia. I think this is a shame. Does anyone know of an instance where someone lived for years after going on Hospice? Are there data to support their refusal???


Tue Mar 09, 2010 10:53 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Pat,
I know of one family that used Hospice services 1 month shy of 3 yrs, thats the only one I know of!

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Irene Selak


Wed Mar 10, 2010 12:05 am
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Irene, was this a LBD case?


Wed Mar 10, 2010 12:31 am
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Joined: Tue Jan 05, 2010 5:27 pm
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Location: Fl.
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I found out my neighbor works know for Haven Hospice the one that turned us down. She ask some questions and basically it is the fact that she can at times can have violent hallucinations that they do not favor. They said if she gets worse though at any time that we can ask for a re-eval. She hasn't had a violent episode in a while but she does get very agitated and her anxiety gets high and she will lash out if you ever physically try to stop her.
I always thought that was just part of the whole hospice taking care of them through all their behavior when any one gets to the point of needed them. I have talked to the other hospice in the area. I got a really bad feel from them. I trust my instincts. So I am looking into a thing called transitions that Haven offers. I am still waiting on a call back from them. They will call and check up on us and give respite care if I need to run some errands. I do not understand that though. If they are willing to give respite care with transitions why aren't they willing to do it will full Hospice, if they are worried about her behavior. Maybe that is why they have not returned my call.
Her doctor gave a full referral to them. She feels she is in need of it at this time.
I truly feel that it is just true ignorance of LBD on their part. This is so frustrating!!!!!!
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Thu Mar 11, 2010 11:29 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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"Transitions" is a program that many agencies have that is between home health and hospice. I would have the same question you have: why would they accept her for the transitions program if they won't accept her for hospice.

Can you speak with the MD about the info you've learned from your neighbor?


Thu Mar 11, 2010 11:35 am
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Location: Fl.
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Robin,
Yes I do plan to do that. She has her nurology appoinment on the 18th of this month. I want to ask him about this and see what he thinks.

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Thu Mar 11, 2010 11:54 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post 
mockturtle wrote:
Irene, was this a LBD case?


Pat
Yes this was a case of LBD and the man passed away
just about a yr ago, maybe a little more and he had been bed fast for last 2 yrs.They just kept reviewing the case every 6 months.

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Irene Selak


Thu Mar 11, 2010 11:57 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Good luck with this Tammy - I hope you can get the answer you want sometime soon. I am sure it is very frustrating for you. Hang in there! Lynn


Thu Mar 11, 2010 10:39 pm
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Joined: Tue Jan 05, 2010 5:27 pm
Posts: 146
Location: Fl.
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Thank you all so much for your support.
I have been on the phone with transitions. They will come and sit for a couple of hours if I have to run to the store or need to take a shower. But they CAN"T help her to the bathroom and help clean her. She needs that help. She looses her balance and she can't clean herself properly. SO I can't leave her with them watching her at home. She fell tuesday, I turned and walked in the kitchen when she was in the bathroom and she tried to stand up and fasten her pants lost her balance and she fell in the bathtub. Praise God she did not her herself and no brusing. I just don't understand this whole thing with Hospice! I thought they were suppose to help when they get this bad. I just don't understand! I am so furstrated. She says she has names of company's she will send me but we have to pay them. Ya'll know how long someone has to sit with our LO's untoil they get comfortable with them If they like them and I have to pay them the whole time.
I m sorry I am just frustrated and tring to not let mom see me crying. I know the Lord can and will help , it is just sometimes waiting is hard.
I hope you all are haveing a better day!
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Mar 12, 2010 11:55 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Tammy, have you considered an nursing home? There does come a time for most when this becomes a necessity. If your mother lacks the resources to pay for it, Medicaid will pay. I know it's probably not what you have wanted, but you must think of your mother's safety and your own well-being, too. I will continue to keep you in my fervent prayers for guidance, support and wisdom. In Christ, Pat


Fri Mar 12, 2010 12:41 pm
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