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 Life Expectancy 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Life Expectancy
Hi:

I just had a conversation with my mother in which she told me that the head nurse at the Assisted Living Facility that she is living at told her she did not have LBD because she had lived too long with the symptoms and people with this disease do not live very long. I have not ready anything like that and I told my mother that. Could someone tell me what the life expetency of LBD patients and what it is that usually "gets them" in the end? I would like to have much better information than - I read people with LBD live 2 - 8 years after diagnosis - or whatever the figures are. It is hard to counter these people when they keep trying to accuse my mother of doing the things she does because she is a drama queen and not a person with a legitimate illness. I am feeling like I need data.

Thanks - Liz


Fri Sep 16, 2011 2:41 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Life Expectancy
That's pretty outrageous. When my husband was diagnosed in 2003, I was told life expectancy was about seven years from diagnosis, but that it varied considerably. He's only 59, so the rest of his organs are still fairly strong.

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Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Fri Sep 16, 2011 2:58 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Life Expectancy
i think the person that said that to your mom should be called on the carpet for it... i dont think that is a statement whether its true of false that should be told to a patient.

my understanding its about the same as ad.. but as debry mentioned, a lot has to do with the person and age and their over all condition...especially as we see more and more folks with early onset..

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Last edited by cdw on Tue Oct 11, 2011 8:18 pm, edited 1 time in total.



Fri Sep 16, 2011 3:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Life Expectancy
Liz - perhaps you can find some literature on LBD and share it with your mom's CGs, the administration, whomever needs it. Sounds like they are pretty clueless about this disease, and if they see it in writing, they may get it better. 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 16, 2011 6:16 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Life Expectancy
Liz,

Perhaps it's a misunderstanding. "Lewy body dementia" includes two diseases -- PDD and DLB. Those with PDD live a very long time as first they have PD and then they develop dementia. Those with DLB have a shorter survival time.

Main cause of death in those with LBD is pneumonia.

Robin


Fri Sep 16, 2011 6:44 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Life Expectancy
Outrageous is certainly one word for the NH behavior.

The doctor's diagnosis is probable LBD, and the nursing home staff told the patient that the doctor is wrong and she is just a drama queen?!

Does that about sum it up?

Many lay persons have a hard time with the fluctuations of the disease, especially before it is diagnosed or before they've educated themselves about it. If you can remember this, how come you can't remember that? Yesterday you could do that without making a huge mess, what is wrong with you today?

But it is outrageous and totally unacceptable that professionals who deal with persons with dementia are so ignorant of the realities. To give these people the benefit of the doubt, maybe they will change their attitudes when they learn more about lbd. Do get the materials offered from ldba.org to share with them. Be polite but firm. Assume the best -- that they will welcome information and learn from it.

Since Dementia with Lewy Bodies was only identified as a separate disease in 1996, there really aren't reliable statistics about life expectancy. Literature tends to say that 5 to 8 years is typical, but 2 to 20 years is an observed range. Coy is in his 9th year, still in early stages. It seems very unlikely to me that Coy will live another 11 years, simply because he has already exceeded his family's life expectancy by 25 years. Most DLB people are diagnosed late in life, and often have comorbidities. (Coy has congestive heart failure.) Those factors keep the life expectancy averages down. It certainly doesn't mean that someone diagnosed at a younger age or in otherwise sound health might not live longer than the stated range.

But whatever the range, the NH staff behavior is totally inappropriate -- if you can rely on your mother's reporting. That is the other unknown here. Could your mother be reporting something she is confused about? Have you talked to the DON directly.

Please share this story as it unfolds.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Sep 16, 2011 6:54 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Life Expectancy
Liz,

What is the administrative structure at this place? Is it a small place where this nurse is at the top of the food chain or is there someone to escalate to? In the place my mom is in, the nurse is an LPN, with only the basics in medical education. I often go to the Director of Nursing or the Clinical Coordinator when something doesn't seem right. But Mom is in a large, well established place that has been around since at least the 1960s.

If there is anyone to escalate to, do so ASAP. If this nurse is doing this with your mom, chances are that she does this all around. If this nurse is truly running things, go to your mom's doctor. It should be put in your mom's chart that she has strong reactions to information about things affecting her and that no one but her doctor or NP (or family) should be discussing her diagnosis with her. If none of this is possible, try to get your mom out of there ASAP, and send a letter describing this behavior to your state's regulating body. It may not help you but could play a part in getting this to stop for others.

If this place is large enough, and there is a Director of Nursing, Clinical Coordinator or administrator of some sort to talk with, put your complaint in writing as well as talking directly with this person. Email, if available, works wonderfully for this, as it is less formal than a letter, but is a written record of the complaint.

Then, see if you can have this nurse removed from your mom's care. In the unit my mom is in, there are always 2 LPNs and 6 to 10 aides, so there is an alternative if there is an issue. Thank goodness I haven't had trouble with the LPNs, but in a previous situation, Mom had a bad experience with a male aide, so it is in Mom's chart that her aide needs to be female. It doesn't always work out, but I, or one of my sisters, will usually catch it during our visits and make sure it is corrected.

Building a relationship with the DON or CC or administrator is really important to your mom's care. They are usually responsive. They just can't be there 24x7 and need to hear what is going on in order to correct it. Most will appreciate getting the information you provide.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Sep 19, 2011 10:28 am
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Joined: Tue Sep 06, 2011 2:28 pm
Posts: 15
Post Re: Life Expectancy
I agree her response is inappropriate! I am a nurse myself, it is wrong to label people as drama queens or anything else. They don't really know prognosis, slot depends if they have other health issues. Cause of death is infection, lung or urinary. That is why it is important to dicuss ahead of time what people's wishes are, what the family is comfortable with. When quality of life is no longer present for your loved one, the loving choice can be to not treat the infection, allow nature to takes it's course and employ comfort measures . Hope this helps!


Sun Oct 09, 2011 6:01 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Life Expectancy
Thank you all for the information and the empowering thoughts. It seems wrong to me too, but I am constantly second guessing myself. I am not thrilled with this placement at all (but my sister likes it). They are very manipulative with her and I don't know what to do. She is far too difficult to have at home, but Assisted Living does not seem to be appropriate (and she is terrified and probably not really ready for a Nursing Facility). The ALF doesn't want to do the things that need to be done for my mother to feel safe and to avoid medication problems (they legally have an hour before or after to give a medication - this is a real problem when the medication is Stalevo and my mother gets so anxious about 45 minutes before medication time - so if they bring it an hour late, then she has gut pain and anxiety and is in a total inconsolable state for most of the day). She just told me that they won't give her her medications unless she goes to the nurse's station to get them because they believe she is capable of coming down and getting them for herself. They don't seem to get the fact that sometimes she can do things for herself and sometimes she can't. I need to start looking again for another facility, but this is the fourth one in one year. I would really like her to find a place that she can settle into.

Liz


Fri Oct 14, 2011 2:49 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Life Expectancy
I am sorry that you are dealing with this.

What is it that your sister likes about the current place? If it has enough redeeming qualities do you think you could work with them to help them understand the characteristics of LBD? Some LTC places are very open to that. The ALF that hosts our local support group knew nothing about LBD when they had their first resident with it, but they quickly learned that it is different than AD. They were very open to looking at literature the family brought, and adjusting accordingly. Now we occasionally have staff from other facilities visit our support group, to learn more about this disease.

I think that Pat (MockTurtle) did some "training" of the staff where her husband is. One of our local members has done a lot of educating of the staff at her husband's NH. Of course the staff has to be receptive, but training a willing facility could be easier than finding one that already has the knowledge.

A memory care unit is often not quite appropriate, because those tend to be geared toward AD. But it is something to consider if an ALF cannot meet the needs.

Coy is not (yet) in a LTCF, so I am only sharing what I've observed, not personal experience.

Good luck to you!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Oct 14, 2011 3:21 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Life Expectancy
Liz,
In case you haven't already done so, contact your local Alzheimer's Association (alz.org) chapter. They will know of dementia care facilities.
Robin


Fri Oct 14, 2011 5:31 pm
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: Life Expectancy
Wayne, died last Sunday, Oct. 30. 2011. He was diagnosed with LBD 5 years ago and Parkinson's 10 years ago if that helps anyone. Jeanie


Sun Nov 06, 2011 8:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Life Expectancy
Jeanie,
I'm very sorry for your loss. I see you've posted in the Obituaries section as well.
Robin


Sun Nov 06, 2011 9:00 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Life Expectancy
Jeanie, my heartfelt sympathy to you and your family,
God Bless,
Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Mon Nov 07, 2011 4:59 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Life Expectancy
Jennie,
I am very sorry for your loss-may you be comforted
Sincerely,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Tue Nov 08, 2011 12:16 am
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