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 Advice - I need concise info for ALF on DLB 
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Joined: Tue Aug 30, 2011 1:42 pm
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Post Advice - I need concise info for ALF on DLB
So my mother's assisted living facility has both a new head nurse and a new director. The new head nurse, like the old one, is challenging my mother's diagnosis of DLB. She is arguing that my mother is still alive and if she really had DLB that she would be dead by now since people with DLB don't live very long. It is her belief that my mother never had Parkinson's and just got addicted to the drugs and should be taken off of them. I get so annoyed. The psych hospital in Indiana had taken her off of the Stalevo and then put her back on it. These people frustrate me, but now that she is in Michigan and we have a new neurologist who hasn't seen her but once and will see her again in August, it is hard to use the doctor's diagnosis on this as back-up since the doctor who diagnosed her is now a research doctor for Lilly and not working with patients anymore. It gets so frustrating because every time we get new doctors or every time we get new staff at the ALF (or she gets put in a new ALF), we have to "re-create" the wheel by reviewing the same meds, going over the same tests, etc.. How often do we have to re-evaluate the drugs and take her off and try all over again and give her the things that she probably shouldn't be on (the head nurse feels that she is on too many drugs). Anyway - my sister has requested that I put together some information to educate the staff with about DLB. She says it needs to be short but informative. The people who work there have been given information in the past, but they don't read the stuff we provide. I need something that explains to them why she doesn't have Parkinson's symptoms all of the time and why she is still alive (i.e. info that explains that DLB patients do not necessarily only live a few years - I have no idea why they all think that). Anyway - any suggestions on some basic informative information that I could provide nursing staff that aren't educated about DLB. The nurse seems to think that we aren't very medical or educated in medical things (sigh) and that we are mistaken in our understanding of this disease. I really am tired of this sort of nonsense - but if we want her to work with us, we are going to need to provide her with information that she feels is legit (but she knows nothing about DLB really to begin with - sooo). Any thoughts would be helpful. Thanks - Liz


Tue Jun 12, 2012 8:16 pm
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Post Re: Advice - I need concise info for ALF on DLB
Liz,
These are short enough to print off, I hope they are useful for what you need !

http://www.lbda.org/content/symptoms

http://www.lbda.org/node/8

http://www.lbda.org/category/3437/what-is-lbd.htm

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Irene Selak


Tue Jun 12, 2012 8:45 pm
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Post Re: Advice - I need concise info for ALF on DLB
Hi Liz,

I do think the LBDA materials are the best, or the Boeve paper or the McKeith paper (but those are probably over their heads).

Why or in what way are your mother's Parkinson's symptoms variable? Does she have DLB or PDD?

Robin


Tue Jun 12, 2012 9:21 pm
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Post Re: Advice - I need concise info for ALF on DLB
Liz, I can sense your level of frustration! I hope Irene's articles help. I had to do a little educating of the ALF staff where my dad was, and luckily the 2nd ALF director was very well-versed about LBD, PD, etc. and educated her staff about it when she started, his last few months there. I hope you are able to get them to listen, read, whatever so your LO is being cared for in a place with better info. and more understanding about what's going on. 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.


Tue Jun 12, 2012 9:25 pm
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Post Re: Advice - I need concise info for ALF on DLB
Liz, you get so annoyed? Annoyed?! OMG, you must be either a world class master of understatement, or the most laid back person in the hemisphere. I would be so past annoyed in your situation that I probably couldn't type coherently.

The new head nurse sounds not only ignorant of DLB (and such ignorance is a common condition and can be cured) but also lacking in common sense (which is not so easily treated). Even if it were true that people with DLB "don't live very long" on average (whatever she means by very long) that would mean some people died after a very short time indeed, and others lived much longer, wouldn't it? Or does she seriously believe that there is a strict timeline for this disease and that every one who has it expires x months and y days after diagnosis? Hooboy. You've got your work cut out for you!

I hope that the brief documents Irene has suggested are useful. Of course they can't be useful if they are not read, and I don't think I'd simply drop them off. I'd try for an appointment, and bring two copies in, and go over them with her. On the symptoms list, for example, I'd point out the ones that the original diagnosis was based on. Pointing out how they apply to Mother would be my excuse for going ove something she could read for herself.

Mother has an appointment with a specialsit in August and you are reluctant to change anything before then. But you certainly would appreciate Head Nurse's help in documenting all symptoms and behaviors that seem to point to a need for a change in drugs, so you can discuss it with the doctor at that time.

I know that you have to work with these folks as long as your mother is in their care, and it is important to maintain as respectful and cordial relationship as possible. What a task! My heart goes out to you. Let us know how this all works out.

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


Last edited by JeanneG on Wed Jun 13, 2012 3:23 pm, edited 1 time in total.



Tue Jun 12, 2012 9:38 pm
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Post Re: Advice - I need concise info for ALF on DLB
One thing I had to do a year ago at my husband's SNF was to write out an 'order' in plain English [which they put in his chart] that no new medications are to be given him unless his neurologist has approved them. This became necessary when the PCP who sees patients in the SNF had ordered him an anticholinergic med. Fortunately, the nurse mentioned it to me before it was administered. And, yes, the LBD Fact Sheet is in his chart, too, but I wonder if they ever really looked at it. :cry:

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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.


Tue Jun 12, 2012 9:45 pm
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Post Re: Advice - I need concise info for ALF on DLB
Being an advocate for our LO does not stop as long as they are alive. It is a constant job, and one that we must be hyper-vigilant about! Pat, you are so lucky that you are an RN - those of us with no medical background have even more work cut out for us in the beginning. At least some of us didn't know much about medications and didn't know at all about this disease (I don't know how much you knew before Derek's dx). Anyway, all you caregivers out there are doing a great job, and I hope you get a good night's sleep tonight. 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.


Tue Jun 12, 2012 10:02 pm
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Post Re: Advice - I need concise info for ALF on DLB
mock turtle, what gave you the authority to put that in the file? That you were his wife? POA? Would it have legal force? What would happen if they had disregarded your requirement? I am very interested. I try not to borrow trouble and Coy may never be in a care center (though it seems more likely that he will). But this is the kind of thing I dread most. So I am very interested in your solution.

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


Tue Jun 12, 2012 10:55 pm
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Post Re: Advice - I need concise info for ALF on DLB
Even though I am an RN, I knew nothing about LBD before Derek was diagnosed. I had never even heard of the disease. This forum, along with the LBDA website, was a good start for me and has been the most important source of information for us.

Jeanne, yes, POA. When I objected to the medication, the DNS suggested that I write and sign such an 'order' and they would put it into the chart. That makes it legal. Since his neurologist is the ONLY physician he sees who knows about Lewy, he is the only one I trust to prescribe or to approve prescriptions.

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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.


Tue Jun 12, 2012 11:00 pm
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Post Re: Advice - I need concise info for ALF on DLB
There's an interesting discussion on the LBDcaregivers Yahoo!Group about a SNF following the SNF's MD's prescribing orders and not notifying the spouse of any med changes, regardless of any orders that appeared in her husband's chart. Unfortunately you have to be on the look-out for everything.


Tue Jun 12, 2012 11:55 pm
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Post Re: Advice - I need concise info for ALF on DLB
My dad was prescribed meds without my knowledge or consent, which was in violation of his POA document. Despite my best efforts the only way I knew about changes in meds was my calling the ALF or seeing the head nurse and requesting weekly updates. His neuro. and CNP told me that the POA had no right to input on his meds and other things having to do with his care so they did whatever they pleased. I hope that none of you ever has to deal with this kind of situation.
So, be vigilant and keep on top of what's going on. Hopefully our situation does not happen in other parts of the US and other countries.

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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.


Wed Jun 13, 2012 12:02 am
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Post Re: Advice - I need concise info for ALF on DLB
I think I mentioned that the last time Coy was in the hospital nobody seems to have heard of ol' Lewy in the ER or on the floor, except one nurse who thought that meant Coy would be violent. Sigh. I'm not surprised when nurses or doctors don't know anything about LBD. I'm just dismayed when they think they can make changes to the diagnosis or treatment plans laid out by those who do understand the disease.

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


Wed Jun 13, 2012 12:11 am
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Post Re: Advice - I need concise info for ALF on DLB
Lynn, the document I created did not give me the ultimate authority over his medications but his neurologist. Even though it is written in his admitting care plan that I am to be notified of any changes in treatment or medication, this document just advises the other physicians he sees to consult the neuro before ordering anything new. In view of the LBDA fact sheet in his chart, they probably realize they could be liable if they do not.

_________________
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.


Wed Jun 13, 2012 12:18 am
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Post Re: Advice - I need concise info for ALF on DLB
Lynn, your experience is exactly what I dread. It seems that power over pills can be a nightmare. One of our local caregivers could absolutely not convince his wife's care center to give a pill ordered PRN. They insisted that the drug was not intended to be used the way the doctor prescribed it, the doctor was wrong to prescribe it, since it was PRN they could decide when it was needed and in their opinion that was never. This in spite of the fact it had been working very successfully for several months before she was admitted. He finally got her moved to another place, where she died in relative peace. Grrrrr .... this whole topic just terrifies me.

I would love to hear that a document such as the one Pat put in the file would be some protection. I guess it would if you had a good working relationship with the staff, as Pat has established. But, lord help you, what if you are working with a staff who "knows" your loved one's diagnosis is wrong and who are sure they know better than the specialists you have consulted. How do you prevent them from screwing up your loved one's medicines?

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


Wed Jun 13, 2012 12:21 am
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Post Re: Advice - I need concise info for ALF on DLB
Thank all of you so much. I get seriously frustrated all of the time over my mother's situation and I post here and you folks are simply WONDERFUL! In addition to a mother and an overly stressed sister, I have a husband and two boys and life is frequently overwhelming even without my mother and her various medical and emotional issues.

Robin - my mother was diagnosed with Parkinson's about 13 years ago. She has the type that involves spatial skills problems more than tremors. She wanders, leans, and runs into things on the left. She received the DLB diagnosis about a year ago, but it is clear that she was having cognition problems for at least the last three years. I am not sure how long since she has a history of mental illness and has been trying to cover up the lucid dreams, hallucinations, and cognition problems for a long time. She has been very very worried that she would somehow end up committed into a state mental hospital (I don't think those things even exist any more - but she had a grandmother who ended up in one of these facilities). There are a lot of strange things about my mother. She has never been a very rational or logical person and I have often wondered if she had some sort of brain trauma as a child or experienced some form of abuse that no one has every consciously been able to address. I would say that she is seriously "right brained" in the stereotypical way. She has NEVER been able to manage simple math or logic and she is unusually emotional (and always has been). Not to say that she isn't very bright, she was a brilliant writer and a highly verbal person. Her intelligence just seems to be highly polarized (lacking integration?). My mother also has a history of mental illness - she has been diagnosed with everything from bi-polar disorder to chronic depression. The last few stays in the psych hospital have resulted in an additional diagnosis of multiple spectrum personality disorder (which appears to be essentially borderline personality disorder - or so the caseworker explained it to me as such). My mother seems to cycle a lot. There are times of the year (month, week, day) in which my mother's Parkinson's symptoms influence her ability to walk well (the shuffle, the soft voice, the swallowing issues) or to get in or out of bed well. Because she can do these tasks sometimes (sometimes even very well) and because she is really very mean and demanding when she can't do these things (I think that she gets panicked and scared and becomes very much like a small child in her demands), she has had a hard time at Assisted Living Facilities (and made it impossible to live with my family, which we tried initially). The most evident problem she is having these days besides problems with memory and cognition are her gut problems. She gets serious pain in her abdomen which comes with a lot of bloating. We have tried hard to figure out what the pain is related to. She has been for every scan and test possible and they all appear to be normal. The bloating and the pain does seem to have a stress component and it may very well be related to the Stalevo since Stalevo has an addictive component (or her chronic anxiety). She seems to suffer a lot during the "wear off" time on the Stalevo (which is why the neurologist gave her additional carbidopa-levodopa to be taken between the Stalevo times). My understanding is that this is just one of the problems with Parkinson's medication - wear off. She also has the slow, Parkinson's related gut issue and that complicates the problem even more.

For my sister and myself, it has been very difficult to get people educated about DLB (they tend to not care all that much and they don't want to accommodate her and her disease very much - since she isn't always gracious, and this makes it worse). I was absolutely taken aback yesterday when I learned that the new head nurse was questioning my mother's diagnosis. It took us over 2 years to figure things out enough to make sense of my mother's ailments and to get a neurologist who could sort out the drug mess that my mother was in when she first moved to be closer to us. The DLB diagnosis made it all come together - to make sense. The fact that every time my mother has to deal with a new ALF or a new General Practitioner, we go through this stuff is so frustrating.

Irene - thank you so much for the sources. They will be very useful. This list is really a life line. I have learned so many helpful and interesting things here (I wish I had gone to medical school now - very interesting information on this list). Lynn, Pat, Jeanne - your conversation here really gets at a lot of what is going on too. My mother's current GP is through the ALF and gives her meds all of the time. I have tried so hard to make it clear that they MUST be approved by the neurologist, but right now we are developing a new relationship with the third neurologist that my mother has had since moving to be closer to us, so it is harder to enforce. My mother's last neurologist was wonderful, but was hired away from the medical center by Eli Lilly to do research. When my mother was in Indiana with me, I was always current in my knowledge of her medications. However, my sister is a high stress person with a high stress job and she just doesn't take the time to learn about the medications and the only ALF we could find with dementia care happened to be near my sister in Michigan and not near me.

I really want to find my mother a way out of her pain and anxiety and I need to have a facility that works with me (easier to dream about than to find so far). I appreciate the information that you have given me (and the insights). Thanks again - Liz


Wed Jun 13, 2012 6:09 am
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