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 Would like to stop writing in foreum 
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Post Would like to stop writing in foreum
Bye


Last edited by Sharon10 on Fri Feb 12, 2010 8:57 pm, edited 1 time in total.



Thu Feb 11, 2010 6:00 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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As I stated on the other thread, I do agree with you. If a facility advertises itself as a 'dementia care' unit, the personnel should be well-educated in at least the major types of dementia. Again, most concentrate on Alzheimer's Disease and have never even heard of LBD. The medical and behavioral differences are significant enough to warrant at least a continuing education seminar. There should also be written protocols for each type of dementia which should be implemented into the care plan for each resident. As an RN who has worked in med-surg, I can say for sure that a care plan for a third-degree burn patient would not be the same as one for a hip fracture.


Thu Feb 11, 2010 6:22 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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There are thousands of disorders out there. I do not expect primary care physicians, ALFs, and SNFs to know something about each of those disorders. I am not shocked when an aide, RN, or MD has never heard of a disorder. I am not insulted by their lack of knowledge.

I think the most important criteria is finding a PCP or care facility interested in gaining knowledge, particularly as it relates to a patient or resident.

And who better to do the educating than those of us affected by these disorders? We know our loved ones' symptoms and needs the best.

Education should be patient/resident-focused, not disorder-focused. I don't get too hung up in diagnoses as I don't find these to be helpful frames of reference. Far more important are symptoms and general cautions as they pertain to the specific individual.

Dementia is certainly an important symptom. But one person with an LBD diagnosis can behave very differently from someone else with an LBD diagnosis. This is why I think the education has to be patient-specific.


Last edited by robin on Fri Feb 12, 2010 11:20 pm, edited 1 time in total.



Thu Feb 11, 2010 6:57 pm
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Post Good Luck and God Bless
Hi Mockturtle,


Take Care of yourself!


Last edited by Sharon10 on Fri Feb 12, 2010 8:59 pm, edited 1 time in total.



Thu Feb 11, 2010 7:05 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
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Ok - Maybe I'm dense, but if LBD patients should NOT receive some of the meds that Alz. patients receive because they may get worse, then why in the world is a diagnosis not important? I am sure I have seen in many places on this forum where people were misdiagnosed, the patient got some med they shouldn't have, they got a lot worse, and some never really recovered from the effects of the wrong med. I really don't think I imagined these scenarios, did I?
So, if that has happened, common sense tells me a diagnosis ( or even a best guess) might be critically important for some patients.
I tried educating the people at the rehab/nursing home where my dad was last summer. I was convinced that his poor mobility and ataxia more to do with brain problems than just "his muscles didn't work any more." I have said this elsewhere on the forum - trying to educate these folks and asking intelligent qustions at rehab and when he was in the hospital resulted in my being treated like I was some wise-ass pain in the butt who didn't have a clue what I was talking about. There were several times that despite my best efforts, I left there in tears, not just from my dad's poor health, but from my exhaustion and frustration trying to deal with health pro. who acted like they didn't care and I am stupid.


Thu Feb 11, 2010 7:18 pm
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Lynn,
Good Luck nd take care of your self?


Last edited by Sharon10 on Fri Feb 12, 2010 9:01 pm, edited 1 time in total.



Thu Feb 11, 2010 7:53 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I'm not sure one can say that it's safe to give an AD patient a medication because they have AD but if they have LBD then it's not safe.

The golden rules seem to be:
* be cautious giving any medication to anyone
* be especially cautious if the person is elderly
* be especially cautious if the person has dementia
* if you are giving a medication to someone, start low with a low dose, increase the dose slowly, and closely observe the person


Thu Feb 11, 2010 7:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Sharon, the same kinds of things happened to my husband in a SNF. In fact, his care was far worse there than at either of the ALFs he was in.


Thu Feb 11, 2010 9:09 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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The ALF where my dad is seems to have much better medical care than the "state of the art" rehab center/NH where he was for 3 weeks. They call his CNP to come in if something looks amiss, they call me if one of his drs. puts him on a new med, the nurses actually know what LBD is and say he appears to have that, and they treat him accordingly. Despite the excellent PT my dad had at the NH last summer, I'd never have him go back to that one if he needed intensive PT again. I was so unimpressed with the head nurse and doctor who treated him like a pile of body parts, none of which were connected to the other parts. It was really awful and he just HATED it there. I didn't blame him - I almost kidnapped him out of there one day I got so mad about his care, but I couldn't take care of him at the level he needed and his ALF didn't have an open room at that point. It killed me to leave him there.


Thu Feb 11, 2010 11:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Sharon - just curious why you started this by saying you wanted to stop writing in the forum? Everything ok? Lynn


Fri Feb 12, 2010 10:12 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Sharon, I'm not sure what's going on, but you can rest assured we will be here for you! Please do check in at least occasionally to let us know you are OK. God bless and keep you!! --Pat


Fri Feb 12, 2010 10:16 pm
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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my husband broke his hip in late December and was transferred to the nursing home for rehab on the hip,but due to the Lewy Body was unable to follow directions, and has not regained the ability to walk. He will probably spend the rest of his life in the nursing home, and except for the LBD he is very healthy.

I have been bringing in information from this site to the therapy department, as well as the nursing staff in the SNF, last week I brought in Dr. Boeve's Continuum, and was stopped in the parking lot by one of the nurses and thanked for bringing it in. She said "she didn't know anything about LBD", and I said that "many in the medical profession did not", but her answer was "they aren't taking care of your husband, and we are, and she was glad to get the information"

I am glad he is in a SNF where the staff is willing to learn, and willing to except the information I can give them. It does help.

Mary 73


Sat Apr 03, 2010 10:52 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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Mary,
You've selected an excellent care facility for your husband, and you are doing a great job managing them.
Robin


Sat Apr 03, 2010 1:18 pm
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