Top specialist and extensive testing by the Mayo Clinic diagnosed her in the past and ruled out Alzheimer’s. I know it doesn’t make any difference in her care but it bothers me that this was carelessly added to her list of diagnoses. I am certain no one tested or assessed her to come up with this. Is this a common thing in nursing homes to label all dementias carelessly or for paperwork reasons? It truly won’t change her care but my family spent years seeing specialists and seeking diagnosis and this is not correct.
Since the period of time in your mom’s life has passed during which differential diagnosis would have mattered, wouldn’t it just be more work for you to question this or attempt to have it changed?
That said, if the question were asked casually and non-defensively, you might feel better if you were given a reasonable answer.
The VERY important thing with your mom is that they still have the diagnosis of Lewy Body Dementia.
There are medications that can be given to people with other forms of dementia but they can be FATAL if given to someone with Lewy Body Dementia.
Unfortunately people seem to use Alzheimer's as they would the term Dementia. (I think many people do not realize there are many types of dementia, Alzheimer's seems to get the most "attention".)
I would make sure to review the medications that are being given and they should notify you of ANY change in medication.
https://m.activebeat.com/your-health/women/robin-williams-death-9-things-to-know-about-lewy-body-dementia/?utm_medium=cpc&utm_source=google&utm_campaign=AB_GGL_US_MOBI-SearchMarketing_TR&utm_content=g_t_303659477008&cus_widget=&utm_term=lewy%20body%20dementia&cus_teaser=kwd-35132660&utm_acid=3040947159&utm_caid=1599827680&utm_agid=62022144433&utm_os=&utm_pagetype=multi&gclid=CjwKCAiA7t3yBRADEiwA4GFlI1zRMR8YQE6QZSvW8x_fjiS6ey2mB8hlkBJcODGI56Y99zRIOa1NPRoCG7sQAvD_BwE
I was appalled at how little many the people who worked with the elderly every day seemed to know about dementia, right up the ladder to RNs as well as administrative staff. Many of the senior staff were older and still clinging to information and techniques that they had learned 30 years previously and the worst part is that they didn't appear to be open to learning new anything either, more than once I was made to feel like a hysterical amateur full of doubtful hypotheses gleaned from the internet 😬.
Earlier I posted an addy about an article I read. Lewy Body is one Dementia that they have to be careful what meds are given. Some are deadly. If the addy I posted previously doesn't work the article was...The death of Robin Williams: nine things to know about Lewy Body Dementia.
As a Nurse you probably do scare them. My daughter, as an LPN and an RN, worked in rehab/LTC facilities for 20 years. I loved when staff was trying to intimidate me and then my daughter walked in with her scrubs on. Boy did those attitudes change. My Mom had done a 180 in the hospital and they wanted to release her to rehab. I got an extra day but it was my daughter who found the antibiotic had penicillin in it that hospital records showed she was allergic to. My Dad was in rehab. Mom mentioned that he had blisters on his heel. My daughter looked at them and found dead tissue. Read the chart, he was brought in with pressure points and not given an air mattress. She went right to the DON. I really think she saved her grandparents life.
Both my parents have been pegged with Alzheimer's even though they recognize people and can communicate.
You can help. You can help their recognition that not everyone fits the cookie cutter forms. Please do so. Do it calmly and with love.
Where did you see the reference to Alzheimer's Disease? - on what bit of paper, I mean.
And whose signature is on the document? Because if you were me, that person would find you in his or her office at the earliest opportunity, having a complete sense of humour failure and demanding an explanation.
In the absence of a satisfactory explanation, it is formal complaint time. Medical records MUST be accurate and complete or they become worthless.
own PCP of several years. I took her for appointments, etc. Last year I moved her to a 6 bed Care home and continued with her PCP for medical care. When hospice
is needed (not needed now), I will continue with her own Dr. of many years. I am confused why most comments here indicate having dropped using their long time, established relationship, of their family physician. This isn't necessary in CA.
I say all of this because - in keeping her issues as accurate as I can, she has avoided being treated for an issue she absolutely does not have. So it does make a difference in her care. Imagine giving Parkinson's medicine to someone who does not have it. Or adding stroke meds to someone without stroke issues.
On a serious note ..they completely missed her having a stroke ..even though we had brought her to the hospital because we thought she was having one and it was actually supposedly a regional stroke center. They felt it was just her age and a generalized weakness ..despite a prior more mild stroke...we left her there for observation ..relatively normal except for the weakness ( reason they kept her) , and a facial droop we had noted and speech changes ( which I told them was similar to during her prior stroke) ..the next am ..my sister arrived to find her sitting up in bed with a tray in front of her..trying to eat but the food just dribbling back out again since she couldn’t swallow right and her entire left side paralyzed. The hosptial staff had failed to even notice the change!
Sorry for the vent but ..my point is ...that once you reach an old age ..somehow they think you are supposed to be confused and weak ..and fail to look past the numbers
FYI, Alzheimer's disease is the most common form of dementia. You loved one can have Parkinson's dementia and develop the other or both of the other forms of dementia - vascular (from having a stroke) and Alzheimer's disease.
At the interview, you ask the doctor to explain his additional commentary and its basis. He may - for all I know - be able to; so don't go in there being antagonistic. You're asking him to explain, you're not there to wring his neck. [Tip: when really angry with fellow medics he felt weren't doing their job properly, my ex used to clear his throat and then sit silent, ominously waiting. That seemed to work beautifully!]
If he can't explain and thereby justify his statement, he must revise and correct the history. As long as you get that, that'll do - you won't want this doctor gone because he'll have learned his lesson.
I respectfully acknowledged that it would be difficult for one person in charge of a Large facility to review each patients medical records and history, and stated that I feel it is our responsibility (Family)to pass on that information when needed.
I succinctly explained our Extensive journey of testing And diagnosis and included copies of records from the Mayo Clinic and University of Wisconsin stating her actual diagnosis and ruling out Alzheimer’s.
i pointed out that some medications for Alzheimer’s are contraindicated for a person with Lewy Body dementia and for that reason I would like the diagnosis to be correct.
within days of mailing the letter I got a call from the nurse in charge of my moms unit. She is the person who told me in a care meeting that the Dr added that diagnosis and she couldn’t change it. She was apologetic and took the blame for mistakenly choosing that diagnosis while working on her care plan.
she said the letter was “put in her lap” to address and that the diagnosis was corrected.
I am glad I pushed this issue and will continue to advocate for my mom. As I nurse, I know that the staff is aware that we are involved and watching. I hate to be “that family member” but know it is best. Thanks everyone for your replies and encouragement