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.
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.
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.
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 😬.
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.
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.
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
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