My Mom, who was a nurse practitioner for 45 years, was diagnosed with Lewy Body Dementia 3 years ago. It has been a wild roller coaster. It started with what we describe as her falling off a cliff, with her needing almost total care - she seemed to need assistance with everything from dressing to toileting, often calling for my Dad to come help her. She ended up in a rehab center after a fall, where the physical and occupational therapists informed us that she is capable of doing everything except bathing herself. It was quite a battle after she got home to have her do things for herself - she likes being waited on. One of our biggest struggles with her is anything that has to do with health or medicine. Her response is always, "I am a nurse. I know that I'm right." Often there are ways we can get around the problems. Ex: Her doctor switched her long-term antibiotic for kidney disease related UTIs from Cipro to trimethoprim. She insisted trimethoprim isn't an antibiotic. Even after showing it to her on Google and having the pharmacist call her, she said "I am a nurse, and I know." Solution: we put the new pills in the old bottle.
The issue we've been having for the past several months is hand washing. She does not properly wash her hands after using the restroom, even if she has gotten fecal matter on her fingers and under her nails. Her caregiver and I have both been in the restroom with her many times and reminded her to wash her hands. She usually just rinses them with water. When we remind her to use soap, she just runs her fingertips across the bar of soap then lightly rubs her fingertips together and rinses them off. When I have tried to talk to her about it, she becomes very defensive and even angry, and says, "I DO use soap! I'm a nurse! I know how to wash my hands!" I've tried telling her, "You're right Mom, you're a nurse, so you know the importance of good hand washing, and the germs that can make you sick..." I might as well be saying "Blah, blah, blah." She has always had a liquid soap dispenser in the restroom, but refuses to use it. I have lupus and RA, so I know that sometimes it hurts to push the pump down, so I bought her an automatic dispenser and set it up for her. Her caregiver called me later that day and told me that my Mom had moved the dispenser from her bathroom to my Dad's bathroom, stating that she didn't like it. When her caregiver asked her what she didn't like about it, Mom's response was, "I have MY way of washing my hands, and it's right." Now it just seems like she's digging her heels in and being stubborn - in her mind, she's standing her ground. This isn't the only battle between her and I - it's just one that is important because of the health ramifications. She fights against any ideas/opinions/requests that are from me. If the same issue is brought up by her caregiver or doctor, it's golden. The problem is, they aren't always there, and sometimes she forgets that they addressed it with her. My main concern is for her health - I know all too well what can happen from poor hand hygiene - my Dad got hepatitis from a food handler in the Army and was really sick; I got MRSA from a doctor not washing his hands and touching an incision - I almost lost my arm. I am immune compromised and very susceptible to illness; I am afraid of getting sick and not being able to care for her. Sorry such a long description. Any ideas on how we can get her to properly wash her hands?
You could check a surgical supply store or search out a hospital worker who knows about the product and could help find it.
Might not work, but my sense is that she's not open to suggestions from others.
Show her. Take the lead.
Say to her: OH YES. I know you know. That's wonderful.
It sounds like you are (trying /) talking logic and this often or rarely works.
Try to see the situation from her point of view and what would you (want) do?
How would you want a person / support person / to interact with you.
And, I understand her reluctance / frustration.
And yours. This is certainly not easy to navigate / figure out.
It is trial and error.
I understand her ... I now refer to myself ... in some circles as
"I-know-that-already-Gena" (of course, I can humble myself to change.
She likely needs a lot of gentle sensitive re-focusing and patience).
Gena / Touch Matters
Tune: Where is Thumbkin?
Top and bottom, top and bottom,
In between, in between.
Scrub them all together,
Scrub them all together,
Now they’re clean,
Squeaky clean!
This is how my daughter taught her boys how to wash their hands.
And while this worked with your daughter's boys, I doubt it would work for a mature woman with lewd body dementia.
* Certainly, I could be wrong here. Anything that works is good.
* Resistance - I'd recommend this person contact Teepa Snow, who is one of the country's leading experts on dementia.' She has lots of webinars and You Tube videos of how she interacts with a person inflicted with dementia. She never belittles them or treats them like a toddler.
* Personally, I have found that listening and focusing on the FEELINGs of the resistance helps.
* And, perhaps put gloves on this woman before she goes into the bathroom. She also shouldn't be wiping herself, if she is.
* Expecting resistance is often 50% or more of the issue. Sounds like this writer expects it already - knows from experience what happens.
This link could be very helpful to many:
https://www.lewybody.org/wp-content/uploads/2019/11/A-guide-to-Lewy-body-dementia-2019-edition-final.pdf
I know. These are not easy situations to deal with.
Gena / Touch Matters
I would use soap impregnated disposable face cloths to wash her hands and nails. They have extra soapy suds and the fiber is fine enough to reach into the cuticle crevices. Keeping the nails trimmed is crucial. Some nicely scented hand lotion makes the experience more pleasurable and hopefully encourages the ritual of “freshening up” after toileting
Don’t stress it as a cleanup, pitch it like a spa treatment.
So hard to deal with this. One more piece in the whac-a-mole puzzle that is dementia.
So if you're wanting it done right, you're going to have to do it yourself or hire someone to go with her every time she uses the restroom.
Like already said your moms brain is now broken and it will never get any better, only worse, so it doesn't really matter what the physical and occupational therapists said as that is no longer the case.
She no longer can remember things that she once did even as a nurse.
Perhaps you need to better educate yourself on the disease of Lewy Body dementia, so you can be more prepared for what is yet to come.
Your mom and you both have a hard road ahead and I'm sure you want her final years to be the very best they possibly can be, so take a deep breath, and try and enjoy whatever time you may have left with her.
Would that I DID have an answer to the brain that has descended into Lewy's. My brother had a "probable early Lewy's dementia" diagnosis. While he died of sepsis before the worst of it could come to him (to be frank, something he WANTED and something I am glad he got) it was a trial, and there is absolutely NO answer to the adamant certainty they feel in their own minds. He was aware of his diagnosis, and thankful he knew "why my brain acts this way"..................but the brain? It just kept on acting that way.
That will be the case for your mom.
Oliver Sacks used to say that they have fully functioning brains, they just aren't like OUR brains. But that puts a kind spin on the fact that they do NOT have fully functioning brains. Their white matter and grey matter no longer communicate as the "normal" brain does.
Your mom no longer has reasoning capacity. She knows she was an RN, but the skills are gone. She has the puzzle pieces, but can no longer put them together.
So, short answer, is "no". There will never again be a way to let mom know and retain what YOU know about sepsis or anything else. Nor to convince her that she DOESN'T know.
As Lea says, handwashing is now something that others must assist her with.
I am so sorry.
I had to clean my Mom up. Worst job IMO. I had a nice nail brush on the sink. I am sure Nurses use nail brushes. Also, they wear gloves, maybe you can ask Mom to wear one when toileting?
Best of luck
Learn everything you can about Lewy-body dementia, it will help you understand when other things start to happen.
https://www.agingcare.com/topics/12/lewy-body-dementia