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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?

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Mom needs to now be accompanied to the restroom each and every time so you can insure fecal matter is all removed from her hands and her body. The time for logic and reasoning has passed, unfortunately, and lots more care is required now, even though she argues and claims to know better. If that means you hire in home help daily, or she gets placed eventually, some things leave no choice or room to argue. She now gets to stop making all the decisions with regard to her care, and you must take over.

Best of luck
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My mother was a RN; you got to admire their fortitude;) When she was more with it: My fussy mother adapted quickly to using disposable gloves to use specifically after a bowel movement. I kept small paper bags inside a nearby covered waste can. A quick swipe with a Vaseline coated tissue BEFORE the main event and coating TP with a foaming perineal rinse AFTER.

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.
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I AM an old nurse.

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.
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Kimstark, I think you are indeed up against a brick wall so far as dealing with a strongly entrenched personality as well as Lewy body, but I hear your need to protect yourself and your mom. You could try appealing to her background as well as her need to be in control by sitting her down in front of a Youtube video on proper hand washing techniques. (Screen them - some are overly complicated and wordy.) Tell her you need HER to teach dad and caregiver how to properly wash up, that this is new info they aren't trained in. Write down key points on index cards and tape to the mirror. It might help lessen resistance for a while.
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Kimstark68 Mar 2023
What a great idea! She has been very controlling her entire life, so putting her in control might appeal to her. Thank you!
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You seem to be in a bit of denial with your moms diagnosis of Lewy Body dementia. It is one of the most aggressive of all the dementias with a life expectancy of just 5-7 years, which more than likely means that your mom no longer remembers how to wash her hands properly.
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.
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I agree that she now needs assistance to make it happen. I had to keep a nail brush by the sink and help my MIL wash her hands or they would get awful very quickly.

So hard to deal with this. One more piece in the whac-a-mole puzzle that is dementia.
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It's been awhile since I worked as a nurse, but I remember that to scrub for the operating room, special hand cleaning sponges were supplied for M.D.s and nurses. The sponges had a somewhat rough surface for scrubbing and were infused with a water soluble antiseptic. She might recognize/remember something like this and use it without urging, esp if it is the only thing present. (maybe just leave it next to the sink minus any other hand-cleaning items or perhaps just point it out to her without any suggestion for it's use).

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.
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Kimstark68, welcome to the forum. Please note with dementia, it means your Mom's brain is broken. There will be times when your Mom can no longer understand or remember directions. And there will be times when your Mom will remember things from her nursing career.

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
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I think the problem with FTD Dementia is they are more lucid than with other Dementias. And no one wants to be told what do do.

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?
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That is a tough one. Perhaps, she could help you wash your hands? If you are there anyway, say you want to get your hands nice and clean after being in the restroom. Put soap on them, hold your hands out, and ask her to help. It might not help. But you could point out as a nurse she knows best and can help you. It sounds like a guessing game and you have to just wing it. And forgive yourself if it doesn't work. Gloves are a great idea also. Maybe as a nurse it will make sense to her?
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