Mom is pretty far into dementia. She and Dad now live with us so we can provide assisted living services, like meals, cleaning, bill paying and transportation. Mom has lost all language ability, only speaks gibberish and doesn't understand anything said to her. However, due to good genetics and a lifetime devotion to her health, she'll probably live another 10 years.
That is, if she doesn't kill herself first with poor hygiene. She lives like a toddler. She hasn't brushed her teeth in several years, won't allow anyone else to brush them and refuses to sit in a dentist's chair. She won't bathe by choice, although I give her a shower (in a shower chair while she holds the water sprayer) once a week while she protests loudly. She protests and fights me just as much if I try a sponge bath, so I consider a shower more effective and less trouble.
She won't wash her hands for any reason but pulls away and runs when I try to wipe them with wet-wipes. She won't allow anyone to cut her 1/2" long nails or toenails, either. I've noticed that she also has feces under her nails because she now wipes herself with only one square of toilet paper and then wipes her hands on a bath towel (which I replace daily). She also eats most meals with her hands.
I'm sorry this is so graphic. It's revolting and frustrating for my dad and husband and me, but we don't know what else to do. We hired caregivers from Home Instead service for a year, but she would have nothing to do with them and they were not able to get her to do anything any better than we can. She doesn't wander, just stays in her bedroom about 22 hrs/day by choice. She seems safe in most ways, but are we too close to the situation to see clearly what she needs?
A different question: how do you know when someone who can't communicate is in pain? She often moans for various reasons, but stops whenever distracted by something she wants to do and then seems fine.
10 Answers
Helpful Newest
First Oldest
First
My mom stopped talking too. It's part of the dementia, disease, ALZ. It is so sad. These issues..
Do not try to correct her, or shame her. I think that is one of the reason my mom stopped talking.. I corrected her one day... That was that.... No more talking..
It is so hard. and the medications they give, didn't really help her. The last time I took my aunt to ER, the doctor said this is her new base.. Every time she comes in, a little more brain power will be lost.... It is very hard to she your loved ones go down the path of dementia, ALZ.... I have it on both sides mom and dad's... so do your best. Try to keep her hands clean..
You don't have to file all the finger nails in one shot... Just do the index finger, one time, and get another one done a few hours later or next day..
Play her music she likes, do not correct her, and know you did your best..
Daily tylenol should help with the pain. Palliative nurse prescribed that with my aunt... she is from australia, and the daily dose she said was the norm in australia, just to keep the pain in check. She said it is okay and prescribed it.. They may not say they are in pain but if she whinces, then she is in pain most likely.
We never shamed Mom about her speaking difficulties. She has FTD (frontotemporal dementia)--not Alzheimer's--so she's been losing her ability to talk gradually over the last 8-10 years and we were quite used to it. Since she can't sing or talk, she makes noises instead. Sometimes she sounds like one of the 3 Stooges: "boopboopboop" in a high-pitched voice for several minutes. Like I said, she's pretty much like a toddler now. Life is very basic and confusing for her since she can't understand if we try to explain things.
Your ER experience sounds very strange. I haven't heard of a doctor advocating for anyone not going to the dentist. I will ask my mom's doctor what he/she thinks (there's a new one I haven't met). I don't know what "popping" is or why going to the dentist cause your mom to have a seizure.
I will try your suggestion to try to file her nails, but if you have to file 1/2 inch long (over 1 cm) nails, it takes a long time for just one and she'll never let me do that. Imagine trying to file the nails of a strong-willed 2 year old! It's unpleasant for her and she wouldn't sit still for it.
ADVERTISEMENT
I started keeping a daily log that included all of the problems, falls, failure to eat, bathe, hygiene, leaving food on the stove for 24 hrs or days and trying to eat it, taking a weeks medications in 2 or 3 days. She lived alone and I was there several times a week to clean up, pick her up from falls, empty ruined food, try to bathe her, etc. I printed the info out and when I signed her in at her appts, I handed it to the nurse in an envelope with the title "please give to doctor Z&^%** before she sees mom". It worked and was put into her file.
Now, I am having to do this with my husband who has been diagnosed with dementia and onset alzheimers.
Good luck to you.
Now for hygiene. Part of your difficulty is that your mom doesn't understand what you are trying to do when it comes to hygiene. I am not saying that you are not telling her patiently; the message is not being interpreted correctly by her brain. I would suggest trying a bidet attachment to your potty. With a push of a button, it will wash her bottom with warm water. Make washing up part of her usual routine. Try warm bubbly water for her to "play with" before meals will help clean and soften the crud under her nails so you can clean under them while you dry her hands. Warm, relaxing bubble bath each evening to help with cleaning her body. As for dental care: lots of water, maybe get a waterpik to clean her teeth rather than a tooth brush, and follow-up with a diluted Lysterine gargle (if she will cooperate with this). Nail care is often difficult since your mom may not have the patience required. Try doing a little nail care while she is soundly napping.
Please talk to her doctor about prescribing a mild antianxiety medication. When you need to take mom for a dental or medical appointment, give her the medication beforehand. The hope is that she will relax and allow medical and dental health care providers to do the work she needs.
Unfortunately, Mom developed a very strong aversion to touching or being touched by water a couple of years ago. Someone told me that's common in dementia. This is why showers, bubble baths and hand washing cause her to shriek and run. I'm sure she wouldn't cooperate with using a bidet and I can't catch her every time she uses the toilet since I still work.
Your advice about getting the anti-anxiety medication is something I never thought of and will try--thank you! That may solve a myriad of problems.
Also, I like your suggestion about aromatherapy and I will see if I can make the shower area warmer. While she hates water, she will sometimes sneak a shower or take a bath when I'm not around, merely to show me that she "did it." But she only gets wet and gets out, never uses soap or shampoo to get anything clean, so that's why I have to do it with her. I will keep trying to do her nails in the bath, but with both of us wet and slippery, that has been pretty difficult when she kicks and pulls away. We have flushable wipes next to the toilet, which she used until a couple years ago, but she won't use them now. I work (currently from home), so I can't catch her most of the daytime when she goes to the bathroom.
I wonder if she needs to be in a memory care facility where strangers could get her to do the things she won't do for me or the (timid and undertrained) caregivers in our home.
I would LOVE to give Mom a mani/pedi and use a warm spa--she just seems to hate water in any form and has refused to cooperate with anything that involves touching it.
I have not yet been to her doctor, but I can see it's high time I start going to the appointments, since my dad is also showing signs of cognitive decline and doesn't notice or report all the problems I see with Mom. I may need to get her to a geriatric specialist who knows about all these dementia behaviors.
She will also tutor you on the hand-under-hand technique, as a guiding and assisting technique that provides you with an amazing connection. It promotes a physical touch connection that is friendly, comforting, and successful, without being intrusive or overbearing. It fosters trust, which then allows your mother to let you help her (a bit more easily).
Google Teepa Snow & watch a bunch of her videos for lots of useful information that's presented in such a way as to make it entertaining AND tutorial. Teepa is an extraordinary human being.
Familiarize yourself with the stages of dementia as well so you can recognize that your mother is in the advanced stages of the disease and unlikely to live another 10 years. You can ask her doctor for a hospice evaluation sometime in the near future, as hospice can be VERY helpful to both of you in provide care to her during the difficult times she's going through. Dementia is recognized as a 'terminal illness' and qualifies for hospice care with Medicare. Click the link below for a chart of the 7 stages of dementia & what to expect:
https://www.dementiacarecentral.com/aboutdementia/facts/stages/
When a dementia patient is non verbal, you'll need to decipher her sounds/grunts/moans for signals that she is in pain, since she's unlikely to be able to express such pain. Here are some cues your mom may show you to signal that she is feeling pain:
Facial grimacing or a frown.
Writhing or constant shifting in bed.
Moaning, groaning, or whimpering.
Restlessness and agitation.
Appearing uneasy and tense, perhaps drawing their legs up or kicking.
Guarding the area of pain or withdrawing from touch to that area.
If she is easily distracted after moaning, chances are, she is NOT in pain......so that's a good thing, right? :) Just keep an eye on her and pay attention to the various signals she's putting forth.
Wishing you the best of luck with this dreadful disease; I know how awful it is. My mother is 93 with moderate dementia & living in a Memory Care Assisted Living home. Every day with her is different too..........some days she seems perfectly lucid, while other days she hasn't a clue WHAT is going on! I never know what to expect when I check in with her every day :(
I had previously read all about the stages of dementia several years ago, but it seems to me that not all dementia progresses in the same way. My paternal grandmother had Alzheimer Disease and lost her motor skills and died without losing her verbal abilities. My mother's mother was never diagnosed because of her religious beliefs, but became nonverbal and then lived in a mostly vegetative state for at least 5 more years with a feeding tube.
My mom has been nonverbal for about a year and a half, yet she still accurately solves Sudoku puzzles in paperback books and plays hymns on her electric piano daily. She's quite capable of toileting (albeit it messily) and dressing herself, makes her own lunch, sets the dinner table for four and empties the dishwasher (when I allow her after I've managed to wipe down her hands). She is only 81 (compared to her mother living to age 97) and is not showing any signs of losing motor skills. So that's why I feel it's possible she may last quite a long time in this state. My questions about how to keep her clean are also partly for the olfactory benefit of the 3 who live with her.
I wonder if something for anxiety on shower and mani/pedi days wouldn't make things go a little more smoothly.
As for pain - I operated under the assumption that my mom was always experiencing some level of pain given that her knee and her spine were worn out plus she had been plagued with headaches most of her life - did your mom take anything for it before?
Mom has been pretty much "healthy as a horse" all her life, other than needing both arthritic hips replaced about 20 years ago. Never had back or knee trouble before and has never liked pain pills, due to her childhood religious background. I think lealonnie1 gave me some ideas for what to watch for and I realized that not eating could be a strong indicator.
Have you spoken to her doctors about any of this? Perhaps a liquid oral sedative could be prescribed So that you could trim her nails, brush her teeth etc? If her teeth are in disrepair maybe she needs to go under anesthesia to have them repaired?