My Mom has mild dementia, she was discharged 1 month ago and came home with behavior changes. She started hitting out, throwing things, and is just non cooperative. I believe she was traumatized from the time she was in the ICU, she even came home with diaper rash.
She won't open her legs so I can properly clean her. I'm lucky if I can do a quick wipe with a wash cloth, followed up with a bit Desitin on areas that I can access - which is not alot.
She was admitted again, probably with a UTI. The nurse told me she has a rash, she says "What do you do? leave her in a pool of urine all day?" She bragged that her and her aide were able to clean her, wash her, etc. I'm worn out, but still have some stamina to keep my Mom out of the NH.
Memory Care AL is not the house of horrors you may think it is. If you get worn out to the point you can't manage mom's dementia at home, look into it. My mother lived in Memory Care AL for the last 3 years of her life where she got stellar care from 'her girls' that she truly loved, and who truly treated her like a queen. When her money ran out to private pay, I was going to apply for Medicaid to get her into a SNF, but she wound up passing away right before that became necessary. I did not have the ability to care for a wheelchair bound 95 y/o woman with advanced dementia and 10 other health issues in my home, period. No shame in that, either, so you may want to rethink where you're at with all this.
I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Here is a list of Care Tips from the booklet you may find helpful when dealing with mom's care:
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
Lastly, your mom needs calming meds from her doctor if she's acting in an aggressive and anxiety ridden manner ie: hitting & throwing things. Let her doc know about this and see if .25 mgs of Ativan can be prescribed to relax her a bit, esp while she's being cleaned & changed.
Best of luck.
I've appealed to the hospital nurses and doctors, I need a home evaluation to get an objective assessment of what I'm doing right or wrong, if maybe that I'm still ok to have her at home. Anyone can say, "put her in a nursing home", but a home nurse needs to see I'm still capable of doing the care or not.
It's been 4 months and still no home visit. The doctor's charge nurse won't return my calls. I need to keep at it, might get a response in the future.
For better or for worse, dementia patients may take directions from unrelated caregivers much more cooperatively than from family.
If Mom can afford it, try bringing in a helper for just “special bathing duties”.
I run a warm shower. My liquid 3-in-1 soap and wash cloth ready and little room heater on.
I can't just say take off your clothes, I have to mention each article of clothing which he tears off in defiance. I have to duck due to his flailing arms when he removes his sweatshirt and undershirt.
Even to the last he will stand there in his socks and harshly say, "Do I have to take these off too" in a tone of voice that indicates he thinks I'm the biggest A**h*** on earth. Lovely gratitude to someone who winds up washing the poop he doesn't wipe ever from his butt. I tell him if he thinks it'll make him feel comfortable leave them on. He takes them off.
I've sung twisted songs to make him laugh. I've brought in little radios. I've agreed with him in all sincerity that bathing is a nuisance and the faster we go the quicker it's over. Sometimes I tell him showing is one of the greatest inventions ever. Fotunately I replaced a tub with a large shower with a soft polyester water resistant curtain and maneuvering is easy though a little sloppy. Two towels on the floor helps but who cares.
I pat a little shampoo on his head as he walks into the shower and tell him to shut his eyes, I take the handheld shower head, wet his hair and tell him to work the foam. Sometimes I give him a soaped up wash cloth and he washes what I tell him to wash although he no longer washes his butt. I always have to wash his feet too. He often stands there like a ridgid rebel and I have to do the whole job.
Sometimes I make silly diverting remarks during the process. Sometimes I simply give plain old (I'm worn out) to the point directions, with no emotion I tell him we're going to break our last 7 minute record, and praise him that he's almost halfway done. Throughout all this he complains, complains, complains. I wish he'd zip it for once.
Midway through, I ask him if he'd like a tuna or reuben sandwich after he gets dressed.
Before I shut off the water I hand him his electric tooth brush with paste on it and tell him that this is my favorite part because he gets to spit on the floor of the shower after he brushes. He never rinses his mouth but I have warmed water in a water pik that I spiked with a little squirt of peroxide in the tank waiting for him after he dries off and has his underwear on.
There are places, dementia day care, that for an extra fee will include bathing.
I told my husband that if he doesn't let me help him I'm hiring a gorilla or sumos to do it. Luckily he starts laughing and we're done before he knows it.
I always tell him that he sparkles after showering and he's dressed.
Sometimes no matter how difficult it gets a little humor goes along way.
Get mom tested asap for a UTI (you can get home test straps and have a lab confirm and do a culture). If mom has no UTI, proceed to get calming meds (preferably an evaluation by a geriatric psychiatrist) so that her agitation is lessened.
While you continue trying to do this the stress will cause your own health to decline and that decline may be permanent.
If you cant afford to bring someone in to bathe her a few times a week I would start looking into placing her in a facility.
(And when I say afford I am talking about your mother paying for someone to come in to bathe her not you).
But even with a bath 2 times a week it wont solve the daily peeing on herself and your being unable to dry her off and clean her from that. 2 times a week bathing will not stop urine burns etc on her skin because you can't clean her up because mom resists and fights you.
Not even mentioning trying to clean feces off her. I am sorry you have a hard decision to make.
The comments from the staff to you were inappropriate. It was when my Mom was in rehab for her hip surgery that she developed a pressure ulcer. I made it clear to the nursing home staff it was unacceptable. Two years later, it happened again when Mom was in the hospital just for a few days. It took extra effort on my part to make sure it healed when she came home both times. I said to myself she was never going to get one under my watch at home, and thankfully, she never did. But it was a daily challenge. In our case, having a portable commode in the bedroom worked wonders.
It is very hard work, and I too sometimes questioned my stamina. But when she would smile or laugh, it gave me a boost. It is crucial that you continue to be her advocate, especially when communicating with her Primary Care Doctor. Kudos to you for trying your best to take care of your Mom.
My mom did the same thing. She fought showers like a banshee, but once I got an aide in there to shower her, she was very compliant.
It's not you -- trust me.
If you mother does not want to get into the shower there are things you can buy that help clean her. In my situation we had to look at what was bothering my father..ie...was it the time of day, was he getting water in his face that he did not like, was he embarrassed that his daughter was cleaning him, etc.. These are all things that you can assess and then make a change. Sometimes we think our way is best and can't see why the person is not going along with it. Get creative. I had to get real creative with my husband being bed ridden. I wish you the best and remember to breathe and even laugh with your mother. You are a blessing to her and she you. Remember, her brain is not working like it should. Soft words/tone and showing her through your actions that she is loved and safe will hopefully make it easier.
Thank you for your caring. I’ve learned a lot from your brief responses!
This was a big one for me to get over but after months of UTIs and PTSD from the hospital I had no choice. Do it once and you are past it and your mom will be healthier and kept out of the hospital for UTIs that are preventable. Remember that you are your moms best advocate and will treat her better than anyone else.
Try using Stryker - Sage Essential Bath Cleansing Washcloths and some gloves and you will be fine. Stay strong for your mom!
Don't listen to the staff(there are some good ones not saying they are always all bad), the PTSD my mom went through when she returned from the hospital took her 3 months to get over. She’s still traumatized from the experience and cried for 24/7 for 3 months. She also walked into the hospital, but it's taken months for her to regain her mobility. I'll happily do the work, so she does not have to go through that again.
Try to get some Respite care a few hours a week if you can afford it, its a life saver for yourself.
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