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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.

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My Dad was very reluctant to let me or Mom bathe/clean him. Despite advanced Alzheimers he was aware his daughter was washing him, and he didn't like it. When we hired an aide he was an obedient patient that cooperated fully with her! (We introduced the aide as "a new friend" instead of an aide, and he loved that!)
Also keeping a towel draped over strategic areas during the process helps maintain a bit of dignity.
Dad loved to sing, though he couldn't carry a tune to save his life! The part of the brain used to form sentences may not have worked anymore, but somehow song lyrics were still in there! A raucous and rousing "12 Days of Christmas" got us through many an unpleasant task, with lots of laughter.
None of this is easy, and what is helpful one day may not work at all the next. I wish you the strength to carry on to your best ability, and the insight to know when it's time to move your Mother to a facility.
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NeedHelpWithMom Jan 2023
Love the singing part of your post! So glad that you were able to find comic relief in a difficult situation.
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Maybe she is embarrassed. Cover her so she feels like you can't see her privates. Find ways to trick her. Stand her up and get her from behind just don't wipe backwards. Get a bidette.
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NeedHelpWithMom Jan 2023
So true about the elderly being modest. My mom was incredibly modest.
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HI Anne, So two things that I have found to be very helpful are: I had a bidet installed in the raised ADA toilet. Now it cost about 540 dollars but it is worth every penny and then some. The bidet will power wash her bottom or medium wash or mild wash. It also has a dryer and it has a pulse setting and the seat stays warm and it is absolutely essential to our keeping Mom clean and dry. It is called a BidetMate.

Secondly, I bought a test kit that I can just dip into her urine to see if she has either a UTI or blood in the urine or too much sugar or 7 other tests that it offers based on the color on the strip after 2 minutes.....These kits are not very expensive either. But there are other things to invest in to keep Mom clean, Baby wipes, Diaper rash cream, Dry Shampoo for her hair,etc. etc. I always have the bathroom super warm and I wait till she is sitting on the toilet and is getting washed up to say that it is time for her shower. She will say no but I just tell her that her doctor has an order in for her to get a shower every other day and today is the day. Doctors orders! I put skin creams or lotions on her arms, legs, back and on her face and neck and hips and buttocks and I tell her that her doctor told me that we need to avoid dry skin because it will get itchy and cause her skin to bleed. I always blame the doctor and my Mom listens because it is not me telling her to take a shower, it is the Doctor! I am just following his orders.

God bless you for trying to be there for your Mom. I am into year 7 with mine and she is at the stage where she does not want to eat and is refusing even her favorite foods.
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She might be more embarrassed around you than strangers since you are her daughter. You might have to just tell her it’s either you help her get properly clean or go to a nursing home. I had to help my dad with all that stuff as he not only had dementia but was very crippled and he couldn’t wipe well. When you are old and disabled, it’s time to accept the help
you must have and not feel ashamed.
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NeedHelpWithMom Jan 2023
This is so true. Some elderly people have a hard time accepting that they must rely others for help.

My mom was embarrassed by not being able to do things that she could once do.

Parkinson’s disease made life difficult for her. She finally relented and allowed me to help. She did even better though when an aide helped.
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Ann1963: Perhaps your mother suffers from a greater degree of dementia and could require managed care facility living. Prayers sent.
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Very likely her body was still under the influence of meds and the UTI. UTI definitely causes changes in personality!!

Watch the nurses as they clean her up. Stand back and let them do it without your help. Maybe you will see an approach that won't cause combativeness...or maybe you'll see she doesn't really want them to do it either. "Her and her aide" managing it might be a lot different than you doing it alone - sometimes they just do things quickly (and both working at other places) in a way they just work around mom's actions.
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STOP THE UTIs! Have her placed on daily dose of 50mg Microbid (Generic name is Nitroflurotuan). My wife has NO HAD recurring frequent UTIs! They are gone!! If you don't have one, purchase and install a BIDET on her toilet. The one from CLEARREAR works best as it allows for cleaning front and back. It is easy to install and adjust to hit the right spot. With a few practice runs you can easily demonstrate and get it adjusted. Adjusted correctly reduces the cleaning to a single wipe. I would definitely report the nurse. I would have come unglued had she said it to me and guarantee she wouldn't ever say it again, PERIOD! Also agree with others, a little levity during the process makes it more tolerable for both of you! Wish you the very best!
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I also put in a bidet; my husband knows he can't get off the toilet without me "cleaning" him. He was reluctant in the beginning and put up a good fight, but I held firm and now he seems to accept this as part of his toileting routine. Nothing about caregiving is "easy".......
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I call it "company manners." Your mom acts up with you because you're safe and familiar, just like a toddler pushes the boundaries with a parent while knowing they'll still be loved.

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.
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NeedHelpWithMom Jan 2023
Company manners is a good description. My mom did the same thing. She always did better with someone else showering her.
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Letting go and learning how to advocate rather than caretake.

When my mother could no longer care for herself, I realized that I needed to turn her over to the professionals and spend my time and effort advocating for her best care and learning how to ask the right questions so that they and I knew what was going on. Having a forum, such as this one, would have made a world of difference because I could have used it as a "Life care class."

Hope you will use your "stamina" to meet with a Geriatric Psychiatrist and numerous nursing homes near you, where you can be her guardian angel, rather than her caretaker.
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My husband gives me a difficult time. He was a gentle man but goes from 0 to 60 during shower time.
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.
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Donttestme Jan 2023
Great advice for a not great situation!

Sometimes no matter how difficult it gets a little humor goes along way.
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With my dear husband it was always first thing in the morning. I used Scrubzz disposable wash clothes and a pan of warm water.. I also had regular washcloths at hand. The warm water was soothing along with kind words. I usually began with the face, hands, feet and kept a blanket or towel close so he wouldn't get chilled. At the end a hospice aid would come by and help with changing sheet protectors etc. As at that point he was bed bound and was afraid when rolled over, I could hold and comfort him while the the aid would handle the more difficult business. The calm voice, maybe music and a bit of a massage helped and seemed enjoyable.
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Good morning, first I am so sorry that you are dealing with this happening to your mother. I know it is very hard to see the changes and try to figure out what works and what doesn't. My father had Alzheimers and in his late stages he began to strike out or get very angry. He was never an aggressive man, so we knew it was the decline in his disease. My mother took care of him but I would go and spend 2 nights/days a week to give my mother a break. We found that soothing words helped my father. He was a struggle to bathe unless we did it first thing in the morning right after he woke up. During the bathing we would tell him how much we loved him over and over and make it a pleasant experience. He never struggled when we did it this way. When I say we, I mean one of us. It did not take two people because he was very mobile. My father did sleep a lot during the day. However, if you mother is lethargic, I would test her urine. It is very easy if you buy the UTI test from Walmart. I do this for my bedridden husband to make sure he is not getting a UTI. If, the results show bacteria, then you will have to get a real Urine sample so you can obtain antibiotics.
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.
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Smithbarbl Jan 2023
I think that you are an exceptional daughter and wife. Your kind words and the way that you have handled your Mom and now your husband are a testament to this fact.
Thank you for your caring. I’ve learned a lot from your brief responses!
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For starters, I would file a formal complaint against that nurse for her extremely offensive, inappropriate, and totally unprofessional behavior towards you.
If your mother came home with a diaper rash, then the "professionals" weren't all that successful cleaning her either.
I was an in-home caregiver for almost 25 years and had many eldelry clients like your mother who simply refused to be cleaned up. Many who would be left sitting in a sopping and soiled pull-up because their family couldn't get them changed.
What it usually comes down to is having to wear them down. When she hits grab her hands and tell her directly in her face that she will not hit you. Let her throw the tantrum. She's still getting cleaned up regardless of her behavior.
Do you have homecare coming in? You may need the assist of a second person to get her cleaned up. Will her doctor prescribe medication to calm her down? A little liquid lorazepam will work quickly and changing her will be easier.
There have been times when I've had to put a client's hand in their diaper then in their face because they wouldn't be cleaned up and changed. There's really no easy way.
When her UTI has been cleared up it will really become about you wearing her down. No matter what her behavior and tantrum is, keep repeating that she's getting changed. Nothing happens until she gets changed. No meals, no tv, no nothing until she gets changed.
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MJ1929 Jan 2023
Oh, please. Filing a complaint is just going to be a pointless pi**ing match (no pun intended) between OP and the nurse for absolutely no purpose.
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Keep your head up and stay strong form your mom, you are doing a great job. I'm 100% in your situation and man all of it so hard., hardest thing I’ve done on my life and I’m 6 years into it myself. I’m fried and get it but it’s my mom and I’d move a mountain for her.

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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I feel for what you are experiencing. As a son taking care of his Mom, it was uncomfortable at first to accept I needed to take over the role of helping to clean up after she went to the bathroom. I know it was tough at first to have her son be involved, but I had to make sure she was clean at all times. My situation was different, as Mom very rarely complained when I wiped her behind and put Calmoseptine on to prevent pressure ulcers. This happened three time a a day, and more if needed (Clean pull-ups everytime). Most of the time I would give her wipes or a warm cloth to clean her front, but sometimes I helped. The process worked, and many times I asked her, "Do you mind that I do this?" Her response was "No."

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.
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this is difficult and you deserve accolades for hanging in. I had to remove myself from this type of caregiving with my father. I found a care company who offers bathing service- 1 hour a day. I currently have them visit 2x per week and I supplement where/when needed. My dad is still capable of wiping himself with wipes in between showers. I have to prompt him.

the 2 hours I get back are dedicated to being with my husband. It matters significantly in my and our sanity.
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So sorry to hear about this, Ann1963. It's so, so difficult and I couldn't have done this on my own. When my mum was still at home with us, I'd have to push her to shower each week or she'd never have washed and changed at all. I'd hand her the sponge and say, 'Don't forget between the legs.' But it sounds like your Mon has gone beyond this stage. When mine went into a care home for her last few months, she was noted as being 'resistant to personal care' and it would take two, TWO professionals to cope with her personal hygiene. It's awful having to deal with this on our own.

Have you tried handing her the flannel/ wet wipe or whatever, and getting her to clean herself down there? I learned to act calm and smiley about it, like it's no big deal (which it really isn't). Maybe distract her with the promise of a treat after, ice cream or coffee or whatever she enjoys. I'm just trying to help, tho I just don't know what will work with your own Mom.

Hope you get help soon. Sending hugs. xxx
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I don’t blame you for getting defensive. In commenting to a post we need to keep our suppositions and judgment to ourselves and stick to offering advice and support. If a poster says something happened, don’t cast doubt, only the poster was there, we weren’t.
Focusing only on the advice, there’s really great advice in two of the posts that I personally will use in my situation with my mom. I did not know about The Council on Aging, Jennifer Ghent-Fuller, Ativan, and the Teepa Snow videos.
You clearly love your mom and want to figure out how to care for her which is the same for me. You and I need to hang in there and keep learning!
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This is a rough situation, you have to have a caregiver to hold hands so you can get the job done, I'm dealing with a somewhat violent man (FIL) with Alzheimer's right now and he's strong, he screams and hits if i wipe #2 off, but it has to be done, hes in stage 7. Also he gets UTI all the time because he has a bladder stone and it has to be managed with Antibiotics. I could not deal with this without home care help and my husband. Good luck and thank you for all you do.
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We put in a bidet. It has a warm seat and warm water. When she went to memory care, we put one in her bathroom. They had an outlet in the bathroom. We do have 7 day a week private caregivers who work 4 hours a day. Mom is an introvert who says no a lot. My private carers make sure she has 2 meals, drinks water or Propel, walks, showers, lotions, companionship. I also get daily texts and pics from the caregivers. We put hand rails on the toilet too. It has been a win win. We use the tushie and front washes every time since she is not always aware of what she has done. We got bidet genie.
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Her dementia is probably worse than “mild.” She’s beyond being taken care of by you. I hope you can find a place where professionals can deal with her. Good luck.
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Why put yourself through this stress just to delay the inevitable reality that she will eventually have to be put in a facility?

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.
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The nurse may have rudely and inappropriately actually given you good advice.

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”.
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D@mn that nurse for making you doubt yourself!!!!

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.
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I’m so sorry that you are struggling with these issues. It’s a challenging, and frustrating situation to be in.

Most nurses are incredible nurturers and can be a patient’s best friend. Sadly, some are not the best at communicating with their patients or they could be burned out.

All professions seem to have people who are kind and caring and some people that aren’t very compassionate. I am sorry that you ran into a nurse who lacked compassion. Sometimes they don’t behave in a professional manner which is truly sad for the patient and family.

I have left doctors who didn’t respect me as their patient and found caring ones. I am not going to be loyal to anyone who disrespects me.

What else other than dementia does your mom struggle with? Could her doctor order home health? They provide an aide that could bathe her.

My mom had Parkinson’s disease and dementia. It was difficult for her to be comfortable with me bathing her. She missed her independence and who could blame her?

People in their generation are extremely modest so it’s embarrassing for them too.

I found that mom did better when others helped her instead of me. We had home health come in for her to do exercises specifically for her Parkinson’s disease. Home health also provided an aide who bathed her and mom was pleasant with her.

We also had Council on Aging help out with mom. They will help with numerous things, bathing, cleaning their room, preparing a light meal. help put a puzzle together or simply sharing a cup of tea with their clients. My mom received loving care from these aides.

The other issue that mom had was a terrible fear of falling, which is certainly understandable because Parkinson’s patients have issues with balance.

In closing, I would like to say that Ativan greatly reduced my mother’s anxiety.

Wishing you peace during your caregiving journey.
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Possible UTI? Maybe you should find out if she has one.
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Your mom does not have 'mild dementia' if she's hitting, throwing things and not allowing you to clean her after using the toilet. She's further along with her disease process than you are aware. If you are going to insist on caring for her at home and 'have some stamina to keep mom out of the NH' then you'll have to figure out how to properly clean her after using the toilet. I doubt the staff were 'bragging' that they were able to clean her, just saying that they have the experience you lack with elders who suffer from dementia. Watch Teepa Snow videos to learn how to manage an elder with dementia, how to bathe her and properly interact with her so she will allow you access to helping her; it's all in how she's approached and spoken to, most times. Ask the staff for THEIR tips as well.

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.
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Ann1963 Jan 2023
You need to understand that I'm new to this, it's a learning process, this doesn't come with a play book. Excuse me, but yes, I'm getting defensive. 6 weeks ago my Mom came home from inpatient visit with diaper rash, and the current nurse asked "what do you do? leave her in her own urine?" Statements like that aren't nice, and she did seem like she was so pleased with herself, "why me and my aide are able to change her, keep her dry, wash her."

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.
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