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My mother has more moderate dementia. She lives by herself and refuses to go in to a memory care facility. She is incontinent and will not wear the Depends I got her so therefore she smells like urine and will not change her clothes or clean up. My sister thinks it is a reflection on us that she smells like urine and looks unkempt. I say if anyone knows anything about dementia, then this is part of it. Does anyone have any feedback on this? I don't believe it makes us look like bad children if my mother flat out refuses to change her clothes or bathe.

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My two sisters and I are having the same problem with our Mother. It’s a very difficult situation and we feel like we are stuck on a rock!
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Some of the responses are implying that these family members of ours who are mentally ill (dementia) want to sit in their own excrement.   I assure you they do not.  They are sick ...their minds are not right...they don't know what they are doing.  This is not only a smelly, embarrassing social issue, it is a health issue.
Skin breakdown is serious and painful.

One of two things need to happen... if you are around her daily, you need to find a creative way to get her to change/bathe.  Or, she needs to go into a facility where they will force her to.  Many will not like to hear me say this, but they have meds that will help her mood and make her a bit more compliant.

My mom is in assisted living and when I say "hey let's wash your hair or let's take a shower", she says oh I have already done that.  I can tell by smelling her and looking at her that she hasn't.  So I increased her level of care to include "assisted showers" twice a week.  She still refuses on some days and we just approach it differently later in the day.  I told her the facility was helping everyone because of slipping hazards...or on some days they tell her that the hand held shower is hard to manage so they are helping everyone.  Then she doesn't feel singled out and I don't think she has the where-with-all to argue the point. LOL
Good Luck, but don't take it personally.  Just try to outsmart the disease!
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Joannc60,

It is important to understand also how your sister feels about this.

"My sister thinks it is a reflection on us that she smells like urine and looks unkempt. "

This is feedback. Respect her feelings. Do not force her to accept Mom looking this way, sis shouldn't have to go out with your Mom.
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I am going through the same thing with my mom .her nurse told me to change her and my mom wont let me change her i cant let her be in poop and pee when i tell her she gets mad i dont want to to get in trouble what to do?
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Why on earth is her monstrous behavior a reflection on you? If you are doing everything to keep her clean and washed and smelling nice, then do NOT feel guilty. She is a slob, mental issues aside. This is disgusting and unacceptable. Either you force her and she will scream and rant or you leave her be filthy and live like that. But here is the question I have. If she flatly refuses to cooperate and it is affecting you and those around you, why are you putting up with it. She should be in a facility where she is cared for or she needs a caretaker who will make her be clean and proper in her clothing, etc. You can't do it all and if she does not cooperate, that would be the breaking point for me. Do not be a fool for someone like this. And ask your sister to come and make her be clean and if she doesn't tell your sister, you are moving her to your sister's home. I would never put up with this from anyone. You could call Adult Protective Services and ask for their help since nothing you are doing is working - do this to protect yourself from harm and maybe help her in the process. Sometimes we must force people to do things they should do but won't. This is such a situation.
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I"m shy to remind my Dad's hygiene is needed . I tried it once, he said that he begs my pardon.
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shad250 Sep 2019
LOL
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I feel for you. I always feel it's a reflection on me and if she knew better she would be mortified. I live with both of my parents. My mom makes a huge deal about having to shower. She gets so mad at me. I'm sick of it! Sometimes I can't even be around her because of the smell. My dad can't get her to , not to mention he can't even smell things, so it's me and anyone who comes over. Ugh......so many things are going badly lately....I'm so depressed and have no life. Hang in there honey
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My Mother is 91 and she has lived with me for 1 1/2 years. Before that she was living in her own home. I found that she hadn't taken a shower in 3 years and was in and out of the hospital with UTI. She refused to take a shower and would wear the same Depend for a week at a time. I took her to the doctor and asked if they could send someone to give her a shower. The doctor had to get it approved through Medicare and about a month later a bath nurse showed up twice a week for a six weeks and got her on a schedule. I will say that she will not take a shower as often but once a week is what we are doing now. We also have used a shower chair, let her know that every Sunday morning is shower time. Once a week is better than nothing at all. Changes her Depends a few times a week and has not had any UTI problem since. I was told by the Doctor it is a fear of falling in the shower and it happens more often than you think.
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Mom needed someone to help her and I felt like it was a reflection on me . She is never in the shower alone. I have a very large shower and the bath aide was able to get in the shower with Mom sitting on the shower chair and we do it the same way now.
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If you are trying no matter how trying it may be, it's not a reflection on you. I read that the elderly don't like to bathe daily as most grew up bathing weekly or less. Maybe you could wear a bathing suit and get into the shower with her. Make it a fun, girls out event. Or even ask her if she could help you as you need the help. Just give her a kiss and a hug.
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Louielouie2 Sep 2019
I don't agree. If you show up with your Mom and you look put together it will look like you didn't care about her.
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Sorry for all the fear mongering. You aren’t bad children and you aren’t going to be charged with neglect.

I wouldn’t worry about anyone seeing you in public and calling APS. APS will not jump in the car and rush over to investigate. And unless it’s someone you know who calls and can give them a name and address, nothing will happen. APS won’t know who you or your mother are and where to find you.
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Sendhelp Aug 2019
Joannc60,
WorriedinCali is referring to my post as fear mongering:

Sendhelp:
If you take an elder out in public in that condition, people may call APS for neglect of an elder.

Disclaimer: I am not saying you are neglecting her.
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Why, why, why does anyone allow these mental people to be so controlling and abusive and manipulative that they can destroy everything good around them and no one does anything about it. It just cannot and should never be allowed. I don't care what is wrong with these people, they make the beds they lie in and then let them sleep in it. It is NOT your fault. They are who they are. It is probably useless to try to force them or make them understand. If that is the case, why are they in your home? Place them somewhere safe where they are taken care of and YOU have the peace you deserve and can live your life. I would never put up with this - I just simply could not do it. Perhaps a caretaker can take over and get them doing what you can't. If not, place them. It is just disgusting.
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Ahmijoy Aug 2019
Riley, I do understand what your feelings are. Sort of, “these people have gone mental, refuse help and won’t let anyone do anything for them. So, let them live in their own piss and s**t and let them be dammed!” On some level, we probably all feel that way deep down. Wimpy adult kids who refuse or are afraid to put their feet down and say “ENOUGH!!!”
But actually putting those feelings into effect is easier said than done. A lot of older Seniors who maybe lived through The Great Depression don’t trust anyone with their money, even their kids or grandkids. No way are they giving POA to anyone. These are the people who made clothing out of flour sacks. And, if a relative doesn’t have durable Power of Attorney, there’s nothing anyone can do.
Then, there’s the fear aspect. Many, many elders tell their kids “don’t you ever put me ‘away’!” They put the fear of God into their kids. And LOTS of posters on this forum think all facilities are dirty, abusive hellholes.
So, what you are suggesting, like I said, is on some level how a lot of us feel but don’t say it. We feel awful for those posters who endure physical and verbal abuse from the people they care for, it we know even as we type our advice that they will not take it and the situation will continue exactly the way it is. It’s just the nature of the beast. But we do and always will keep trying. Some “see the light” and some don’t.
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If you take an elder out in public in that condition, people may call APS for neglect of an elder.

Disclaimer: I am not saying you are neglecting her.
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Regarding the bathing, have you tried no-rinse soap or dry shampoo? That worked with a relative. Perhaps she doesn't like the water.
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If you are the person driving mother, taking her out, you have every right to insist she shower or you won't take her out.
Saying that often works.
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Something I just remembered, when my mother lived alone she would not shower , I found out later because she nearly fell once. I have balance and mobility issues and I know myself after falling once in the shower I don’t do it now unless someone is home or nearby . It was a very frightening experience.
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Ahmijoy Aug 2019
Totally agree. One of my biggest fears. It’s like someone wrote “now get dizzy and fall down” on the walls of my shower!
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I'm sorry to say, yes it does have some reflection on you, but it is to your sister and those who do not deal with this type of problem. I
My father is 90. He does not have dementia and he will not shower or change his clothes. He says it hurts. I tell him I will help him with a sponge bath and the answer is still no.
Sometimes people will stare at me like why don't you do something about this. One person even said something to my dad and he said kindly to them, " I don't care and you won't either of you have to live this long and feel this way. His sentence changed my thinking for ever. How dare any one of us judge how someone SHOULD feel if we don't walk in their shoes. So I say, let what others think what they may. For now be with your mother, love her how you want to. Your sisters is going to say and feel how she does and you can't change that. God bless you for doing the care your mother allows you to do and loving her in spite of her smell.
P.S. If you do have problems with the smell, a tiny touch of your favorite candy flavor oil on your nose might help and help you even feel some joy as well.
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cwinter Aug 2019
Bravo, I agree... until you've walked in the shoes yourself.
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my mother is also very hard to connect with- though she does not have moderate or advanced Dimentia. My mom DOES receive care from a caregiver ( very bad back problems)- although showering is still an issue. I try to ask gently how her showers are going? She is addicted to pain meds so I have to help with pain management. She also does not change clothes regularly. A strong faith helps and know you're not alone! Maybe try and get a caregiver a couple times a week and they will work out a care plan.
Hang in there!!
Deb C
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No it is not a bad reflection on your family. I take care of my 90 year old mother and she has dementia and she is exactly the same way. I have tried everything possible. My mother was the most cleanest person body wise and house. But the past 5 yrs. She just won't do anything to not smell. I bought her depends for bedtime and she just threw them at me. I don't think your sister understands dementia it's an awful disease for anyone. I'm an only child so it's all up to me and it's not easy. My mother is mean and very hateful. All I can do is try to make the best out of this situation. Maybe you can take turn taking care of your mom. That would at least give u a break.
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Zoelove Sep 2019
Mean and hateful is a big one for me. Even after all these years...I just can't deal with that well. I am as nice and kind as I can be with her about everything . I help her in the shower. She sits on a sturdy chair. I help her in and out of the tub. I make her comfortable and try to give her privacy while she cleans herself. I had her showering once a week for a month. Then one day I said how about you have your shower now. She said....why cause I stink! And with that I left the room so as not to argue with her. Sooo challenging
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My mother is the same way . Ever since my dad pasted 3 years ago she just stopped caring . My mother has Alzheimer’s and one of the things she has lost is her since of smell and it’s very hard to say “ hey mom you smell” I’ve tried several ways but it always offends her. It is not a reflection on you or your family it is just the way they want to be . I found that’s it’s hard for them to loose there independence and when we want to take care of them they feel that we are bossing them around . Also mine won’t wear the underwear either and I now she has something wrong. She won’t even go see a doctor I have to take her and say I am there to see him and then say “ hey mom the doc wants to say hi” that’s the only way I can get her in there to him. But he doesn’t help much he says leave her alone let her grow old in her terms. It doesn’t help when she physically abuses me and I ask for help. I know what to do now but it’s hard she is still my mother . So stay strong and try and wash her clothes when she’s not looking , put those bed pads under sheets when she isn’t around , slowly switch out her underwear for the others . Maybe it will work maybe it won’t but she won’t have much of a choice when that’s all she has to wear. I am learning my self how to help with out her knowing since she won’t accept it anyways . There our moms we love them and we try . That’s all we can do. And if your sibling have a problem with it tell them to take over her care see if they can do better.and if they are like my sibling they won’t they will have an excuse. So if that’s the case tell them to go dry up if they won’t help out .
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Zoelove Sep 2019
Agree 100%. Same issues here sibs no help. I'm always the beast asking for help.
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A friend of mine brought her mother incontinence panties with flowers on them. Her mother seems to like then and will use them.

https://www.amazon.com/Always-Discreet-Incontinence-Postpartum-Disposable/dp/B0721JR6Z5/ref=sr_1_3?keywords=pretty%2Bincontinent%2Bpanties&qid=1566887079&s=gateway&sr=8-3&th=1

It seems standard that they don't want to shower. When I went through a period where I was completely exhausted the idea of taking a shower seemed like overwhelming work. Had someone offered me a bowl of hot soapy water I could have done something with that. People that come in once a week to bath the person would be an option. They have ways to cajole the person.

My sympathies go out to you.
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Hi Joann60 It's not your fault. It's extremely hard and exhausting trying to reason with a dementia patient. In fact there is no reasoning case closed...the dementia with my Mom. I simply cannot comprehend how she cannot smell anything or see . how she is not even close to being dressed properly. My brothers blame me for my mom's appearance. They are like two prehistoric birds with their head in the sand ..The problem is I'm not gonna stress myself out trying to dress her proper everyday. Her hygiene is another matter. I make my mom take a bath twice a week and it's a up hill battle and we're both stressed afterwards. I've tried all the soothing advise. My mom's in the tub barely five minutes and she's letting the water out. My mom's hygiene and the smell of urine in the carpet is a huge concern and the worst problem...the carpet I have it cleaned every month. It still stinks and I'm blamed for that too. My mom pees in cups and put them in a row in that room..Hence the carpet is ruined. I do need help It's the saddest thing to try and make my mom understand and they do not. We are doing the best we can..My mom's sister is the only one she might budge for..and sometimes listen to..A big hug and blessings to you.
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evanpoole66 Aug 2019
I love your name, Misseverything. I could come behind you and say Hello, my name is..Misseveryone, cause that is what I feel like as well. There are just too many jobs and personalities you have to achieve while taking care of someone with "dementia"; I keep telling people I wasn't trained for this job; I was a social worker, but not a psychotherapist. It is very draining and you sometimes feel you are failing at it to the point you can't keep up with which job to take on next. I had a training session with my Mom in the shower, I showed her some safety tips for not falling (using two shower chairs and the door handle) sitting down to dry herself, paying attention to her private parts, and call when she needs help. Sometimes I supervise and coach; sometimes I just peer/ask through the door is she ok or need help. Everyday is a challenge to find different creative ways that work, and yes, I have to do it all alone for family is of no assistance. However, this site is a God-send cause from the others' experiences, I find hope and an outlet to keep on pushing forward. I hope you do the same!

PS - you might try pulling the carpet up in some sections and in others, lay down plastic runners so you can wipe up the urine with a mop instead.
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joannc60, sounds like your mom's dementia is far worse than you realize. It's time to seek professional help.
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I have had this experience with the 2 parents that I took care of as well as my stepfather whom I am still caring for. With my biological father, I had to set up a shower with a small chair so he could see it, I ran the water and would say to him with a smile on my face, “the shower is ready for you, the water is nice and warm—you don’t want to waste water do you?” Initially he kept saying no, but I would try again after a few days passed and it ultimately worked many, many times. With my mom, I had to give her bed baths using the no rinse soap and shampoo I bought at the pharmacy specializing in elder care products. She would initially resist, but I just kept telling her in all earnestness, how much I loved her and I have never asked her to do anything that wasn’t in her best interest, and I was worried she would get a UTI if she didn’t let me wash her and she would relent. With my stepfather, I put the chair in the shower, and whisper to him that I am so sorry to tell him this but he is starting to smell and people are saying things. I am able to get him to take a shower sometimes once a week, sometimes once every 2 weeks, but at least it happens. The bottom line is just like with toddlers, things works for a while, then something changes and you have to try to find a new solution. The book The 36-Hour Day was really helpful with the subtleties of resolving these issues with dementia and Alzheimers patients and offers suggestions to solve thorny situations. Personally, I had to get over my own resistance to showering all 3 of my parents myself. Truthfully, I just didn’t want to do it. BUT...after I acknowledged to myself my feelings of helplessness and yes, resentment... I was able to start looking for solutions outside the box. The situation of bathing is a challenge for certain but if you keep trying hopefully you’ll be successful. Part of the problem with allowing it to fall by the wayside is the possibility of UTI’s which in the elderly can cause severe symptoms and sometimes require hospitalization. Don’t give up, smile when u don’t feel like it and be sweet when you feel annoyed, give a few days between attempts to bathe her and then try, try, and try again. ❤️
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cwinter Aug 2019
You are a very child and caring person, and went the extra mile. Those UTI's are nasty, debilitating in a way I think many do not realize.
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Regarding depends type products. Has anyone here ever had to wear such a garment themselves? I did after having kidney stone surgery, just in case. I couldn't believe how uncomfortable the garment was, not to mention that it felt like I was wearing a furnace as it was unbelievably hot. I wanted to dump a tray of ice cubes into it !!

No wonder elders don't like wearing such products. Hope someone comes up with a better cooler product when it is our turn to wear such garments on a regular basis.
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gdaughter Aug 2019
Hey ff, tell me more about the need for product after kidney stone surgery (my sympathies!). I had a tiny stone that resulted in an ER visit and by time they got to doing an CT, I was better. ....but not long after I was home a few hours later it was like really weird sudden and total loss of control! After that I was fine....
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No, it is not because you are NOT her. However she shouldn't be living alone any longer. The decision is not her's, but your's.
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She should not be living alone anymore. If she walks she can wear pull ups . If she’s immobile, then diapers. At minimum, she needs a live in caregiver. Don’t wait for a fall.
Hugs 🤗
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I think it’s time to step in. It’s not healthy for her to be so unclean. Imo the least important thing is how it reflects on you. She needs to be in a situation where she can be kept clean and safe. You need to have POA , she obviously can’t make sound judgments and probably needs to be in an assisted living facility
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Bella7 Aug 2019
At my parents AL they don’t keep their rooms clean let alone the dear people! Both of my parents live there and neither one of them could really make a sound judgment. Sometimes I get confused on what assisted living really means and if nursing home is the answer, I just don’t know anymore. I complain about how stinky and dirty my dad’s room is and they tell me that they have tried to clean it but it’s his choice on how he wants to keep his room!
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Joanne, this is not a reflection on you. You are a loving daughter and you are doing your best. Maybe you might get her always boutiqette or tena pants. Perhaps your sister may be able to help you. Maybe baby wipes?
I have many years experience and please believe me it is not a reflection on you. It is a sad part of her condition.
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My parents both live with my husband and I in a small addition; two bedroom partial kitchen (no stove! Just micro and small frig). They both have moderate dementia but very different. He is confused about simple directions and loss of words but takes care of his hygiene needs. She has short term memory loss and self neglect of personal hygiene and changing outfits. She will go over a month without showering or washing her hair. I’ve tried everything. She thinks we’re lying when we tell her it’s been 4-5 weeks. I tried a companion caregiver. They dismissed her after two weeks. It’s a constant battle with mom. I’ve given up the fight. I think she is heading to a faculty soon because she is so obstinate but on the other hand has many days of fairly normal behavior other than repeating things and lack of self care. I did accomplish using disposable in continence panties! But that took months! Ugh.
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