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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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I don't know what to say. Your mother is living alone, she has moderate dementia, her personal care is shot to pieces - and you and your sister are concerned about what you two look like?

Does it matter?

Nobody understands better than the people on this forum how incredibly hard and frustrating this phase of caregiving is. You know your mother needs help, she says no to anything you suggest, what on earth are you to do?

Well, the answer is - don't do nothing! Have you contacted your local social services and asked for an assessment? Have you reported her living conditions to APS? If your mother's dementia is becoming so advanced that she can't be responsible for her own decisions any more, there are ways to intervene; and at the very least you need to start getting her onto people's radar and ask for help.
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cherokeegrrl54 Aug 23, 2019
Great advice, CM!! I think too many ppl bury their heads in the sand..
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I must be an awful person b/c I was totally embarrassed to take my mother places when she looks raddled and stinks and acts like a loony. To take her to a restaurant and have people ask to be moved b/c she smelled so bad?

HOWEVER--
Anyone who has had ANY experience with elderly people will not judge YOU for the way your parent appears. You have to shrug it off--as awful as it sometimes is.

I am no longer involved in CG for my mother and never will be again. I don't see nor talk to her (her choice) and so whatever happens or how she looks or smells--has zip to do with me.

I have friends whose daughter is married to my brother--mother lives with them. These people are on my case constantly b/c I don't take better care of mother. I cannot get them to understand that even when she WAS 'functional' she wouldn't let me help wash her or really clean her apartment. They just think I am horrible. And they let me know it, every time I see them.

Um--what about the 3 sibs who are 100% MIA and do and have done ZERO for her over the past 7 years that she's been 'bad?" They all get walks b/c they don't
live close by'.

It's a conundrum--I could not make mother bathe often enough, nor wash her clothes properly, nor have a chair cleaned that she'd peed in so much it's rotting....I just gave up.
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cherokeegrrl54 Aug 23, 2019
Midkid58——i always look forward to reading your posts....you tell it like it REALLY is, good, bad or indifferent!! You are honest in your responses. Your head isn’t buried in the sand, like so many are....Liz
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It could look like mom is being neglected when she obviously needs more help than she is receiving. A neighbor could call Adult Protective Services to report her as an "at risk" adult.

Mom with moderate dementia is at the point she needs at least 24/7 monitoring. Do not stick your head in the sand or get into denial of her condition, which is very common for family early on.

Who has mom's POA? Time to get her the care she needs. Nope, she will not like it, but, it is time. The doctor is a mandatory reporter.
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gdaughter Aug 26, 2019
So, Joannc60, realize this and do what you think is best. This is hardly the worst case APS has ever seen and they will dutifully follow up if need be. You hire private help and wonder if THEY will call for some little thing; I have to wonder if my neighbor who was quick to shove his problem mother in a NH rather than attempt in-home care that would disrupt his life (which I respect as HIS choice) will call my own family in. To prevent him from god forbid seeing my mother drag trash cans up the drive and get some physical exercise at 6:30 AM, I will inform dad that the doors to the outside will be deadbolted with a key hidden nearby. There are similarities to these situations, but everyone is a bit different. Opinions and advice are freely given here, take what works for YOU and YOUR family.
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My mother in memory care for about a month does not want to wear anything else than the same 2 pairs of jeans. She is not incontinent. The facility at first didn’t want to address it. Now it’s a small issue, because they are laundered and she is bathed twice a week. When I spoke to them yesterday, for a progress report, they said it is a goal to get her to look less un kept ( can not think of a better word) . I’m going to buy her a few more pairs of similar looking jeans. I have not visited her yet. She needs time to adjust and I really need the break. She lived with me, and it was extremely stressful . There comes a point in this disease, when the person can no longer live alone. I think your mom is there. I told my mother we were going to the home because she needed another memory test, and blood drawn. Her facility is on the same campus as her doctors office. I had already signed the paperwork and paid for the first three months. I have power of attorney. Her doctor had diagnosed her with Alzheimer’s in June. When she thought it was time for us to leave , I told her my husband and I were leaving from there to the airport for a cruise and we would be gone for a few weeks. The staff was in the room, she didn’t like it, but she would never have gone any other way.
i called the next day, she slept the whole night and was making friends. She is so much better off there than here. She gets physical therapy, has a social group, and also the privacy of her own room to watch tv. They also noted blood pressure issues that I was unaware of, because I didn’t take her blood pressure every day. I was never told to. Her meds were adjusted, and it’s under control. So far this has been a win win situation. Of course they don’t want to leave what’s familiar. It’s so much better for her and for me.
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I completely agree with both of you. I do understand that the OP doesn’t want to be embarrassed by her Mom’s lack of hygiene, but...!!! Stopping taking care of oneself is just one of the red flags that help is needed and the person is no longer able to make good decisions. Hopefully one of them has Durable POA and can take over making these decisions. As we have all said so many times, no one looks forward to the full-scale war that usually ensues when the decision for placement in a facility or at least in-home care needs to be made. But there comes a time when parents become children and children become parents. And, I agree that at some point, someone is going to call APS and open a real can of worms.
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gdaughter Aug 26, 2019
So, we are not in denial, we GOT professional help, we fortunately do not have an odor or incontinence...but we also have made zero progress on getting mom to shower. I have met with a nurse and this is not unheard of and life goes on so long as there is no skin breakdown/repercussions. Just to say that sometimes you can do it all and still not have a resolution. To what end, to whose happiness, is forcing someone to shower who doesn't want to? THe emotional upset and agitation is not good for the patient or the care providers be they family or professionals. APS professionals know this. It's neglect that is an issue; when family is caring and involved it is another matter.
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Joanne, I’m afraid you may not like my answer, but I agree with your sister to a degree, so here are my rambling thoughts. I was embarrassed when Mom first began having incontinence at her Independent Living facility. I was frustrated, confused, out of my element and honestly embarrassed for her, and I did feel it was a reflection of me. I am a smart, capable woman... why couldn’t I fix this? I (we) stumbled along for a while trying different strategies to “fix” it. It was my wake up call that I had to pick up my game, and I added a caregiver to help her. Thankfully my Mom was compliant, since she was very social, so she liked having the company and the caregiver was a genius and would slide in the “caregiving” stuff while socializing.
We had a very loving relationship and I can fully empathize with your sisters view, as I did feel Mom was a reflection of me and my ability/willingness/resourcefulness/devotion to help her. But not so much for how other people would view me, but how I would view myself. I couldn’t just throw up my hands and say “oh well, it’s the disease, people understand.” My goal was always to do the absolute best for her I possibly could, and that was the reflection on myself. At the NH I curled her hair every day because I wanted her to look good and feel good about herself. I wouldn’t have felt right being there with her hair sticking straight up, whereas that might not have bothered other people. And of course I learned and grew emotionally as we plodded along together.

My suggestion is to take a baby step and try to find a caregiver who can come in a few hours a day to “visit” with your mom. Maybe just watch tv with her, have lunch together and chitchat. Then ease into more caregiving roles like “let me help you to the bathroom” etc. And I agree with the other posters, your Mom needs more help than she’s getting, and it’s probably going to come one way or the other. Try to get ahead of it as much as you can.
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JColl7 Aug 26, 2019
I was going to suggest a caregiver too. You have done it wonderfully. Somehow they listen to and receive caregivers rather than family members.
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You say that she will not wear the Depends you got for her. Did you take away her other underwear, so that she didn't have a choice? That is what most people do when they decide it's time for Depends.
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Vlounew Aug 24, 2019
This is what we just had to do. My mother has refused the depends up until recently. The CG that comes in during the day caught her trying to wash them out, but now she is wearing them ok Mom is going to memory care in a couple of weeks. Any advice on how to get her in the car would be appreciated. She hasn’t been out for a long time now.
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There is no reason why you should feel guilty about something you have no control over.   Will other people misjudge the situation? Possibly, but again you have no control over them.  Does your sister have any ideas of how to improve the situation?  If so, let her try.  You have done what you can so if she has a "better mousetrap" let her step up.  Frankly, are you going to overpower your mother, force her to shower and wear clean clothes?  Sound like assault and elder abuse. Too many times, people criticize but have no clue about practical issues.  BUT other posters have ideas on how you could proceed and it does sound like your mom is past the point where it is safe for her to live alone.  It is the reality that matters, not other people's impressions of you.
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keepingup Aug 26, 2019
How perfectly you out this. The last month's of my mother's life I worked tirelessly to keep her ckean, looking a little bit out together. It simply was not possible. And I did get judgment. All you can do is all you can do. Thank you for an accurate answer.
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I agree with you it should not make you look bad - however you KNOW she cannot make these decisions for herself so no matter how it makes you look, it is elder neglect. Sounds like you and sister are going to have to ignore her wants on the memory care facility and have her moved into one if she is going to refuse to comply with either you or your sister. If you don't do something I a neighbour may report you for neglect.
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This is dementia for sure. My wife went through this stage of not changing her clothes or bathing, and sometimes I had a problem even getting her to change her Depends. I does not reflect on you or your care of her. Recall that she likely wants to care and wants to cooperate with you but there is something in her brain that blocks her from executing what she knows she must do. What saved my wife was when we hired home health aides to come in and give her a bath from head to toe, apply lotion such as Eucerin where her skin was raw and rashes were developing where the skin came in contact with urine. The aides are an expense but you might find them worth while for the treatment and how they may change your Mom's attitude and in her looks. The aides usually have much experience in dealing with these problems and getting "clients" as they call them, to cooperate when you can't, Hope for better times!
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