Is my mother's unkempt look and bad hygiene a reflection on me?

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.

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.

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.

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.

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.

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.

I'd not concern myself with how things appear, but, I would be concerned about the safety and health aspects involved. This poor judgment and lack of ability to care for herself is also indicative of more serious issues, like her safety and welfare from other risks. If her doctor is aware, he would surely report her to Adult Protective Services, as someone who is not able to care for themselves is entitled to be protected, even if they disagree and resist. If the doctor is not aware, I'd inform him and or social services.

If I knew of someone like that, I would report it, so the person could get some help, whether or not their family was aware of it.

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.

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.

I'm sorry, but I think it does look kind of bad on the caregiver. I would not take my mother out if she looked unkempt because I would be mortified.

I don't mean to sound judgemental cuz I'm sure it's easier said than done.

Well, you can only do what she allows you to do. That being said, knowing that she's obviously no longer able to take care of herself (which is a rational decision), it is no longer her "decision" to continue on as is because it is not in her best interest. If you were she, would you want your daughters to act in your best interest? Like others have wisely suggested, time to either get guardianship or contact social services before she has a bigger crisis than a bad hair day. Good luck!

Your Mother needs care. I would be more focused on that than how it makes you and you sister look.

JOANN
Please look up ADLs. Basic and IADLs (Instrumental Activities of Daily Living).

Hygiene is the first to go. It will have to be addressed and sadly other issues will follow.

Go over the list. I’ve attached one. It’s a list of the things mom is going to need help with as time goes by.

Even the most resistant can become compliant with a little (or a lot) of encouragement.

You and sister are her next of kin right? If you don’t help her, who will?

She’s lost or is losing her ability to care for herself. I’m not saying you have to be hands on. But someone needs to manage her care and get her the help she needs.

https://www-tc.pbs.org/wgbh/caringforyourparents/caregiver/pdf/cfyp_adl_checklist.pdf

I know I posted earlier on this topic. Wanted to add, before she went to memory care, if we did have somewhere to go, I asked her to put on some make up. We only went out a few times to family functions, because she rarely wanted to leave the house. She had a face lift 20 years ago , and kind of looked like Joan Collins, prior to this disease, so maybe there was a small memory left of how she used to look. She gladly agreed. I added this as a possible suggestion to encourage a parent to look presentable when going out. For my mother , it was make up, maybe for some one else,, they liked to wear nice clothes. Just an idea

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.

This seems to be part of Dementia. My 91 year old mother in law has been declining over the past couple of years. She lives with my husband and me. It takes continuous checking to make certain she is wearing Depends. She will go off to her bathroom and remove them. It's also a struggle every bath time. Personal hygiene is something that takes constant supervision from my husband and would be impossible if she were living on her own.

I'm surprised by the number of people who don't understand dementia. They remind me of the people who have never had children, yet have lots of opinions on how you should be caring for your kids. While it's not a reflection on you to someone like me, there are many who will judge you.

This is not a reflection on you though as another contributor offered, it sounds like she shouldn’t live alone anymore. My sister and I have been going through the same thing with our mother. It got so bad that we had to force mom into memory care because she fractured a bone from non activity. They rarely walk into memory care centers on their own. It was truly the hardest thing we have ever done. Even with experts around they will still refuse to bathe. Mom smelled terrible and we finally had to work with the home to force her to bathe because she was developing sores in skin fold areas that were also infected. She was also extremely susceptible to UTIs. Now she is required to bathe once a week and it’s not pretty. And yes she does get bruises on her arms from struggling. But there is no choice. She has also worn a wig for years and. she won’t let anyone cut what's left of her hair which is growing out from under the wig. But that’s not something we’ll push. Your sister has no idea what it’s like. It would be good for her to step into your shoes for a while. This is not your fault. Thinking about you and sending you peace.

Several people have mentioned being turned in to APS. Let me tell you our experience when that happened to my MIL. She was living in our house where we had built on a totally handicapped apartment for her that was actually designed with the help of her social worker. We live out of the country.

We set up someone to come in for 4 hours every day from about 9 - 1. Then we had someone come over every night from 6-8:30 to help give her a shower every single night because she had huge incontinent issues, both bladder and bowel and would only wear poise pads. Urine would soak into her chair that she slept in, even with pads. She'd get up from her chair and would pee and poop (she had diarrhea which she had no intention of trying to control because it helped her lose over 100 lbs.) When we were back in town we could smell her 3 rooms away. It was horrible.

And she fell a lot. The ambulance service went over 3 times in one week. We were in Germany at the time and they sent me a FB message to call ASAP. We talked and they wanted to give us a heads up that they were calling APS. We told them to go ahead. Maybe it would be the wake up call that she needed to go into Assisted Living.

We thought HOORAY!!!! And they came. While they were there one of her care givers were there on their regular schedule. Although it stunk to high heaven, she had people coming in twice a day, she answered questions correctly ... they said there was not one single thing they could do even though the police and ambulance service both turned her into APS.

That was in October of last year. We came home for Christmas and asked her to please go into assisted living, just to get her strength up so she could walk without falling. We told her after she had 3 months there with no falls, she could some back home. She agreed. We found a very nice facility and they came to evaluate her and said she absolutely did not qualify for AL. It had to be a NH.

This has been a huge weight off our shoulders. She has gone downhill ever since though. Actually called hubby yesterday saying she wants to go home because she is being abused by the NH. She is not being abused. It takes 2 of them now to get her out of her chair to go to the bathroom. She said 2 times at night when she hits her call button they have stepped on her toes while trying to get her up. They want her to wear her shoes when she gets up and she thinks this is abusive. She never wore shoes at home (yep ... walked right through urine and poop all the time and didn't care).

Sorry, I guess I'm rambling too much. Anyway, my point was sometimes APS just doesn't really seem to do anything. :(

Not your fault!!! This exact situation occurred with my mother, except that your mother seems to be allowing you in her life. My mother and I were never close, so it made sense that she kept be at bay -- I live 75 miles away -- insisting that I not visit because "it was too far away," "the weather was bad," and sometimes she'd say "I don't want you here." OK by me. We still talked on the phone and she would tell me what she did during the day -- vacuumed, ordered a pizza, so-and-so visited. Then after 6 weeks, I visited for Thanksgiving -- wow! She was unable to care for herself -- garbage not taken out (flies!), filthy clothes (mental inability to change clothes/wash clothes), she smelled like urine and BO (when I went into hug her, I almost gagged), her bedroom smelled of urine. I was shocked. I realize now -- my mother is in a nursing home with advanced dementia -- that this decline is typical of dementia and so is covering for these inabilities. My mother was really good at convincing me that she was fine. I would get outside help -- an at-home CNA to help her with small chores, especially the showering. Don't be shocked if she takes a sudden plummet and the dementia becomes more severe -- paranoia, stories that are completely out of left field, whatever. My mother started calling the police in the middle of the night telling them I was trying to break in and steal her things. Then when they arrived, she would give them my phone number and they'd call me at 2 in the morning. APS was called in and she had to be removed from her home -- it was CrazyTown for several weeks. Good luck and don't blame yourself...just be prepared for a downward spiral at some point.

She is a danger to herself. She should not be living alone. You may need to Baker Act her for a competency evaluation. If she is ruled incompetent they will whisk her away to a nursing home.

It does not reflect on you unless she's directly under your care, if she is under your care then think of it as if - you wouldn't let your child out of the home like this then you probably shouldn't let your loved one out of the home like that either.

Does your mother not have any caregiver.?

You may want to call Hospice and get them involved to help guide you, they'll come in and do an evaluation, if your mom is against it try and put the spin on all the positive things she could gain from them coming in to help her.
At a minimum they'll be able to guide you through whatever process will best suit you loved one.

Hello joannc60,

First, let me tell you I have been caring for my mother ALONE for 7 years now. She has dementia, and is now well past "moderate dementia" as you say your mother is, so I know what you are going through FIRST HAND. This is the most difficult responsibility I have ever had in my life.

Yes, this is a bad look for the family. Your mother can NO LONGER think clearly, so you and your family must carry out what she no longer can, no matter what she says. Her hygience is ESPECIALLY important and here's why. If she does not already...it is almost inevitible that she won't attain a UTI, no matter how clean you keep her privates because she has to wear the disposable panties. UTIs create BIG problems and requires special treatment. UTIs can really cause your mom to act out strangely and will need to be treated with anti-biotics (which is only for a period of time) and then I have been given another med to assist with treating my mother's UTI. I get my mother labbed every three months to see how her UTI is doing, you MUST stay on it. I didn't even know what a UTI was until my mother had it and had NO IDEA, it could cause such problems, so PLEASE, get her a lab done for UTI, keep her as clean as possible down there, and get to know her pee pattern, so you can ensure her disposible panites are changed often and she is not wearing a urine filled pantie longer then she needs to.

Finally, I know my mother liked to look nice before this awful disease attacked her. She was very considerate of her outward appearance, as a matter of fact, that was the first sign where I noticed something was off with her becasue she no longer cared about how she looked. As I care for my mother (and again, I want to highlight that this is not easy, it is only due to the grace of God that I have lasted this long and haven't jumped off a bridge, and I am not joking when I say that), I want to treat her the way I would want to be treated and the way I KNOW she cared for herself before dementia. So please think about those things, talk to your family and KNOW that I have added you to my prayers when I pray for others and especially those like me, who care for loved ones. OH, one last thing. Rehab facilities ARE NOT, repeat, ARE NOT good for dependent individuals such as dementia patients. They do not have the staff to do it correctly, and HONESTLY, they do not care. They do the miminum required to keep their jobs. I also know this first hand.

Blue Skies,
Angela

Of Course, Being you are Family Here, Dear, It not only Reflects on You, But tells me That One day if anything Bad should happen in her own State of Mind, Adult Protective Services will not Take Kind and Come back on you.
Try and Make arrangements for Mom to be Looked After More or Consider a facility, Get her Affairs in order before going There.
I Care...

Your mother needs help, aside from the bathing and clothes changing. Dementia changes everything and there is no going back and no way to make the person with it understand. I'm sorry to say that YOU have to be the person in charge. YOU have to make the hard, ugly decisions. That is part of why caregiving is so hard.

People with dementia hate to shower because of the sensory issues that go along with it. There is a perineal spray wash you can use so you can at least wash her privates, it's literally a spray and you wipe it away with a washcloth. There are also body wipes that don't need rinsing like the kinds they use in Rehab centers when people can't get in the shower. At the very least you could try them as they are not as shocking as the water in a shower is and they can still get the job done. Some can be warmed in the microwave for 10 seconds just so they aren't cold.

But even with all of that, your mother needs someone there with her everyday because let's face it, you go to the bathroom everyday all day long. She can't do it herself anymore.

Seems she has reached the place where she can no longer make good decisions. Who has the POA? It is time to use it.

Her incontinence issues may be an undiagnosed UTI. Her unkempt appearance shows she no longer knows what to do or is depressed and doesn't care.

Her appearance is not a reflection on you, but symptoms that life has gotten to difficult for her to do alone. Please have a family meeting to discuss mom's care and get her help - either a new place to live or help so she can stay at home.

Hi! Just my two cents, but whether or not her appearance and unkemptness reflects on you is not particularly important. The real issue is that her hygiene is directly linked to her health, and that is of paramount concern. Good child, bad child aside, your collective energy is better spent looking at how to engage care for your mom since she has stopped taking care of herself. You are absolutely right that this can be part of dementia. And so what do you do about it? I'm not one who believes that you need to take on the care directly, if that's not in your wheelhouse. If you are better at researching than providing direct care, go that route and figure out how you can enlist professional assistance. Paying for care is always a concern, but there are resources out there in our communities to help you navigate the system. Is her doctor an ally you can bring into the conversation? Tricky spot to be in when your mom lives alone. Wishing you luck!

I’m new to this care giver responsibility too and I’ve learned you have to be stern! I give my mother her clothes to put on for the day and I threw out all her underwear (panties). I check often to make sure she has on a depend. That was a lesson learned the hard way. I carry extra clothes, depends and wipes when leaving home. You have to take the “parent” role now. It’s not an option on bathing and changing clothes. I let her fuss and I continue to do what’s needed and afterwards I give her compliments on how pretty she looks or smell. It took me months to realize that I had to be stern or she would walk around looking an absolute mess. On some days I let her wear an outfit twice just so she can feel in charge but only if it’s still looks and smells good. My prayers are with you.

Invite your sister to do better than you - that will change her opinion and her attitude.

Sometimes we just have to play the cards we're dealt.

I can so relate to this. My mother is in AL (dementia) and went from showering/make-up/hair fixed to absolutely nothing....thinking that she looked fine. Its so hard to see her like this. I've started taking my Mom weekly to Great Clips just to get her hair washed since she refuses to do it at AL. I tell her I am taking her to the "beauty shop" (that's something she used to do weekly). If she is dressed inappropriately or dirty clothes, so far I have been able to get her to change by telling her what she has on will be to hot or cold depending on the weather. Good Luck with your journey, unfortunately, it doesn't get any easier.