I am my mother's primary caregiver. Since September of 2022 my mother has been refusing to get up to use the toilet. She rather sit in her own urine and poop. I will ask her if she knows that she's done it and she denies it. It's also a struggle to get her to get cleaned up. "I will after bit". The smell as you can imagine is like a septic backup. I'm also concerned with sores on her. She also refuses to get into the shower. She is able to walk but not very far or long. This is nothing unusual. My whole life my mother hasn't moved around much. I'm 42 now. Her doctor's and social worker are aware. She has taken mental health evaluation and MOCA cognitive test. Doctor says she has mild memory loss. When we ask her why she won't get up to use the bathroom she claims she doesn't know she's doing it and says she either gets dizzy getting up, gets nauseated getting up, her feet hurt, she's too cold to get up or she didn't get enough sleep and she'll clean up after she gets more sleep. Even when we get ready to go out I'll tell her she's dirty and she'll say she's fine and we'll clean up after we get back. If I make her get change, she gets verbally abusive (which she's always done my whole life when she's told to do something she doesn't want to do). She'll do it but not without a fight. She won't go into a nursing home and I can't make her because she's mentally ok the doctor's say. I haven't noticed any mental decline. Everything about her is normal except this and the silly excuses. I need suggestions. Thank you in advance.
Way2tired: "UGHHHHH !!!!! Another doctor unwilling to address the issue because the child is “ doing “ for the parent . "
Exactly what I thought! The professionals don't care because there is a child doing the caregiving.
As always, I wonder how/when/why the caregiving situation started, what the mother's financial situation is, is the caregiving D compensated, etc. And I always ask if there are other siblings, as it is often the case that one child does all the caregiving.
The OP deserves to have a life of her own free of caregiving. Unfortunately, that probably isn't going to happen. She never even replied to any suggestions made, so I doubt she will follow any of them.
Your mom has dementia. There’s no doubt about it. There are many degrees of dementia (mild, moderate, severe). In the beginning of dementia, no doctor will diagnose dementia.
“she gets verbally abusive (which she's always done my whole life when she's told to do something she doesn't want to do)”
Right. But your mom hasn’t, your whole life, refused to go to the bathroom, and refused to shower.
She’s doing this because she has dementia.
No normal person wants to sit in their feces and urine.
“I'm also concerned with sores on her.”
She’s very much at risk.
Your mom won’t listen to you, about going to the bathroom and shower. She might listen to non-family. Please hire a caregiver if your mom has the money.
OP, this has been going on since September 2022. One year. It can’t go on like this (your mom sitting in feces/urine/not showering).
Be careful, it can be considered elder abuse (neglect), leaving an elderly person in feces/urine for hours, days…
Your mom’s mind is not OK.
Checking your mother's meds, a medication consult might give clues into her behaviors.
2. Get her screened for depression. Dementia of some sort is obviously happening but there could be mental illness as well
3. You need to take charge!! this is not a situation you can be passive about
4. Get a home health aide for now until you can sort this out better.
5. Call Adult Protective Services - you're at a point where you can't seem to handle this anymore.
Please video her when she is in a heightened state so that she can't showtime!
That's the way to do it. Either get washed and changed at home or in the hospital. Then from the hospital to the nursing home.
It sounds like your mom is very well cared for by you. Please let me tell you something and it comes from 25 years as an in-home caregiver.
There's no such thing as 'doesn't smell too bad'. If you can smell anything, she has to get changed. Even being in a little piss or crap can cause all kinds of trouble. Anything from a UTI, skin breakdown, skin fungus, even open sores.
I always say,
If you smell something, say something. Then change them.
My own mother would put out every excuse in the book to not let me get her into the shower. Usually it was "I'm not dirty", "I just took a shower yesterday", "I'm not going to do it", "I'll do it tomorrow", "NO". And it never happened.
So I took the bull by the horns and decided that this is a dictatorship, not a democracy. She now gets a shower when I decide, like it or not.
I hope that you decide that you're going to win the battle.
It's not necessary to allow your mother to sit in her own excrement and filth while stinking up your home. When you give in to her, you are only reinforcing her abusive behavior. Refuse to take her anywhere unless she's clean.
Peace.
Your approach is spot on. Sometimes it has to be a dictatorship. There have been times I literally had to put a client's hand in their pull-up and show it to them. Whatever works.
We have/had the same issue with my FIL . We took him in temporarily after his wife died , not realizing how incontinent he was ( he lived far away and we hadn’t seen him a long time because of Covid ) . He sat in the same pull-up for 12 hours . Only changing it when he got undressed or dressed . He is incontinent of everything . Leaked on our furniture . He wanted to go live in independent living . He has a lot of trouble going from sitting to standing and is very unsteady even with his walker .
I knew he needed AL. We took him to various places . Some of them in my area call AL … personal care . I eventually “lied” and told him that personal care was a step in between IL and AL in order to get him out of my house . He settled on a place that has a huge one bedroom apartment as that is what he was used to in his independent living home in Florida . The only thing was the stove is unplugged , which he was not happy about . ( the building used to be IL) .
I did let the facility know the difficulties we were having . It has taken them a very long time to get him to allow them to help him get in and out of the shower about once a week. He insists on standing and washing himself . Just telling him it’s time to do something doesn’t work. He doesn’t want to be told what-when to do something . The PCP that comes to see him there kept saying he is competent and can refuse help with toileting etc . He has finally been worn down by the staff trying to toilet him q2 to where at times he does use the bathroom by himself more often to try to avoid being wet/ dirty. He still does not clean up properly . He realized he was in AL and finally agreed to a cog test to prove he was “ independent “. No surprise ….he has dementia . FIL kept saying he doesn’t ever feel wet and changes his underwear twice a day . We told him that is not often enough . He insists he doesn’t leak . He removed the washable large waterproof pads that the facility placed in his bed and couch/chairs.
Talking to FIL about sores/infections did not work . Asking him to toilet before we took him out did not work . Telling him it’s time to toilet did not work .
We stopped taking him out . It’s been almost 6 months since we took him out . Told him he has to do PT/ OT as well as let the staff help clean him up . He ended up in the hospital and then rehab , just recently getting back to his AL . While he was in rehab he said once he gets out he wants to go out for dinner . Rehab told him he needs assistance with showering toileting even when rehab is over . We will check with staff to see how receptive he has been to incontinence care .
I had similar issues with my mother who was with me after my Dad died then had gone back to her own home . We called our local dept of aging and social worker came out and mother was deemed she needed 24/7 supervision due to the fact she could not give appropriate answers to various emergency and not emergency situations . She was not able to formulate a “ plan “. So she was not safe. Both my mother and FIL were able to get by in conversations and had people including doctors think that they were competent . FIL also can not “ plan or execute”. But both had fairly good memories .
Call APS or your local dept of aging . Or do an ER dump and tell them you can’t take care of your mom anymore . My Mom was tipped off by family that social worker was returning to take her from her house to AL that I had picked out . Mom ended up in the ER with “ chest pains “. I had her tested there for dementia and she went to AL from the hospital .
Let him know that it was time for shower. It started out rocky at first but he started looking forward to bath time. I would have the water at a mild temperature and continue to talk to him,with the soapy towel where to start washing.I has a wand sprayer,rinsed him off after each instruction.I did have to close my eyes or turn my head a couple of times but we made it through.We had a routine.He did refuse several times but I wasn't taking "no" for an answer .Talking does help reassure them to do what you want.Just an idea.Hope it helps.
She won't go into a nursing home? Yes, she will and it won't be her choice.
ZippyZee in the comments is right. Incontinence is the line in the sand that she needs to be in a facility. Even if you were to bring in homecare it would not be enough.
I was a homecare aide for 25 years and now operate a homecare business. I dropped a client from our service last week who was like your mother. She was nice but sat in her own soiled pull-up all day long. She would not get changed or washed even with help. She would not allow rotting garbage to be thrown away and her home is so disgusting that it's like a horror movie. She had three different aides and no one got anywhere with her. Unfortunately Teepa Useless Snow doesn't have a video on how to handle this kind of elder care scenario. I met with her daughter and told her that she cannot be allowed to continue living on her own and in such conditions. The daughter doesn't know what to do because her mother refuses to go into a "home".
You have to get tough on your mother. If she needs to be cleaned up do not allow anything else until she is. Don't feed her, don't allow any different topic of conversation. Wear her down. When she gets verbally abusive literally tell her that she's sitting in her own mess and it stinks. That you will not take her anywhere or do anything for her unless she cleans up.
It would also be a good idea for you to speak with APS. Many people are afraid to call on them because they think they'll get into trouble. You won't. They can help and advise you on what to do for your mother. Call them. They can also help get her placed.
Vascular Dementia however can show other deficits prior to memory loss - processing & judgement deficits often reported by family.
Edit: I just looked up the MOCA questions. (This is more thorough than another screening test I was thinking off). It looks like it should pick up memory (both short & working) + processing + spacial. If your Mom scored high, I'd be looking at mental health advice next.
Depression or mental illness can deplete motivation, especially for personal care. Any history of these?
But also revisit the obvious stuff like has she got a small fracture somewhere & it's too painful to stand?
This is Not normal behaviour for a what, 60-80ish old woman?
Something isn’t right here. How can a person not mind sitting in urine and poop?
Do you have a whole lot of trust in the doctor that did her the cognitive testing? I think that I would get a second opinion. Your mom sounds like she has declined more than you suspect. When was this testing done?
I missed the earlier signs of dementia with my mom. It happens. I realize that you said that your mom wasn’t a pleasant person and argues with you but this doesn’t sound like it is ordinary contrary behavior.
Do what is best for each of you and look into placing your mom in a facility. You can oversee her care and visit her as often as you like.
Best wishes to you and your mom.
My mother -with dementia - was like this last year - I think she just forgot to go to the bathroom and eventually became incontinent with poop on the floor, on the chair and would refuse to acknowledge it. Like an idiot, I'd try to reason with her & get a migraine after cleaning her up somehow and then rushing to my job.
The day my husband cleaned up her mess was the last straw. I put mom in pullups and eventually hired an aide to take her to the bathroom. Shower was another battle & omg, the aide was a god-send as she took over.
I hope you find a solution - can you afford an aide for a few hours? Perhaps your mom will listen to a stranger and not to you. Your post brought back searing memories of last year, my 'annus horribilis" to quote Queen Elizabeth. (((hugs)))
I am sorry for your 'annus horribilis'. I know how it is.
You don't give someone suffering from Dementia a choice. They can no longer process.
If you phrase a necessary action as a question, you’re allowing for a 50-50 chance that the answer will be “No”.
Never introduce that option if you aren’t willing to accept a “No” answer.
It's time to find out her REAL MoCA score, get her properly diagnosed with dementia and if you hold POA, get her placed in Memory Care Assisted Living or hire carers to tend to her needs daily. Otherwise, you call APS and report a vulnerable elder who's not safe at home.
I never gave my mother choices in her care once her dementia advanced and her behavior became erratic. Leaving your blood and guts on the floor in order to accommodate her wishes isn't going to allow you to achieve the safety goals that are required on her behalf. You'll wind up depressed and anxiety ridden and then what?
Next time she refuses to be cleaned or starts acting erratic, call 911 and have her taken to the ER for evaluation, that's another option. There could be other issues going on w her you're unaware of. And some tough love may help her snap out of the fugue she seems to be in, too. My mother always responded to my tough love and we both benefited from it in the end. When she refused to shower, I discovered she was scared of the "slippery " shower floor in her memory care ALF so I bought her water shoes. That did the trick. Whatever the issue, resolve it for her (as possible) so the excuses have no validity to them. Head her off at the pass.
These words are not intended to be inflammatory or hurtful.....just to let you know you have the power to change a bad situation here! It's tough, but it can be done.
Good luck to you.
You speak the the truth because you've been there. Sometimes, many times there has to be tough love with a senior. Especially when there's dementia.
I've been called heartless and that I lack empathy and compassion because as a homecare worker, I always got the work done.
Sometimes there has to be a little meanness. Or a little intimidation. It's far easier to recover from a little hurt feelings than it is to recover from a UTI, skin breakdown, or sepsis.
It's sad and no one wants to be hard, but sometimes it's the only way.
My DH aunt, 96, with dementia and bed-bound describes her incontinence this way. It just comes. I don’t do it. It just happens. She has absolutely no control. No one suggests to her otherwise, she’s not able to clean herself. She’s 96. She has dementia. She’s in the NH where she gets changed and where she lives now. She is on hospice. For her, at her age and stage, it isn’t unusual. For your mom, something is way off.
Has her doctor ordered her physical therapy? That will help with the mobility issues, the dizziness and getting into the shower and to the toilet.
She would benefit from home health. This will give her (and you) some much needed help. Look up home health for the homebound on Medicare.gov. it’s covered by Part B. You need a drs order for an evaluation.
Is she being treated for her long term depression?
There is nothing normal about pooping your pants and having an attitude about getting cleaned up.
You are doing a great job of insisting she change before going out. She evidently wants to go out which negates the idea of depression somewhat.
I would use that as incentive. Don’t take her out if she doesn’t get cleaned up. Give her a time and leave her home if she isn’t ready on time.
Does she control the finances? Get a job outside the house. She knows how to clean herself. She has no significant mental decline her dr says, so expect her to behave like she is “normal”.
Why does she need a caregiver if she is normal and can ambulate? Does she have a walker?
If she is dictating how things will be done, you need to evaluate your life. If you are just stopping by for a quick visit, then that’s a different situation. It is hard to tell from your post but I’m guessing she is controlling you with finances and a needed roof over your head. If all of this has evolved without an exit plan for you, then it’s time for her to get clear that this isn’t easy or profitable for you to decide to spend the next 20+ yrs encouraging her to use her good mind and body for self care.
She is young to be in this condition but you won’t be when she is finally placed where she will need to be in order to get the care she needs.
It is a deal breaker for many family caregivers to care for someone bedridden and with incontinence. It will break your body and your mind.
Look into toilet training. Keep a chart of what time she normally goes. Let her spend some time on the pot every day…but not too long or other issues can develop.
I find arguing extremely stressful. Don’t argue with her.
Tell her once and stick to the plan. You are not helpless here. You need to call her bluff.
If she is able to take better care she will have more reason to do so. If she is not able you will have more reason to look for a neurologist or someone who can help you get her placed where she can get the care she needs.
In writing this it seems that you will have to decide how much you are willing to give of your very own life to cajole a physically and mentally able loved one to change their dirty pants.
If you are in a situation where you don’t feel you have a choice due to finances, know that you can do this for a job and be paid for it and leave after 8 hours.
I would make sure I wasn’t enabling her by my presence.
Look up Activities of Daily Living (ADLs) and Instrumental ADLS to see where she is. The social worker could help you with this. It is a good guide on how much help she truly needs and is useful to health care workers to determine when someone needs facility care.
We are here for you. Give us feedback so we don’t have to surmise the situation.
You mention a social worker; what role does he/she play in your mother's care? Who ordered the social worker to your home?
You mention bed sores. Are these present or do you fear they WILL be present? They can be deadly and must be prevented/treated.
The doctor has said your mom cannot be placed in care because she is mentally able to make her own decisions. That is nonsense. She is incontinent and unable to make any decisions about that, as well as about walking. She is clearly quite demented and needs a good neuro-psyc eval and diagnosis/prognosis.
Are you the POA? At present I hope not.
In short, you are getting no support and you are clearly now unable to take care of this woman 24/7 who is certainly incorrectly managed by her MD. When people aren't aware they have lost control of even the knowledge of having urinated and defecated they have serious loss, likely in the frontal lobes.
I would contact the social worker and tell her/him that you can no longer do this care. That you are leaving (if you live with her) on (provide a date) and will report your mother as a senior at risk with APS. You can ONLY do this if you are not her POA.
If you are POA call APS and see about getting her into care. They can assist you in resigning POA if you wish to do that. Were your mother without a child she would be in care. Tell APS you cannot physically or mentally now do this care.
If NEITHER of these things work then do the ER dump. Call EMS to have her taken to ER (any lie will do basically). There call in Social Services at once and tell them you cannot care for her anymore physically or mentally and that she must have placement. Do not accept her back into the home.
It sounds to me like you are down to DIRE circumstances and EMERGENT actions. That is why I have gone this far. I wish you luck. You are going to have to draw outside the lines to address this. You clearly have a miserably inadequate support system if all you tell us of it is true.