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My mother is 94 and increasingly frail/semi-bedbound, but is bright mentally a lot of the time, and everyone assures me she "has capacity". This means she can absolutely make her own decisions about her care. For context, she has a history of being emotionally manipulative/narcissistic, which also complicates things.



She has two visits a day from caregivers, plus meals on wheels (all put in place by me/social services, in discussion with her, when it became clear three years ago that she was at risk of self-neglect). However she won't let the carers do anything, apart from give her her medication. Things are gradually deteriorating, to the extent that I often find her semi-naked, and soiled, which I find really distressing.



I have been told in no uncertain terms that I should "back off" and "stop being so anxious" - by the palliative care nurse, the care team lead, and the social worker. But it is very hard to do. After last night's visit I contacted the care team and raised my concerns, and the manager kindly visited her this morning, but phoned me to say she couldn't persuade her to get dressed, and we need to accept she is making her own choices.



How do I look after myself and "detach with love" or whatever the Al Anon phrase is? After the visit last night I am really struggling with feelings of sadness, exhaustion, and frustration. I know I can't change her behaviour - she is fully entitled to refuse the care offered - but how do I look after myself?



I have thought about not visiting as often, but struggle with feelings of guilt.



Can anyone relate?

You do it, by DOING IT.

It is VERY HARD to release the leash of guilt, but if you truly want to have a healthy, balanced life, the responsibility for that is not hers, but yours.

The situation that SHE IS CHOOSING FOR HERSELF, is PAINFUL TO YOU, but she cannot be forced to help herself if you are standing in the way of that happening.

My stubborn, feisty mother had it HER WAY for as long as I can remember, but when she fell in her home and shattered her hip, that ended that life.

After a relatively brief but dismal trial of life under my roof, where she was catered to and welcomed, I realized that I COULD. OT CONTINUE, no matter how much help I had or how the other family members thought, we placed her in the best nearby residential care setting that we could find.

She THRIVED THERE. They loved her, she loved them, and she died, happy and content, at 95.

You’ve done a lot for her, perhaps too much for either of you. Isn’t it time to give another direction a try?
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Reply to AnnReid
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Totally agree - except she will not countenance residential care. Tells me it will "kill" her as she has in her head that her own mother died shortly after going into a home. (She didn't. She lived another two happy and healthy years there.) And as everyone professional around me keeps reminding me it is HER choice at the end of the day.

So I do need to find a way to detach emotionally from it all, as I can't change her behaviour but can try to change my own reaction...
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You need to wait for the crisis that will take her into care.

My mom had a great saying--"some people are their own worst enemy".

Feisty does not serve one well as one ages. Lack of insight also is in play here.

You won't have to wait too long for this to come to a head. In the meantime, visit, call the care team EVERTIME you find self neglect and tell your mom with love that it pains you to see her this way.

ETA--re:residential care. At some point it won't be her choice any longer. She can choose where to go now, or someone else can make the choice down the road.
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We are going through this with my grandmother (96). To be fair, much of it has been going on since my grandfather passed 15 years ago - the day he died, in many ways she did too. But for a long time she carried on "living" her life day to day without any issues. In the last 2 years though we have seen the same level of decline that you mention.

My mother, an only child, is living with her now - as she refused to leave her home. She will get up and if mom didn't make her something to eat, she wouldn't eat. But if mom makes her something to eat - she will eat with gusto (but talk about how she is eating too much and make quite a few comments that can be rude, insensitive or manipulative as well. She too has always had a bit of tendency to be self-centered and my grandfather catered to her very much - she's very much the princess)

She is very unhappy - her life ended the day my grandfather died. She wanted to go with him. And she has made that known every day since. Quite frankly we were surprised she lived much longer. But she was given this time. She wants everyone around her to be as miserable as she is now. She talks about wanting to DO things but won't do them. She talks about how bad she feels but will not see a doctor primarily because she is scared of what she will find out. And at her age - even if they found out anything big - she already knows that she wouldn't accept anything invasive even if they offered.

As much as we would like (and would have liked the last 15 years) for her to pick herself up and do the "right" thing for herself - she has the autonomy to make those choices for herself. As unhappy as she is - that is unfortunately her choice. She seems to be content in her discontent. My mother gets out of the house as much as possible. She realized early on that SHE couldn't stay there with my grandmother and let herself get dragged into the oblivion with her. So she goes to the gym, she goes out with friends, she comes here (we go there too, but my grandmother actually DISLIKES visitors!!) she does all that she can to keep herself active and motivated.

My grandmother is content to sit in her chair and watch tv.

As gently as I can put this - you said "things are gradually deteriorating" and as much as I hate to say this because I know exactly what you mean - that's just going to continue. I think you know deep down that's true. She's not likely going to rebound and come back to you. This is probably the new normal. And when the care team are telling you to back off and stop being so anxious - it is probably more for your own benefit than anyone else's. They are often able to recognize things we simply can't or don't want to.

I know that is hard to do. Believe me I really do. The advice we give here - every word of it is hard fought advice that someone generally lived through themselves in order to give- or they are living. We don't usually say it lightly and we know that the words are easy, the actions behind them are hard. I never tell my mother that it's time to put my grandmother in a nursing home because I know that is not even something she is going to consider. I KNOW that, even while in my heart I know it would be the best option. Because I know that would be harder for my mom than my grandmother. It is not a decision my mom is ready to make right now, and as long as things are as they are right now, she won't make that decision. It would have to be something catastrophic to get her there, and we aren't there yet. But you have to weigh your own situation and decide if it is still working for you and whether you feel like you are physically, emotionally and mentally able to maintain this for the long haul or if you need a break.

Either way, you have to look at the big picture. You are doing all that you can, Whether it feels like that or not. You can't stop the passing of time. And you can only help someone who wants your help.

Hugs!
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Reply to BlueEyedGirl94
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The only person who can tell you if she actually has capacity is a doctor who gives her a cognitive/memory exam. If she hasn't had one, she should be given one so that you have accurrate information in order to make decisions in her own best interests.

Your profile says you are "looking after her" but based on your question/post I'm going to assume you are not her PoA. If so, this too is a decision she made and with which you must accept and make peace with. When our parents do a bad or unwise job of planning for their aging and decline, we will need to allow them to live out their "plan" and just make sure our own plan is an improvement.

If you are her PoA then you will need to get her in to the doctor on any pretense you think she'll believe, and then discretely ask for a cognitive/memory exam. If she is being found half-naked and soiled, she is not "bright mentally" or at the very least is dimming rapidly. If she was at the brink of self neglect 3 years ago... she is not bright mentally at all.

You need to decide if you're in or out regarding her care. How much do you wish to do? Do only what you want to do, not what others pressure you to do or from fear of being judged by others or from guilt. If you had a troubled relationship with her in the past but can't "let go" now... maybe you are still co-dependent in this relationship. Maybe consider talking to a therapist who will help you identify and defend healthy boundaries.

Everything about aging, decline and dementia is difficult and painful, so you are not imagining this part. But you need to take care of your own self as well. I wish you much clarity, wisdom and peace in your heart as you are on this journey.
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TurningWorm Sep 20, 2022
She has seen two GPs relatively recently (in past couple of months) and they both said she has capacity and no signs of dementia.

I personally think her high IQ (she was an architect by profession) makes it possible for her to some extent "mask" her decline, especially to people who know her less well.

And yes I can def see my own codependency and have done my own work and had some professional help with it, but a lifetime of behaviours is difficult to undo, especially with such an emotionally complex time as end of life.

I am PoA but cannot do anything for her health wise while the professionals: GPs, palliative care nurse, care team, social worker, all agree she has capacity.

My question was rather how to handle my feelings where I cannot change a situation I find distressing.
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"My question was rather how to handle my feelings where I cannot change a situation I find distressing".

I'm going to suggest by sorting.

The big sort is 'what you can do something about' from 'what you cannot change' - Mother getting old is the biggest 'cannot change'. But that may be later... You are still in the thick of daily tasks, yes?

So let's sort them.
What is high risky behaviour? Downright dangerous like wandering out alone at night, smoking in bed, climbing ladders. Stop, prevent, report.

Accepting Mom's medium risky behaviour as her *Freedom of Choice* Eg forgetting a walker & holding furniture to walk around, having cheese & crackers for dinner.

Letting go of lower risky stuff. Eg staying in nightwear some days, unwashed hair longer than usual.

I'll also suggest looking through a different lens.

At present you are (I guess?) wanting Mom to be hygienic - to look, feel & smell clean. Be dressed, be well nourished. Be thankful, cooperative & even gracious to her caregivers. All very reasonable wishes.

Though your Mom's lens, she wants (I guess?) to feel in control. To decide things for herself. So if the choice is have a shower or no, get dressed or no, whatever or no.. well saying no is a choice she can make. Plus, it is much easier to say No! than to negotiate alternatives.

Another view is some people strongly dislike accepting help. If a choice is between accepting help in the bathroom vs no help/stay unwashed/soiled they STILL chooce the no help option.
This may be called pride? Or stubbornness? Or due to their independant nature.

The key may be in the choices offered. Choices designed to allow Mom to still feel in control of her life.

Today is a shower day, would you like the floral body wash or the plain soap?

Here are some outfits to wear today - would you like the red or the blue?

In other words, setting up the situation so she has other choices besides no.

Maybe humour could help? (If yours & her style). Oh no, did someone steal all your clothes? Is that why you are still in your nightwear at 3pm?

Or honesty. Mom, I would feel happier to see you allowing these lovely care people to look after you. It's their job afterall.

PS I find music is the one of the best way to cope with anxiety. If you agree - add more to your life! Ballads to sing to in the car, disco beats to walk to, old time favs with your Mom.
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TurningWorm Sep 20, 2022
Brilliant and very practical answer. Thank you so much. Sense of humour def helps but sometimes recently I have been too overwhelmed. Your "sorting" suggestion is a great way to look at things. xx
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I agree with BarbBrooklyn. I am now only dealing with my mother who is in a nursing home but I was also dealing with my dad until he passed away about a year ago. My dad was living in his house with his dementia worsening and he had started having falls. There was no way I was going to be able to get him to leave his house to go into assisted living. Then one day an agency sent someone out to do PT with him at his house and found him confused with extremely high blood pressure. He was sent to the hospital and from there went to rehab and to continue his PT in a safe environment I then had him admitted to a group home. He stayed in the group home for the rest of his life, received very good care and eventually admitted that he needed to be there. It may take a crisis to get your mother the care that she needs but in the meantime there might not be anything you can really do.
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Caregiverstress Sep 26, 2022
This is the situation I find myself in with my father. He is in the moderate stage of dementia. Some days he’s very clear and some days he is not. He refuses to admit his memory is going, although he has admitted he’s “sick”, which says to me he knows he is not his normal self. He will never agree to leave his home. Not going to happen. I live 3000 miles away. All I can do unfortunately is wait for something that will eventually trigger placement. It’s a terrible dilemma.
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If you are finding her naked and soiled, and there is some group of caregivers who think that this is OK, something is wrong.
Are you POA? Your Mom needs assessment, because in spite of people telling you she is, at 94, in her state of naked and soiled, competent to make a decision to stay that way is disturbing to this nurse. She needed get dressed. A robe is fine. Naked and soiled is NOT OK.
In my opinion Mom needs a thorough neuro-psyc consult. If you are not POA, that isn't going to be easy to do any other way but calling an ambulance when next she is found in this state and taking her to ER, then enlisting the help of a social worker. To me it seems that the palliative care team is not enough if she is refusing their care. She requires in facility placement where the care will be GIVEN. I wish you luck. I think given she has two visits a day and is on palliative care is going to make placement a difficult thing. Eventually there will be a fall or serious incident. I am so sorry and wish you luck dealing with this.
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Turningworm,

Reaching out and asking advice from others on how to cope with your situation is a good first step.
How about as a next step you start seeing a therapist to help you through the guilt.
If your mother is often semi-naked and soiled in her own crap then does not have "capacity" as these professionals say she does.
She's showtiming for her caregivers. That means that for short periods of time she can seem like she's got it together.
There is absolutely no exuse for a caregiver who sees a person every day to not be able to see through the showtiming.
I was an in-home caregiver for almost 25 years. Believe me when say her caregivers have gone into the house and have found her semi-naked and soiled with her own crap. They aren't reporting to their supervisors. The most likely reason is that your mother is probably very nice to them and is easy to care for. No one wants to lose a client whose only care need is giving them their medication.
Next time you find your mother half naked and soiled with her own crap, take a video of this. Show it to her care coordinator. Then ask them if they still think she has capacity.
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TurningWorm Sep 20, 2022
Yes they always say how "lovely" Mum is. I am sure she is an easy gig for them.

One time I had popped round (thank goodness I had) and found her lying semi-naked on the floor surrounded by excrement. She had fallen. I called paramedics who came and evaluated her. We spent a lonnnnnnggggg time at A&E (12 hours plus) and eventually got a gastroenterology referral - which wasn't really much use as Mum is on end-of-life care... when we saw the consultant he offered colonoscopy and gastroscopy but did say that if they found cancer it would be unlikely Mum would be offered surgery or chemo or radiotherapy, given how frail she is...

The problem is nothing is "joined up". That's what the palliative care team were meant to be for - recommended by the GP - and a huge relief to me at the time. But nothing has changed, not materially. If Mum is still soiling and not wearing clothes etc. I raised concern on that two weeks ago and the palliative care nurse went to see Mum and then called me, very brusquely, to inform me Mum was "fine" and I should "stop fussing"!!!!!!

Thankfully I have a counsellor - ironically also through the palliative team - who TOTALLY GETS IT. She has just today offered me an appointment - it's been a while - and I am so grateful.

It's dreadful. The whole thing is dreadful. But I just have to find a way to navigate through it without breaking, emotionally and physically... I have to accept somehow that these people are doing all they can. It just seems wrong to me, so wrong, that Mum gets the choice to live like this. It doesn't seem reasonable at all.
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I'm , like, one minute behind Alva a lot of the time--funny.

I agree: finding her half naked and soiled--how can that be considered OK by any standards? Does her Dr. know she's like this? People can playact very, very well for the doctors, who are super busy and of course not invested in the patient's overall mental health if all they hear is "I'm fine" and then they can pass the dementia 'test'. A more telling sign is the lack or desire to care for themselves.

Right before mom passed, she stopped 'dressing up', which meant she simply got up, washed her face and combed her hair and put on a fresh housecoat or muu-muu. Which she wore all day and had to explain to everyone why she was doing that. We didn't care, she was still semi-bathing and keeping as clean as she could. She never went anywhere during/after COVID and so staying in comfy clothes and not hassling with pants and tops made it so much easier for her to function, day to day. She was TIRED.

Since she was incontinent, she did always wear appropriate underwear. I know that had she given that up, we probably would have had her evaluated. She lived in dread of a facility and was able to die comfortably at home.

You are probably waiting for that 'fall' that seems to signal to the world that placement in a NH is imminent. How awful to not have a 'choice'. The EMT's show up and she's half naked and soiled and their fresh eyes are going to see what you see and they will make a report of a Sr in danger. Then she will lose a lot of her autonomy--which is what she's obviously desperate to hang on to.
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BurntCaregiver Sep 20, 2022
Midkid,

If she's desperate to hang onto her autonomy she needs to accept hands-on help from her caregivers.
I've had lots of clients like this who were the sweetest and nicest people to their caregivers because they were showtiming. They didn't want any help and thought that by being easy-going and nice to the caregivers that they'd think they were fine and go away.
No caregiver wants to tell some lovely old senior that they're soiled with their own crap. Or that their clothes are filthy and they need to get washed up because they smell. No one wants to do that and some caregivers will just leave well enough alone and ignore it. I never did because it's our job as caregivers to handle it.
I've had clients complain that I was mean, but their families never let me go because I got done what needed to be done for clients and didn't ignore it because it was awkward or unpleasant.
The OP needs to take pictures and start being insistent. Those caregivers coming in twice a day are not there to just give the mother her medication and smile at her. They have to be forced to do their job or get replaced by ones who will.
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Mom is on "end of life care". "My mother is 94 and increasingly frail/semi-bedbound" Why is she being left alone? Just because she has "capacity" should she be left alone? What if there's a fire, could she get out of the house. Someone is in La La land here and its not you being "anxious". Its your gut telling you something is just not right. Finding her half naked on the floor is not right. Since everyone, but you, feels she has the Capacity to be alone, then I guess they all bare the responsibility if something happens.

If Mom is actively dying, I would not put her through a series of tests. I think what I may do is hide a camera someplace where you can watch Mom remotely. For your peace of mind. I agree with Burnt, Mom being half naked is not the first time. I would love to see what the aide does the next time this happens. Then you can show the person in charge the tape and ask why you were not notified Mom fell out of bed.

I have had a Nurse try and intimidate me. I kept telling the desk something was wrong with my mother and being told my Mom was being transferred that day. Finally a Nurse walked in and asked me what I thought she should do. I told her that she needed to call the Dr. and tell him Mom did a 180. Up till then no one seemed to notice that Mom hadn't eaten breakfast because she couldn't. That she was breathing funny. I am sure if she had been sent to Rehab she would have died. Called my daughter and she came and thought Mom was dying. She looked up Moms antibiotic and found it had penicillin in it. The Hospital records showed Mom was allergic. My daughter was in her scrubs. Marched out and told the nurses they were killing my Mom. Boy, did they jump then. Dr gave her an extra day which worked. Mom was herself within 24 hrs.
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TurningWorm Sep 21, 2022
Mum wants to be left alone. Ideally, she would prefer to have NO care visits, and NO "Meals on Wheels" - just herself, her TV, and her red wine. It's been a slow, gentle, diplomatic, increasingly assertive, process thus far over the past three years of encouraging her to accept even the tiniest bit of support. We have the minimum number of hours that the council/NHS says is viable: 45 mins in the morning and 15 mins at night, ie 1 hour/day (plus meals on wheels) - except Mum only lets the carers spend a minute or two giving her her medication, nothing else. Once a week she grudgingly accepts a sponge wash. So they probably do about 2 hours a week in reality.

It is on her assessment record that she is vulnerable and at risk of (a) self-neglect and (b) falling - but because she "has capacity" (!) - everyone (GP/Palliative care nurse/Care team manager/Carers/Social worker) keeps on and on and on and on reminding me "there is nothing we can do - she is free to make her own decisions".

Trying to keep her afloat and plug the gaps has worn me out over the past three years and I have realised it needs to stop. It's only when I stop enabling her foolishness that perhaps, just perhaps, someone will actually SEE she isn't safe. So I have decided to step back. I have decided to do this before but my boundary was "leaky"! This time (having been in hospital myself with a stress-exacerbated condition eight weeks ago) I am more serious about it.

It doesn't feel "right" to pull away - but then neither does grinding myself into the ground for someone who is behaving irrationally. (She manages to pull herself together at times - "show-timing" I think someone called it - so perhaps isn't as fragile as she likes to make me think she is...) and maybe someone else will be forced to step in as I step out.
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Sadly, we are going through the same thing. Lives in a pig sty, obvious self neglect, but unlike your situation, she is only 80% there. She has completely isolated herself from her rather large family because she will not leave her home. We’ve had to call social services on her, but they are limited by what her doctor drives. Meaning, whether to execute her health care proxy. He is already the worst Doctor in his field not helping my MIL. He just keeps getting the money he makes off of her. With all that said, we have had to back away and tell her that we can’t stand watching her wither away when we could put her into a facility that is actually really nice with a lot of social activities to get her to re-engage. She is addicted to Ambien and her doctor won’t stop prescribing it now for TEN YEARS!
It is truly shocking to see her doctor (aka drug dealer) neglect and add to her own self neglect. We don’t speak to her anymore. For our own sanity, we have had to walk away as we were advised from others. It truly breaks my heart to see this happening legally to a mother with such a loving family. However, she is tearing us all apart because of her behaviour, manipulation and stubborn behaviour. I have cried enough tears that I’ve had to let it go otherwise, it will tear my marriage apart next. She is only 80 years old and could have such a beautiful life again, but she (and we) are broken.
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BurntCaregiver Sep 26, 2022
Amerimum,

You do what you have to do for yourself and your family. It's heart-breaking for families who have a stubborn elder like your MIL. You're not alone many families have this. In my own family my cousin who I love is a very sick person and lives like a derelict. Not a drug addict or alcoholic either but is a compulsive liar and very immature. They will most likely become homeless in the next few months. I have taken them in already a few years ago. but I cannot again. All you can do is hope for the best and help from a distance if you can.
Your MIL will have to take a fall or get sick from something and the state will place her. There's nothing you can do.
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Replace the word guilt with the word goal for yourself.
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Beatty Sep 26, 2022
Ooh I like this VERY much!
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hug! you said:

“Once a week she grudgingly accepts a sponge wash.”

she verrrrrry likely has dementia. that’s how it starts, and with a few memory mistakes here and there.

it’s not normal for anyone to only want to shower once a week. it’s very normal/common, if one has dementia.

when dementia starts, no doctor will diagnose/say “dementia”.

doctors only diagnose that, when the dementia becomes extreme/undeniable.
—this is done on purpose. if doctors diagnose/label dementia too easily, then family (and non-family) can take advantage. a “dementia” label can lead to taking away certain rights from the elderly person.
—instead doctors prefer, as much as possible, to declare someone “mentally competent”
—of course the doctors are aware that the elderly person is starting to have dementia. but to protect the person, doctors will only give that label if the situation is extreme.

——
your mother really sounds like she’s starting to have dementia.

a friend of mine’s father started like that as well. very lucky however: the father was totally willing to accept help.

i’ve heard it’s very common for fathers to be more open to help. mothers often aggressively refuse help, saying they’re “independent”.

i have another friend (mother aggressively refused caregivers) (beginning of dementia). the only way my friend finally convinced her mother was by saying:

“don’t you want me to sleep at night? if you had a caregiver, i’d sleep much better. i worry about you a lot at night. the next day i go to work exhausted.”

——
anyway, that technique doesn’t always work, especially since some mean mothers actually WANT you to worry: they’re glad you’re stressed out.

——
and then there are also elderly people who’re sinking into depression.

they need rescuing.

——
you wrote:
“I often find her semi-naked, and soiled”

really, this is exactly what dementia looks like. it’s not normal.

i hope you can somehow convince her to have real caregivers: that she allows them to shower her, etc.

it’s not easy.
sometimes it takes a long time; finally one manages to convince the elderly person.

some people think: sometimes all you can do is wait for a big crisis to happen.

i hope you find a way. a mother often won’t listen to a daughter. but maybe she’ll listen to someone else you know. i’m sure you’ve already tried all that. hug.
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I did not read any of the other replies... but my advise is... do not back off... this is your mother, you know her best. However, let mom be. If she isn't hurt of suffering let her be. If she is soiled or half naked then something needs to be done as reminding her that if she cannot keep herself dressed then she will need to go to a home or someone will need to watch her 24 hours a day. I used "the doctor said" line. Which seemed to work for my Daddy. Find a line to use with you mom.
prayers
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I think the more you share & reach out here & to friends, the better you will be! Unpack-unload. I do not think we will ever be able to process & make sense of their decisions. 94 & is able to challenge you + Caregivers. Feisty. How my Mom will be if she makes it this far. Shite. Dear God... Your Mom is choosing this for herself!!! It is NOT YOUR FAULT!! Keep trying to release.
Caregivers are able to keep at arms length emotionally. Deep breaths in & out. Take a walk...
How often do you visit. I only go twice a month.
Maybe you can gift her with a lightweight robe? Maybe she finds all her clothes too hot & constricting?
Seeing my Mom once a week was killing me: emotionally. I did that for a few mos after my Dad passed in Jan. Pivoted to twice a month. 2 hrs up drive. My Mom has no one else because she has alienated everyone. We are very different. She is not social. Not kind. My Mom is NPD Borderline. Wish I could post our visits on video here.
So many of us see our situations in those of others. This forum has helped me so much..
Hang in there... You are doing all you can ..
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THE CYCLE OF LIFE:

Please seek out a grief counselor who can chat and refer you to a Psychiatrist who can prescribe anxiety meds if that is what you need.

Please consider learning how to meditate: Mindfulness MeditatIon - do a search for a class in your area.

https://www.washington.edu/counseling/2020/06/08/the-stages-of-grief-accepting-the-unacceptable/
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TurningWorm: Your priority is your disabled DH (Dear Husband) and your 13 year old and 17 year old children, which you mention in your profile. Albeit sad that your mother is refusing much of the twice a day carer help, YOU cannot and should not hold onto guilt; there is none. I cannot fathom why she is letting the caregivers do medicine maintenance AND THAT'S ALL. It's rather foolish - what are they doing with all the unused time, pray tell?
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Does your mom let you do the care for her that she won't allow others to do? If so, she is being manipulative, IMHO.

Or, as others have mentioned, it is likely that she has dementia. It is a roller coaster. Sometimes, they seem normal. Other times, they seem crazy.

Good luck.
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TurningWorm Sep 27, 2022
Yes she does let me do it: hearing aid batteries and insertion, dressing her, brushing her hair, getting her meals - all the while complaining that I don't do any of it "right" - her meals aren't varied enough, she hated the hairdresser I arranged for her, I always put the "wrong" arm in her clothes first, she hates the clothes I pick out, the hearing aids are uncomfortable/not in right, or then swinging to "what would I do without you. So few people have such good daughters. I don't know how I would manage without you" etc... Writing it down, the manipulation is actually quite blatant, I see it.

She wanted me to cut her toe and fingernails but I drew a line (having recently drawn a line over this with my partially-disabled husband and hired a podiatrist to do his feet). She then endlessly complains about the cost (she can afford it). I swiftly drew a line over handling and cleaning her (absolutely grim) false teeth, although was startled into doing it once as I didn't register what she was asking me.

So yes, she totally manipulates me. Always has done :-(

This week the carers asked for a new vacuum cleaner as hers is broken - so I sorted that out. Mum is now furious that I have spent money on a machine when one wasn't needed as "it only had a minor fault". I can't win.

So... for my mental and emotional health I am taking a break from her at the moment.
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I'm following for answers. My mom is still a bit earlier stage than yours, but they sound VERY similar in character/stubborness, but also the "leave her to fail" message is exactly what I get from carers here (Canada). I get the idea of agency, but our mom's are not making fully formed and cognizant decisions, so how DO you let them have the repercussions of neglect when they are supposed to be cared for.

A friend said that I'm not the mom. But I am responsible for her safety, health, and well being. When I was three and didn't want to eat healthy food or clean myself, my mom made sure that happened. My mom is not three, but has the decision making and cognizance of a child...so how is that balanced for care?

Great question, and looking forward to input. You aren't alone in all this, though. 😊
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Reply to VenusFangs
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TurningWorm Sep 27, 2022
Thanks so much for sharing your experience - it really helps to know we're not alone in this.
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If you are POA, then can't you fire the whole team supposedly helping her and not doing their jobs? I am speaking from her doctor on down the line. When you mention her palliative care, is that hospice care? Because true hospice care (which it sounds like she is eligible) comes in and will do a good job. It sounds like her whole care team needs to go. I really hope things change for you in this horrendous situation. Please hang in there!
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Reply to blondinthesky
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TurningWorm Sep 29, 2022
Unfortunately I don't have any "power" in the POA until she is deemed to no longer "have capacity". It has driven me almost to the edge trying to square this particular circle: it seems so bizarre, wrong, that someone who plainly needs help and is plainly making very peculiar choices for themselves, nevertheless "has capacity". The GP explained it, very kindly, to me, like this: if you were 25 years old and trying to be independent and ended up in a complete mess but were refusing help, would people say you "don't have capacity"? Or similarly at 45, or 65? We can't take people's autonomy away simply because they make poor life choices, at any age - this is no different.

My issue with that - which is the official NHS line so is at least consistent among ALL Mum's "caregivers" (social worker, palliative care nurse, care team, GP, hospital consultants) - is how to accept that, when the results of the person's poor decision-making are so appalling?

Someone without "FOG" and/or codependent behaviours, would, I think, find it easier to separate from this situation and see it objectively. I am getting there... and this forum is hugely helpful, as is a counsellor I have started seeing.
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Re manipulation:

"Toenails needs clipping".
(Or insert any other task that is on their mind).
Family member (in the FOG) picks up the hint & trims them.

What a power trip! 👑
Person speaks a want/whim/wish 💫 & bling! It is granted.

Training complete.
Forecast: more manipulation.

Try staying in the clear open skys!

Toenails need clipping.
Ok.
Podiatrist cost is only subsidised every 12 weeks or so.
Ok.
Then I'd have to pay inbetween.
Ok.

IF you get an open request, hear it, consider it, accept or decline it as you decide.

This training is the other way. For people to take responsibility for their own needs, for their own feet. To ASK for what they want in an adult way.

It's not easy, not when trained from birth.. but stop, breathe, leave space.
Space you can be separate people.
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TurningWorm Sep 29, 2022
Brilliant! Yes, exactly this. I kind-of need things spelled out like this and then I really SEE them. Thank you.
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As a caregiver, some form of this situation is fairly common among patients. They don't want to put fresh clothes on- or clothes on at all- because they are just going to soil them again fairly soon, and don't want to pay money to keep doing all that laundry or keep buying the incontinence supplies or use them at all due to a self-imposed stigma. Caregivers can't force the care- can't change a patient's clothes against their will or bath them if they say no. What happens a lot is these stubborn clients keep getting new caregivers, because leaving them like that is considered abusive yet you are also prohibited from forcing the care, which would also be abuse. So a caregiver comes in and sees the situation, says they can't work effectively with the person and changes clients. Some caregivers develop a knack for getting the patient to agree to baths and changes of clothes on a regularish enough basis that everyone is comfortable enough. They might be being "good" for the caregiver they like enough to want to keep, and acting up for the relative they want to guilt trip or keep coming over to visit and care for them especially. It's exhausting for the family and caregivers, and you can see the patient is sad, scared, doesn't want to be ignored but doesn't want a type of care that is embarrassing. Most people just get used to the situation being "good enough"- meaning, the patient is fed well enough, took their meds well enough, has clean clothes regular enough to avoid rashes or infections, or is kept warm enough not to get sick if they insist on going around unclothed and has someone going around changing sheets/absorbant pads where they like to sit or lay in bed. It is shocking when you're not used to it, but there are many, many elderly and disabled that the caregiver or family member coming around and coaxing them to eat, bathe, and change is the extent of their human interaction. We all do the best we can to give them the best quality of life possible. You just learn to disregard any grumpiness/nastiness, respond mildly to attempted guilt trips, and focus on what you are there to do. You keep trying different things, some clients will be agreeable to bathing/changing if offered a special meal or treat or enjoyed activity. You try a few ways of coaxing then back off when you sense that they are just not going to agree or are being deliberately difficult for more attention. Use distraction, see if you can get them to join you in some chore or light exercise. Then you offer it all again in a little bit. Some clients have lots of family members stopping by to check up on them, some, no one at all. Sometimes after the client refuses care, a family member will step in and force a bath or change of clothes and you watch a disturbing struggle. It's much better if you can find a way to get them to agree as elderly skin is delicate and they could be harmed if there is a struggle. It's not unusual for clients to wear the same clothes day to day but have several outings or visits planned a week that they will agree to bathe and dress for. Doctor visits, church, memory care program, and that becomes your "good enough" routine. If they don't end up accepting the care at least "good enough", they end up in a hospital and then facility before too long. I've seen, "you don't want to end up back in the hospital, do you?" become the phrase that successfully got an uncooperative patient to accept a bath and clean pajamas.
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Reply to CassandraMae
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It is hard to see somebody you love not take care of themselves or allow care. Since she is mentally competent, you need to accept that this is how she chooses to live.

Please spend some time with a counsellor weekly to discuss your feelings and how to handle "boundaries." Also use time with the counsellor to create a plan of what you will do when your mom displays distressing behaviors.
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