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?
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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.
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.
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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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?
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.
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.
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.
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.
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 ..
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.
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.
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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