Caught by Surprise and Out of My Depth

This situation, to me, is long and complex, hence the long post. Thank you so much in advance if you manage to stay with me to the end of it. I’m not the kind of person who is used to feeling lost but I’m suddenly feeling very much out of my depth.

In Summary
I have been caring for my elderly mum, because of a serious physical disability, for the past 18 months. Our relationship has taken a severe blow after a seemingly trivial incident turned bad, possibly because I hadn’t noticed and wasn’t prepared for the emergence of mental health issues. Now I don’t know what to do.

The Detail
I normally care for my mum due primarily to physical disability.

However, over the past 6 months or so (it’s hard to put a time on it), mum has been behaving a little strangely every now and again and I never really joined the dots. She is generally quite coherent and anyone meeting her would say she is perfectly OK. She appears to have no particular memory or other cognitive issues and proudly recalls things from the most distant past; in other words, she’s just fine … isn’t she?

Anyway, these strange behaviours, or incidents, started with mum starring at my wife while I was talking directly to mum. She would blatantly look her up and down, repeatedly and very overtly. If I stopped to ask what she was doing, she would deny doing anything at all except for listening to me, and she said these incidents were all in my head. Of course, my wife certain doesn’t agree.

Then there were some strange incidents when we have talked about our past on a few occasions. I recalled and mentioned something significant from my own past, and mum argued that it never happened to me. Mum recounted some terrible things she claimed my dad had done in the past, all relating to affairs with other women and stealing money from her. These claims were just so utterly implausible given times, places etc… She recalled past disputes with specific neighbours concerning things they had accused me of doing, as a child. I can tell you with complete confidence that no such disputes ever happened.

She has also reported to me two of the most inexplicable telephone conversations that simply could not have taken place. They’re broadly similar in their nature and composition. She would tell me that a person would call her in disbelief or shock, because they had received a call from some other party, who had become aware of a plan or situation mum had discussed in total confidence with me alone. The question was, how on earth could either of the third parties be aware of a confidential discussion they couldn’t possibly know about. Mum emphatically denies talking to either and, actually, it wouldn’t even make any sense for her to do so anyway. These calls didn’t happen. Mum clearly must have imagined them, after presumably dwelling on the subject of concern.

Now we’re finally getting to the crunch point. So far I hadn’t thought about the above incidents as anything other than a bunch of unrelated, oddities. Then following happened.

Last week mum had something of a meltdown with me. It started with a ridiculously minor disagreement in which she contradicted something I had literally just seen happen. Before I knew it she was fully re-enacting, with me, exactly the way she used to react with poor old dad when they argued. She constantly accused him of having affairs, being aggressive and screaming in her face. Now she was accusing me of the same, except for the affairs. It felt quite perverse and very unsettling. Thankfully, she demanded that I leave and I didn’t need to be told twice. I feel guilty to admit that I felt like a weight was lifted the moment I closed that door behind me.

Obviously I have a duty of care and I have been administering that, but we have talked only minimally and we’re really not in a good place at all. She’s talking weirdly, about truth being revealed before her, in all its ugliness, of how I have really felt about her all my life. This just bears no resemblance to a simple dispute in which I told her to stop being so rude all the time.

In desperately trying to find a way forward, from here, I’ve done some reflecting and some research. I suspect all these things I’ve observed might have been confabulations, and if so, in my ignorance I have probably not managed these situations at all well. If this is the case, mum isn’t just a difficult person with a physical disability. She’s now suffering some from some mental issue and I’ve probably done exactly the wrong thing and blown any security or trust she has had in me.

What on earth do I do now?
By the way, mum would angrily refute even the notion she might be experiencing any problems with her mind. Am I completely off track here? Is there another possible explanation? Is this normal and am I the one with issues? To be honest, I’m not sure if I entirely know any more.

Thanks for any help/advice offered.

Hi Craig, I typed out a long reply and my daughter leant over to say goodnight and accidentally touched the screen losing the lot!

I hope this makes sense now as I can’t remember what I said…

There are a number of reasons why someone might act irrationally such mental health as you say, dementia of course, personality disorders or even a UTI (I knew a lady that was convinced the Russians were hiding in her wardrobe and she was horrified when she came out the other side after a course of antibiotics!). Without a professional investigation you won’t know for sure of course but it could be really helpful to have a good think over the past looking at previous incidents, pee-curser events, how long it lasted, what else went on around the same time etc. If anyone else is involved in her care, they might have some helpful insights too but obviously it’s hard when someone is already suspicious. Regarding professional help, do you go with her to appointments or having any ‘in’ with her GP etc? Either way, you can always speak to them and tell them your concerns even if they can’t discuss it with you. I know of several cases where health care professionals have called in or requested a visit etc to carry out ‘routine screening’ or asking pertinent questions when they are visiting for something else. It’s a bit underhand, but sometimes they only way of moving things forward.

I have sort of similar situation where my dad can be incredibly rude & irrational and bordering on aggressive when he is fixated with something. It can turn around in hours but is usually weeks and is long term personality issue in part due to a family history of neurodiversity. If it were me, based purely info you’ve given (so I don’t know if she can manage at all without you, if you WANT to talk away, if anyone can help out etc) I would go in with flowers and asking for a chat to clear the air, maybe even apologise for what happened even though you don’t really know, take the high road as it were in order to get back in so you can be around with a new awareness of looking for ‘clues’. Write it all down, dates, pre-curser events etc. It can all help to build a picture whenever you can manage to get a professional interpretation of events.

Wishing you well - it’s tiring not knowing what you are walking into each visit.

Welcome to the forum. Sadly, it does sound very serious.
It may be difficult to get a doctor to act without evidence, so keep a diary of what is happening, and if possible, record an outburst on your phone.
How old is mum?
What physical problems does she have?
Does she own or rent her home?
Have over £23,000 in savings?
Do you have Power of Attorney?

Your answers will help us suggest how to best deal with this situation.

Hi ‘Henrys Cat’, thanks for going the extra mile to start over after losing your original reply; I’m grateful you did.

Mum is extremely private and she doesn’t have any significant ongoing medical issues beyond her main disability that I’m aware of. There are no regular meds, apart from pain killers, no nurse or other medical professional visits, just the occasional blood test. She stubbornly stays well clear of the medical world. When and if I do get her to attend a medical appointment, the door is firmly closed behind her. So, at this time, and without a stronger history, I’m not sure I could access her doctor.

Your point about the UTI struck a chord with me. She never drinks unless she’s properly thirsty first, and even then its only a few sips. She claims this was advised by her doctor because of her kidneys. I don’t know if this is right or not. I do think she is frequently dehydrated in my opinion. No consequent UTIs as far as I know, but it might be directly effecting her mood/behaviour at times. Also, she does have trouble sleeping sometimes too, due to pain and occasional nightmares. Then again, I’m not convinced. These potential causes were present long before the weird incidents started.

There’s no chance of a surreptitious assessment as we just don’t have any visits to use as cover; though to be honest, I think the odds of anyone seeing something odd on one random visit would be rather remote.

I think you’re last suggestion is the only one with any chance, though easier said than done. Getting in and being able to react better in future, armed with some knowledge, while properly recording a history, sounds just right. Part of the current ‘crisis’ though, is that once you blow it with her, that’s often the end. There are other estranged children who can vouch for that. Hence why I’m quite so concerned. However, faced with the alternative of strangers from an agency, since there are no more children left to choose from, she might just rethink … I just don’t know for sure.

Hey, thanks so much for your kind response. This has really helped me to think through it more objectively. Its very cathartic just to be able to open up to someone else who is having broadly similar experiences. Thank you for your input and help.

Hi ‘bowlingbun’, thanks very much for responding.

Yes, I tend to suspect we’re heading into deeper waters here, and that I’ve probably made a bit of a clumsy mess of things just now through my ignorance.

Both you and ‘Henrys cat’ make a good suggestion of keeping a log moving forwards, and if I can first pull the situation back, I’ll be doing just that to help as things may develop.

To answer your questions, she’s in her mid-80s. She gets higher rate AA. She doesn’t qualify for any means tested benefits at all. She does own her own home.

We have talked many times about wills, power of attorney, and lasting power of attorney. PA and LPA will remain a no until the last possible moment. She doesn’t really accept that such a moment is unlikely to make itself known. Ironically, she is altogether too anxious about the possibility of losing control.

Hi Craig. Just a few small comments:

  1. You don’t have any duty of care. Legally, only the authorities have. And yes, I know it doesn’t feel that way.

  2. At this point in time, LPA would not be possible as she appears to lack the ability to make a decision: rehydration and dealing with any UTI would bring about some improvement, perhaps.

  3. Your post suggests that she has been this way in the past with your Dad? Is there a history of this sort of thing, because if so it may be linked to a long standing issue, either mental health related or possibly related to UTIs/kidney problems (if your comments about doctor’s advice re kidneys was related to kidney problems).

Re the kidneys - I’ve not heard of people being advised not to drink too much if they have kidney issues, quite the opposite, but I don’t know much about it. Dad has kidney issues after a ‘long lay’ and had a kidney injury (which isn’t an actual injury - stupid terminology!) while in hospital in December so has to drink more than he would like. He has a UTI now, no increased irrational behaviour, just a lot of pain.

Re the drs - you are quite within your rights to contact them and say “this is what I’m worried about” and leave it with them. If nothing else it’s on record that you voiced your concerns, it may also for with something they’ve noticed before or give them something to look out for, especially as it’s so difficult to detect.

Similarly with the visiting HCP - they can visit for anything. I spoke to my dad’s GP a good few months ago (before he went blind and needed care) and they didn’t reply but a frailty coordinator visited him at home saying it was routine for people of his age, apologies for delay but covid etc. She handled it really badly - asking to use the loo but effectively snooping rather than just asking about equipment he uses etc.

What would happen if you didn’t visit? Do you have to do much for her?

Hi ‘Charles_2112’.

Thank you for the points you’ve made.

On point 2, I certainly have long since realised that she was never going to make appropriate advance plans, even though some had been discussed (see my preceding reply to bowlingbun). Sadly because of this, whether its too late or not for her to consent to anything is largely a moot point anyway. I’m resigned to that.

Hi ‘Henrys Cat’.

Yes, the whole kidney thing is perplexing. Fortunately, there is regular blood monitoring. This, at least, gives me some reassurance that nothing too drastic is going unnoticed physically, even if I’m not so sure about mentally.

Yes, I do have to attend a lot, as well as make regular calls to make sure she’s ok. She can’t physically get by without support. That’s also why I was so concerned, because we would really need to act very quickly to get alternative support in place if she decided to reject any further support from me.

Incidentally by way of update, she does seem to be slowly getting beyond the whole meltdown thing, which is surprising me to be honest. I think maybe my, now more informed, responses could be helping. It is too soon to say for sure but I’m hopeful and, thanks to everyone, I’m developing a better awareness and state of preparedness. Thank you all!