Very Elderly Mother has become impossible deal with

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My 100 year old mother is now impossible to deal with. She had a fall 5 weeks ago and broke her second hip. She lives alone with carers provided by social services and the reason she fell was because she refused to let her teatime carer prepare her a meal because she was “fat and deaf”. She is a truly unpleasant woman, will only do anything on her own terms, is rude, opinionated and politically incorrect in every way you can imagine. She has always been this way to a certain degree but age has just made her much much worse, I am an only child so I feel the responsibility to make sure she is OK falls on my shoulders. I am basically her fetcher, carrier and doer. She cares nothing for me and takes every opportunity to carp, criticise and blame me for everything that is wrong in her life. I have worked in the “social” field for many years and do understand that she is frightened, frustrated, angry and bitter with everything in her life and has been for many years; my father (who I now believe to be a saint!!) died seven years ago and since then she has transferred all of her hatred to me. Before the fall, I had decided to limit my visits to her drastically - I then visited 6 times a week and was gong to cut it down to 3 - however, her fall intervened and I felt that during her stay in hospital (and now rehab) I should ensure that things were right and progressing.

I asked for Adult Social Services to be involved as she has mental acuity but does not make rational informed decisions, i.e. I can go home as I can walk around using my frame and the furniture, when she couldn’t even stand up. SS decided that as she has mental capacity she can make her own decisions. Apparently sitting in a pool of urine and being surrounded by so much clutter she is at risk of falling all the time is a decision that she is able to make and if she wishes to live this way then that’s OK. A CT scan at A&E apparently showed no sign of changes to the brain so the mental health nurse ruled out dementia, which would have been at least some reason for her vile behaviour.

Following a very fraught visit on Saturday where she accused me of taking money out of her building society (only she has access), stealing her jewellery (a common complaint), stealing money, cheating on my husband, denying her physiotherapy treatment, breaking into her house and spreading rumours about her, I decided to give myself a rest on Sunday and leave her to it, especially as it was my birthday and my husband had arranged to take me out. I am back there today lugging the latest lot of “requirements” - money (she feels I am unreasonable that I will not let her have £1,500 cash in hospital with her), shoes she cannot walk in, clothes etc. and not looking forward to it at all. Depending on how things go I think I shall be telling her that I will now only visit her every other day (now that she has been moved it involves a 45 min journey each way)

I will happily do all third party admin for her like appointments, banking, liaising with SS, carers, doctors, dentist, DWP, paying her gardener etc. but no longer want to have any real personal contact with her. In a normal relationship you could talk to each other but my mother doesn’t do conversation in any shape or form. She either refuses to engage using closed body language and turning her face to the wall or shouts and screams abuse at me.

I have my own physical (one quite serious) and mental health issues and for my own well being cannot allow her to push me into that dark corner of my mind again. Sorry this is so long but my reason for posting is to ask if anyone has experienced this same extreme type of situation. Incidentally, I could feel a little sympathy for her if it were not for the fact that her behaviour towards most of the hospital staff is reasonably, but not totally, civil but the minute I appear everything changes which shows me that she is able to control her behaviour when required.

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However have you kept going so long? I have nothing but admiration for what you have been doing. I myself have not dealt with anything so extreme (I would have called my own mother difficult, but no more than that). I am posting so you know someone is reading and I am sure others who can relate more to your situation will be here later.

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Dusty, thank you for taking the time to respond. It does help knowing that through this forum I am now not totally alone.

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Yep , I echo Dusty.

One thing that leaps out from your posting … CHC / NHS Continuing Healthcare :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998

Ever been considered / offered / applied for but refused ?

AGE UK … on their radar ?

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998

Definately worthwhile making contact.

As for home care services … who can do what for your mother ( Instead of you ! ) … a new thread will be of assistance :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/home-care-services-a-guide-from-the-money-advice-service-web-site-37984

Includes both needs and carer assessments amongst a whole zoo of other information … especially on the all important financial
issues … who pays for what.

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Many thanks Chris from the Gulag She does have LA part-funded carers 3 times a day. Before the accident I had asked for a reassessment because her needs are greater now - due September 2019. Problem here is that she refuses to co-operate with them, either makes them leave, doesn’t speak to them or makes them cry. I refuse to do the work that the carers are there to do but she would rather go hungry than co-operate. There are one or two she will work with but they cannot do all of the calls. Her care provider threatened to withdraw their services if she did not modify her behaviour. CHC - have been told that she does not qualify because she does not have major ongoing health needs but I will have another go now following this latest hospitalisation. Carers assessment has been done but, surprisingly, nothing they can do other than offer support through group meetings etc. She is not on the Age UK radar, so thanks for that tip, I will investigate that avenue. Its really good to get other points of view as most people when I speak about my mother think that I am exaggerating and that no-one can be that difficult and challenging. Personally, I believe that she may have borderline personality disorder and is most certainly a narcissist based on my working experience. However, doctors seem to think differently as she speaks to her audience and tells them what she thinks they need to hear!

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Your welcome.

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Its really good to get other points of view as most people when I speak about my mother think that I am exaggerating and that no-one can be that difficult and challenging.

One easy way of finding out ?

Let anyone of those replace you for … a fortnight … suits / academics included !!!

Hospitalisation ?

Potential discharge … THE BIBLE :

Being discharged from hospital - NHS

CHC / NHS Continuing Healthcare … considered as part of any discharge plan.

In short , by the book or … NO DISCHARGE !!!

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I have a difficult husband who is not acting in his best interests but apparently has ‘mental capacity’.

God only knows what one has to do for the powers to be to decide that mental capacity is diminished? I guess they know that we feel obligated to pick up the pieces? But it is wrong and in my opinion the mental capacity thing is much too lax and people are often a danger to themselves and others,

You have all my sympathy and I echo Dusty and Chris. I too am an only child and my late father was very difficult and I can relate to a lot of your post. I have a lot of admiration for you but please put your own mental and physical health first.

Surely SS have a ‘duty of care’ to her? Is it worth writing to her GP and a solicitor putting your concerns in writing?

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Hi Fluffy
I was so lucky. My Mum, who died just before her 100th birthday was loving, accepting, appreciative and loved by all her carers. I still found looking after her exhausting, frustrating, time consuming and as an only child too ‘on my shoulders’ just like you.
Have you any hair left? I would be tearing it out while I stood and screamed if my Mum had behaved like yours at the end of her life. I endured because she was so nice to everyone (if very stubborn and awkward about some things). Actually she wasn’t all sweetness and light when I was a child and I was conditioned to fear a frown and always try to please. However my Mum wasn’t daft and knew how to keep everyone willing to look after her in her old age!
However one thing you could get in your head is that you do not HAVE to look after your Mum. No adult is obliged to look after another, whether spouse, parent, sibling, grown up child or best friend!
Add that to ‘I don’t want to deal with her personally’ and find a ‘Monopoly get out of jail card’.
You could just walk away. Tell SS that you are no longer taking any part in her Care and never go near her again. Up to them then.
You could learn to take control so that you are the boss. Refuse to accept the verbal abuse. When it starts get up and walk out of the room. Say something like ‘If you are still nasty when I come back I will leave and come back another day’, Stick to that.
You could record the abuse on your phone and make an ally of the Care Team Manager. Has she/he a list of reported complaints by their carers? Take that, a letter from yourself detailing your observations and your phone to her GP . (Someone else might well suggest a better recipient of such evidence.) This is to find out what the best for Mum would be from now on.
Do you have POA for your Mum? If she has capacity then she should be able to sign the document –or would she refuse?
There are all sorts of implication which only you know of but need to consider. Possibly money, property, inheritance for example. Or just whether you could cope with handing over her care to somewhere like a Home. Remember it isn’t just about what Mum WANTS it’s all about what you NEED and the amount of care she NEEDS now.
What about hubby? He has some claim on your time and attention too?
You have to decide what is best for you now. Your Mum has had a long life and should not be damaging yours, especially as you have your own health problems. Probably, statistics wise, your Mum hasn’t that much longer – but it could be a few years? Could be very hard on you, that time.
My Mum spent the last 3 months of her life in a Home. It was by no means ideal but she needed the 24 hour care and I needed to be able to sleep at night.
Hope you find a solution
KR

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Hi Fluffy.

I am an only child too and it can be hard going. My mother is not so elderly as your or as extreme in behaviour. However she can still be draining, with total lack of appreciation of how much I do to keep her and the house afloat. I think she has the beginning of dementia but when she sees any doctors she always seems to know the right things to say, including scoring well on the memory tests. It’s very frustrating and I can certainly relate to aspects of your experience.

I think you’re right to try and take a step back while you can. After all, your mother is in a safe place right now. It must be deeply hurtful to keep hearing these things from her. If you take a break from visiting maybe she will be nicer to you? I have found this sometimes. If you are there all the time they take you for granted. Take some time for yourself and your own life.

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Thank you Chris, Helena, Donna and Elaine for your helpful posts and support. I shall certainly be looking at the Discharge “Bible”. Helena, I empathise with you re mental capacity. My husband is a solicitor and after reading the relevant Mental Health Act he feels it would be very difficult indeed to prove this in my mother’s case as she is so plausible and knows exactly what answers to give. The fact that she cannot seem to separate fact from fiction doesn’t count. It must be so very difficult for you having this issue with your husband knowing there is very little you can do and being so emotionally close to it. I have already told SS that I accept no responsibility for her if and when she returns to her home and will follow up in writing. Thanks for the suggestion that I also notify the GP, I hadn’t thought of that. Elaine, I don’t have POA - she wouldn’t entertain it in any shape or form (no surprise to me).

Life just got worse though, I was telephoned by a social worker this morning to be “questioned” about stealing money and jewellery from my mother. She had had me reported to the police by the staff on the ward where she is staying. She was seen by the police and fortunately her information was so inconsistent that they decided to drop it. And so life goes on. I am really grateful for all your advice. Many things I had not thought about and also to know that there are others who have or are experiencing the same problems - it really does help to put things into perspective.

As far as the future is concerned, I think my only way forward is to drastically reduce contact with her, make sure through her carers that she is OK and provide any background support/needs or requirements without actually being alone with her at any time. I think this would preserve my mental health and also safeguard me against any future accusations. It is very very sad and I hope to goodness that I never find myself doing anything similar.

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Aw Fluffy - what a sad state of affairs for you.

I think you are right to limit contact. Her recent accusations really emphasise that you have very little other choice.

I didn’t see much of my Dad in the last year of his life. Visits often ended in violence and accusations. I had to really steal myself to go and see him. However I knew he was well looked after and 6 months after his death, whilst i feel it is sad I wasn’t able to see him more, i dont regret it as I don’t think I would have remained sane myself if I had.

Best wishes to you are these are not easy decisions to take. xxx

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Just updating really. All the advice I have been given has helped a lot. Also just knowing that there are other carers out there that have been through the same experience makes is much less isolating. As to my circumstances, and I am posting here so that if anyone who is just starting to realise they are on this road, my response would be to put steps in place as soon as you realise there is a problem, implement them slowly whilst you still have the ability to do so and then put really strict boundaries in place but much more importantly - stick to them.

My mother is still in a rehabilitation unit but will be discharged next week sometime. She flatly refused to go to a nursing home (no surprise) and has insisted on returning home. She can no longer walk, will have to have a care package (a total of 2.5 hours max a day!), will have to stay put from call to call and use a commode. She won’t be able to use the bathroom or kitchen because of the access problems in her flat. I have told social services that I take absolutely no responsibility for her at all and if she falls again, which will happen as I can see in her eyes the “I’ll practise walking when I get home” then it is down to them - I will confirm this in writing and copy to her GP - but will continue to do third party jobs such as banking, shopping etc. with minimal contact personally.

Me, I am now on tranquillisers prescribed by my doctor so that I can even get through the door of the rehab unit let alone speak to her. It has taken me 7 years to get to this point and my one suggestion would be if and when you begin to feel like I did 3 years ago now, taking into the account the way my mother acts etc., do something about it no matter how bad and guilty you feel. No one who matters will blame you, I would never ever want anyone to feel the way I do now. My wonderful husband and daughter have both suffered - I have put my mother before both of them and they don’t deserve it. I’ve worked out some really strict boundaries for when she returns home and putting them into place will cause me more angst but I am determined to claim back my life and that of my family. My mother’s happiness is not my responsibility, she has now chosen what she wants to do for the next part of her life and I have to do the same.

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Fluffy
What a very inspiring post!! Well done, stick to your plan, and please enjoy the time now with your husband and daughter. Brave lady.

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Dear Fluffy, I have been in a very similar situation to you, I am an only child and my dad died just over five years ago. Since then my currently 96 year mum has been in complete decline. She went from running the house and looking after my dad to sitting in her armchair doing nothing. I took on caring for her for everything but personal care. Almost two years ago I had to get help from professional carers as I couldn’t deal with her incontinence. She has become more and more aggressive towards her carers and some she just threatens and sends away, a few she accepts. She swears and says completely inappropriate things to the carers, asks them about their sex life and there is no holds bared when commenting on their personal appearance. I at the same time was dealing with supporting a alcoholic and drug addicted son and splitting up with my husband. My mum has been diagnosed with Dementia but there is no help there. She has been in and out of hospital over the last few years and every time it’s the same, chat to OT who confirms she is back at her baseline and she is discharged, usually her aggression uncooperative is worse for a week or so after her discharge. I think what I want to say to you is that you are not alone with this situation and how your mum is acting. At the great age of 100 she must have some Dementia. I have walked away and in fact moved far away too as I have to live my life and she is destroying both me and my life. She is in good hands with the carers doing their job. You have to think about yourself and your husband, my mum helped to destroy my marriage. You have gone above and beyond in your dedication to her. The carers will soon be on the phone if there are any real problems with her and at the end of the day she can decide her own fate. I think you have done all you can…should you wish to pm me I am happy to chat to you further. Good luck!

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Fluffy,

BEFORE mum is discharged, the occupational therapist should visit mum’s home with her, so that she can see mum in her home situation, assess how she would cope, and arrange the appropriate aids and adaptations. Make sure they do this. From what you say, it would count as an UNSAFE DISCHARGE for her to go home.
Let the OT see the place with all the clutter etc.
Mum undoubtedly counts as a “Vulnerable Adult” and it’s possible that Social Services should hold a “Best Interests” meeting. If you visit and mum starts being abusive, record her on your phone, so that others can see how she behaves. It’s sometimes the easiest way of getting the doctors etc. interested.

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From what you say, it would count as an UNSAFE DISCHARGE for her to go home. >


Seconded … link already suppied to the " Bible " on hospital discharges.

Was CHC / NHS Continuing healthcare discussed … and then rejected ?

If so , by whom ?

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Bowling Bun and Chris - thank you. Have done the OT bit at the flat and they have signed off as being a safe environment (with the equipment they are going to provide) even though I have objected in the strongest terms, knowing that the minute that she is there she will try to get up and walk. I have read the discharge bible and CHC is denied on the basis that although she is a very unpleasant person she does not have any on-going health problems - she has full mental capacity and her heart is very strong. Have looked at the Mental Health Act 2015 (she does not fall within the criteria for"decision making") and Care Act 2014 re care to be provided and funding etc. and all are in line with the guidelines set out (my husband is a solicitor). She has also been seen by the Mental Health practitioner for the elderly. Her GP is also on board and, to be fair to them, will always come out to see her within 4/5 hours if I ever have to call At present I don’t think there is anything else that can be done except let her go home and insist social services pick up the pieces when it all goes wrong and believe me I will. My heart goes out to anyone dealing with similar situations, you have to have your wits about you and persist, persist, persist! Walking away and detaching myself has been the hardest thing I have ever had to do and deep down I don’t think I will ever forgive myself but I know that this is the only way and I have to move forward and get on with my life. I don’t believe that I will live to her age, but if I do here’s to the next 30 ish years - I shall be telling my daughter that she can find me a lovely home where I can wear purple, e at lobster and drink chablis!!!

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Hi fluffy

I have read your post and can relate to a lot of what you have said. I am going through a similar situation with my father who is 83 and has been diagnosed with vascular dementia in 2013. I am alone and have no real support. I was wondering if you would be interested in having a chat with me and we could share ideas and advice. By the way my name is Karim and i am from London. There is a lot i can share with you about my father and its worse for me because i live with him.

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Just as an update. I walked away, left everything to social services and thought that would be that. It was the worse thing I could have done. Now I get told by social services what I can do or mostly not. No real updates. Try contacting them anyway, mine only works 3 days a week anyway.In the past week there have been three major lifeline call outs but because no one told the service I was no longer responsible, social services were not interested, mum had the number of her keypad changed and told no one. At one point all 3 emergency services attended, the fire brigade had to break in through the front door, it was then not repaired for two days. Because of certain allegations by her I ended up in police custody for 14 hours before being released without charge and they still say she has mental capacity! I am still waiting for social services to make arrangements for her financial affairs. I do not see her at all but still seem to get involved with carers, social services etc. Honestly it was easier when I did it myself. I have never felt so desperate, every night I go to bed and if I sleep hope that I just don’t wake up (just a hopeful thought) love my husband and daughter too much. Now with Christmas coming the guilt and misery is like a massive weight on my chest. Nothing is joyful, I’ve even given up my belief in my faith. The absolute worst 7 months of my life.