New here and don't know where to turn

All about caring
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Hi all,

Excuse the bullet points but there’s a lot to explain:

  • My Mum is 84 and until recently has been living on her own. For the last 18 months she’s been having support from private carers
  • Up until COVID she was driving and working part time in care homes delivering EXTEND exercise classes to residents
  • Her Dad had Alzhiemers and my Dad passed away 8 years ago from semantic dementia
  • Her worst nightmare is the thought that she might “lose it” and go down the dementia route
  • There has been some cognitive impairment and decline over the last couple of years, but she has also been suffering with SEVERE anxiety and depression, including panic attacks that started out as a couple a week and escalated to several a day and waking in the night with one and also the second she woke up
  • My sister has been doing a lot of the practical stuff - shopping, meals etc, whilst the medication and emotional support side of things has fallen on me (having lived with depression for the last 28 years, Mum turns to me for emotional support). this had got to the point where I was getting 20 - 30 phone calls a day
  • My sister and I had reached breaking point; both working full time and having our own families and Mum was starting to say she needed some more support, so we tried respite for a couple of weeks in a beautiful care home, with a very small, quiet residential floor, Mum started making suicidal threats about throwing herself downstairs / out of the window etc and whilst this was concerning to hear, we knew that she was safe where she was and couldn’t happen. However, it was causing her so much trauma, that we ended up bringing her home whilst we came up with another solution. My daughter and I stayed with her 24 hours a day for 2 days. She was no happier back at home and didn’t seem to recognise it as home anymore
  • Then she had a severe anxiety attack that I couldn’t get under control and we ended up calling the paramedics and being in an A&E ‘corridor’ for 16 hours and then in hospital for 4 days (all whilst my sister was away on holiday)
  • The first 24 hours were hell - the things Mum accused me of were so upsetting
  • During the stay in hospital we were referred to the mental health team, but they refused to come and see her because “panic attacks and anxiety can be dealt with by her GP” - and also the fact that we have a private psychiatrist
  • They told me she was fit to be discharged. I refused and said I couldn’t keep her safe at home
  • They agreed to keep her there until they sorted out an Early Assessment Bed in a random care home or I found somewhere
  • I found a specialist home that dealt with dementia (we feel it is there even though there is no diagnosis because of her extreme fear) but also had mental health support and was run by a mental health nurse. It was unbearable for Mum. Even though we saw none of it when we went to look round, the constant shouting and screaming was again, causing her more trauma and the threats about haring herself started. I should add, she has become extremely sensitive to noise recently too.
  • So now, she is in a small (22 residents), calm, quiet care home and again, hating every second, making threats to try and hurt herself and accusing me and my sister of awful things
  • I am absolutely at the end of my tether. I feel like I may be suffering from some PTSD, having had to walk past the maternity ward when we were recently in hospital (I had a very traumatic labour there 13 years ago and nearly died) and also ended up walking down a corridor and being confronted with the bed where my dad had passed away a few years ago
  • I can’t cope with the guilt of not visiting / answering the phone when she rings but every call or visit is the same - lots of accusations, “how could you do this to me? I thought you loved me” “why are you trying to kill me off?”
  • Just to add to all of this, I requested a care needs assessment and financial assessment from adult social care as our funds were getting towards the threshold and having chased it, they have no record of that conversation so I am having to chase that up
  • Everyone says she falls into a gap in the system that isn’t provided for
  • I am genuinely thinking of building a granny annexe in the garden, selling her house and using the money for carers - at least I could be close at hand and that may offer some reassurance
  • I am supposed to be spending some quality time with my daughter during the summer holidays but still, every minute seems to be consumed with Mum and I feel so guilty towards them both.

I am sorry for the massively long rant but just need to reach out to people who understand.

Thanks for reading!

Debbie New here and don’t know where to turn

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Hi @Deb109
Welcome to the forum. This all sounds very stressful.

@Knitfi , @JayneyT and @HorsyDeb all have an elderly mothers that pose challenges. Others will be along too who are former carers of their Mums.

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My immediate reaction is do NOT build a granny annexe, or you will never be free again!

Have you had a Carers Assessment looking at the support you need for your caring role?

Do you manage mum’s money?
Is she now getting Attendance Allowance and claiming Council Tax exemption due to her dementia?

I won’t go into my story now, but I think your next step is to find a good private counsellor for you, specifically aimed at managing mum’s expectations of you. It was life changing for me, dumping the guilt - I had competing demands from son with learning difficulties, a disabled mum, a house to run, and a business to run. My only source of income was selling of my late husband’s business stock - 30 tons of vintage lorry spares! Sadly, like a number of other carees here, your mum is never going to be happy with whatever you do, because of her illness.

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@Deb109 …hi and welcome to the forum from me. I agree that you shouldn’t build a granny annex and have mum home in the garden. It sounds like she’s already in the best place for her and for you though I appreciate how difficult it is for you with the way she is there. Hopefully others on the forum can give you more specific advice/support.

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Deb109

Dear Deb109. Hello i am Kristie i am an online community host for Carers UK. Welcome to the Forum. It sounds like you have a lot on your plate at the moment, are you getting any extra outside support though i know from your post it sounds like you have had blips which you have gotten over fortunately. I know it might not feel the same but the Forum has a number of carers from all walks of life who understand what your going through and are happy to support you and share their experiences with you on the Forum so i am sure others will contact you and help you. Once again welcome to the Forum.

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Hi Deb109
Welcome to the forum. I’m so sorry you and your sister are going through this. It is soul destroying and extremely upsetting. Has mum been like this or new. My mum 93 and very well really has always been an only thinking of herself person with constant moans. She has capacity though so it’s selfishness. I would say DON’T have her at your home. My mum wanted to after my dad died I’m an only child. Thank goodness we didn’t do it. Nothing makes her happy no matter what we do. I had a breakdown last June after our holiday was ruined again by a crisis with her. That was the tenth year of going away twice a year to a cottage somewhere with our dog. That year we went to Croatia and it was so spoiled. I’m having therapy and it is helping. I have had to go remote contact only. I was in a terrible state jumping when the phone rang even on the TV. I’m 66 my hubby 70 both retired but the the 3 years he has been retired we did nothing. Mum just wanted me there all the time I’m an only child. She went into respite and hated it then home with carers x 4 a lovely bungalow even with AC not happy then falls and fractures but hospital she wanted out of then the care home after she wanted out of it. She was always a bit difficult and it’s just got worse. You MUST make sure you and your sister have a life if you don’t make some space you will be engulfed. You sound as it you are getting to that stage so take as much support and advice you will get here. Everyone understands. It has saved me since last June. I have been able to put in boundaries of what i will do and many a time have have felt the forum warriors at my back holding me up and giving me the courage to put me as important as anyone else in the family. Big hugs

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@Deb109 welcome to the forum from me too.

My Mum is 99. She is severely sight impaired, has a hearing issue, cognitive decline and chronic neck pain, plus a few minor health concerns. She is still in her own retirement flat. I visit her twice a week. She has carers every morning for a welfare check. She only accepted this because Social Services , who provided her with a commode after a night time fall, said she must have them to empty it. Last year, she was due to go to care home, but she bailed at the last minute. She was so horrible about it all, because I wouldn’t make the decision for her. She told me I never did anything for her and never wanted to see me again. As you say, these things are so hurtful. This was on the back of a good few tantrums and rants when I did things to help her. One such thing, was having an electric door opening mechanism fitted on her front door. She was struggling to put a key in the lock and with the new automatic closures, fitted to meet new regulations, she did not have the strength to open it and get through with her rollator. Magnetic door holders were not permitted. At times I wish I’d never bothered getting the system fitted as she still hates it. However, she would be house bound without it. There have been a few issues with it, due to the postman not pushing letters through fully and the door not opening, which did make Mum worried. Took 18 months to work out what was causing the problem!

Early last year it all became too much for me. I wasn’t sleeping, I was super stressed. I was bursting into tears a lot (including at work) and was despairing about my relationship with Mum. I contacted my GP, who gave me sleeping tablets, referred me for an NHS sleep course and gave me loads of information about caring and support for carer. From there I went on a caring for carers course, run by a Cornish charity, Promas. Both courses were invaluable and have changed my relationship with Mum, so that is mainly pretty good these days.

The main things I learnt were:

  • I had spent all my energy trying to help Mum, but I’d forgotten to look after myself
  • I needed to do things just for me
  • I needed to set boundaries to prevent me getting burnt out
  • That I needed to contact Mums GP to assess if she has mental capacity to make decisions (she has)
  • That I had been a bit of a bull in a china shop trying to help Mum. I needed to ask Mum if she wanted help. If yes, then I needed to offer Mum solutions and just back off if it was a no (it often is!).
  • If Mum can do something, let her do it, even if takes forever and if it might not really be needed (I find this really hard).
  • That I am not responsible for Mums mental health and happiness. I can help, but ultimately if she doesn’t want to do things that could help her then it’s her decision.
  • That I needed to open up to others how I was feeling and accept help from others.

Since then, I’ve prioritised time for me (walking, horse riding, fitness class), and so I feel less resentful of Mum. I have to be carefully not to overdo it though as I also work at a vets 2 days a week which is pretty physical! I have bought extra holiday at work, and have days off seeing Mum (like today,!). Next month, hubby and I are going on a lovely holiday and Mum is reluctantly going to respite ( I hope!) By being less resentful I have the energy to be patient with Mum. I have also told people about my situation, and although physically I am the only person that helps Mum, the emotional support has been invaluable. The guys on here are amazing!

Mum will likely be going to a care home sometime. One alternative could have been her coming to live with us. However, Mum has never been the easiest person to be around and I knew we’d be at loggerheads if she came here. The second alternative would be to have carers more often to help her. Although not completely off the table, she doesn’t give her carers much to do now, so I don’t think it would be workable solution. Why give the carers things to do when Debs can do it!

I know this has been a bit long winded, but I hope there are things that help you with your decision making process. I would think very long and hard about having your Mum live with you. It’d be even harder to stand back when you need to if she is right there. Please make sure you make time for yourself and for you and you and your family. It does sound like your Mum will not be happy anywhere, so I would suggest she lives where is best for you and your family.

My Mum is p.u.s.s.y cat compared to @knitfi and @JayneyT.’s Mum, I’m sure they will be helpful. If yi7 have any questions or just need to vent, please do. We all do it! Good luck.

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Deb, I forgot to mention previously that my mum used to ring me constantly. I used to run a national lorry club (long story) and wrote a club magazine. About 20-24 sides of A4, with about 40-50 photos. My mum knew very well that I wrote mainly in the morning, when my mind was fresh and the house was quiet. One of my club members described it as “the best of it’s type in Europe”. Mum never saw a copy. She deliberately rang me when she knew I was writing. By the end of the conversation my concentration had vanished for the day. My counsellor told me to take control and put the answerphone on. Of course mum hated it. I could listen to the messages and ring her if needed when it was convenient for ME. I would strongly suggest that you did the same. As mum is in a small home then the home should be sorting out EVERYTHING for mum, as if you didn’t exist. Don’t let them get you to do what they are being paid to do. Sadly, I suspect your mum has lost the ability to be happy in herself, as mine did.

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Hi @Deb109 and welcome. This is a safe place where you can share your feelings and chat to people without judgement. As others have mentioned I have had a similar experience with my mum, far too much to write to you on here, but in a nutshell she has undiagnosed Multiple Personality Disorder. My dad spent sixty years trying to make her happy until he succumbed to Alzheimer’s and I have been picking up the pieces for eight years now. My older sister is psychotic and in a secure unit due to the abuse we both suffered as children and adults at the hands of my mum.

I can only say this: DO NOT BRING HER HOME TO LIVE WITH YOU. I had the same idea at one point, but fortunately my Aunt talked me out of it. My mum will never be happy, she doesn’t know how. Whatever you do for your mum, it will not be enough. She sounds like she has no empathy and she will literally grind you all into despair.

My mum is now in a £7000 a month double suite in the care home she went to in February 2025, because that was the only thing the manager could think of to stop her behaviour. She complains that the bathroom is too small! Since last Christmas, when she conned a family friend into taking her away to start a new life in Devon, I have had Social Workers accusing me of keeping her prisoner in the Care Home against her will (she was put into Care on her GP’s advice) and then recently accusing me of enabling her to spend all her savings and to be taken advantage of financially by the Care Home.

I visit mum once a month now, and she has no guilt or sense of responsibility for the things she has done and the lies she has told Social Workers to get her own way. She has mental capacity apparently so can basically do what
she likes, despite warnings from all the family. She lives by denying and lying.

I had thoughts of ending my life last year, because no one in Authority, except the Care Home Manager, believes what I tell them, even when I produce tape recordings and written evidence of her manipulation and deception. It is officially described as “a difficult relationship with the daughter”. Thankfully I found this forum, went into therapy and am supported by friends and family.

Your Mum won’t stop until she has broken you and I would hate for that to happen. My sister is broken and every day is a fight for me…….but I won’t let Mum beat me and you mustn’t either.
My mum told social care she can manage perfectly well at home and they didn’t bother to check the facts. She is 90 with a serious heart condition and she could only manage at home with carers all day and my husband and I running around after her the rest of the time. I now flatly refuse to go back to that scenario.

I send you strength and the biggest of hugs. Please keep in touch. :face_blowing_a_kiss:

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Thank you for all the responses.

I don’t think I mentioned in my initial post … Mum is not a manipulative or unkind person. Under normal circumstamces she would do anything for anyone. We have always had an INCREDIBLY close relationship. Whatever has happened in the last few weeks has TOTALLY changed her.

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@Deb109 Sorry if we presumed she was as nasty as some of our Mums. It must be terribly upsetting for you if she has hitherto been lovely and suddenly has changed. :people_hugging:

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Another thing I learnt on the course was to look at triggers for mums tricky behaviours and log them. By realising what the triggers are, I try to prevent them happening. If I can’t prevent them, like the carers being late, I try and empathise with her and then distract her onto something more pleasurable. By recognising the triggers I realise that it’s often not me that she’s cross with, but something else.

Can you see what has triggered Mums change of behaviour?

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Can you pinpoint the day or event that changed things?

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That must be so much harder to have seen her change that much, sending :people_hugging:

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@Deb109 welcome to the forum. A very hard situation take care.

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That is very difficult and upsetting for you when everything has been so good until now. As BB has said is there anything that has happened to change things. It sounds like a complete turnabout. If there is a medical reason found for it I’d still be wary about her moving to you. It would be nice to have carers doing most for her is needed and you just being her daughter. However you know how you have been as a family. For us the bullet points did look like our situations especially the increases in phones call. Now we know she is not like “ our” mums we will still be supportive.

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Thank you.

Totally my fault for not clarifying the sudden change x

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