Carer in need of advice

[Searchingforananswer2023]

Background: Sick mother, long term deteriorating health condition and I am the sole carer. I work 60 hours a week and live with her. She is totally dependent on me. I do everything, medication, admin, washing, cleaning the lot.

I am receiving bare minimum from home care and have referred us to social services in Feb for support. We are still awaiting a call back.

I am burnt out from the entire situation. Everyday is exhausting and I am told by my mother that I do nothing. We have a real issue with food. Her diet is supposed to be restricted due to her medical condition and she ignores this. Failing to follow the prescribed diet has put her in hospital and we have just finished a six week stint which was draining.

Today she is at the hospital having treatment. I am going to meet her to go to another hospital for a separate appointment. She then wants me to go back to the first hospital to go and get some food from the restaurant as she really likes it there. This is after me being at work this morning and offering to buy her something to eat to avoid the trip back to the first hospital where it is difficult to park, peak of the day for appointments.

AIBU to say no? I had a panic attack this morning at the thought of the day. I have recently started suffering from migraines due to the stress of it all.

I just get told that I'm weak, useless and I'm going to lose my job, because in her opinion I have lose my job if I'm suffering with stress and anxiety. This is a regular threat.

I just want an easier life, where she adheres to treatment and does not make demands when she can plainly see that I am struggling.

Any advice?

You need to step back and tell her and social that you can't and won't do it anymore

First reply nailed it. You do no have to put up with her abusing you

Phone social services and her consultant for hospital care, let both know you can no longer provide care as of 2 weeks time, give them a date and a summary of her care needs.

Being a carer is tough, really tough. It is even harder when the person you care for does not value what you do.

You need to prioritise you and keep yourself well.

You also need to get external help (either other family or carers) - from experience, you really need to push social services for help (call everyday if need be).

My thoughts are with you.

This is the hard part as she is my mother and I want to help and support her but the demands are insane. She says I am neurotic and she cannot see that her behaviour is making a difficult situation a nightmare for me.

I don’t understand why you think you have to put up with this? Genuinely?
Your mother is not entitled to have you as her carer, monopolise your time and make ridiculous demands.
I would be looking at alternative care arrangements for her and reclaiming my life.
If you were in her position would you be acting the same towards your daughter? Would you let her ruin her life and lose her job due to your controlling demands?

Being that my mother is a covert narcissist and it took me until my 40s to grow a backbone I could be called a hypocrite but let me tell you life is wonderful once you realise there are other options to a life of emotional control & abuse. You don’t have to feel guilty to want to live a calm and quiet life!
Can I hazard a guess that she has always been a difficult character? You do not have to put up with it no matter how enmeshed and controlled you are by her.

I am not valued at all. I know that.

First off, sending a virtual hug because you are clearly in an impossible situation and deserve some sympathy and support.

Secondly, has your mother always been this unpleasant? If this behaviour is new, raise with the GP and get her assessed: I’m assumed an infection would have been picked up in hospital, so they should be looking at dementia.

Thirdly, make an appointment to see the GP to get support for yourself, and ask them whether they can escalate with adult social care because if this continues much longer your mother will not have the care she needs. And if your mother ends up in hospital again, refuse to allow her to be discharged until a care package is in place.

Being a carer is incredibly hard work, and your mother is being utterly unreasonable. You deserve better.

Thank you for the reply. I am not married and have no children. This is regularly thrown in my face as to her I am not normal.

I am sinking and she does not realise that her behaviour is the cause of it all.

She is high maintenance and always has been, but that I could cope with as she was a very capable woman. Illness has taken her mobility and ability to look after herself and I sympathise with her.

It is not infection and the hospital should have released her to respite/rehab but in reality they don't care either. I am trapped until a social worker makes contact.

Look, I know this is a lot easier for us to say than for you to do, but say no about collecting food from a totally different hospital.

You are not a Deliveroo driver or Ubereats. If you were providing care to her as part of commissioned hours from adult social care, you wouldn't be allowed to waste your paid time doing that.

Would you be able to paraphrase how these conversations about your job go? I think perhaps you need MNers to supply you with one-liners to shut down the conversation.

I know and I have done. The amount of abuse I'll get today for saying no will be unreal. She tried to get home care to go to the shop for her the other day. We had food from Tesco, Asda, Sainsbury's and M&S this week just to meet the demands as she wants different things from different places. I am so tired of it all.

You'll have to give up your job as you can't cope.

You'll lose your job when they find out your a no coper.

Quit the job, it's got to go.

I reply with change your behaviour, you are the problem but she doesn't care. My brother who is insanely jealous of me reported me to the police years ago with false allegations in order for me to lose my job. It is my only source of happiness and they want to take it away from me.

I just want an easier life, where she adheres to treatment and does not make demands when she can plainly see that I am struggling.

This is not going to happen OP. She will not change her behaviour so you need to change yours. The only person who can effect change is you and it may mean moving out and leaving her to it. If she genuinely needs care, social services will arrange it and you need to tell them that you can't do this any more and stick to it. Unless she has a cognitive impairment, her failure to adhere to medical advice and the consequences for it are on her.

In the meantime, you need to use the word "No" much more frequently and try to edit out her complaints. She's treating you badly even when you're trying your hardest, would it really be much worse if you didn't give in to her every unreasonable demand?

Okay, so it's all about hurting your feelings because it's what you care about. If your passion was pedigree rabbit breeding, she'd be talking about how you had to give that up. You have to emotionally disengage. Reply on repeat, "Then I'll have to get another one." Any comments about how looking after her is your job need to be met with "Are you going to employ me and match my current salary? I'll want NI contributions and a pensions scheme."

If she says you're useless, smilingly agree and say, "yes, that's why I can't do [insert whatever task] this week".

You really need to see your GP as suggested above. Request a longer appointment, 20mins instead of 10. Tell GP you are at breaking point, at risk of loosing your job and cannot continue. GP can refer you to many services and support. Are you a member of Carers Network? They will support and advise.

Do not go back to the other hospital for food. I presume you are the driver so you have control of the situation. No one should be abused while doing their best. Whenever your mother starts abusing you, walk away. Don’t tolerate or listen to it. Step back so your mother recognises how much support and care you provide.

Do you live with your mother or in your own home?

Even with care and support, you will still have a lot to deal with. It’s a very time consuming and stressful role no matter how many carers are provided.

Big hug.

I live with her. We both own the house and this is another issue. It was a council house that we bought together but I pay for everything and she threatens to give her half share to someone else, even though the agreement was that I would inherit and give a small % to my estranged brother who has nothing to do with either of us.

She'll continue making a threat to disinherit you as long as it gets you panicking. She uses the threat to get you struggling to earn her favour. You cannot control what she does or earn her respect, so don't try.

Disengage. Tell her, "It's your property, where to leave it is up to you".

Unfortunately, the only way to get social care involved is to push. I know you have a lot on your plate already, but I would genuinely apply whatever pressure I could: email to the MP to ask them to intervene, push the GP to chase the referral, etc. In our case, I’m the patient, and my husband is my carer, but I am not abusive towards him and at least willing to try to help myself wherever possible.

We have had to go to so much effort in order to get me the help I needed, and in the end it took for me to ensure pressure was coming from at least 3 different directions before we got there. I emailed adult social care via the council website, got the GP involved, got community physio to support, got the housing application management team to contact them and was about to go the MP route when I finally got the long-awaited assessment and was able to move forward.

With regard to the housing situation, are you in a position to buy your mother out and have her moved to residential care? I know my mother helped my grandparents sorting out nursing homes and made a point of placing them in homes where the local authority already funded patients so that they could choose where to go and just have the funding moved to the local authority when the savings ran out. And it does sound like she’s reached the point where residential care is what’s needed.

Long term, you cannot look after someone who is refractory to their own treatment and care. As frustrating as this is for your mother - and I know something of that from my own situation, as I was always hugely capable and absolutely loathe my current dependency on my husband - the answer is not to make herself feel better by putting you down and making capricious demands of you. This just isn’t sustainable. If she’s depressed, she needs to consider getting help for that, either in the form of antidepressants or counselling, but you should not be her punching bag, even if only verbally.

It is OK to say you can’t do this any more. You have done your absolute best 💐

You have my sympathies, this is really tough on you. My advice would be to keep ringing social services, tell them you're at crisis point and unable to provide care for your mother and they have to act now. Go and see your GP and tell them you are unable to carry on like this - you are experiencing panic attacks and heading for a breakdown. I know it's hard to say these things out loud but you need to. Your GP can sign you off work and prescribe medication, honestly you need it and you can't carry on like this. You've been heroic under extreme pressure for too long - there's absolutely no shame in saying you can't do this anymore. Ring social services and be persistent. You need to put yourself first for once. Good luck OP and take care of yourself 💐