I've had enough - and want out

[TheCoachman]

Bust a gut last 6+ years since I moved mum near me - dinner at mine every Sunday -(my poor partner has bravely gone along with this and hearing the same story a dozen times) every Christmas , birthday etc with me , her online banking, kitting out her flat, doing all her food : household shopping, taking her to all her appointments, fixing appliances when she messes them up ... now she's heading into middle stage dementia - TOTAL denial - she keeps getting herself into a hysterical state daily / more than daily - when she doesn't get what she wants (me to rush round (half hour to get there car journey!) tonight screaming down the phone "I'm freezing" worrying she might have switched boiler off - again - I rush round - no the heating is working and 24degrees room temp and she's sitting eating her dinner !

Yesterday it was all about the 'cleaner' (I hr weekly) "she broke the telly - I need a new one!" I check telly - insisting she is present with me - it's just that she just can't use the tv remote any more and won't say so / tv working fine! Last week it was daily call out ms as she kept pressing all the buttons and reprogramming tv.
She refuses carers outright - one woman I got in as a trial to cook her dinner 4-5 each Friday she dismissed (rang me last week and shouted I don't want her here - I asked to be put through to carer (a wonderful and sensitive person) told her she could leave and I would pay her - she contacted her employer and said she wouldn't visit any more as it upset mum too much !! Today mum is singing her praises and asking where she is !

I am a son, my parents were abusive and I have only supported my mum so far out of compassion - I don't like her, she has always been snobbish, selfish and manipulative. As dementia progresses this is behaviour is becoming accentuated.

If she won't accept carers I am going to have to put up all the barriers e.g phone off evenings / nights and most days no matter how mad she gets ! - not rush round when she says she has a problem - No matter what - I hate ringing her (thought daily am and on calls would help ages ago - now I just dread them and my blood pressure shoots up) I have had enough - there is no endgame in sight with dementia - every ok day is followed by a bad day and I'm not playing the games to try to keep her happy - because the moment is always lost and it wears me out telling little white lies and going along with nonsense all the time.

A social worker visited today - looking at mental capacity (which she still has) he tried to persuade her (so skilfully) to have a care needs assessment - she held off so he's visiting again next week to try and get her consent.

I have had enough - if she won't accept daily carers (self funding!) or go into a care home - I am out - now going to start doing the practical minimum - but no crisees or demands !!!
No one warned me - I read the books and followed this forum (should have been warning enough) and fell hook line and sinker into what has turned out to be a horrible trap.
No nice words please - unless it's to help me get out !

 

[cymbid]

it seems to me you have done your bit. you have a family of your own. Step back . If she wont have carers in the house then it will be a care home. You know this will never get any better , only worse. You deserve a life and family life of your own . No-one has to give over their life to look after another (unless its your child)

 

[TheCoachman]

it seems to me you have done your bit. you have a family of your own. Step back . If she wont have carers in the house then it will be a care home. You know this will never get any better , only worse. You deserve a life and family life of your own . No-one has to give over their life to look after another (unless its your child)

Thank you so much - it's a horrid place to be and your response is so encouraging - I will still beat myself up for not being tougher / more capable - but words like yours and others around me who see how badly this is affecting me and that I'm drowning help keep me afloat and stay determined !
Ps - I've had 3 months Acute sciatica (not helped by the stress of mum) tomorrow I'm booked in for an MRI .. at last !

 

[northumbrian_k]

You have reached the end of the road @TheCoachman and done everything you could, and more. Stepping back is a hard decision to make but there comes a time when managing and providing for the needs of a person with dementia becomes impossible. Recognising that is an important stage in handing over the responsibility to others. In doing so you will be serving the best interests of your mum, and yourself too. That's all fine.

 

[Grannie G]

It`s hard enough to care for someone you love @TheCcoachman. If you haven`t had the best relationship with someone who has caused resentment in your younger life, it can be too big an ask.

I had very selfish parents. When the time came for my mother to need care I did whatever my conscience dictated. I found others to care for her.

You can wait for your mother to consent to outside carers or an assessment or whatever she needs but until then, tell her to contact you when she needs you to organise help for her.

 

[sdmhred]

Oh @TheCoachman

Considering your background with your parents, please please step back. You have done so much and your health and family life is suffering. Think of it this way. Your mum needs professional help now. By answering her calls you’re inadvertently diverting her from that. If you put in your boundaries her behaviour will still spill out to others ….it may not be long then before she is seen to lack capacity and SS can act more robustly.

 

[Chizz]

Hi @TheCoachman
None of us choose to be and become full time carers, and you have been, but you don't have to be.
One adult is not legally responsible for caring for another adult (related or not), nor liable for paying for someone else's care.
If you haven't already done so, you need to do the following, in my opinion:
- make a note of all the concerns you have for your mum, and her behaviours, the skills she's lost or forgotten, etc., and all the help she needs, as if it's on one of her worst days
- you need to get the Local Authority Adult Social Services to visit your mum to assess the care she needs (and they'll want to do a financial assessment of her assets)
- you need to tell them in no uncertain terms that you can no longer look after her or take any part in her care and that you will not do so.

Ultimate responsibility for her safety and care is with them, but she'll have to pay the care fees if her assets exceed £23,250.

Do you have a Lasting Power of Attorney Finance & Property? If not, you can only get one if you mum has mental capacity and is willing able to sign the form appointing you.
If you do not have a LPoA and if your mum no longer has the mental capacity to understand the form and concept, then: (i) you may need to start the ball rolling for a Deputyship Order with the Court of Protection. It takes ages. Only with a LPoA or a Deputyship Order will you be able to handle your mum's money to pay fees, sell house, etc. or (ii) if you don't want to, then the Local Authority will go for a Deputyship to sort your mum's finances out. If this happens, they do not have to account to you or even tell you what they decide to do.

Best wishes

 

[LouiseW]

Hi
Sounds like its time for a much needed change, you have done your bit and more. Well done and it's time for you to put yourself first.

 

[maisiecat]

There is a point where most of us break and it is particularly difficult when you are looking after a parent as you have a working life to manage and family life to enjoy.
It is not your failure and you have been heroic especially in view of your relationship with your mother.
Step away,force SS to do their job in relationship to your Mother's needs but she is almost certainly heading to residential care if she won't accept care in the home.

 

[sue31]

Bust a gut last 6+ years since I moved mum near me - dinner at mine every Sunday -(my poor partner has bravely gone along with this and hearing the same story a dozen times) every Christmas , birthday etc with me , her online banking, kitting out her flat, doing all her food : household shopping, taking her to all her appointments, fixing appliances when she messes them up ... now she's heading into middle stage dementia - TOTAL denial - she keeps getting herself into a hysterical state daily / more than daily - when she doesn't get what she wants (me to rush round (half hour to get there car journey!) tonight screaming down the phone "I'm freezing" worrying she might have switched boiler off - again - I rush round - no the heating is working and 24degrees room temp and she's sitting eating her dinner !

Yesterday it was all about the 'cleaner' (I hr weekly) "she broke the telly - I need a new one!" I check telly - insisting she is present with me - it's just that she just can't use the tv remote any more and won't say so / tv working fine! Last week it was daily call out ms as she kept pressing all the buttons and reprogramming tv.
She refuses carers outright - one woman I got in as a trial to cook her dinner 4-5 each Friday she dismissed (rang me last week and shouted I don't want her here - I asked to be put through to carer (a wonderful and sensitive person) told her she could leave and I would pay her - she contacted her employer and said she wouldn't visit any more as it upset mum too much !! Today mum is singing her praises and asking where she is !

I am a son, my parents were abusive and I have only supported my mum so far out of compassion - I don't like her, she has always been snobbish, selfish and manipulative. As dementia progresses this is behaviour is becoming accentuated.

If she won't accept carers I am going to have to put up all the barriers e.g phone off evenings / nights and most days no matter how mad she gets ! - not rush round when she says she has a problem - No matter what - I hate ringing her (thought daily am and on calls would help ages ago - now I just dread them and my blood pressure shoots up) I have had enough - there is no endgame in sight with dementia - every ok day is followed by a bad day and I'm not playing the games to try to keep her happy - because the moment is always lost and it wears me out telling little white lies and going along with nonsense all the time.

A social worker visited today - looking at mental capacity (which she still has) he tried to persuade her (so skilfully) to have a care needs assessment - she held off so he's visiting again next week to try and get her consent.

I have had enough - if she won't accept daily carers (self funding!) or go into a care home - I am out - now going to start doing the practical minimum - but no crisees or demands !!!
No one warned me - I read the books and followed this forum (should have been warning enough) and fell hook line and sinker into what has turned out to be a horrible trap.
No nice words please - unless it's to help me get out !

Most of us have been/are or heading towards where you are right now. It’s horrible & exhausting.
As others say if you’ve not already got a formal diagnosis have you got the LPA’s in place?
If not get them done. Easy to download & complete the forms. Mum wasn’t so bad - similar to yours when I got her to sign.
After talking to her about it she was not that willing so I just said “it’s your choice mum, if you don’t sign it the government people will decide what happens to you if you go in hospital or are sick & I won’t be able to help you at all”.
She understood that & think it may of scared her 🤷‍♀️
She signed.
She refused to engage with the SS when I got them involved. They said nothing more they could do as mum said there was nothing wrong with her - they could see there was tho.
So I got in touch with some local agencies. We lied to her. Said everyone over 80 has to have some help these days, she would let them in but never let them do anything other than give her the morning meds she needed. She enjoyed the ‘friendly chats’. We paid for them, it may of been a easy visit for them but they were so good at being my eyes & letting me know what was needed, if they had any concerns they would call me while there. Saved on trips over when she did things like pull tv Ariel out/turned thermostats off, couldn’t find her purse etc. it’s not a get out but it did help us, we also put a key safe in for emergency use only.
Good job we did it was the carer who found her the morning she had a no injury fall. Called the ambulance & was taken to hospital on my insistence. From that point on it was a full assessment & not allowed back home.
You can only do your best in their best interests and it’s so hard when you know the path your heading down & they resist every thing because ‘there is nothing wrong’

If you’ve not already got those LPAs do it asap.

 

[Look for a star]

Bust a gut last 6+ years since I moved mum near me - dinner at mine every Sunday -(my poor partner has bravely gone along with this and hearing the same story a dozen times) every Christmas , birthday etc with me , her online banking, kitting out her flat, doing all her food : household shopping, taking her to all her appointments, fixing appliances when she messes them up ... now she's heading into middle stage dementia - TOTAL denial - she keeps getting herself into a hysterical state daily / more than daily - when she doesn't get what she wants (me to rush round (half hour to get there car journey!) tonight screaming down the phone "I'm freezing" worrying she might have switched boiler off - again - I rush round - no the heating is working and 24degrees room temp and she's sitting eating her dinner !

Yesterday it was all about the 'cleaner' (I hr weekly) "she broke the telly - I need a new one!" I check telly - insisting she is present with me - it's just that she just can't use the tv remote any more and won't say so / tv working fine! Last week it was daily call out ms as she kept pressing all the buttons and reprogramming tv.
She refuses carers outright - one woman I got in as a trial to cook her dinner 4-5 each Friday she dismissed (rang me last week and shouted I don't want her here - I asked to be put through to carer (a wonderful and sensitive person) told her she could leave and I would pay her - she contacted her employer and said she wouldn't visit any more as it upset mum too much !! Today mum is singing her praises and asking where she is !

I am a son, my parents were abusive and I have only supported my mum so far out of compassion - I don't like her, she has always been snobbish, selfish and manipulative. As dementia progresses this is behaviour is becoming accentuated.

If she won't accept carers I am going to have to put up all the barriers e.g phone off evenings / nights and most days no matter how mad she gets ! - not rush round when she says she has a problem - No matter what - I hate ringing her (thought daily am and on calls would help ages ago - now I just dread them and my blood pressure shoots up) I have had enough - there is no endgame in sight with dementia - every ok day is followed by a bad day and I'm not playing the games to try to keep her happy - because the moment is always lost and it wears me out telling little white lies and going along with nonsense all the time.

A social worker visited today - looking at mental capacity (which she still has) he tried to persuade her (so skilfully) to have a care needs assessment - she held off so he's visiting again next week to try and get her consent.

I have had enough - if she won't accept daily carers (self funding!) or go into a care home - I am out - now going to start doing the practical minimum - but no crisees or demands !!!
No one warned me - I read the books and followed this forum (should have been warning enough) and fell hook line and sinker into what has turned out to be a horrible trap.
No nice words please - unless it's to help me get out !

Hi, Just want to say I am in a similar situation to u. I have a very volatile relationship with my mum. My dad raised me, so I hear what your saying about wanting to stop and the resentment. I have days where I want to do the same thing, but the guilt is real and pains me. No one should have to feel that way, u have to do what's right for u. Don't feel bad for feeling that way as no one gets any hero points for staying and dealing with it when your own mental state is being impacted. There are places out there that would support if you could not. The burden and stress is real even when you have the best of relationships let alone a hard relationship where as u say u had with your mum. Look after yourself and do what feels right for you and what you know your limitations are. Your mum will eventually have to accept the help, so maybe stepping back will help that happen. it is cruel all around .. sorry u feel this way.

 

[ESB]

Bust a gut last 6+ years since I moved mum near me - dinner at mine every Sunday -(my poor partner has bravely gone along with this and hearing the same story a dozen times) every Christmas , birthday etc with me , her online banking, kitting out her flat, doing all her food : household shopping, taking her to all her appointments, fixing appliances when she messes them up ... now she's heading into middle stage dementia - TOTAL denial - she keeps getting herself into a hysterical state daily / more than daily - when she doesn't get what she wants (me to rush round (half hour to get there car journey!) tonight screaming down the phone "I'm freezing" worrying she might have switched boiler off - again - I rush round - no the heating is working and 24degrees room temp and she's sitting eating her dinner !

Yesterday it was all about the 'cleaner' (I hr weekly) "she broke the telly - I need a new one!" I check telly - insisting she is present with me - it's just that she just can't use the tv remote any more and won't say so / tv working fine! Last week it was daily call out ms as she kept pressing all the buttons and reprogramming tv.
She refuses carers outright - one woman I got in as a trial to cook her dinner 4-5 each Friday she dismissed (rang me last week and shouted I don't want her here - I asked to be put through to carer (a wonderful and sensitive person) told her she could leave and I would pay her - she contacted her employer and said she wouldn't visit any more as it upset mum too much !! Today mum is singing her praises and asking where she is !

I am a son, my parents were abusive and I have only supported my mum so far out of compassion - I don't like her, she has always been snobbish, selfish and manipulative. As dementia progresses this is behaviour is becoming accentuated.

If she won't accept carers I am going to have to put up all the barriers e.g phone off evenings / nights and most days no matter how mad she gets ! - not rush round when she says she has a problem - No matter what - I hate ringing her (thought daily am and on calls would help ages ago - now I just dread them and my blood pressure shoots up) I have had enough - there is no endgame in sight with dementia - every ok day is followed by a bad day and I'm not playing the games to try to keep her happy - because the moment is always lost and it wears me out telling little white lies and going along with nonsense all the time.

A social worker visited today - looking at mental capacity (which she still has) he tried to persuade her (so skilfully) to have a care needs assessment - she held off so he's visiting again next week to try and get her consent.

I have had enough - if she won't accept daily carers (self funding!) or go into a care home - I am out - now going to start doing the practical minimum - but no crisees or demands !!!
No one warned me - I read the books and followed this forum (should have been warning enough) and fell hook line and sinker into what has turned out to be a horrible trap.
No nice words please - unless it's to help me get out !

Hello I’m sorry to read what you’re going through. I have a similar story but my mam won’t accept any help, cleaner, hair dressers and gardeners she has got rid of.
I think you need to hand more responsibility to social worker who can put things in place.
You need to take care of yourself as you can’t help if you are not mentally fit. Can you find a local group where you can go for support, or a telephone helpline where you can off load. I don’t have any answers for you sadly but will always listen if you need a friend

 

[leny connery]

Bust a gut last 6+ years since I moved mum near me - dinner at mine every Sunday -(my poor partner has bravely gone along with this and hearing the same story a dozen times) every Christmas , birthday etc with me , her online banking, kitting out her flat, doing all her food : household shopping, taking her to all her appointments, fixing appliances when she messes them up ... now she's heading into middle stage dementia - TOTAL denial - she keeps getting herself into a hysterical state daily / more than daily - when she doesn't get what she wants (me to rush round (half hour to get there car journey!) tonight screaming down the phone "I'm freezing" worrying she might have switched boiler off - again - I rush round - no the heating is working and 24degrees room temp and she's sitting eating her dinner !

Yesterday it was all about the 'cleaner' (I hr weekly) "she broke the telly - I need a new one!" I check telly - insisting she is present with me - it's just that she just can't use the tv remote any more and won't say so / tv working fine! Last week it was daily call out ms as she kept pressing all the buttons and reprogramming tv.
She refuses carers outright - one woman I got in as a trial to cook her dinner 4-5 each Friday she dismissed (rang me last week and shouted I don't want her here - I asked to be put through to carer (a wonderful and sensitive person) told her she could leave and I would pay her - she contacted her employer and said she wouldn't visit any more as it upset mum too much !! Today mum is singing her praises and asking where she is !

I am a son, my parents were abusive and I have only supported my mum so far out of compassion - I don't like her, she has always been snobbish, selfish and manipulative. As dementia progresses this is behaviour is becoming accentuated.

If she won't accept carers I am going to have to put up all the barriers e.g phone off evenings / nights and most days no matter how mad she gets ! - not rush round when she says she has a problem - No matter what - I hate ringing her (thought daily am and on calls would help ages ago - now I just dread them and my blood pressure shoots up) I have had enough - there is no endgame in sight with dementia - every ok day is followed by a bad day and I'm not playing the games to try to keep her happy - because the moment is always lost and it wears me out telling little white lies and going along with nonsense all the time.

A social worker visited today - looking at mental capacity (which she still has) he tried to persuade her (so skilfully) to have a care needs assessment - she held off so he's visiting again next week to try and get her consent.

I have had enough - if she won't accept daily carers (self funding!) or go into a care home - I am out - now going to start doing the practical minimum - but no crisees or demands !!!
No one warned me - I read the books and followed this forum (should have been warning enough) and fell hook line and sinker into what has turned out to be a horrible trap.
No nice words please - unless it's to help me get out !

no nice words, I promise. For me, if the time comes that I cannot carry on anymore, I will stop. Nobody should go beyond their endurance. By stop I mean, pass the baton. To care home or other professionals. Sound like you have done your bit.

 

[Knitandpurl]

My Mum always said “Life is for the living, not the dying”. How you interpret this is up to you, but for me it means You need to be able to live your life. Please step back and do your absolute best not to feel guilty about it.

 

[Lias1166]

Hello @TheCoachman I am completely with you. I’ve been caring for my dad and now my mum for the last 13 years. I just can’t take any more of the awkwardness and disagreement with useful or helpful ideas.

I have been trapped into employing three private carers via a personal budget and it is nothing but pain and misery, but Mum will absolutely not have a care company – this is despite the fact that I have worked for various care companies in various roles for the last 20 years!

Mum does not want to help herself and seems to enjoy wallowing and causing problems. Every time I am due to go away, we have a drama, if I’m due to go out the evening we have a drama somehow she seems to know when I am particularly tired and we have a drama!

I don’t care anymore. I find myself biting my tongue and trying not to lose my temper every time I speak to her. My brother absolutely refuses to do anything claiming that as he is 150 miles away there is nothing he can do. Apparently there is no Internet or phone Staffordshire.

After I’ve been talking to her, on bad day, my son says I am grangry. What what I am actually being is unreasonable. I know it I hate it but I just can’t seem to stop it.

 

[SeaSwallow]

Hello @Lias1166 and welcome to the Dementia Support Forum, I am so sorry to read about what you are going through, it must be so difficult for you. First of all you are not being unreasonable, you have been caring for your parents for 13 years and that is a long time especially if the person that we are caring for is difficult and as you say causes constant dramas.

It comes to a stage where it is not what the person with dementia wants but what they and their carers need. It sounds as if the time has come for you to decide just how much caring you are willing to do. You do not have a duty of care to your mum, social services do. It might be an idea for you to contact your local adult social services and tell them what you have expressed here and say that you just cannot go on providing the level of care that you have been for the last 13 years and that you need to step back for the sake of your own health.

 

[Izzy]

Welcome to the forum @Lias1166.

I’m sorry to read about your situation. Not easy for you.

Thank you for contributing here. You might also want to consider starting your own thread in the I Care For A Person With Dementia area of the forum. I’m sure you’ll find others understanding and supportive.

I care for a person with dementia

This forum is for people who are involved in the care of a person with dementia.

forum.alzheimers.org.uk

 

[TheCoachman]

Don't beat yourself up - dementia - especially in later life is a horrible journey towards oblivion. I am in a hospital bed waiting for the consultants to decide on what option for my surgery.

I was led into doing everything for mum (luckily I kept records and summaries of what needed to be done / what I did - now handed over to my GP) then I was rushed into a&e last Sunday - I'm the sole carer (brothers and sisters not involved - live other ends of country) - ever since coming in (acute pain) my mother has been ringing me cajoling, crying, screaming "what about me!!!!!!" threatened to mess herself, said " i can't see to eat " (she does use oven to heat dinners from fridge) burned a pan of food so fire alarm called, went knocking on doors screaming my sons in hospital ........but she is still deemed to have mental capacity !!! and absolutely refuses carers !!!!
at last completely worn down I've shut my phone off - rung social services - and insisted it's now up to them .... why oh why does the 'system' allow this abuse of carers.
one day we all realise that whatever we do it's never never enough for the person with dementia - nothing is good enough - for most of us there comes a pint when we have to step back and in the interests of the PWD make the agencies step in.
doing anything is wonderful but you too have a right to life, love and above all peace.
wishing all on this wonderful forum all the best
Peter

 

[Banjomansmate]

Hope you are feeling better soon Peter.

 

[SeaSwallow]

Hello @TheCoachman I am sorry to read that you are in hospital and hope that you get better soon. You have done the right thing in switching off your phone and handing over responsibility for your mum to social services. Time to look after yourself now.