I need a little bit of support

[a-aminamorbid]

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Carers UK - a brilliant and supportive forum. Please do check it out! You will find emotional and psychological help, and a lot of practical tips (eg, on how to introduce external carers - first of all bring them with you, so you are there with them, while your mum gets used to them, and then little by little 'slip away' doing other things, so eventually you can leave your mum with them while you take a break, etc)

Yes they are fantastic but I'm avoiding them for now. I made an appropriate post when my mental health was really bad it was deleted and they messaged me saying they had to and I cannot write certain things. I was extremely depressed and had a pretty bad episode. so I'm avoiding the forum but I have called in the past and the advice they gave me I already knew . I'm beyond help at this point.

 

[a-aminamorbid]

Just to add - I know I'm sounding really hostile (just remembering how grim my life was as a carer brings it all back alas!) but I think my key message is that a carer MUST 'take control' of the situation, otherwise one's caree takes control (and they will, either from fear, or selfishness, or just ignorance of how bad things are for you, be 'ruthless' about using you for their ends).

So often, we carers don't want to tell our carees just how hellish looking after them is - we don't want to hurt their feelings. But our feelings matter too. We have as much right to a decent life as anyone, and if that is something we have to tell our carees (and the rest of our family!) because they don't see it that way, then that is what we have to do.

No one who hasn't been a 24/x7 carer has ANY idea of how ghastly it can become.

I really really do appreciate your input and honesty. Also I apologize for how long it took me to respond. I'm so sorry.
Yes being a carer is hellish. I couldn't relieve these past 11 years again.

You are completely right no one truly understands unless it's experienced.
I'm sorry caring was also difficult. I really hope you are ok and doing well ?
I know I felt guilty but at this point I feel numb. No body cares or wants to help or do anything. It was all for nothing. Especially since me and mum have gotten sicker and sicker.


I appreciate your kindness and words of encouragement and support. Thank you very much. Please be well and look after yourself

 

[Callista]

Well, that's a situation for sure!!! If your brother is only 22 and 'does nothing' and 'wants to die' do I take it that he, too, suffers from depression? Is he on any meds if so?

Do you do anything for him? Do you provide his meals, do his laundry, clean up after him? If so, then stop. I know that sounds tough, but by catering to him you are enabling him. He has no motivation to change at all.

As for your mother, more complicated. You are saying that she has given up and wants to die. Would that be a problem? I know that sounds harsh (again!) but in the end it IS her choice how she lives (with no dementia to cloud the issue, that's a lot more straightforward). Again, are you enabling her to go on refusing outside help because she knows you will provide it instead, at whatever cost to yourself?

What would happen if you moved out? what would your mother and brother do?

Sometimes one has to 'force the issue' or nothing changes. Again, are you enabling your mother, as well as your brother, to go on as they are, at your expense?

The trouble is that it's easy to analyse the problem - far, far, far harder to sort it.

Sorry to have asked after your background, but it can be significant - so many Asian families, for example, jsut assume that their 'womenfolk' will do all the caring required, because a woman's life is just not as important as a man's. Of course, we see this in our politicians too. The number of times I've heard sanctimonious politicians announced that the elderly should be cared for in their own homes, by their own families - and by 'families' of course they mean 'FEMALES'. I'd like to see a politician (male or female!) give up THEIR lovely stimulating, enjoyable, wellpaid careers, to look after a frail elderly relative. As if!!!!!!!!!!!!!!!!!!!!!

Also sorry you had a less than brilliant time on Carers UK forum. I had a run in with the mods myself (several times!). It's a total pain, but I guess they have to be 'careful' as well. You could also rejoin under a different name.

As for me, in the end, I made the tough call of putting my MIL into a care home as her dementia worsened. It made me feel guilty, and in some ways I regret it - but I was on my knees. I was 'sole carer' and it all fell on ME. She stole my life. She didn't mean to, didn't even know she was stealing it, but my own life just 'stopped'. I got it back to an extent when she went into a home, but I was still 'on duty' paying the bills, visiting etc, and still being the one 'in charge'. I only got my life completely back when she died some years ago.#

For me, I know, 'putting her in a home' was easier as she was my MIL not my own mother. Dementia does 'help' in a way, in that eventually they barely know they are alive, let alone where they are. It is SO cruel, and SO horrible, and my only wish is that she'd died peacefully in her bed one night when she was still living with me. That would have been a blessing. But it didn't happen.


For yourself, I wish you all that 'could be' but I do, do, do see that if depression is crushing you, then your ability to take the sadly ruthless decisions that are necessary for you to get at least some of your life back, rather than sacrifice it totally, as you are now doing, to your mother and brother, are going to be even more difficult to take.

 

[Callista]

I agree at this point I'm overwhelmed but if she refuses they won't help.
**

I think this is the crucial statement. She refuses outside help because she doesn't need it because you are providing it. That won't change until you withdraw your support from her.

What is it that you would like outside help for? You mention asking charities for more support for yourself? What kind of support? Are you talking 'therapy' in some way, or do you want someone to come into the house and look after your mum (NOT your brother) while you get out of the house for a break?

What, precisely, is she refusing? Does she give a reason (other than she doesn't want 'strangers' doing things for her)(and would rather you did them?)

 

[Leadinglights]

Well, that's a situation for sure!!! If your brother is only 22 and 'does nothing' and 'wants to die' do I take it that he, too, suffers from depression? Is he on any meds if so?

Do you do anything for him? Do you provide his meals, do his laundry, clean up after him? If so, then stop. I know that sounds tough, but by catering to him you are enabling him. He has no motivation to change at all.

As for your mother, more complicated. You are saying that she has given up and wants to die. Would that be a problem? I know that sounds harsh (again!) but in the end it IS her choice how she lives (with no dementia to cloud the issue, that's a lot more straightforward). Again, are you enabling her to go on refusing outside help because she knows you will provide it instead, at whatever cost to yourself?

What would happen if you moved out? what would your mother and brother do?

Sometimes one has to 'force the issue' or nothing changes. Again, are you enabling your mother, as well as your brother, to go on as they are, at your expense?

The trouble is that it's easy to analyse the problem - far, far, far harder to sort it.

Sorry to have asked after your background, but it can be significant - so many Asian families, for example, jsut assume that their 'womenfolk' will do all the caring required, because a woman's life is just not as important as a man's. Of course, we see this in our politicians too. The number of times I've heard sanctimonious politicians announced that the elderly should be cared for in their own homes, by their own families - and by 'families' of course they mean 'FEMALES'. I'd like to see a politician (male or female!) give up THEIR lovely stimulating, enjoyable, wellpaid careers, to look after a frail elderly relative. As if!!!!!!!!!!!!!!!!!!!!!

Also sorry you had a less than brilliant time on Carers UK forum. I had a run in with the mods myself (several times!). It's a total pain, but I guess they have to be 'careful' as well. You could also rejoin under a different name.

As for me, in the end, I made the tough call of putting my MIL into a care home as her dementia worsened. It made me feel guilty, and in some ways I regret it - but I was on my knees. I was 'sole carer' and it all fell on ME. She stole my life. She didn't mean to, didn't even know she was stealing it, but my own life just 'stopped'. I got it back to an extent when she went into a home, but I was still 'on duty' paying the bills, visiting etc, and still being the one 'in charge'. I only got my life completely back when she died some years ago.#

For me, I know, 'putting her in a home' was easier as she was my MIL not my own mother. Dementia does 'help' in a way, in that eventually they barely know they are alive, let alone where they are. It is SO cruel, and SO horrible, and my only wish is that she'd died peacefully in her bed one night when she was still living with me. That would have been a blessing. But it didn't happen.


For yourself, I wish you all that 'could be' but I do, do, do see that if depression is crushing you, then your ability to take the sadly ruthless decisions that are necessary for you to get at least some of your life back, rather than sacrifice it totally, as you are now doing, to your mother and brother, are going to be even more difficult to take.

There was a chap in room when my OH was in hospital who was refusing his insulin, was due for surgery so nil by mouth but told the nurse he had eaten so couldn't have the op, they contacted his son who told him if he didn't do as he was told then he wasn't coming back to live with him and would have to go into a care home. Surprise surprise he admitted he hadn't eaten, took his medication and went down for his surgery. The shock tactic worked.
Sometimes you have to be cruel to be kind.

 

[Callista]

Yes, it's true. The choice offered them has to be:

'Either you have me AND outside help, or you go into a care home'.

It is NOT 'either you have outside help or I do everything for you' - as they will choose for you to do everything for them......

One always has to remember that your life is as important as theirs.

 

[Spathiphyllum]

Especially since me and mum have gotten sicker and sicker.

Dear Amina, I hope you don't feel we're overwhelming you! But-- Callista and Leadinglights are right.

It is no wonder that both you and your mother "have gotten sicker and sicker"; neither of you is getting the appropriate care.

You cannot give your mother all the help she needs. You are too ill and too worn-out. (In fact, I don't think any single carer can ever provide anyone with really good care. Providing anyone with really good care always requires more than one person to help-- no matter how heroic and devoted that one carer may be.)

This is not a matter of choosing whether to help your mother or help yourself. This is a matter of choosing whether you will do what is necessary to help BOTH yourself AND your mother.

If things go on as they have been, with you as your mother's sole carer and no other carer helping out-- that harms both you and your mother. Your mother may not realise this, but I hope you will realise it.

You mentioned you might ask for another carer's assessment; please do that asap.

Finally, I don't know whether you've tried speaking to Age UK? https://www.ageuk.org.uk/services/in-your-area/carers-support/

Their Advice Line is 0800 678 1602. I think you should ring them and tell them everything. They will have encountered this situation before-- the elderly person who insists that one child must be her carer and refuses 'outside help', until the sole carer has a complete breakdown-- so they will be able to help you, and your mother. Sending you all sympathy and best wishes.

 

[Callista]

Indeed, that's it - if you breakdown, then you will not be able to offer your mother ANY help. By getting in outside help it enables you to keep doing some things for your mum, just not everything.

I completely agree that caring can't be done by only one person when the care needs are that high. My poor MIL needed 24x7 care, and that couldn't be by one person - at the very least someone had to cover the night shift! It is, grimly, why care homes are so expensive, because you have to pay for so many people per caree.

I know it can look heartless and unloving to 'withdraw' care from someone you love, and replace it with that of a stranger, but, as above, it becomes essential as the only way you can provide ANY care at all (because if you do too much, for too long, you break.)

One of the warnings always given on the Carers UK forum for those saying they were going to move their elderly parent into their home, or move into the parent's home was 'OK, for how long?'

Because what one can do for say six months, a year, maybe even two, is NOT the same at all as keeping that level of high care going year after year after year.....

Also, another key point, outside carers are only 'strangers' to begin with. So, so often the caree comes to appreciate their arrival, and they are no longer 'strangers' at all.

 

[a-aminamorbid]

Well, that's a situation for sure!!! If your brother is only 22 and 'does nothing' and 'wants to die' do I take it that he, too, suffers from depression? Is he on any meds if so?

Do you do anything for him? Do you provide his meals, do his laundry, clean up after him? If so, then stop. I know that sounds tough, but by catering to him you are enabling him. He has no motivation to change at all.

As for your mother, more complicated. You are saying that she has given up and wants to die. Would that be a problem? I know that sounds harsh (again!) but in the end it IS her choice how she lives (with no dementia to cloud the issue, that's a lot more straightforward). Again, are you enabling her to go on refusing outside help because she knows you will provide it instead, at whatever cost to yourself?

What would happen if you moved out? what would your mother and brother do?

Sometimes one has to 'force the issue' or nothing changes. Again, are you enabling your mother, as well as your brother, to go on as they are, at your expense?

The trouble is that it's easy to analyse the problem - far, far, far harder to sort it.

Sorry to have asked after your background, but it can be significant - so many Asian families, for example, jsut assume that their 'womenfolk' will do all the caring required, because a woman's life is just not as important as a man's. Of course, we see this in our politicians too. The number of times I've heard sanctimonious politicians announced that the elderly should be cared for in their own homes, by their own families - and by 'families' of course they mean 'FEMALES'. I'd like to see a politician (male or female!) give up THEIR lovely stimulating, enjoyable, wellpaid careers, to look after a frail elderly relative. As if!!!!!!!!!!!!!!!!!!!!!

Also sorry you had a less than brilliant time on Carers UK forum. I had a run in with the mods myself (several times!). It's a total pain, but I guess they have to be 'careful' as well. You could also rejoin under a different name.

As for me, in the end, I made the tough call of putting my MIL into a care home as her dementia worsened. It made me feel guilty, and in some ways I regret it - but I was on my knees. I was 'sole carer' and it all fell on ME. She stole my life. She didn't mean to, didn't even know she was stealing it, but my own life just 'stopped'. I got it back to an extent when she went into a home, but I was still 'on duty' paying the bills, visiting etc, and still being the one 'in charge'. I only got my life completely back when she died some years ago.#

For me, I know, 'putting her in a home' was easier as she was my MIL not my own mother. Dementia does 'help' in a way, in that eventually they barely know they are alive, let alone where they are. It is SO cruel, and SO horrible, and my only wish is that she'd died peacefully in her bed one night when she was still living with me. That would have been a blessing. But it didn't happen.


For yourself, I wish you all that 'could be' but I do, do, do see that if depression is crushing you, then your ability to take the sadly ruthless decisions that are necessary for you to get at least some of your life back, rather than sacrifice it totally, as you are now doing, to your mother and brother, are going to be even more difficult to take.

I'm sorry for the long delay have been unwell lately and overwhelmed. I'm very sorry, thank you again for taking time being a very caring sympathetic person.
My brother doesn't do anything he doesn't want to do anything with depression and it doesn't want to work or do anything I have no say in that department. I'm just too tired and stressed to deal with that and the problems it comes with.

I don't cook for clean for him I stopped doing that as well. He has no motivation to change because there's nothing for him to do. has no responsibilities unlike I do.

I've spent 11 years of my life caring for my mother and brother I have no family and absolutely nothing .most of all I don't have a mental health for my physical health . all I know is caring all I have is being a carer. I have no goals or dreams. Most likely I'd probably follow her afterwards if she died. I never wanted to live before she was sick and I definitely don't want to now.

I completely understand I've been asking for help for 11 years but she's always refused it. I've asked for assessments but she always rejects extra help I have given a ultimatums, I begged I tried to reason with her. But no change, I've always said she would get help if I died. that is what would have to take. But again

To be honest if I moved out I don't think they would actually care.

Please no need to apologize, for asking my background, you just wanted to understand and have some clarification I completely understand. Yes I completely agree. I've noticed with carers they say we save the NHS millions, help the economy. But there's little resources and help for us. They look down on people putting family in care homes. But they have the faintest idea the hardships that come with caring and being ill. it's something that you have to live and make it seem like it's a honorable thing to do to become a Carer is extremely difficult.

Glad to know I'm not the only one without issues with them. I will definitely take your advise and probably use a different username or take some time before I comment again thank you very much.

I'm so sorry that you're and many others caring experience was extremely difficult, stressful and overwhelming . what you did was hard and right and brave and I hope you don't feel any sense of guilt or pain over your decision. you definitely make the right call and I appreciate you telling me this deep down I know that you are right.

You did what you had to do and I will definitely praise you for that. it's not easy take a toll on your mind your body everything. I'm Proud of you and inspired. I just hope you're in a good place now and happy?

Thank you for being so kind yes my depression makes it so easy to be complacent and not make tough decisions. Sometimes it's hard to motivate myself to brush my hair or and teeth. I think the problem is, I've wanted out of this life. So wanting to escape being a carer is pointless because it forces me to want to live.

I guess I've been punishing myself or letting people hurt me. Because I have. O cares or desires for myself.
I apologize for the length of this comment.

 

[a-aminamorbid]

I agree at this point I'm overwhelmed but if she refuses they won't help.
**

I think this is the crucial statement. She refuses outside help because she doesn't need it because you are providing it. That won't change until you withdraw your support from her.

What is it that you would like outside help for? You mention asking charities for more support for yourself? What kind of support? Are you talking 'therapy' in some way, or do you want someone to come into the house and look after your mum (NOT your brother) while you get out of the house for a break?

What, precisely, is she refusing? Does she give a reason (other than she doesn't want 'strangers' doing things for her)(and would rather you did them?)

I'm very tempted to leave, or running away. Particularly these past 3 years have been hell. She's started smoking again and unfortunately me and my brother have given in buying her. Otherwise she puts herself in dangerous situation. At this point I feel so worthless and hurt. She knows that will cause more health problems and I will have to pick up the pieces.

The most messed up thing is if I have cancer that way I can be free. Either way I can die and get away. Or get sick and need more support and help.

Yes I need help with shopping, cleaning and cooking I'm struggling now. I'm always so tired. I feel weak. I'm 31 but feel so much older. I've been discharged from therapy but I might need to go back.

She wants no one to help her and come in the house. And thank you for your kindness and empathy.

 

[a-aminamorbid]

There was a chap in room when my OH was in hospital who was refusing his insulin, was due for surgery so nil by mouth but told the nurse he had eaten so couldn't have the op, they contacted his son who told him if he didn't do as he was told then he wasn't coming back to live with him and would have to go into a care home. Surprise surprise he admitted he hadn't eaten, took his medication and went down for his surgery. The shock tactic worked.
Sometimes you have to be cruel to be kind.

I've tried that and my brother generally didn't care . Both mum and my brother don't give a damn I've tried everything. Nothing will change.

 

[a-aminamorbid]

Yes, it's true. The choice offered them has to be:

'Either you have me AND outside help, or you go into a care home'.

It is NOT 'either you have outside help or I do everything for you' - as they will choose for you to do everything for them......

One always has to remember that your life is as important as theirs.

Yes I've been thinking about this. I would of never thought about a care home but I'm at my wit's end. She would rather smoke and slowly kill herself. And I cannot sit and watch. That's why I need to phone people and ask what my options are.

My life isn't important it never has.

 

[a-aminamorbid]

Dear Amina, I hope you don't feel we're overwhelming you! But-- Callista and Leadinglights are right.

It is no wonder that both you and your mother "have gotten sicker and sicker"; neither of you is getting the appropriate care.

You cannot give your mother all the help she needs. You are too ill and too worn-out. (In fact, I don't think any single carer can ever provide anyone with really good care. Providing anyone with really good care always requires more than one person to help-- no matter how heroic and devoted that one carer may be.)

This is not a matter of choosing whether to help your mother or help yourself. This is a matter of choosing whether you will do what is necessary to help BOTH yourself AND your mother.

If things go on as they have been, with you as your mother's sole carer and no other carer helping out-- that harms both you and your mother. Your mother may not realise this, but I hope you will realise it.

You mentioned you might ask for another carer's assessment; please do that asap.

Finally, I don't know whether you've tried speaking to Age UK? https://www.ageuk.org.uk/services/in-your-area/carers-support/

Their Advice Line is 0800 678 1602. I think you should ring them and tell them everything. They will have encountered this situation before-- the elderly person who insists that one child must be her carer and refuses 'outside help', until the sole carer has a complete breakdown-- so they will be able to help you, and your mother. Sending you all sympathy and best wishes.

Thank you very much. No I don't feel overwhelmed. I feel humbled and grateful for everyone taking their time and the opportunity to comment and help me.

Yes you are right everyone is right. I know I need help. I've known for years. I can't do it anymore. Your right at this point I'm causing more harm doing everything myself. I will definitely phone age UK. Thank you for that I didn't know I could do that.

I know I have to phone adult social care but it seems pointless. I think I will wait for my test results and scans. Which should be soon before I phone. Oh I will contact my social worker and ask for help. Thank you I'm so grateful and thankful. Thank you

 

[a-aminamorbid]

Indeed, that's it - if you breakdown, then you will not be able to offer your mother ANY help. By getting in outside help it enables you to keep doing some things for your mum, just not everything.

I completely agree that caring can't be done by only one person when the care needs are that high. My poor MIL needed 24x7 care, and that couldn't be by one person - at the very least someone had to cover the night shift! It is, grimly, why care homes are so expensive, because you have to pay for so many people per caree.

I know it can look heartless and unloving to 'withdraw' care from someone you love, and replace it with that of a stranger, but, as above, it becomes essential as the only way you can provide ANY care at all (because if you do too much, for too long, you break.)

One of the warnings always given on the Carers UK forum for those saying they were going to move their elderly parent into their home, or move into the parent's home was 'OK, for how long?'

Because what one can do for say six months, a year, maybe even two, is NOT the same at all as keeping that level of high care going year after year after year.....

Also, another key point, outside carers are only 'strangers' to begin with. So, so often the caree comes to appreciate their arrival, and they are no longer 'strangers' at all.

Awh I'm so sorry for what you and you Mil went through. You Really are amazing person. And I know you are right. I hear you. I just don't know where to start . I have so much to do. I'm just stuck I just need to start.

 

[Callista]

Amina - just a quick initial reply to start with. From what I understand, and others here may know more, and organisations like Carers UK and Age UK will certainly know, I believe as the law stands if there is no one 'at home' to look after a person who needs care, then the state HAS to step in. It becomes a question of safeguarding.

So, if you weren't there for any reason, the state HAS to take over. They may do so by bringing in carers from outside, or they may simply move your mother into a care home.

That said, there is the issue of consent. If your mother had dementia I think (??) the state could simply remove her into a care home ,as she would lack the mental capacity to make decisions. But this won't apply in your mother's case from what you say.

However, if she refuses care, then I truly don't know if the state can look after her without her consent, whether in her own home, or by taking her into care. This is worth checking.

However, EVEN IF she is entitled to refuse any care from the state, this does NOT mean that YOU have to provide it. You are fully entitled to refuse to have anything to do with her. All that is keeping you looking after you is 'love and guilt'.

If you are 31 and have cared for her for 11 years I think you must have been barely 20 when you started caring for her. That's 10 years too many!

My own feeling is that you should move out. What the practicalities of doing so are is difficult - it comes down to money in the end. Where could you go, what could you rent, etc etc. Who owns the house/flat you live in? Your mum, someone else, a landlord? (By the way, if she is renting, and she is the tenant, be aware that as and when she dies you and your brother can be evicted and made homeless!) (that applies to private and council tenancies)

I think, from you have said, that your mother is profoundly wrong - and profoundly selfish. You may love her, but it is not reciprocated, is it? However cruel it may sound, your mother does NOT care about YOU. She could have made your life easier by accepting assessments and outside care, but no, she refuses, and lets you do all the work. That is not being a good and loving mother - it's selfish and inexcusable. You are wasting your kindness, sacrificing your life, for someone who exploits you as NO mother should.

It's absurd she turns down outside carers! Why? There is NO justification for it, other than her own selfishness. I'm sorry that sounds harsh and cruel, but what else can there be to justify her misusing you so shamefully, taking advantge of your love, and your helplessness and your sacrifice? Using up your life and precious youth when she could have made things easier for you by accepting outside help.

Yes, maybe she has depression too, but that is still no excuse.

Amina, you say you are Black British, and the rest of your family is either absent or a waste of space when it comes to what you are shouldering. I was wondering therefore, whether there is any kind of Church organisation nearby that you could turn to for some kind of counselling and emotional support? One of the best aspects of immigrant communities, even second and third generations onwards, is that they have, perforce, to develop their own community support structures, and church (or temple/mosque etc) is definitely one such source of community support. It doesn't matter whether you are religious or not, a local Church should still have 'some' degree of support for you.

Whatever your situation, would it be sensible for you now to at least work out how you might move out, and become independent of your mother and brother? Is it feasible at all financially?

I do honestly think the time has come to put yourself first. Otherwise you are simply waiting for your mother to die (or you........

If you moved out, then that might actually force your mother to accept outside help (whether by her own free will or imposed on her by the state). it could be, you know, that if you moved out temporarily, until outside help was established (or she'd been taken into a care home!), then you might be able to move back in KEEPING the outside carers (that would be a condition of you moving back in).

IF your mother accepted outside help, it might just be sufficient for you to find the situation bearable - right now it is not bearable at all.

Wishing all the best that is possible -

 

[IrvineHimself]

However, if she refuses care, then I truly don't know if the state can look after her without her consent, whether in her own home, or by taking her into care. This is worth checking.

If she is judged to be incapable of looking after herself and then refuses care, is that not further evidence of incapacity?

However, EVEN IF she is entitled to refuse any care from the state, this does NOT mean that YOU have to provide it. You are fully entitled to refuse to have anything to do with her. All that is keeping you looking after you is 'love and guilt'.

Having come across this a few times, especially the guilt trips, I can only say that this is a fairly common type of sociopathy. It's a form of bullying that invariably ends up with the victim enslaved to the abuser, and is, in principle, completely illegal. I am surprised your social worker hasn't picked up on this.

 

[Leadinglights]

You say you just don't know where to start and I appreciate that as all these places can be hard to access but I wonder if you could enlist the help of your GP for urgent referral to the mental health support team. You really can't go on as you are without help.
Neither you or your Mum are old enough not to be able to have a enjoyable future.

You could try contacting these people. https://giveusashout.org/

 

[Callista]

Interesting point about whether refusing care indicates incapacity. Can it ever be a rational decision? I guess it can be sometimes (in extreme cases, after all, suicide can be 'rational' from the point of view of the person committing it - they just find they have no personal reason for living), but sometimes yes, indicates they just are not thinking straight, and are not taking on board the adverse consequences to themselves of refusing care.

The Guilting is very, very well known alas, and as you say, in the end is a form of bullying - it's about getting another human being to make sacrifices for you, and you do nothing in return, it is exploiting their love for you, and you not showing any love for them. If Amina's mum loves her she'll accept external carers for her daughter's sake - end of.

Should love ever be one way only? The very religious might say yes (??), but I would think most folk would say no. In the case of someone who has no mental capacity (a baby, or someone with dementia), then one does not exepect reciprocity - the career is not mentally capable of it. But for anyone else then you can't just accept someone else's sacrifice and feel entitled to it. Amina's mum, judging by what Amina tells us, is simply and unequivically 'wrong' to refuse to accept outside carers which would lift a little of the crushing burden that caring for her places on her daughter. Her daughter has given up her youth for her mother - that's dreadful in itself.

I guess a final 'caveat' about the morality of the mother might be to make a call on whether Clinical Depression puts someone into the category of 'mental incapacity' - ie, is it a valid justification for selfishness (the kind of 'selfishness' of a baby or someone with dementia - ie, not morally 'selfish' as they cannot exert choice for themselves), or is it just selfish?? (Personally, I'd say the latter, though that might be deemed harsh????) (and ignorant of the toll Depression takes??)

Some 'selfish' people also use the argument: 'Look, if X wants to make sacrifices for me, that's her free choice. I don't have to feel responsible for her decision, and I'm therefore free to accept it. If I were her, I wouldn't be making sacrifices for anyone, and that is my free choice. She's made her free choice, and it's up to her to rescind it if she feels like it.' I personally think that is a convenient get-out clause!

 

[a-aminamorbid]

Amina - just a quick initial reply to start with. From what I understand, and others here may know more, and organisations like Carers UK and Age UK will certainly know, I believe as the law stands if there is no one 'at home' to look after a person who needs care, then the state HAS to step in. It becomes a question of safeguarding.

So, if you weren't there for any reason, the state HAS to take over. They may do so by bringing in carers from outside, or they may simply move your mother into a care home.

That said, there is the issue of consent. If your mother had dementia I think (??) the state could simply remove her into a care home ,as she would lack the mental capacity to make decisions. But this won't apply in your mother's case from what you say.

However, if she refuses care, then I truly don't know if the state can look after her without her consent, whether in her own home, or by taking her into care. This is worth checking.

However, EVEN IF she is entitled to refuse any care from the state, this does NOT mean that YOU have to provide it. You are fully entitled to refuse to have anything to do with her. All that is keeping you looking after you is 'love and guilt'.

If you are 31 and have cared for her for 11 years I think you must have been barely 20 when you started caring for her. That's 10 years too many!

My own feeling is that you should move out. What the practicalities of doing so are is difficult - it comes down to money in the end. Where could you go, what could you rent, etc etc. Who owns the house/flat you live in? Your mum, someone else, a landlord? (By the way, if she is renting, and she is the tenant, be aware that as and when she dies you and your brother can be evicted and made homeless!) (that applies to private and council tenancies)

I think, from you have said, that your mother is profoundly wrong - and profoundly selfish. You may love her, but it is not reciprocated, is it? However cruel it may sound, your mother does NOT care about YOU. She could have made your life easier by accepting assessments and outside care, but no, she refuses, and lets you do all the work. That is not being a good and loving mother - it's selfish and inexcusable. You are wasting your kindness, sacrificing your life, for someone who exploits you as NO mother should.

It's absurd she turns down outside carers! Why? There is NO justification for it, other than her own selfishness. I'm sorry that sounds harsh and cruel, but what else can there be to justify her misusing you so shamefully, taking advantge of your love, and your helplessness and your sacrifice? Using up your life and precious youth when she could have made things easier for you by accepting outside help.

Yes, maybe she has depression too, but that is still no excuse.

Amina, you say you are Black British, and the rest of your family is either absent or a waste of space when it comes to what you are shouldering. I was wondering therefore, whether there is any kind of Church organisation nearby that you could turn to for some kind of counselling and emotional support? One of the best aspects of immigrant communities, even second and third generations onwards, is that they have, perforce, to develop their own community support structures, and church (or temple/mosque etc) is definitely one such source of community support. It doesn't matter whether you are religious or not, a local Church should still have 'some' degree of support for you.

Whatever your situation, would it be sensible for you now to at least work out how you might move out, and become independent of your mother and brother? Is it feasible at all financially?

I do honestly think the time has come to put yourself first. Otherwise you are simply waiting for your mother to die (or you........

If you moved out, then that might actually force your mother to accept outside help (whether by her own free will or imposed on her by the state). it could be, you know, that if you moved out temporarily, until outside help was established (or she'd been taken into a care home!), then you might be able to move back in KEEPING the outside carers (that would be a condition of you moving back in).

IF your mother accepted outside help, it might just be sufficient for you to find the situation bearable - right now it is not bearable at all.

Wishing all the best that is possible -

Thank you so much for your kindness and help. I really truly appreciate. I'm so sorry for the delay. I've been so busy and unwell. This comment is extremely helpful. I'm going to phone carers UK and age concern to ask what options I have. Everyday I'm getting worse I definitely don't have it in me to do this anymore.
I'm going to look into all the advice and options you have kindly provided thank you. And yes I know alot of carers become homeless after caring. I know you are right with everything you have said. I will also check out local church as well. I never thought of that.

Thank you for your advice , I hope you are ok and doing well? Thank you.

 

[a-aminamorbid]

If she is judged to be incapable of looking after herself and then refuses care, is that not further evidence of incapacity?


Having come across this a few times, especially the guilt trips, I can only say that this is a fairly common type of sociopathy. It's a form of bullying that invariably ends up with the victim enslaved to the abuser, and is, in principle, completely illegal. I am surprised your social worker hasn't picked up on this.

Hello thank you for commenting and I must apologize for the delay. I'm so sorry.
I think because I am a full time carer there was no need to intervene because I'm doing everything.
Wow I never thought of it like that my social worker did warn me to get out while I'm still young and to live my life.
I haven't updated her on recent events.
I really do appreciate your input. And it has really opened my eyes on our situation. I hope you are well ? Thank you.