Who decides that someone is a carer?

[Annakey]

And what rights does one have to decide how far one is prepared to take on this role?

Husband has dementia. Not in advance stage yet but I find it increasingly stressful looking after him and I've had an ECG today heart problem probably because of stress. I am not prepared to be a full time 24/7 carer. I cook, clean, do the shopping, look after the bills and take him out for various pleasure trips and medical appointments. I don't mind doing these things but I am not prepared to be a carer 24/7 or put up with his increasingly spiteful moods. I know it is the disease but that doesn't make it easier as he is no longer the kind loving man I married. I've accepted that man has gone.

Sites focussing on carers, including this one, tend to think everyone is cut out to give their lives up to care for their partner/parent but we aren't all the same and some of us don't want to embrace the role and have limits to what we are prepared to do.

What happens when I reach this limit? Who makes the rules? Where are my rights in all this? Should I simply walk away? I am not prepared to ruin my health looking after someone who is not going to get better. I've seen too many examples of partners worn down by caring.

Sorry for the rant but I can't find any answers to these questions on websites just mimsy words about the 'joy of caring'. Well I don't find it joyful at all.

 

[kindred]

And what rights does one have to decide how far one is prepared to take on this role?

Husband has dementia. Not in advance stage yet but I find it increasingly stressful looking after him and I've had an ECG today heart problem probably because of stress. I am not prepared to be a full time 24/7 carer. I cook, clean, do the shopping, look after the bills and take him out for various pleasure trips and medical appointments. I don't mind doing these things but I am not prepared to be a carer 24/7 or put up with his increasingly spiteful moods. I know it is the disease but that doesn't make it easier as he is no longer the kind loving man I married. I've accepted that man has gone.

Sites focussing on carers, including this one, tend to think everyone is cut out to give their lives up to care for their partner/parent but we aren't all the same and some of us don't want to embrace the role and have limits to what we are prepared to do.

What happens when I reach this limit? Who makes the rules? Where are my rights in all this? Should I simply walk away? I am not prepared to ruin my health looking after someone who is not going to get better. I've seen too many examples of partners worn down by caring.

Sorry for the rant but I can't find any answers to these questions on websites just mimsy words about the 'joy of caring'. Well I don't find it joyful at all.

Welcome, sweetheart and I can assure you that many of us here do not feel any joy in caring. To answer your question, no one adult HAS to care for another. There is no law which says we do. It all depends on us loving our person with dementia, and then gradually little by little being called the carer, then becoming it. We have the right to say no. We have the right to walk away. We have to make the usual financial provision as we would in any divorce but other than that, we can walk away.
There is no real way in which we can say how far we are prepared to go and in practice, the system as it were, depends upon us trying to go the full mile, and then there being a meltdown or an accident and then a dramatic change like a care home happening. Many folk draw the line at incontinence and start looking for care homes at that point.

If you want to walk away, see a lawyer, tell social services well in advance.
I was sole carer 24/7 for four years and it broke me. My husband is now in a nursing home.
warmest, Kindred aka geraldine.

 

[Beate]

Duty of care lies solely with the state. You as an individual do not have to take on any caring role whatsoever and can always step back and ask the state to take over. No one here will tell you otherwise, so I'm not quite sure why you think we advocate that everyone is cut out for it. People take on a caring role for plenty of reasons, out of love or a misplaced sense of duty. But everyone has a line in the sand, and no one here is judging anyone for saying they can't or won't do it anymore.

 

[nae sporran]

So sorry you are getting to the stage where caring for your husband is getting to be too stressful. As Geraldine says you are not the only one to wonder where the joy is in caring. If it wasn't for a couple of days away in June, the weekly day centre and a regular carers meeting I would never have got this far.

You should speak to Social Services who do have a duty of care to your husband as a vulnerable adult, that's the key phrase to use, and ask for a care needs assessment for him and carers assessment for yourself. If that takes to long, then ask for emergency respite as that will give you space to think.

 

[Duggies-girl]

And what rights does one have to decide how far one is prepared to take on this role?

Husband has dementia. Not in advance stage yet but I find it increasingly stressful looking after him and I've had an ECG today heart problem probably because of stress. I am not prepared to be a full time 24/7 carer. I cook, clean, do the shopping, look after the bills and take him out for various pleasure trips and medical appointments. I don't mind doing these things but I am not prepared to be a carer 24/7 or put up with his increasingly spiteful moods. I know it is the disease but that doesn't make it easier as he is no longer the kind loving man I married. I've accepted that man has gone.

Sites focussing on carers, including this one, tend to think everyone is cut out to give their lives up to care for their partner/parent but we aren't all the same and some of us don't want to embrace the role and have limits to what we are prepared to do.

What happens when I reach this limit? Who makes the rules? Where are my rights in all this? Should I simply walk away? I am not prepared to ruin my health looking after someone who is not going to get better. I've seen too many examples of partners worn down by caring.

Sorry for the rant but I can't find any answers to these questions on websites just mimsy words about the 'joy of caring'. Well I don't find it joyful at all.

I care for my dad but he is 88 years old with dementia and cancer. I keep telling myself that it will end and it will. I do not feel a lot of joy, just guilt when I wish it was all over.

I honestly don't think that I could do this again and if my husband needs care I don't know what I will do because I just don't want to ever be in this situation again. My health has suffered from looking after dad but it will end (there I go again) sometime and I hope sooner rather than later because I have really had enough. That was an awful thing of me to say but it is how I feel but I do feel a duty towards him and I am stuck with it.

Don't feel guilty if you can't do it, not everyone is cut out for it. I know I'm not but it will end unless dad outlives me which is quite possible the way things are going.

Take one day at a time and if you cannot do it then you cannot. Don't let guilt get to you because it can eat away at you just like this caring can.

 

[Annakey]

Welcome, sweetheart and I can assure you that many of us here do not feel any joy in caring. To answer your question, no one adult HAS to care for another. There is no law which says we do. It all depends on us loving our person with dementia, and then gradually little by little being called the carer, then becoming it. We have the right to say no. We have the right to walk away. We have to make the usual financial provision as we would in any divorce but other than that, we can walk away.
There is no real way in which we can say how far we are prepared to go and in practice, the system as it were, depends upon us trying to go the full mile, and then there being a meltdown or an accident and then a dramatic change like a care home happening. Many folk draw the line at incontinence and start looking for care homes at that point.

If you want to walk away, see a lawyer, tell social services well in advance.
I was sole carer 24/7 for four years and it broke me. My husband is now in a nursing home.
warmest, Kindred aka geraldine.

Thank you Geraldine. It is good to know that others feel the same. The Council site gives lots of advice on how to manage but says nothing if you can't or don't want to. I'm not quite at the stage where I shall draw the line. Personal care such as dealing with incontinence is a step too far for me or if he becomes violent. I can put up with verbal abuse - just. I'm already bookmarking are homes so that when that line is approaching I can find info. Not that info is straight forward. Homes seem chary about advertising prices which of course is important as is quality.

 

[Annakey]

So sorry you are getting to the stage where caring for your husband is getting to be too stressful. As Geraldine says you are not the only one to wonder where the joy is in caring. If it wasn't for a couple of days away in June, the weekly day centre and a regular carers meeting I would never have got this far.

You should speak to Social Services who do have a duty of care to your husband as a vulnerable adult, that's the key phrase to use, and ask for a care needs assessment for him and carers assessment for yourself. If that takes to long, then ask for emergency respite as that will give you space to think.

Thank you nae sporran [love your name]. This is the sort of advice I need.

 

[Annakey]

Duty of care lies solely with the state. You as an individual do not have to take on any caring role whatsoever and can always step back and ask the state to take over. No one here will tell you otherwise, so I'm not quite sure why you think we advocate that everyone is cut out for it. People take on a caring role for plenty of reasons, out of love or a misplaced sense of duty. But everyone has a line in the sand, and no one here is judging anyone for saying they can't or won't do it anymore.

Thank you, Beate,

 

[Annakey]

I care for my dad but he is 88 years old with dementia and cancer. I keep telling myself that it will end and it will. I do not feel a lot of joy, just guilt when I wish it was all over.

I honestly don't think that I could do this again and if my husband needs care I don't know what I will do because I just don't want to ever be in this situation again. My health has suffered from looking after dad but it will end (there I go again) sometime and I hope sooner rather than later because I have really had enough. That was an awful thing of me to say but it is how I feel but I do feel a duty towards him and I am stuck with it.

Don't feel guilty if you can't do it, not everyone is cut out for it. I know I'm not but it will end unless dad outlives me which is quite possible the way things are going.

Take one day at a time and if you cannot do it then you cannot. Don't let guilt get too away o you because it can eat away at you just like this caring can.

I try to, Duggies-girl. I keep up my interests but he is sarky when I go out without him even if I"ve arranged for someone to keep him company. He is in denial about his illness and blames things he hasn't done on me which is irritating but not knowing what mood he will be in from one minute to the next is wearing, I go to stay with my daughter whenever I can but that won't always be possible.

Being stuck at home with a person with dementia is no fun. I keep out of his way as much as possible

 

[Annakey]

I try to, Duggies-girl. I keep up my interests but he is sarky when I go out without him even if I"ve arranged for someone to keep him company. He is in denial about his illness and blames things he hasn't done on me which is irritating but not knowing what mood he will be in from one minute to the next is wearing, I go to stay with my daughter whenever I can but that won't always be possible.

Being stuck at home with a person with dementia is no fun. I keep out of his way as much as possible

I've been reading some other threads and it has confirmed that I am a selfish monster as I will only be too pleased when my husband has to go into a home and I don't have to be with him 24/7. I will get my life back and that is important to me. I feel very sorry for everyone who wants their old partner back. I do too, but it isn't possible so I want to move on and make a new life. The man stuck in front of the tv is not my husband..

 

[Boldredrosie]

Many years ago the local carers support group told me that if you bought a bag of shopping regularly for a frail neighbour that counted as being a carer. From your post, I'd say you're a carer whether or not you applied for the job. ;(

I see a lot of the replies suggest you get in touch with social services. Not sure what social services are like locally but if you have any resources, avoid them -- ours were unhelpful and judgemental. In the end I paid for a private care assessment for my mum to understand what she needed. The people who I found most helpful were Age UK who locally had someone who specialised in supporting people like you and me. I'd start with them before social services.

 

[maryjoan]

I've been reading some other threads and it has confirmed that I am a selfish monster as I will only be too pleased when my husband has to go into a home and I don't have to be with him 24/7. I will get my life back and that is important to me. I feel very sorry for everyone who wants their old partner back. I do too, but it isn't possible so I want to move on and make a new life. The man stuck in front of the tv is not my husband..

I totally agree with you - I hate doing what I am doing, hate it completely, we are not even married and I want to walk away - we are not married, but I have no money, no home, and my income has plummeted now I cannot work like I used to.

 

[Batsue]

I've been reading some other threads and it has confirmed that I am a selfish monster as I will only be too pleased when my husband has to go into a home and I don't have to be with him 24/7. I will get my life back and that is important to me. I feel very sorry for everyone who wants their old partner back. I do too, but it isn't possible so I want to move on and make a new life. The man stuck in front of the tv is not my husband..

You are not a monster, I am in similar position with my mum. Myself and OH share ownership of our house with her and I have found myself in the position of carer, this is not something I would have chosen, my mum made it plain many years ago that if I had children she had no intention of being a babysitter, she also put my nan in a care home as she did not want to look after her. I do not consider myself a monster for wanting a life for me and OH.

 

[Rosettastone57]

I've been reading some other threads and it has confirmed that I am a selfish monster as I will only be too pleased when my husband has to go into a home and I don't have to be with him 24/7. I will get my life back and that is important to me. I feel very sorry for everyone who wants their old partner back. I do too, but it isn't possible so I want to move on and make a new life. The man stuck in front of the tv is not my husband..

No you're not selfish. You are entitled to a life of your own. With my MIL my husband and his sister decided many years ago way before dementia set in they would not be carers for her. She was a narcissistic emotionally abusive mother to her children and family members. As soon as dementia diagnosis came she had carers in, self funded until it became apparent that she was simply unsafe in her own home . She went into hospital then into a care home, eventually passing away after a few weeks. There was no way she was coming to ever live with us and to be blunt, her going into residential care was the best decision we made for her and us. Our family were never going to be cut out for caring for her and as a family we refuse to be made to feel guilty about our decisions

 

[AliceA]

I do not feel anyone feels joy in the sense of being joyful. I feel what may be interpreted as that is a method, a substitution, whatever to keep going.
Many care, some hands on. Some as advocates making sure the right care is in place and stays in place.
We cannot care unless we care for ourselves too. Find ways to 'fill our own pot' so we can have enough.
You need a break, a time to gather up and recoup.
Keep reading these posts there are tips, short cuts and above all information.
We are all different, we have to find our own way, no ones else's will be a good fit or example.
Be kind to your self. There is no one way to cope.

 

[Andrew_McP]

The last thing on Earth I wanted to be was a carer. In fact I can remember the first time someone called me that; it felt like a stake through the heart, nailing me to a path I'd stumbled onto.

But the closer I got to having to make a choice between putting Mum in a care home and giving up work to care for her, the more I realised that -- for me anyway -- caring is the new National Service. I've never had to go to war or get conscripted down a mine, like my grandparents' generation, or get stationed in some godforsaken bit of Malaya for two years like my Dad, and I've never raised children. So it was time I stepped up and did my bit. Mum gets motivated, 24/7 care at bargain basement pricing and the Council's resources can be spread a bit less thinly around those with nobody to help.

However all cases are different. If I had something more useful to contribute to society I'd never have given up work. If I hadn't suddenly discovered I cared for this new, angry, but totally defenceless person more than I'd ever loved my tough, moody old Mum, I'd probably have walked the other way. And if I'd found myself caring for a partner who was no longer the person I married, then I'd probably feel less responsibility for them. But there are certainly no medals being handed out for throwing yourself onto the dementia hand grenade, and our loved ones would probably never have wanted us to do it. So there's no shame in sharing the responsibility with professionals.

Ultimately there's only one person who decides if we're carers. That's us. And it's our choice, even if it's often not much of a choice. I always say that, for me, the only thing worse than doing this would have been not doing it, and all the worry that would have given me.

Good luck finding peace with whatever choices the future holds for you.

 

[Duggies-girl]

I've been reading some other threads and it has confirmed that I am a selfish monster as I will only be too pleased when my husband has to go into a home and I don't have to be with him 24/7. I will get my life back and that is important to me. I feel very sorry for everyone who wants their old partner back. I do too, but it isn't possible so I want to move on and make a new life. The man stuck in front of the tv is not my husband..

No you are not a selfish monster. I feel like caring has just crept up on me without me realising and now I can't escape. I want my life back and my freedom. I really want some solitude and sometimes I just sit in our local asda cafe with a coffee as I can feel alone there. I wrote on another post recently that when this is over I don't want even so much as a pot plant to care for so I understand what you are feeling. I can't imagine doing this for years and I truly admire anyone who does but we are not all cut out for it. It is not a normal existence.

 

[Life]

I don't want to walk away but am not in a position to provide the level of care that Social Workers think I should provide. We have teenagers who need me to be their parent: To deal with school things, chauffeur them around, make sure they have food, clean clothes and to actually be there for them. And when I'm not doing that I'm working to earn money to support my family and so that I might have at least a small pension (and thanks to this Government my retirement date is now a long time in the future) and for my sanity.

After one particularly bad episode I was advised to leave him, but my OH is ill, he didn't ask for dementia; it's not his fault. And from a purely selfish point of view, if I leave I make myself and my children homeless.

Not being able to be a full-time Carer and not being willing to deliberately plunge my family into poverty does not mean I do not care. What we need is more help and support.

 

[Justmary]

And what rights does one have to decide how far one is prepared to take on this role?

Husband has dementia. Not in advance stage yet but I find it increasingly stressful looking after him and I've had an ECG today heart problem probably because of stress. I am not prepared to be a full time 24/7 carer. I cook, clean, do the shopping, look after the bills and take him out for various pleasure trips and medical appointments. I don't mind doing these things but I am not prepared to be a carer 24/7 or put up with his increasingly spiteful moods. I know it is the disease but that doesn't make it easier as he is no longer the kind loving man I married. I've accepted that man has gone.

Sites focussing on carers, including this one, tend to think everyone is cut out to give their lives up to care for their partner/parent but we aren't all the same and some of us don't want to embrace the role and have limits to what we are prepared to do.

What happens when I reach this limit? Who makes the rules? Where are my rights in all this? Should I simply walk away? I am not prepared to ruin my health looking after someone who is not going to get better. I've seen too many examples of partners worn down by caring.

Sorry for the rant but I can't find any answers to these questions on websites just mimsy words about the 'joy of caring'. Well I don't find it joyful at all.

And what rights does one have to decide how far one is prepared to take on this role?

Husband has dementia. Not in advance stage yet but I find it increasingly stressful looking after him and I've had an ECG today heart problem probably because of stress. I am not prepared to be a full time 24/7 carer. I cook, clean, do the shopping, look after the bills and take him out for various pleasure trips and medical appointments. I don't mind doing these things but I am not prepared to be a carer 24/7 or put up with his increasingly spiteful moods. I know it is the disease but that doesn't make it easier as he is no longer the kind loving man I married. I've accepted that man has gone.

Sites focussing on carers, including this one, tend to think everyone is cut out to give their lives up to care for their partner/parent but we aren't all the same and some of us don't want to embrace the role and have limits to what we are prepared to do.

What happens when I reach this limit? Who makes the rules? Where are my rights in all this? Should I simply walk away? I am not prepared to ruin my health looking after someone who is not going to get better. I've seen too many examples of partners worn down by caring.

Sorry for the rant but I can't find any answers to these questions on websites just mimsy words about the 'joy of caring'. Well I don't find it joyful at all.

Hello Annakey I certainly do not find it joyful. I know that my OH did not ask to be ill, but if I sacrifice my own life it isn't going to make him well again is it? I long to have an interesting and fulfilling life and now I feel that I'm just treading water until he goes into a home - and that will not happen for ages. After his diagnosis I read up as much as I could about A and like you, I was quite angry with the organisations that assumed that I was willing to just give up everything to be a carer. But I do think that TP is different and the people on here are wonderful. I have certainly learned a lot by reading the posts, and picked up all kind of tips, but mostly I have found comfort and understanding. And I think you are honest and brave. Mx

 

[Martarita]

And what rights does one have to decide how far one is prepared to take on this role?

Husband has dementia. Not in advance stage yet but I find it increasingly stressful looking after him and I've had an ECG today heart problem probably because of stress. I am not prepared to be a full time 24/7 carer. I cook, clean, do the shopping, look after the bills and take him out for various pleasure trips and medical appointments. I don't mind doing these things but I am not prepared to be a carer 24/7 or put up with his increasingly spiteful moods. I know it is the disease but that doesn't make it easier as he is no longer the kind loving man I married. I've accepted that man has gone.

Sites focussing on carers, including this one, tend to think everyone is cut out to give their lives up to care for their partner/parent but we aren't all the same and some of us don't want to embrace the role and have limits to what we are prepared to do.

What happens when I reach this limit? Who makes the rules? Where are my rights in all this? Should I simply walk away? I am not prepared to ruin my health looking after someone who is not going to get better. I've seen too many examples of partners worn down by caring.

Sorry for the rant but I can't find any answers to these questions on websites just mimsy words about the 'joy of caring'. Well I don't find it joyful at all.

Hi Annakey, I am a carer for my OH , who I love dearly ,before caring for my husband ,I cared for my mother for 20+years until my mother past away we then had a few years to try to enjoy our life .Then my husband was diagnosed with prostrate cancer ,so that was the start . We I say we because it affected both of us got through that then he started forgetting things word when he was speaking, appointments which I was there to help I always say I'm his mouth piece, then diagnosed with dementia so the caring begins anyway what I'm trying to say no I don't think you're selfish ,you're very brave to say what you're thinking,it's a hard job to take on you've got a really hard decision to make ,hope you make the right one for you .Take care x