Who decides that someone is a carer?

[TheBearsMummy]

Annakey I think you are very brave and I hope you will find the resolve to stand firm and not sacrifice your life as well as his.
You are quite right there is no joy at all in this and sadly no way to bring back the person you love. I have watched other people have their life slowly sucked away from them as they have sacrificed everything for someone who doesn't remember who they are.
We are 6 years into our caring and there may be many more yet to come, it is not a short amount of your life that you might lose it could be many, many years. The financial toll too can be very high.
Please don't think you will be judged harshly for saying no and please protect your own health and finances before it is too late.
There is a lot of good advice and support to be found on this site and I wish I had found it sooner.
Stepping back is not wrong and it will allow you to retain the happy memories of better times without the overlay of resentment and despair that this awful disease brings into our lives

 

[kindred]

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.

Ah, now there you have it sweetheart. Caring creeps up on you and by the time you might want to escape there is no energy left either! I don't think I would have known how to escape, I just kept on enduring like I was hypnotised.
There is joy back in my life, well a bit, when I go to Keith's nursing home and I experience the love and the tenderness and the mad fun there ...it is possible. Never care free again, but bit of joy now and then. with love, Geraldine aka kindred.

 

[kindred]

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.

I love your post, Andrew, really do. I love your perspective. When people moan about how awful it is today, I always say but at least we are not having German bombs dropped on us ... You are right. We have to make peace with ourselves and find meaning. My motto has always been go into the dark, show no fear. that keeps me going. Thank you.
warmest, Kindred.

 

[AliceA]

Andrew's post made me think. I suppose that we are all conditioned by out past, and that fuels our expectations.
My father was conscripted, I saw the devastating effect on my mother. I did have to shelter from falling bombs and doodlebugs. Later when at peace friends were conscripted into conflicts not of their choosing via National Service. We survived so it brought the gift of stoicism. I would not advocate that as a learning tool.
So I suppose choice means something different to each one of us.

Joy means something different too. I love the phrase 'finding joy in small things'.
Kindred has that gift, we all enjoy the humour of her thread.

Whatever we choose there are consequences, and our blinkered eyes choose the right option at the time.
Stay or leave (ouch, sounds as if I am wandering into the Brexit debate!)
Tomorrow depends on choices today.

Caring depends on our being able to survive to do it, violence is a redline for most, so is the wavering line of our own mental and physical health, other responsibilities may be for some people. We all have our abilities, my physical ones are weaker now.
What some may feel and see as selfishness is merely self survival. We judge ourself at the end of the day and too often far too harshly.
When we reach that point I hope we all have the courage and endurance to stay or leave.

Whatever the situation please, do not feel guilty. Only you know how you cope best. I visited a care home the other day, people were happy and safe. Sometimes, God and money willing, this is the best option.
Ignore those out side the situation they are not wearing your shoes, nor mine!

this is a brave and honest thread, well done for starting it and posting on it.

 

[marionq]

You use the word stoic which is so appropriate in this role of ours. Many of us don’t want to be in this place but grit our teeth and get on with it. It now suits me if my husband is almost silent and that is a terrible admission. Talking and sharing was what we did best for half a century but I have little interest in pointless nonsense. I never wanted to be a nurse either but the basic physical nursing duties I find I can do almost routinely.

 

[Annakey]

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

Thank you Martarita and everyone else who has replied. It has helped. I'm not really brave, I"m simply not prepared to sacrifice my health and well being for someone incapable of appreciating it if I did. We have been together for nearly 30 years and had a good relationship. That has gone and I"m finding it hard to remember the person he used to be.

I have thought it all through and know that I'm not going to be able to look after him when it is 24/7 with a needy stranger. If my speaking out has helped others I'm pleased. No one should feel they have to take on the task if they feel unable to do it. And it isn't fair on the sufferer to be looked after by someone who is resentful and conflicted.

Good wishes to everyone here and again thank you.

 

[hatto22]

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.

 

[hatto22]

You use the word stoic which is so appropriate in this role of ours. Many of us don’t want to be in this place but grit our teeth and get on with it. It now suits me if my husband is almost silent and that is a terrible admission. Talking and sharing was what we did best for half a century but I have little interest in pointless nonsense. I never wanted to be a nurse either but the basic physical nursing duties I find I can do almost routinely.

Silence is Golden. Nothing to feel guilty about there. It all becomes a lifestyle. Creeps up on us and before we know it we're living the dementia dream. And the same questions are spun out time and time again as routinely as the sun goes up and goes down. And for some strange reason we are always left to feel guilty about something that has happened during the day. But for each day that we do this we become a better version of ourselves. And as a consequence the expectation of ourselves grows higher and higher as the illness and world around us moves on. We steer ourselves in a dinghy and by the time the journey's ended we're gliding along in a full blown yacht of many colours. Because what we're all doing is brilliant. So let's all be proud of our efforts instead of wasting time on shame and guilt. The only reason we feel these emotions is because we're around long enough to experience them. We're all a pretty special bunch!!

 

[AliceA]

Well said Hatto22. Xxx

 

[kindred]

Silence is Golden. Nothing to feel guilty about there. It all becomes a lifestyle. Creeps up on us and before we know it we're living the dementia dream. And the same questions are spun out time and time again as routinely as the sun goes up and goes down. And for some strange reason we are always left to feel guilty about something that has happened during the day. But for each day that we do this we become a better version of ourselves. And as a consequence the expectation of ourselves grows higher and higher as the illness and world around us moves on. We steer ourselves in a dinghy and by the time the journey's ended we're gliding along in a full blown yacht of many colours. Because what we're all doing is brilliant. So let's all be proud of our efforts instead of wasting time on shame and guilt. The only reason we feel these emotions is because we're around long enough to experience them. We're all a pretty special bunch!!

Oh welcome to our forum and with posts like this, long may you be with us!! with thanks and warmest wishes, Kindred.

 

[Teddy1960]

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.

 

[Teddy1960]

Just found your post whilst searching for someone who feel like me.

I too cannot be a full time carer or nurse. I like you do everything, hold down a full time job, cook ,shop, manage finances and already I am starting to feel resentful. Why me , you know the usual questions.

I have a week off work and feel trapped . Work is my respite xx the admiral nurse insinuated I would have to give up work I am 58 and know way am I going to I don't care what people say it's my life xx

 

[Sam Luvit]

Hi @Annakey

As has been mentioned, the duty of care lies with SS, so no one can make you be a Carer, although, with what you do now, you already are one (technically). Even just the weekends mean you are doing over the “minimum” number of hours to qualify for Carers Allowance , although, that is only paid if you earn below £110 a week ( it might have gone up, but not much)

This is already increasing your stress levels & you have health issues as a result, or exasperated by it. You have to look after yourself. Even if you wanted to, you are no good to anyone, if you get ill too

Never in a million years did I think I wouId care for my mother. She wasn’t the cuddles & kiss it better type of mum, she never babysat, I took the kids to their house, did everything for them & my parents could say they saw their grandchildren

That said, like many I fell into caring by mistake. First dad was ill (not dementia), so I visited every weekend, then mum was diagnosed shortly after he died. I carried on visiting until I got to the point where I couldn’t keep going. Working full time & 160 mile round trip every weekend for nearly 2 years I was on my knees

At that point I made the decision to move in with mum. It wasn’t an easy decision. It took me 3 months to figure that I couldn’t not do it, even though a large part of me didn’t want to. I dragged my heels for a further 3 months, letting job searches make the decision. Not that I kept working for long after the move

Having decided, I certainly wouldn’t say I thought there was any “joy” in caring, but I was lucky that mum mellowed in some aspects, I found some voluntary work & I arranged a cleaner twice a week. I entered her world at her pace & things improved. Not sure if it wouId have worked with a lover I’m pretty sure it wouldn’t, so I’d have been thinking like you

The practicalities....

Your OH is assessed as an individual, just his income & savings are looked at for any help by SS. So, if you don’t already have separate bank accounts, separate them now. Have any & all your income paid into a different account. If you have joint savings, separate them. Set up a joint account & transfer money from both your accounts into that for the bills. By that, I mean gas, electric, rent/ mortgage etc

His money should pay for his things, clothes, meds, travel costs to appointments, in other words, anything he wouId pay for if you had no input. Keep records of spending. Just throw the bills in a file, it doesn’t need to be pretty, just so it can be found if needed

If you need a new bathroom, different car because if his diagnosis, the cost is his alone

Apply to the council for a council tax reduction on the grounds of (I think it’s) severe mental incapacity. His doctor has to sign the form, it should be free

Even if you are self funding (he has savings of over £23,500), ask SS for an assessment. If he is self funding, they will probably smile & tell you to arrange whatever care you want, but, he’s on their radar for later. They may offer info on day centres, Befriender’s, care homes, but you will have to ask for this with most. Money is tight & they don’t tend to offer it out

Whatever your line in the sand is, that’s your line. No one else is walking in your shoes, so no one else has any right to make you feel any guilt.

 

[lis66]

Great post hatto22 I am going to take your advice on board thank you x

 

[Teddy1960]

Hi @Annakey

As has been mentioned, the duty of care lies with SS, so no one can make you be a Carer, although, with what you do now, you already are one (technically). Even just the weekends mean you are doing over the “minimum” number of hours to qualify for Carers Allowance , although, that is only paid if you earn below £110 a week ( it might have gone up, but not much)

This is already increasing your stress levels & you have health issues as a result, or exasperated by it. You have to look after yourself. Even if you wanted to, you are no good to anyone, if you get ill too

Never in a million years did I think I wouId care for my mother. She wasn’t the cuddles & kiss it better type of mum, she never babysat, I took the kids to their house, did everything for them & my parents could say they saw their grandchildren

That said, like many I fell into caring by mistake. First dad was ill (not dementia), so I visited every weekend, then mum was diagnosed shortly after he died. I carried on visiting until I got to the point where I couldn’t keep going. Working full time & 160 mile round trip every weekend for nearly 2 years I was on my knees

At that point I made the decision to move in with mum. It wasn’t an easy decision. It took me 3 months to figure that I couldn’t not do it, even though a large part of me didn’t want to. I dragged my heels for a further 3 months, letting job searches make the decision. Not that I kept working for long after the move

Having decided, I certainly wouldn’t say I thought there was any “joy” in caring, but I was lucky that mum mellowed in some aspects, I found some voluntary work & I arranged a cleaner twice a week. I entered her world at her pace & things improved. Not sure if it wouId have worked with a lover I’m pretty sure it wouldn’t, so I’d have been thinking like you

The practicalities....

Your OH is assessed as an individual, just his income & savings are looked at for any help by SS. So, if you don’t already have separate bank accounts, separate them now. Have any & all your income paid into a different account. If you have joint savings, separate them. Set up a joint account & transfer money from both your accounts into that for the bills. By that, I mean gas, electric, rent/ mortgage etc

His money should pay for his things, clothes, meds, travel costs to appointments, in other words, anything he wouId pay for if you had no input. Keep records of spending. Just throw the bills in a file, it doesn’t need to be pretty, just so it can be found if needed

If you need a new bathroom, different car because if his diagnosis, the cost is his alone

Apply to the council for a council tax reduction on the grounds of (I think it’s) severe mental incapacity. His doctor has to sign the form, it should be free

Even if you are self funding (he has savings of over £23,500), ask SS for an assessment. If he is self funding, they will probably smile & tell you to arrange whatever care you want, but, he’s on their radar for later. They may offer info on day centres, Befriender’s, care homes, but you will have to ask for this with most. Money is tight & they don’t tend to offer it out

Whatever your line in the sand is, that’s your line. No one else is walking in your shoes, so no one else has any right to make you feel any guilt.

Great post hatto22 I am going to take your advice on board thank you x

Hi @Annakey

As has been mentioned, the duty of care lies with SS, so no one can make you be a Carer, although, with what you do now, you already are one (technically). Even just the weekends mean you are doing over the “minimum” number of hours to qualify for Carers Allowance , although, that is only paid if you earn below £110 a week ( it might have gone up, but not much)

This is already increasing your stress levels & you have health issues as a result, or exasperated by it. You have to look after yourself. Even if you wanted to, you are no good to anyone, if you get ill too

Never in a million years did I think I wouId care for my mother. She wasn’t the cuddles & kiss it better type of mum, she never babysat, I took the kids to their house, did everything for them & my parents could say they saw their grandchildren

That said, like many I fell into caring by mistake. First dad was ill (not dementia), so I visited every weekend, then mum was diagnosed shortly after he died. I carried on visiting until I got to the point where I couldn’t keep going. Working full time & 160 mile round trip every weekend for nearly 2 years I was on my knees

At that point I made the decision to move in with mum. It wasn’t an easy decision. It took me 3 months to figure that I couldn’t not do it, even though a large part of me didn’t want to. I dragged my heels for a further 3 months, letting job searches make the decision. Not that I kept working for long after the move

Having decided, I certainly wouldn’t say I thought there was any “joy” in caring, but I was lucky that mum mellowed in some aspects, I found some voluntary work & I arranged a cleaner twice a week. I entered her world at her pace & things improved. Not sure if it wouId have worked with a lover I’m pretty sure it wouldn’t, so I’d have been thinking like you

The practicalities....

Your OH is assessed as an individual, just his income & savings are looked at for any help by SS. So, if you don’t already have separate bank accounts, separate them now. Have any & all your income paid into a different account. If you have joint savings, separate them. Set up a joint account & transfer money from both your accounts into that for the bills. By that, I mean gas, electric, rent/ mortgage etc

His money should pay for his things, clothes, meds, travel costs to appointments, in other words, anything he wouId pay for if you had no input. Keep records of spending. Just throw the bills in a file, it doesn’t need to be pretty, just so it can be found if needed

If you need a new bathroom, different car because if his diagnosis, the cost is his alone

Apply to the council for a council tax reduction on the grounds of (I think it’s) severe mental incapacity. His doctor has to sign the form, it should be free

Even if you are self funding (he has savings of over £23,500), ask SS for an assessment. If he is self funding, they will probably smile & tell you to arrange whatever care you want, but, he’s on their radar for later. They may offer info on day centres, Befriender’s, care homes, but you will have to ask for this with most. Money is tight & they don’t tend to offer it out

Whatever your line in the sand is, that’s your line. No one else is walking in your shoes, so no one else has any right to make you feel any guilt.

Ths

 

[Teddy1960]

Thank you so much for that very useful post. I really appreciate you taking the time to write such wise words

 

[Sam Luvit]

Thank you so much for that very useful post. I really appreciate you taking the time to write such wise words

That’s the beauty of TP, we all learn from each other as we share