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caring for someone

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By (user no longer on site) OP   
over a year ago

A thread for carers to share their thoughts,how their day is going or random rubbish.

I was a carer for 10 years for my twin sister who had cerebral palsy. I was young,had children,a husband and house to keep. It was very,very hard. It would have been nice to have had some impartial people to chat to now and then

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By (user no longer on site)
over a year ago

This would be great. I to am a full time carer to my elderly disabled mum. Its bloody hard like you have experienced. People are quick to judge me for saying ita a get out of jail card so i dont have to work. Wrong!!!!

I would give anything to have my old life back. Before i came a carer nearly five years ago i had been in full time employment and had a really good life. I am now both physically amd mentally drained most days. But she is my mum and love her dearly and will care for her for as long as i can

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By (user no longer on site)
over a year ago

Nice idea. We often forget to ask the question "who cares for the carers?"

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By (user no longer on site)
over a year ago


"This would be great. I to am a full time carer to my elderly disabled mum. Its bloody hard like you have experienced. People are quick to judge me for saying ita a get out of jail card so i dont have to work. Wrong!!!!

I would give anything to have my old life back. Before i came a carer nearly five years ago i had been in full time employment and had a really good life. I am now both physically amd mentally drained most days. But she is my mum and love her dearly and will care for her for as long as i can "

My mum is disabled and most likely going to be blind by the end of the year. My stepdad does a cracking job but i know the day i lose my full tome job, and free time will come soon as she is my mum and i love her too much to see others stuggle to help her x

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By (user no longer on site) OP   
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" "

Usually nobody. There are respite centres but I couldn't let anyone but family help me out. Unfortunately they all worked so I couldn't ask often

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By *oddyWoman
over a year ago

between havant and chichester

I was my dads carer with his strokes and heart attacks with no help from rest of family many a time i found him on the floor when i had to do the school run.

now im a carer with ladies with dementia

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By (user no longer on site)
over a year ago

Im not a carer for my grandmother but i do take her shopping and on days out etc, she's perfectly well but its just the social element of getting out and about.

My grandad hates driving and still works full time so guess im just company for her. I enjoy it, she does as much for me in motivation to get me out n about as i am for her so its win win.

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By (user no longer on site) OP   
over a year ago


"This would be great. I to am a full time carer to my elderly disabled mum. Its bloody hard like you have experienced. People are quick to judge me for saying ita a get out of jail card so i dont have to work. Wrong!!!!

I would give anything to have my old life back. Before i came a carer nearly five years ago i had been in full time employment and had a really good life. I am now both physically amd mentally drained most days. But she is my mum and love her dearly and will care for her for as long as i can

My mum is disabled and most likely going to be blind by the end of the year. My stepdad does a cracking job but i know the day i lose my full tome job, and free time will come soon as she is my mum and i love her too much to see others stuggle to help her x"

I knew as a child I would be my sister's carer. I was 24 when my dad got a brain tumour and my mum couldn't look after 2 people. I'd always told my mum I would look after her when she couldn't

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By (user no longer on site) OP   
over a year ago


"Im not a carer for my grandmother but i do take her shopping and on days out etc, she's perfectly well but its just the social element of getting out and about.

My grandad hates driving and still works full time so guess im just company for her. I enjoy it, she does as much for me in motivation to get me out n about as i am for her so its win win. "

I find it sad when older people are neglected. They did their years of caring for us

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By (user no longer on site)
over a year ago

Did u full time carers know u can get respite grants to the value of £500 to pay for people to come in and help while you just do your own thing?

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By (user no longer on site) OP   
over a year ago


"I was my dads carer with his strokes and heart attacks with no help from rest of family many a time i found him on the floor when i had to do the school run.

now im a carer with ladies with dementia"

A very difficult job. Leaving a family member with someone else and knowing they are being well looked after is reassuring

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By (user no longer on site) OP   
over a year ago


"Did u full time carers know u can get respite grants to the value of £500 to pay for people to come in and help while you just do your own thing? "

Not everyone likes strangers coming in to help. The people being cared for like family members to bathe and dress them

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By (user no longer on site)
over a year ago

I have a 5 year old with autism. Even though he's physically able, he sees no danger and needs constant supervision. I find the most draining thing is that I'm always on alert. He often wakes during the night, i could get a call from school at any time, etc. It's a difficult situation to manage but somehow, by the skin of my teeth, I'm managing to raise him and get my degree.

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By (user no longer on site)
over a year ago


"Did u full time carers know u can get respite grants to the value of £500 to pay for people to come in and help while you just do your own thing?

Not everyone likes strangers coming in to help. The people being cared for like family members to bathe and dress them "

I wouldnt let a stranger do it as long as i could, as i know that is not what my mum would want x

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By (user no longer on site)
over a year ago


"Im not a carer for my grandmother but i do take her shopping and on days out etc, she's perfectly well but its just the social element of getting out and about.

My grandad hates driving and still works full time so guess im just company for her. I enjoy it, she does as much for me in motivation to get me out n about as i am for her so its win win.

I find it sad when older people are neglected. They did their years of caring for us "

woahhh my grandparents arent neglected, i was just saying they are both very important in my life and im in regular contact. These days because im the oly family member down in Devon we are just reliant on each other, they are just as important to me than my mum is.

When the time comes that i lose one i will be devistated. We have had the 'talk' about the end and i know what their wishes are, but they are 74 and 72 so lets hope thats a long way off yet

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By (user no longer on site) OP   
over a year ago


"I have a 5 year old with autism. Even though he's physically able, he sees no danger and needs constant supervision. I find the most draining thing is that I'm always on alert. He often wakes during the night, i could get a call from school at any time, etc. It's a difficult situation to manage but somehow, by the skin of my teeth, I'm managing to raise him and get my degree. "

The being constantly tired was the worse part for me. You're doing really well to study and care for him

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By (user no longer on site) OP   
over a year ago


"Im not a carer for my grandmother but i do take her shopping and on days out etc, she's perfectly well but its just the social element of getting out and about.

My grandad hates driving and still works full time so guess im just company for her. I enjoy it, she does as much for me in motivation to get me out n about as i am for her so its win win.

I find it sad when older people are neglected. They did their years of caring for us

woahhh my grandparents arent neglected, i was just saying they are both very important in my life and im in regular contact. These days because im the oly family member down in Devon we are just reliant on each other, they are just as important to me than my mum is.

When the time comes that i lose one i will be devistated. We have had the 'talk' about the end and i know what their wishes are, but they are 74 and 72 so lets hope thats a long way off yet "

Lol I wasn't talking about your grandparents. Other old people who don't have caring families

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By (user no longer on site)
over a year ago


"Did u full time carers know u can get respite grants to the value of £500 to pay for people to come in and help while you just do your own thing?

Not everyone likes strangers coming in to help. The people being cared for like family members to bathe and dress them "

unfortunately i cant sympathize with people who moan about it then..

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By (user no longer on site)
over a year ago

Kudos to the carers. The world needs more of them. I get frazzled just raising my two teen age sons and my two dogs. It can be isolating and thankless so here is to you carers, Thank you.

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By (user no longer on site) OP   
over a year ago


"Did u full time carers know u can get respite grants to the value of £500 to pay for people to come in and help while you just do your own thing?

Not everyone likes strangers coming in to help. The people being cared for like family members to bathe and dress them

unfortunately i cant sympathize with people who moan about it then.. "

Not many people moan about it. On this thread we are sharing experiences. Given the option of doing it again I would choose to do it. Saying it's hard isn't moaning about it it's relieving stress

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By (user no longer on site)
over a year ago


"Did u full time carers know u can get respite grants to the value of £500 to pay for people to come in and help while you just do your own thing?

Not everyone likes strangers coming in to help. The people being cared for like family members to bathe and dress them

unfortunately i cant sympathize with people who moan about it then..

Not many people moan about it. On this thread we are sharing experiences. Given the option of doing it again I would choose to do it. Saying it's hard isn't moaning about it it's relieving stress "

And being heard in a supportive environment without judgement, is part of the idea I have around caring for carers

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By (user no longer on site)
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" "
]

im a community carer and we offer respite for the carers - often they need as much support if not more than the patient - i work mostly in mental health so very stressy for family and close friends

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By (user no longer on site) OP   
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" ]

im a community carer and we offer respite for the carers - often they need as much support if not more than the patient - i work mostly in mental health so very stressy for family and close friends "

I used to feel guilty if I asked for help. I felt I was letting my sister down

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By (user no longer on site)
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" ]

im a community carer and we offer respite for the carers - often they need as much support if not more than the patient - i work mostly in mental health so very stressy for family and close friends "

Another very important part too but as the OP says accepting tge respite help can be difficult for some people

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By (user no longer on site)
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" ]

im a community carer and we offer respite for the carers - often they need as much support if not more than the patient - i work mostly in mental health so very stressy for family and close friends

I used to feel guilty if I asked for help. I felt I was letting my sister down "

I imagine feelings of guilt around taking care of your own needs as a carer is quite common

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By *ouple in LancashireCouple
over a year ago

in Lancashire


"Nice idea. We often forget to ask the question "who cares for the carers?" "

this..

massive respect to those who do so..

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By (user no longer on site) OP   
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" ]

im a community carer and we offer respite for the carers - often they need as much support if not more than the patient - i work mostly in mental health so very stressy for family and close friends

I used to feel guilty if I asked for help. I felt I was letting my sister down

I imagine feelings of guilt around taking care of your own needs as a carer is quite common "

I still feel bad now. When she died I thought I could have done more for her. People looking after anyone have my respect

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By *ichaelangelaCouple
over a year ago

notts

my wife is carer for her mum who has alzheimers, she works harder than most people who have a job, and what does she get back??? no love from her mum, violence as her mum is always lashing out (just as she used to do when her kids were young) and the government pay my wife (with the latest pay rise) slightly over £61 a week !!

as she said, its her mum and she would gladly do it for free, but think how much it saves the government by us having her at home as she has no savings/property to pay for her own care.

also, since we took her in, our life has completely stopped, no nights out much, unless we can afford a bit of time in a respite home, she had 6 children, my wife is the only one who looks after her, the other 5 dont want to know, never visit, never call her on the phone.

i'll stop there but there is so much more that i would love to say

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By (user no longer on site)
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" ]

im a community carer and we offer respite for the carers - often they need as much support if not more than the patient - i work mostly in mental health so very stressy for family and close friends

I used to feel guilty if I asked for help. I felt I was letting my sister down

I imagine feelings of guilt around taking care of your own needs as a carer is quite common

I still feel bad now. When she died I thought I could have done more for her. People looking after anyone have my respect "

Mine too

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By (user no longer on site)
over a year ago


"I have a 5 year old with autism. Even though he's physically able, he sees no danger and needs constant supervision. I find the most draining thing is that I'm always on alert. He often wakes during the night, i could get a call from school at any time, etc. It's a difficult situation to manage but somehow, by the skin of my teeth, I'm managing to raise him and get my degree.

The being constantly tired was the worse part for me. You're doing really well to study and care for him "

Thanks, nana. It ain't easy, but it's gotta be done. I need a good job to support him and provide for his needs as he grows. The constant tiredness and resulting mental fog is the worst part but I've learned to function within it. He's slowly starting to sleep more at night so that's helping too. In many ways, I'm lucky. Many carers have more complex issues to care for with their loved ones, and few who understand the demands or think that because they're carrying for family it's something they volunteered for and they don't deserve compassion. The truth is, carers not only care physically but also help those they are caring for cope with mental and emotional traumas too. Everyday. And the carers have to do this while coping with their own life demands, including the mental and emotional side of helping a loved one through something that they would never have chosen to go through. Those who make the choice to care for people deserve respect and compassion.

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By (user no longer on site) OP   
over a year ago

You have to put your life on hold. When you have young children too you have to make sure they get the attention they should. You feel like you are tearing yourself in two,or three if you have a husband too

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By (user no longer on site)
over a year ago


"my wife is carer for her mum who has alzheimers, she works harder than most people who have a job, and what does she get back??? no love from her mum, violence as her mum is always lashing out (just as she used to do when her kids were young) and the government pay my wife (with the latest pay rise) slightly over £61 a week !!

as she said, its her mum and she would gladly do it for free, but think how much it saves the government by us having her at home as she has no savings/property to pay for her own care.

also, since we took her in, our life has completely stopped, no nights out much, unless we can afford a bit of time in a respite home, she had 6 children, my wife is the only one who looks after her, the other 5 dont want to know, never visit, never call her on the phone.

i'll stop there but there is so much more that i would love to say"

I feel sad and a little helpless reading your post

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By (user no longer on site) OP   
over a year ago

The bottom line is no matter how hard it is we do it because we love them. No one is looking for sympathy or pity

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By (user no longer on site)
over a year ago


"The bottom line is no matter how hard it is we do it because we love them. No one is looking for sympathy or pity "

Of course not. I wish more was done to help though.

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By *ichaelangelaCouple
over a year ago

notts


"The bottom line is no matter how hard it is we do it because we love them. No one is looking for sympathy or pity "

this is correct, but a little more financial help from the government would not go amiss

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By (user no longer on site)
over a year ago


"The bottom line is no matter how hard it is we do it because we love them. No one is looking for sympathy or pity "

I agree that few look for sympathy or pity, but i think that many would appreciate compassion, understanding and a little empathy.

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By (user no longer on site)
over a year ago

Caring for others is hard work. draining both emotionally amd physically. There is no shame in asking for help / respite /support.

I think some ppl forget that profesionals in the care industry are usually offered a lot more training and support to do their jobs effectively whilst maintaining their own health and lives.

Other relatives etc who take up the same role get a lot less support.

And sometimes forget that altho the people being cared for might prefer a relative caring for them..sometimes a bit of help from relevant professionals can make sure the person being cared for and the carer are in a lot better situation

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By *ichaelangelaCouple
over a year ago

notts


"Caring for others is hard work. draining both emotionally amd physically. There is no shame in asking for help / respite /support.

I think some ppl forget that profesionals in the care industry are usually offered a lot more training and support to do their jobs effectively whilst maintaining their own health and lives.

Other relatives etc who take up the same role get a lot less support.

And sometimes forget that altho the people being cared for might prefer a relative caring for them..sometimes a bit of help from relevant professionals can make sure the person being cared for and the carer are in a lot better situation

"

this is also very true, we have found though, that getting the information you need about what help is available is not freely given, you have to spend alot of time searching for the help, then when you find some, the hoops you have to jump through are just unbelieveable to get it

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By (user no longer on site)
over a year ago

That is very true and unfortunately more common these days due to financial cut backs

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By *qua vitaeWoman
over a year ago

Shropshire/Midlands

Presently, my husband and I are caring for our 14 son with autism without any other family support. At the moment he's going through puberty, which has exacerbated his anxieties, tics and heightened his sense of hearing to the point where any noise we or anyone else makes at home or whilst out,(opening and closing doors, coughing, baby's crying, etc.), he shouts, bangs, causes damage (at home) and self harms. He's in mainstream school with support, but there are times he needs to come home or unable to go onto school excursions. We were told at an appointment last Friday by the Local government services (CAMHS) they can only offer us therapy on a long waiting list and examination by a medic on _iew to being prescribed Prozac (this I've put on hold as not convinced it's the best course of action). The local autistic co-ordinator is on maternity leave and hasn't been replaced!! Unfortunately in Shropshire, there's not much support for mild to moderate disabilities. Luckily, I have a friend in a similar position previously in the Midlands, who's going to get a few good people to ring me.

Unless you're in my shoes, people do not understand how difficult and stressful caring for someone it is. Unfortunately, some people judge me, thinking I have it easy because I only work one day a week, have a husband who is retired at home and just completed a university degree. I would like to see them cope in my shoes for a day!

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By *ncorMan
over a year ago

Ipswich

Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??

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By *asandmeCouple
over a year ago

camden town

I'm a carer for my wife and the amount of support carers get is (in my experience) horrible. My wife keeps asking around for carer support for me but is constantly told that due to cutbacks, it is currently unavailable.

We get by without the support, but as time goes on, it gets harder. I think thats one of the joys of swinging: Every meet gives you an opportunity to just forget the day to day world and enjoy life.

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By *qua vitaeWoman
over a year ago

Shropshire/Midlands


"I have a 5 year old with autism. Even though he's physically able, he sees no danger and needs constant supervision. I find the most draining thing is that I'm always on alert. He often wakes during the night, i could get a call from school at any time, etc. It's a difficult situation to manage but somehow, by the skin of my teeth, I'm managing to raise him and get my degree. "

Good on you for getting a degree .

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By (user no longer on site)
over a year ago

Big high five to all carers xx

lovely supportive thread. Xx

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By (user no longer on site)
over a year ago


"Presently, my husband and I are caring for our 14 son with autism without any other family support. At the moment he's going through puberty, which has exacerbated his anxieties, tics and heightened his sense of hearing to the point where any noise we or anyone else makes at home or whilst out,(opening and closing doors, coughing, baby's crying, etc.), he shouts, bangs, causes damage (at home) and self harms. He's in mainstream school with support, but there are times he needs to come home or unable to go onto school excursions. We were told at an appointment last Friday by the Local government services (CAMHS) they can only offer us therapy on a long waiting list and examination by a medic on _iew to being prescribed Prozac (this I've put on hold as not convinced it's the best course of action). The local autistic co-ordinator is on maternity leave and hasn't been replaced!! Unfortunately in Shropshire, there's not much support for mild to moderate disabilities. Luckily, I have a friend in a similar position previously in the Midlands, who's going to get a few good people to ring me.

Unless you're in my shoes, people do not understand how difficult and stressful caring for someone it is. Unfortunately, some people judge me, thinking I have it easy because I only work one day a week, have a husband who is retired at home and just completed a university degree. I would like to see them cope in my shoes for a day!"

Omg u only work one day a week..u lucky thing

.....

compared to being at home and caring for your son it sounds like yr one day at work is a relatve holiday lol

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By (user no longer on site)
over a year ago


"Nice idea. We often forget to ask the question "who cares for the carers?" ]

im a community carer and we offer respite for the carers - often they need as much support if not more than the patient - i work mostly in mental health so very stressy for family and close friends

I used to feel guilty if I asked for help. I felt I was letting my sister down

I imagine feelings of guilt around taking care of your own needs as a carer is quite common

I still feel bad now. When she died I thought I could have done more for her. People looking after anyone have my respect

Mine too "

we help with this , listen, do whatever we can , sometimes just doing something normal together helps more than the top specialists, and this is often with the family not the patient -

first thing i was told when training for the job was dont get attached - nigh on impossible id say

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By (user no longer on site)
over a year ago

[Removed by poster at 21/07/14 10:50:39]

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By (user no longer on site)
over a year ago


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??"

I'm not british. I'm American. I have noone to help with my son. Ive asked for help, i.e. respite once every few months so i can sleep. I've asked 3 times. What I've recieved is a couple of hours a week to cover classes in uni, as they can't justify spending money on respite.

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By *qua vitaeWoman
over a year ago

Shropshire/Midlands


"Presently, my husband and I are caring for our 14 son with autism without any other family support. At the moment he's going through puberty, which has exacerbated his anxieties, tics and heightened his sense of hearing to the point where any noise we or anyone else makes at home or whilst out,(opening and closing doors, coughing, baby's crying, etc.), he shouts, bangs, causes damage (at home) and self harms. He's in mainstream school with support, but there are times he needs to come home or unable to go onto school excursions. We were told at an appointment last Friday by the Local government services (CAMHS) they can only offer us therapy on a long waiting list and examination by a medic on _iew to being prescribed Prozac (this I've put on hold as not convinced it's the best course of action). The local autistic co-ordinator is on maternity leave and hasn't been replaced!! Unfortunately in Shropshire, there's not much support for mild to moderate disabilities. Luckily, I have a friend in a similar position previously in the Midlands, who's going to get a few good people to ring me.

Unless you're in my shoes, people do not understand how difficult and stressful caring for someone it is. Unfortunately, some people judge me, thinking I have it easy because I only work one day a week, have a husband who is retired at home and just completed a university degree. I would like to see them cope in my shoes for a day!

Omg u only work one day a week..u lucky thing

.....

compared to being at home and caring for your son it sounds like yr one day at work is a relatve holiday lol "

It is. Dealing with the general public is a breeze and keeps me sane.

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By (user no longer on site)
over a year ago


"I have a 5 year old with autism. Even though he's physically able, he sees no danger and needs constant supervision. I find the most draining thing is that I'm always on alert. He often wakes during the night, i could get a call from school at any time, etc. It's a difficult situation to manage but somehow, by the skin of my teeth, I'm managing to raise him and get my degree.

Good on you for getting a degree ."

Thank you

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By *qua vitaeWoman
over a year ago

Shropshire/Midlands


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??

I'm not british. I'm American. I have noone to help with my son. Ive asked for help, i.e. respite once every few months so i can sleep. I've asked 3 times. What I've recieved is a couple of hours a week to cover classes in uni, as they can't justify spending money on respite. "

Do you get DLA and carer's allowance?

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By *qua vitaeWoman
over a year ago

Shropshire/Midlands


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??"

Indeed we do, but it's not always easy to get. Especially if you don't fit into the correct 'criteria' and it depends on your authority, and whether the person who needs the care is willing to have strangers or different people look after them. People with autism especially can't cope with change or strangers.

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By (user no longer on site)
over a year ago


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??

I'm not british. I'm American. I have noone to help with my son. Ive asked for help, i.e. respite once every few months so i can sleep. I've asked 3 times. What I've recieved is a couple of hours a week to cover classes in uni, as they can't justify spending money on respite.

Do you get DLA and carer's allowance?"

I get his dla but not carer's because I'm a student. And since he's over 5 now i can't get income support for the summer break between uni sessions unless i get carers. And i can't get jsa because i can't go out and look for work. I tried to put him in after school/holiday club but because he needs one to one support they won't take him. There's no funding for one to one support outside of school hours and I'm not able to fund it myself. Rather vicious circle.

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By (user no longer on site)
over a year ago

I sympathize well all carers and former carers in this thread. Its harder work than being emoyed. Our job is 24/7. We never switch off even when we go to bed. I to have sibling who shall we say out of sight out of mind. Have a sister who lives not even two minutes away only ever sees mum once every few weeks and never calls. And a brother who lives in oz who hasnt spoken to my mum in 15 months. But both of them dont think it their duty to keep regular contact. They say its my duty to care for her and for me to remind mum to contact them. Hello they are her children they should have a duty to ring their mother regular. She has demensia, emphisema, and had a stroke nearly 5 years ago which has left her with very little use of her body. Its damn hard work looking after her and the only restpite i get is when my elder sister sits with her whilst i pop into town and pay bills and do the shopping. Then if im gone for more than a couple hours get moaned at. I think there should be more information out there for us carers ie what help us carers are entitled to etc. iv lost count how many times iv been lost in the system with social services iv now given up on them

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By (user no longer on site)
over a year ago


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??

I'm not british. I'm American. I have noone to help with my son. Ive asked for help, i.e. respite once every few months so i can sleep. I've asked 3 times. What I've recieved is a couple of hours a week to cover classes in uni, as they can't justify spending money on respite.

Do you get DLA and carer's allowance?

I get his dla but not carer's because I'm a student. And since he's over 5 now i can't get income support for the summer break between uni sessions unless i get carers. And i can't get jsa because i can't go out and look for work. I tried to put him in after school/holiday club but because he needs one to one support they won't take him. There's no funding for one to one support outside of school hours and I'm not able to fund it myself. Rather vicious circle. "

That sounds tough and frustrating

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By *ove bi guysWoman
over a year ago

Birmingham


"my wife is carer for her mum who has alzheimers, she works harder than most people who have a job, and what does she get back??? no love from her mum, violence as her mum is always lashing out (just as she used to do when her kids were young) and the government pay my wife (with the latest pay rise) slightly over £61 a week !!

as she said, its her mum and she would gladly do it for free, but think how much it saves the government by us having her at home as she has no savings/property to pay for her own care.

also, since we took her in, our life has completely stopped, no nights out much, unless we can afford a bit of time in a respite home, she had 6 children, my wife is the only one who looks after her, the other 5 dont want to know, never visit, never call her on the phone.

i'll stop there but there is so much more that i would love to say"

Have you been referred to the Admiral Nurses ? They can offer support for carers of families with Dementia etc

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By (user no longer on site)
over a year ago


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??

I'm not british. I'm American. I have noone to help with my son. Ive asked for help, i.e. respite once every few months so i can sleep. I've asked 3 times. What I've recieved is a couple of hours a week to cover classes in uni, as they can't justify spending money on respite.

Do you get DLA and carer's allowance?

I get his dla but not carer's because I'm a student. And since he's over 5 now i can't get income support for the summer break between uni sessions unless i get carers. And i can't get jsa because i can't go out and look for work. I tried to put him in after school/holiday club but because he needs one to one support they won't take him. There's no funding for one to one support outside of school hours and I'm not able to fund it myself. Rather vicious circle.

That sounds tough and frustrating "

Just a little

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By (user no longer on site)
over a year ago


"I sympathize well all carers and former carers in this thread. Its harder work than being emoyed. Our job is 24/7. We never switch off even when we go to bed. I to have sibling who shall we say out of sight out of mind. Have a sister who lives not even two minutes away only ever sees mum once every few weeks and never calls. And a brother who lives in oz who hasnt spoken to my mum in 15 months. But both of them dont think it their duty to keep regular contact. They say its my duty to care for her and for me to remind mum to contact them. Hello they are her children they should have a duty to ring their mother regular. She has demensia, emphisema, and had a stroke nearly 5 years ago which has left her with very little use of her body. Its damn hard work looking after her and the only restpite i get is when my elder sister sits with her whilst i pop into town and pay bills and do the shopping. Then if im gone for more than a couple hours get moaned at. I think there should be more information out there for us carers ie what help us carers are entitled to etc. iv lost count how many times iv been lost in the system with social services iv now given up on them "

I think I'd feel quite angry in that situation

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By *ove bi guysWoman
over a year ago

Birmingham

I am a very part time carer.... My aunt lives with my nan and great aunt (sisters, 86 & 88) both have various medical conditions and both have dementia .... Its a tiring and emotionally draining 'job'.

We are fortunate, my aunt lives with and does the bulk, my mom does all appointments and 2 days and nights so my aunt can work and I work full time over 4 days so I can give a days help too. My brother and sister work full time too and between the three of us we give extra care/respite on saturday so my aunt can get out.

Its takes a lot of planning, discussing and hard work while trying to keep a life balance but its what we do as a family.

My family all pulled together and helped raise us as kids, mom n dad were able to work thanks to family and we had loads of love and attention so now its our time to give back.

Hats off to all the carers xx

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By (user no longer on site)
over a year ago


"I sympathize well all carers and former carers in this thread. Its harder work than being emoyed. Our job is 24/7. We never switch off even when we go to bed. I to have sibling who shall we say out of sight out of mind. Have a sister who lives not even two minutes away only ever sees mum once every few weeks and never calls. And a brother who lives in oz who hasnt spoken to my mum in 15 months. But both of them dont think it their duty to keep regular contact. They say its my duty to care for her and for me to remind mum to contact them. Hello they are her children they should have a duty to ring their mother regular. She has demensia, emphisema, and had a stroke nearly 5 years ago which has left her with very little use of her body. Its damn hard work looking after her and the only restpite i get is when my elder sister sits with her whilst i pop into town and pay bills and do the shopping. Then if im gone for more than a couple hours get moaned at. I think there should be more information out there for us carers ie what help us carers are entitled to etc. iv lost count how many times iv been lost in the system with social services iv now given up on them

I think I'd feel quite angry in that situation "

I do. I have very little respect for my siblings. As long as they still have theirs lives its ok. I gave up a good job, relationship and social life to care for mum as well as my daughter taking a back seat( which she totally supportive of). They all said yes be there to help but where are they now. At least i know when the time comes i will have a clear concience and hold my hed up high and say yes i cared for mum and yes i gave her the best possible care, time and attention in her ladt few years. What goes around comes around

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By (user no longer on site)
over a year ago


"I sympathize well all carers and former carers in this thread. Its harder work than being emoyed. Our job is 24/7. We never switch off even when we go to bed. I to have sibling who shall we say out of sight out of mind. Have a sister who lives not even two minutes away only ever sees mum once every few weeks and never calls. And a brother who lives in oz who hasnt spoken to my mum in 15 months. But both of them dont think it their duty to keep regular contact. They say its my duty to care for her and for me to remind mum to contact them. Hello they are her children they should have a duty to ring their mother regular. She has demensia, emphisema, and had a stroke nearly 5 years ago which has left her with very little use of her body. Its damn hard work looking after her and the only restpite i get is when my elder sister sits with her whilst i pop into town and pay bills and do the shopping. Then if im gone for more than a couple hours get moaned at. I think there should be more information out there for us carers ie what help us carers are entitled to etc. iv lost count how many times iv been lost in the system with social services iv now given up on them

I think I'd feel quite angry in that situation

I do. I have very little respect for my siblings. As long as they still have theirs lives its ok. I gave up a good job, relationship and social life to care for mum as well as my daughter taking a back seat( which she totally supportive of). They all said yes be there to help but where are they now. At least i know when the time comes i will have a clear concience and hold my hed up high and say yes i cared for mum and yes i gave her the best possible care, time and attention in her ladt few years. What goes around comes around"

Completely understandable

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By *bony in IvoryCouple
over a year ago

Black&White Utopia

Having cared for both my Mum n Dad when they had terminal cancer can fully understand the situation many on this thread are expressing... Single handidly at first untill palative nurses then stepped in and in their words allowed me ' to be a daughter again as they would take over the main caring'

Was interesting also to hear just how much help there was for all of us as a family also how many in similar situations , infact refused help , due to the generation they came from etc.

Wouldn't have had it any other way! Was there for both of them from start to finish and in my World ,its how it is sposed ta be ......

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By *uby0000Woman
over a year ago

hertfordshire

I am in awe of anyone that is a carer

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By *qua vitaeWoman
over a year ago

Shropshire/Midlands


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??

I'm not british. I'm American. I have noone to help with my son. Ive asked for help, i.e. respite once every few months so i can sleep. I've asked 3 times. What I've recieved is a couple of hours a week to cover classes in uni, as they can't justify spending money on respite.

Do you get DLA and carer's allowance?

I get his dla but not carer's because I'm a student. And since he's over 5 now i can't get income support for the summer break between uni sessions unless i get carers. And i can't get jsa because i can't go out and look for work. I tried to put him in after school/holiday club but because he needs one to one support they won't take him. There's no funding for one to one support outside of school hours and I'm not able to fund it myself. Rather vicious circle. "

You still should be able to get carer's allowance being a student, as long as you don't earn over a certain amount - can't recall what it is presently and spend at least 35 hours a week caring for the person.

I've been a student for the last 4 years and still get it. Also, are you aware that you can get the higher rate of Child Tax Credit with the DLA. If getting the carer's allowance, that is then means tested against it. And then there is 'Family Fund', a charity which gives grants for equipment needed for the care of the child and helps families have a break such as, washing machines, car seats, funding towards a holiday money, etc.

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By (user no longer on site)
over a year ago


"Did u full time carers know u can get respite grants to the value of £500 to pay for people to come in and help while you just do your own thing?

Not everyone likes strangers coming in to help. The people being cared for like family members to bathe and dress them

unfortunately i cant sympathize with people who moan about it then.. "

I'm not aware of anybody moaning

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By *B9 QueenWoman
over a year ago

Over the rainbow, under the bridge


"A thread for carers to share their thoughts,how their day is going or random rubbish.

I was a carer for 10 years for my twin sister who had cerebral palsy. I was young,had children,a husband and house to keep. It was very,very hard. It would have been nice to have had some impartial people to chat to now and then "

I cared for my mum for the last 8 years of her life.

My health was wrecked by the end.

People don't realise the impact caring for someone has.

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By *iewMan
Forum Mod
over a year ago

Angus & Findhorn


"I am in awe of anyone that is a carer"

me too

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By (user no longer on site)
over a year ago


"I am in awe of anyone that is a carer

me too "

And me

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By *nne CallanWoman
over a year ago

Nothing to see here. Please move along.

Also some carers need care themselves. I have a son witg autism. My youngest has behavioural issues and i have mobility problems . I dont think i have had more than 1 night a month in almost 17 years when i havent been woken up to see to someone.

Carers just grit their teeth and get on with it as we have no other option. I laugh though when people talk of respite cos that time is usually spent catching up on all the jobs we didnt have time for in our usual routine

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By (user no longer on site)
over a year ago


"Everyone needs a break. You must stop feeling guilty. As for help. It is there in various forms. Need to stop being British and ask for assistance.

A shared load is easier to handle on a daily basis.

Respect to all of you who do ??

I'm not british. I'm American. I have noone to help with my son. Ive asked for help, i.e. respite once every few months so i can sleep. I've asked 3 times. What I've recieved is a couple of hours a week to cover classes in uni, as they can't justify spending money on respite.

Do you get DLA and carer's allowance?

I get his dla but not carer's because I'm a student. And since he's over 5 now i can't get income support for the summer break between uni sessions unless i get carers. And i can't get jsa because i can't go out and look for work. I tried to put him in after school/holiday club but because he needs one to one support they won't take him. There's no funding for one to one support outside of school hours and I'm not able to fund it myself. Rather vicious circle.

You still should be able to get carer's allowance being a student, as long as you don't earn over a certain amount - can't recall what it is presently and spend at least 35 hours a week caring for the person.

I've been a student for the last 4 years and still get it. Also, are you aware that you can get the higher rate of Child Tax Credit with the DLA. If getting the carer's allowance, that is then means tested against it. And then there is 'Family Fund', a charity which gives grants for equipment needed for the care of the child and helps families have a break such as, washing machines, car seats, funding towards a holiday money, etc."

Yes, i get the higher rate of child tax credit, and actually I'm due for a family fund grant now. I was told, though, that carers isn't paid to students.

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