There is one thing about being a carer that I really dislike: when I’m ill there is no one to do the things that I would normally do.
Mr Man and I struggle on, and he helps me as much as he can, but there are some things that he just can’t do or cope with. He can’t collect my prescription for me; he can’t go to the shop to get some shopping; he can’t even phone for a take away. That’s not his fault, and I don’t blame him for that.
Sometimes I just wish it didn’t all fall on me, especially when I feel so ill.
I asked my youngest brother to buy a few things for me the other day. He did it, but he wasn’t very happy about it. So I dragged myself out tonight to do the things I felt too ill to do, rather than ask for his help again.
How do other carers cope? I suppose having a good support network helps, but like my Mum, I find it difficult to ask for practical help. It’s not pride; it’s guilt. Other people have their own problems to deal with. I don’t want to be a nuisance, and having people help so begrudgingly does little to ease your mind in that area. I always find that the ones who are most willing to help are the ones least able to.
It seems a friend with no need, is a friend indeed.
Friday 14 December 2007
Friday 30 November 2007
Lack of Care
I met with my carer friend this week. We’ll call her Jill. Whenever we meet we always discuss some interesting carer issues and when I come home I am often still pondering these.
Her husband (we’ll call him Jack) has a host of life threatening conditions and is mostly confined to a wheelchair. Jill also has some serious health issues of her own. Still, between them they have started running a group for the cared for and their carers. There is a lesson in that itself, I feel; contrary to popular belief, although being in need of care 24 hours a day, Jack is an intelligent man with excellent leadership and organisation skills.
The newly founded group is an informal affair, held in a local pub. The purpose of the group is to give advice and support to those who are not receiving the help they are entitled to, of which there are many. Often Jack will meet someone at the day centre he attends, and is shocked to discover that their one day a week at the day centre is the only help that the person receives.
Consider one man who is completely paralysed on one side of his body. Anyone who has suffered from paralysis or knows someone who has will know that the loss of use results in the limbs becoming a “dead weight” – far too heavy for the man to manage his own personal needs. He lives with his elderly mother who, unbelievably, struggles alone to care for her grown son. He attends the day centre one day a week, and recently has also been granted a paid carer for half an hour a day – which is great as long as he doesn’t need the toilet for the rest of the day.
What I find most shocking about these cases is that they are obviously known to Social Services because they are receiving some care, but it is not nearly enough. I don’t think it is unreasonable to presume that there are probably many more who are not even known to Social Services.
The thing is, it’s not that services are not available, but that carers and the cared for are not made aware of those services or the fact that they are entitled to them, or how to apply for them. As mentioned before, carers often do not seek the help themselves as they do not recognise themselves as carers. Those that do are still kept in the dark.
In Jill’s case, it wasn’t until she almost suffered a nervous breakdown that, with the intervention of her doctor, they started receiving help in the form of day centres for Jack, and then learned about direct payments which enabled them to hire a carer.
It makes me wonder if the £57 billion a year that carers save the government is grossly underestimated.
Her husband (we’ll call him Jack) has a host of life threatening conditions and is mostly confined to a wheelchair. Jill also has some serious health issues of her own. Still, between them they have started running a group for the cared for and their carers. There is a lesson in that itself, I feel; contrary to popular belief, although being in need of care 24 hours a day, Jack is an intelligent man with excellent leadership and organisation skills.
The newly founded group is an informal affair, held in a local pub. The purpose of the group is to give advice and support to those who are not receiving the help they are entitled to, of which there are many. Often Jack will meet someone at the day centre he attends, and is shocked to discover that their one day a week at the day centre is the only help that the person receives.
Consider one man who is completely paralysed on one side of his body. Anyone who has suffered from paralysis or knows someone who has will know that the loss of use results in the limbs becoming a “dead weight” – far too heavy for the man to manage his own personal needs. He lives with his elderly mother who, unbelievably, struggles alone to care for her grown son. He attends the day centre one day a week, and recently has also been granted a paid carer for half an hour a day – which is great as long as he doesn’t need the toilet for the rest of the day.
What I find most shocking about these cases is that they are obviously known to Social Services because they are receiving some care, but it is not nearly enough. I don’t think it is unreasonable to presume that there are probably many more who are not even known to Social Services.
The thing is, it’s not that services are not available, but that carers and the cared for are not made aware of those services or the fact that they are entitled to them, or how to apply for them. As mentioned before, carers often do not seek the help themselves as they do not recognise themselves as carers. Those that do are still kept in the dark.
In Jill’s case, it wasn’t until she almost suffered a nervous breakdown that, with the intervention of her doctor, they started receiving help in the form of day centres for Jack, and then learned about direct payments which enabled them to hire a carer.
It makes me wonder if the £57 billion a year that carers save the government is grossly underestimated.
Saturday 18 August 2007
I Despair
The above statement is probably a familiar feeling for anyone who has to deal with respite homes.
I called tonight to try to book Mr Man in for a couple of nights at the end of September. Bearing in mind that thanks to cutbacks there is now only one bed for the whole of the north of the county, and bearing in mind that the dates we want are only 6 weeks away, I would like to have booked them as soon as possible. But apparently I can only book the bed through Mr Mans Key Worker at the respite home, and seeing as he won’t be working again until Monday, I’ll have to call back then.
Thank goodness he’s not on holiday.
What difference does it make who books it? I actually asked the lady on the phone this, and her answer? “I don’t know”
And these people are responsible for Mr Mans care.
I called tonight to try to book Mr Man in for a couple of nights at the end of September. Bearing in mind that thanks to cutbacks there is now only one bed for the whole of the north of the county, and bearing in mind that the dates we want are only 6 weeks away, I would like to have booked them as soon as possible. But apparently I can only book the bed through Mr Mans Key Worker at the respite home, and seeing as he won’t be working again until Monday, I’ll have to call back then.
Thank goodness he’s not on holiday.
What difference does it make who books it? I actually asked the lady on the phone this, and her answer? “I don’t know”
And these people are responsible for Mr Mans care.
Wednesday 8 August 2007
Solidarity
Is it me or is there a serious lack of Carer Blogs out there?
Although this blog is relatively new, I’ve been blogging for a year at the end of this month. During that time I have come across many mental health blogs, but few written by Carers. It’s a shame really, because during the short time that I have been writing this blog I have found something that I have rarely found before during the whole 6+ years that I have been caring for Mr Man – solidarity.
I have been to Carers groups in the past but to be honest they didn’t provide me with what I needed. In my experience it was just a social gathering once a month with complete strangers, which needlessly took me away from Mr Man for a couple of hours. We would either read poetry or have a pub lunch, but we never discussed Carers issues. Most of the Carers were elderly, and many were ex-Carers; living alone I’m sure they looked forward to the Carers meeting each month, and these ones seem to have more to say than any of the others.
One lady was a similar age to me and she also cared for her husband, although his illnesses were very different to Mr Mans. She started attending the group at a similar time as I did, and having nothing in common with anyone else, we seemed to be drawn to each others company. It wasn’t long before I stopped attending the meeting altogether, but I still meet fairly regularly with this lady for coffee or lunch. The great thing is that we actually do talk about Carers issues, and we both experience very similar problems even though our spouses have different illnesses. It’s reassuring that if either of us has to cancel at short notice the other one completely understands, and neither of us feels “over the top” by having our mobile phones right next to us, always ready for “that call”.
She is the only person I have ever felt really understands my situation as a Carer, although she doesn’t necessarily understand everything about Mr Mans illness, and likewise, I don’t pretend to understand the illnesses her husband suffers from either. But it doesn’t seem to matter.
The same is true for Carers who blog. I particularly like the comment left by Maz in the comments section.
It’s so true. I have been amazed how I have been able to relate to the experiences of each of the Carers who have commented thus far on this blog, and it’s obvious that they have also been able to relate to my own experiences. And yet, each of us is in a different relationship with the person we are caring for, and they each have a different illness.
Carers issues are often the same. Isolation must be the biggest problem. How important then that we “paddle” for each other. It’s important that we’re heard, understood, and that we can recognise ourselves in others, to help reduce that feeling of being so alone.
I’d like to extend a very warm welcome to all Carers, and to thank those who have commented already or linked to me in their own blogs. Please feel free to leave your address in the comments section if you would like me to link to you.
Although this blog is relatively new, I’ve been blogging for a year at the end of this month. During that time I have come across many mental health blogs, but few written by Carers. It’s a shame really, because during the short time that I have been writing this blog I have found something that I have rarely found before during the whole 6+ years that I have been caring for Mr Man – solidarity.
I have been to Carers groups in the past but to be honest they didn’t provide me with what I needed. In my experience it was just a social gathering once a month with complete strangers, which needlessly took me away from Mr Man for a couple of hours. We would either read poetry or have a pub lunch, but we never discussed Carers issues. Most of the Carers were elderly, and many were ex-Carers; living alone I’m sure they looked forward to the Carers meeting each month, and these ones seem to have more to say than any of the others.
One lady was a similar age to me and she also cared for her husband, although his illnesses were very different to Mr Mans. She started attending the group at a similar time as I did, and having nothing in common with anyone else, we seemed to be drawn to each others company. It wasn’t long before I stopped attending the meeting altogether, but I still meet fairly regularly with this lady for coffee or lunch. The great thing is that we actually do talk about Carers issues, and we both experience very similar problems even though our spouses have different illnesses. It’s reassuring that if either of us has to cancel at short notice the other one completely understands, and neither of us feels “over the top” by having our mobile phones right next to us, always ready for “that call”.
She is the only person I have ever felt really understands my situation as a Carer, although she doesn’t necessarily understand everything about Mr Mans illness, and likewise, I don’t pretend to understand the illnesses her husband suffers from either. But it doesn’t seem to matter.
The same is true for Carers who blog. I particularly like the comment left by Maz in the comments section.
“I really think we carers are all in the same boat, so we each must take turns to paddle”
It’s so true. I have been amazed how I have been able to relate to the experiences of each of the Carers who have commented thus far on this blog, and it’s obvious that they have also been able to relate to my own experiences. And yet, each of us is in a different relationship with the person we are caring for, and they each have a different illness.
Carers issues are often the same. Isolation must be the biggest problem. How important then that we “paddle” for each other. It’s important that we’re heard, understood, and that we can recognise ourselves in others, to help reduce that feeling of being so alone.
"Rescue" by Philippa King
I’d like to extend a very warm welcome to all Carers, and to thank those who have commented already or linked to me in their own blogs. Please feel free to leave your address in the comments section if you would like me to link to you.
Monday 16 July 2007
Time Out
*Mr Mans Wife clears her throat*
I thought it was about time I posted on this badly neglected blog.
As a result of being a Carer, it can be difficult at times to maintain other relationships. Friends and family struggle to understand the full extent of the caring role, and the responsibilities and anxieties that it includes. Although their intentions are good and they are genuinely trying to help, they often unwittingly make demands of us which put us under more pressure.
Take for example my brother. He and his family live in Norway and for the past four or more years he’s been asking me the same question: “When are you coming to visit us?”
As I’ve told him time and time again, I would love to visit him in Norway but Mr Man wouldn’t be well enough for the journey, and he couldn’t cope with being away from the home for more than a few nights, either in Norway or in a respite home.
My whole family seem to have great difficulty in understanding this. You can read my full rant about this here.
Friends are often the same. I’m repeatedly asked to go on holiday with friends or go on day trips with them, or just out for an evening. I’m grateful that I have so many friends that want to spend time with me, but it’s depressing and often embarrassing when I have to repeatedly decline invitations. It’s not so bad now I suppose because the friends who really didn’t understand stopped inviting me out years ago! I’m sure they thought I used Mr Man as an excuse when I didn’t want to do things.
I wrote a poem expressing how I imagined some of those friends must have felt sometimes.
My Friend the Carer
My friend is a Carer
But she doesn’t care for me
She always turns me down
When I ask her round for tea
She won’t come out for a drink
Or even chat that long
She won’t do anything
That I think makes a friendship strong
She says “I’d love to stay and chat
But must do such and such”
She just smiles back in silence
When I say she does too much
I say “Come out, he’ll be ok”
But she never does reply
I don’t think she knows I noticed
When she turned to wipe her eye
I don’t see why she should be sad
It’s plain for all to see
That I’m the one neglected
‘Cos she doesn’t care for me!
-
Of course the friends I have left are mostly very understanding and get on with Mr Man very well. In addition it’s not quite as difficult to leave Mr Man as it used to be.
What really makes me laugh is when “Carers Groups” arrange day trips for Carers – how on earth are they supposed to find the time out to go?
I thought it was about time I posted on this badly neglected blog.
As a result of being a Carer, it can be difficult at times to maintain other relationships. Friends and family struggle to understand the full extent of the caring role, and the responsibilities and anxieties that it includes. Although their intentions are good and they are genuinely trying to help, they often unwittingly make demands of us which put us under more pressure.
Take for example my brother. He and his family live in Norway and for the past four or more years he’s been asking me the same question: “When are you coming to visit us?”
As I’ve told him time and time again, I would love to visit him in Norway but Mr Man wouldn’t be well enough for the journey, and he couldn’t cope with being away from the home for more than a few nights, either in Norway or in a respite home.
My whole family seem to have great difficulty in understanding this. You can read my full rant about this here.
Friends are often the same. I’m repeatedly asked to go on holiday with friends or go on day trips with them, or just out for an evening. I’m grateful that I have so many friends that want to spend time with me, but it’s depressing and often embarrassing when I have to repeatedly decline invitations. It’s not so bad now I suppose because the friends who really didn’t understand stopped inviting me out years ago! I’m sure they thought I used Mr Man as an excuse when I didn’t want to do things.
I wrote a poem expressing how I imagined some of those friends must have felt sometimes.
My Friend the Carer
My friend is a Carer
But she doesn’t care for me
She always turns me down
When I ask her round for tea
She won’t come out for a drink
Or even chat that long
She won’t do anything
That I think makes a friendship strong
She says “I’d love to stay and chat
But must do such and such”
She just smiles back in silence
When I say she does too much
I say “Come out, he’ll be ok”
But she never does reply
I don’t think she knows I noticed
When she turned to wipe her eye
I don’t see why she should be sad
It’s plain for all to see
That I’m the one neglected
‘Cos she doesn’t care for me!
-
Of course the friends I have left are mostly very understanding and get on with Mr Man very well. In addition it’s not quite as difficult to leave Mr Man as it used to be.
What really makes me laugh is when “Carers Groups” arrange day trips for Carers – how on earth are they supposed to find the time out to go?
Saturday 2 June 2007
Carers Week: June 11th - 17th 2007
Who are carers?
I conducted a little experiment the other day. As I walked through the town centre, I watched people as they went about their business and tried to guess which ones were carers. Typically I chose women, in their 50’s and over, who looked tired and distracted. I quickly realised my error and was surprised that I had stereotyped carers in that way, especially as I have been a carer myself since the age of 29. Obviously, some preconceived ideas are hard to change, even for those of us who should know better.
In truth carers can be any age, even children. They can be from any walk of life, any nationality, male or female. Just as illness is indiscriminate, so is the caring role. A carer could be a son, a daughter, or a grandchild; a spouse, a parent, or a grandparent; a distant relative, a friend, or a neighbour. Often carers are unaware that they are regarded as such, and unaware of their own rights; they often carry out their role without complaining, compelled by love and duty, concluding that their extra responsibilities are simply a part of their role as a parent, son, spouse and so on. Is this the case?
At what point does a person become a carer and not just a loving friend or relative?
A carer is someone who provides unpaid help for someone on a regular basis, because of an illness or disability. The caring role may vary greatly from case to case, but most carers would probably agree that they need to be “on call” 24 hours a day.
What might the responsibilities of a carer include?
The responsibilities of a carer are varied and many. From my own experience these include, but are not limited to:
• Making sure the person being cared for is taking the correct medication at the correct times, and the correct dose. Organising and collecting repeat prescriptions, arranging appointments, and helping the person to attend.
• Washing, bathing, shaving, drying and dressing the person being cared for.
• Making sure the person is eating adequately and getting enough fluids.
• Tending to other personal needs, including changing clothing and bedding if the person has soiled them in some way (urine, stools or vomit).
• Providing reassurance or making sure the person who is cared for is safe.
I expect these seem like obvious requirements to most people, but would you be surprised if I told you that it was necessary for me to carry out these tasks even though the person I was caring for was suffering from a mental illness and not a physical one? Again, it can be easy for us to fall victim to preconceived ideas.
What is a carer worth?
There are almost 6 million carers in the UK. The main benefit for carers is Carers Allowance which is £48.65 a week for a minimum of 35 hours a week. This works out to £1.39 per hour; £3.96 less than the National Minimum Wage (depending on age). Carers save the government £57 billion a year. Of course, young carers who are still in full time education receive nothing at all.
What is the personal cost to the carer?
Carers are no strangers to health problems of their own. In many cases their caring role is juggled with other responsibilities such as running a home, raising children, work, or schooling. The physical demands and the emotional strain can leave carers in need of medical attention themselves.
Often carers have ongoing fears and anxieties which plague them on a daily basis:
• Do I look after my loved one well enough?
• Am I somehow to blame for the illness or disability that my loved one is suffering from?
• How will I cope if their symptoms deteriorate?
• What will happen to them if I die?
• How will they manage while I am out of the house?
• What will I return home to?
Along with these feelings of guilt and self doubt a carer may struggle with feelings of resentment and loss; their caring role will have had a major impact on their personal lives, including:
• Restrictions on social activities
• Having to give up a well paid job or a progressive career
• Less time to devote to education
• Having to postpone finding a partner and settling down
• Having to delay or give up entirely on plans to start a family
• Less time to spend with other loved ones or children
Little wonder then, carers can often suffer from low self esteem, loneliness and depression.
Who will care for the carer?
Carers Week has been held each year for over a decade now. The purpose of this week is to raise awareness of the issues faced by carers on a day to day basis; to enable new and unknown carers to access support and services; to remind existing carers that support is available for them and that their role is a valuable one; and to celebrate the caring role. Yes, as difficult as caring can be, it also has its rewards.
During Carers Week, events will be held all over the country to allow carers to get together and to help raise awareness. Celebrities such as Esther Rantzen, David Jason, and Chris Tarrant will lend their support, and local MP’s are invited to offer their support also, and to sign the special Parliamentary Carers Week motion.
For more information about Carers Week, which organizations are taking part in your local area, and to read about the special Parliamentary Carers Week motion, visit www.carersweek.org
I conducted a little experiment the other day. As I walked through the town centre, I watched people as they went about their business and tried to guess which ones were carers. Typically I chose women, in their 50’s and over, who looked tired and distracted. I quickly realised my error and was surprised that I had stereotyped carers in that way, especially as I have been a carer myself since the age of 29. Obviously, some preconceived ideas are hard to change, even for those of us who should know better.
In truth carers can be any age, even children. They can be from any walk of life, any nationality, male or female. Just as illness is indiscriminate, so is the caring role. A carer could be a son, a daughter, or a grandchild; a spouse, a parent, or a grandparent; a distant relative, a friend, or a neighbour. Often carers are unaware that they are regarded as such, and unaware of their own rights; they often carry out their role without complaining, compelled by love and duty, concluding that their extra responsibilities are simply a part of their role as a parent, son, spouse and so on. Is this the case?
At what point does a person become a carer and not just a loving friend or relative?
A carer is someone who provides unpaid help for someone on a regular basis, because of an illness or disability. The caring role may vary greatly from case to case, but most carers would probably agree that they need to be “on call” 24 hours a day.
What might the responsibilities of a carer include?
The responsibilities of a carer are varied and many. From my own experience these include, but are not limited to:
• Making sure the person being cared for is taking the correct medication at the correct times, and the correct dose. Organising and collecting repeat prescriptions, arranging appointments, and helping the person to attend.
• Washing, bathing, shaving, drying and dressing the person being cared for.
• Making sure the person is eating adequately and getting enough fluids.
• Tending to other personal needs, including changing clothing and bedding if the person has soiled them in some way (urine, stools or vomit).
• Providing reassurance or making sure the person who is cared for is safe.
I expect these seem like obvious requirements to most people, but would you be surprised if I told you that it was necessary for me to carry out these tasks even though the person I was caring for was suffering from a mental illness and not a physical one? Again, it can be easy for us to fall victim to preconceived ideas.
What is a carer worth?
There are almost 6 million carers in the UK. The main benefit for carers is Carers Allowance which is £48.65 a week for a minimum of 35 hours a week. This works out to £1.39 per hour; £3.96 less than the National Minimum Wage (depending on age). Carers save the government £57 billion a year. Of course, young carers who are still in full time education receive nothing at all.
What is the personal cost to the carer?
Carers are no strangers to health problems of their own. In many cases their caring role is juggled with other responsibilities such as running a home, raising children, work, or schooling. The physical demands and the emotional strain can leave carers in need of medical attention themselves.
Often carers have ongoing fears and anxieties which plague them on a daily basis:
• Do I look after my loved one well enough?
• Am I somehow to blame for the illness or disability that my loved one is suffering from?
• How will I cope if their symptoms deteriorate?
• What will happen to them if I die?
• How will they manage while I am out of the house?
• What will I return home to?
Along with these feelings of guilt and self doubt a carer may struggle with feelings of resentment and loss; their caring role will have had a major impact on their personal lives, including:
• Restrictions on social activities
• Having to give up a well paid job or a progressive career
• Less time to devote to education
• Having to postpone finding a partner and settling down
• Having to delay or give up entirely on plans to start a family
• Less time to spend with other loved ones or children
Little wonder then, carers can often suffer from low self esteem, loneliness and depression.
Who will care for the carer?
Carers Week has been held each year for over a decade now. The purpose of this week is to raise awareness of the issues faced by carers on a day to day basis; to enable new and unknown carers to access support and services; to remind existing carers that support is available for them and that their role is a valuable one; and to celebrate the caring role. Yes, as difficult as caring can be, it also has its rewards.
During Carers Week, events will be held all over the country to allow carers to get together and to help raise awareness. Celebrities such as Esther Rantzen, David Jason, and Chris Tarrant will lend their support, and local MP’s are invited to offer their support also, and to sign the special Parliamentary Carers Week motion.
For more information about Carers Week, which organizations are taking part in your local area, and to read about the special Parliamentary Carers Week motion, visit www.carersweek.org
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