I spoke to my sister tonight. She cleans for a lady in her 90’s who suffers from Alzheimer’s and lives alone. We’ll call her Mary.
It was Mary’s daughter and son in law who employed my sister to clean for her. They are in their 70’s, and so you might consider them to be exempt from caring for Mary; and yet they don’t consider themselves exempt from claiming Carers Allowance for the supposed care they provide. They are obviously retired yet quite sprightly by all accounts, allowing them the time and energy to skip off on holiday several times a year. I expect managing Mary’s finances helps in this regard also.
My sister has grown quite attached to Mary. It’s just a shame that her family doesn’t feel the same way. The Grandson, now in his 40’s, admitted that his Mum and Dad are just waiting for Mary to “pop off”, but he doesn’t appear to have made any effort to improve Mary’s level of care himself. In fact, it was my sister who suggested that they organise meals on wheels for Mary at lunch time, as she is incapable of preparing a meal for herself. Sadly, without someone to supervise her, she still doesn’t eat the meals that are brought in for her. She really does need a lot of support in many ways.
But wait a minute; her daughter and son in law receive £48.65 a week for caring for Mary for 35 hours a week, don’t they? That’s 5 hours care a day. Surely they are there to encourage her to eat her meals? Think again. They spend 45 minutes with her each day at tea time, during which time they make her a sandwich and a cup of tea, and hang around long enough to make sure she has eaten it. The rest of the time she is alone. They don’t seem concerned that that is probably the only thing she has eaten all day. You’d think that they would want to set an example for their own children of how to show love, care, and respect for aging parents, seeing as they could be dependant on care for themselves in the not too distant future.
They have already made a weeks worth of sandwiches and put them in the freezer, ready for my sister to thaw out each day for Mary’s tea while they are away. My sister has other plans; as soon as they have gone she intends to bin the whole lot and make fresh sandwiches each day for Mary, with fresh bread and fresh fillings. Is she worth anything less?
Mary has said she doesn’t want to live alone, but her daughter and son in law say that she refuses to go into a home. Thinking that money is probably the real issue, my sister has looked up the address and telephone number of a council funded care home and given it to the Grandson – my sister's not backwards about coming forwards! Of course, if Mary did move into a care home, her daughter and son in law would lose their £48.65 a week for “caring” for her, and they could probably say goodbye to some of their holidays.
How are people supposed to take the needs of struggling carers seriously when there are those who con the system in this way?
Tuesday, 11 March 2008
Sunday, 17 February 2008
A Young Carers Kingdom
I’ve just finished watching Kingdom on itv 1, which I have been following since the first series. I was very pleased to see that in this last episode they brought attention to the issues surrounding young carers and their families. I found it heart rending, and I have to admit shed a few tears.
My only complaint is that it was quite a complex issue to tackle in only one hour, along with several other story lines running along side, and so processes that the likes of us know take weeks and months seemed to be resolved within a day (such as claiming DLA). Maybe they should have started this story at the beginning of the series, with it reaching its conclusion tonight, which would have been more realistic. Still definitely worth a watch though.
Although not yet available online as I type this, episode six should be available soon in the catch-up section here.
My only complaint is that it was quite a complex issue to tackle in only one hour, along with several other story lines running along side, and so processes that the likes of us know take weeks and months seemed to be resolved within a day (such as claiming DLA). Maybe they should have started this story at the beginning of the series, with it reaching its conclusion tonight, which would have been more realistic. Still definitely worth a watch though.
Although not yet available online as I type this, episode six should be available soon in the catch-up section here.
Wednesday, 2 January 2008
Living Out of a Suitcase
Or Living Away From Home to be a Carer
Calamity Jane – or CJ as she is affectionately known as – is no stranger to illness. You only have to scroll through the archives of her blog a little to realise that she has to endure more than most, simply to stay alive. But since New Years Eve when her 73 year old father was taken into hospital suffering from Pneumonia, she has been living out of a bag at her parent’s home, to take care of her 76 year old mother who is suffering from Dementia.
Once again, services are sadly lacking, and although CJ’s mother has been referred for emergency respite, it will be a couple of days before social services will even get back to them about it. Of course, that’s a couple of days from today – the first day that CJ has even been able to contact these services – as like many other essential social services, they have been closed for the holidays. Apparently people don’t get sick or have accidents at this time of year, and elderly ones don’t need extra care despite the fact that the weather is prone to being colder, damper, and hazardously icy.
I strongly recommend that you read CJ’s account here.
Reading this account brought back many memories of when my Nan was alive. For about 4 years before she died she needed care. For most of that time she was cared for by my eldest brother. Later, it was either my Mum or one of her sisters. Whenever I went to visit my Nan I would be greeted by the sight of underwear drying on the radiator, belonging to whoever was living there out of a bag at that particular time. “Wash one, wear one” seemed to be the order of the day!
It’s incredibly unsettling for a person to live like that for any length of time. It’s no wonder holidays are listed quite highly as a stressor and yet the purpose of those is to relax! So imagine how it feels to go away from home, to live out of a bag, and to take on the responsibility of caring for a sick relative – and to not know how long for.
The carer may now be responsible for running two homes. Responsibilities at home may have to be delegated for a while. Money matters are especially difficult to deal with whilst one is away from home, and it may be necessary for the carer to return home regularly to open post and deal with other matters. But who will care for the sick one whilst they do this? And what about work? How many employers would allow a person to take indefinite leave and keep the job open for them? And what do you do for money in the meantime? Also, spouses and other family members can become neglected – my Mum had 3 teenagers still living at home, and 2 of them were still in school, when she had to leave home to care for my Nan for weeks at a time. Obviously this heightened her anxiety, but what else can you do when you have a sick parent that needs caring for?
There’s no doubt about it – as hard as being a carer can be, nothing can be harder than being a carer away from home.
Calamity Jane – or CJ as she is affectionately known as – is no stranger to illness. You only have to scroll through the archives of her blog a little to realise that she has to endure more than most, simply to stay alive. But since New Years Eve when her 73 year old father was taken into hospital suffering from Pneumonia, she has been living out of a bag at her parent’s home, to take care of her 76 year old mother who is suffering from Dementia.
Once again, services are sadly lacking, and although CJ’s mother has been referred for emergency respite, it will be a couple of days before social services will even get back to them about it. Of course, that’s a couple of days from today – the first day that CJ has even been able to contact these services – as like many other essential social services, they have been closed for the holidays. Apparently people don’t get sick or have accidents at this time of year, and elderly ones don’t need extra care despite the fact that the weather is prone to being colder, damper, and hazardously icy.
I strongly recommend that you read CJ’s account here.
Reading this account brought back many memories of when my Nan was alive. For about 4 years before she died she needed care. For most of that time she was cared for by my eldest brother. Later, it was either my Mum or one of her sisters. Whenever I went to visit my Nan I would be greeted by the sight of underwear drying on the radiator, belonging to whoever was living there out of a bag at that particular time. “Wash one, wear one” seemed to be the order of the day!
It’s incredibly unsettling for a person to live like that for any length of time. It’s no wonder holidays are listed quite highly as a stressor and yet the purpose of those is to relax! So imagine how it feels to go away from home, to live out of a bag, and to take on the responsibility of caring for a sick relative – and to not know how long for.
The carer may now be responsible for running two homes. Responsibilities at home may have to be delegated for a while. Money matters are especially difficult to deal with whilst one is away from home, and it may be necessary for the carer to return home regularly to open post and deal with other matters. But who will care for the sick one whilst they do this? And what about work? How many employers would allow a person to take indefinite leave and keep the job open for them? And what do you do for money in the meantime? Also, spouses and other family members can become neglected – my Mum had 3 teenagers still living at home, and 2 of them were still in school, when she had to leave home to care for my Nan for weeks at a time. Obviously this heightened her anxiety, but what else can you do when you have a sick parent that needs caring for?
There’s no doubt about it – as hard as being a carer can be, nothing can be harder than being a carer away from home.
Friday, 14 December 2007
A Friend in Need
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.
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, 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.
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