Do I Look Like I Care?

Three out of four carers reach "breaking point"

2009-06-08T12:02:00.009Z

I know it's been a while. I just wanted to share this news item, which reveals that three out of four carers are pushed to "breaking point".

The article states that in a survey of 1,941 carers, "Frustration with the bureaucracy of accessing NHS care and benefits was the most common reason they cited as forcing them to breaking point."

I totally agree. And the problem is that the pressures of trying to access this support makes it harder to cope with the actual caring role itself, instead of easier.

The article also states that in another survey of the general public, 86% felt that "carers made a valuable contribution to society" behind only nurses at 91% and firefighters at 90%.

If so many people have such great respect for carers, how come they're left with no help, allowing them to reach breaking point in the first place?

Promises, Promises

2008-06-30T00:09:00.003Z

My apologies for such a huge time gap between posts. Much of the reason can be found here.

So, the government are yet again promising a better deal for carers, by doubling the amount of respite care available. This is going to cost them a whopping £150 million.

But hang on a minute, weren't we promised something similar around the same time last year? At that time £25 million was being invested into emergency respite care.

I haven't seen any of it, have you? In fact, during that past year I have been involved in an ongoing complaint with our local NHS Trust about cutbacks in respite services. So where does all this money go?

I have only one thing to say regarding these shallow promises...

Yeah, you sing it Stevie!

Carers Who Don’t Care

2008-03-11T02:32:00.001Z

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?

A Young Carers Kingdom

2008-02-17T22:19:00.002Z

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.

Living Out of a Suitcase

2008-01-02T23:58:00.000Z

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.

A Friend in Need

2007-12-14T21:07:00.000Z

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.

Lack of Care

2007-11-30T13:47:00.000Z

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.

I Despair

2007-08-18T23:18:00.000Z

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.

Solidarity

2007-08-08T23:31:00.000Z

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.

“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.

Time Out

2007-07-16T18:59:00.000Z

*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?

Carers Week: June 11th - 17th 2007

2007-06-02T11:02:00.000Z

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