Friday, 17 February 2012

Caring! Who Cares?

Hospice in Staffordshire
The aim of keeping people in their own homes for as long as possible is very laudable. It also happens to save the tax-payer billions of pounds, as it relies heavily on the dedication and commitment of mostly family members, to support the input from professional organisations.

Carers are recognised for the work that they do, but not sufficiently rewarded. Most of course don't even think of reward, they are there to support their loved ones, and to do whatever it takes to make their lives comfortable. I have always admired the work of carers, and a recent experience has increased my admiration ten-fold. I'd always worked in the "caring" professions, but caring for a loved one seems a million miles away from my daily work.

My sister is seriously ill. She was diagnosed with cancer a year ago, and just before Christmas, after extensive chemotherapy treatment, was told that it was unsuccessful, and that there was no more that could be done. She took the news with remarkable strength, and apart from a few down days, has been positive throughout. But her body has weakened, and life has been a struggle. Just over one week ago she went into hospital to have a 'stent' inserted into a blood vessel to try and increase the flow of blood into one of her arms, which had become virtually dead and useless. This hasn't worked. After two days she was discharged without a care package in place, despite this being constantly mentioned. You see, I was there, and could stay at her home.

The next five days were the hardest, and most emotionally draining of my life. Professionals came in, assessments were done, care packages were agreed; she must have independent living you see, but no one seemed to be listening to me. My sister is not one to make a fuss, she would down-play her problems, but I knew the times she'd fallen and I'd have to pick her up. She couldn't get out of a chair, off the toilet or out of bed - I had to help her. I tried to get this message across, but the care package would deal with this you see. Someone would come in first thing to get her out of bed and bath her. Someone would come last thing at night to put her to bed, and meals would come during the middle of the day. All very laudable, but this contact would probably be for no more than a couple of hours a day; what of the other twenty two hours when she would be on her own? I felt that in her condition she was a danger to herself, and needed to be somewhere where there was twenty four hour care. Today, she went into the local Hospice, but I don't know how long for, and the worry of her being at home may start all over again.

During the five full days with my sister, I seemed to be on the go for 16 hours a day, and even at night, could not sleep very well because of listening out for her. Then I felt guilty; it was only five days, but I was struggling,  and was I thinking of myself and not my sister? Other people were spending years caring for someone, and I couldn't cope with five days. I was ashamed and guilty, and nothing would take that away. I love my sister to death, and all I want is for whatever time she has left, that it is comfortable, and pain free. I don't think that's too much to ask. I don't want pity or criticism, but I do want the role of carers to be recognised. My brief role as a carer has made me want to find out more about carers; who they are and what they think.

In June 2008, the previous Government published a Carers' Strategy, called, "Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own". The strategy set out an aim that by 2018:

  • carers will be respected as expert care partners and will have access to the integrated and personalised services they need to support them in their caring role;
  • carers will be able to have a life of their own alongside their caring role;
  • carers will be supported so that they are not forced into financial hardship by their caring role;
  • carers will be supported to stay mentally and physically well and treated with dignity.
As part of this strategy, a survey was conducted by The Information Centre for health and social care, called "Personal Social Services Survey of Adult Carers in England, 2009-10", and published in June 2010. The survey found that 12% of people over 16 were caring for a sick, disabled or older person. This equates to 5 million carers in England. The full report can be found here. A few of the headline findings are of interest.
  • Nearly half (49%) of carers who responded to the survey were aged 65 or over, 44% were aged 45-64 and the remaining 7% were aged 18-44.
  • 56% of carers spent 35 hours or more per week looking after or helping the person they were caring for, 49% spent 50 hours or more caring, and 37% of carers spent 100 hours or more per week caring.
  • Almost three quarters (73%) of carers said that the person they were caring for lived with them.
  • 36% of carers who responded to the survey said that the overall quality of their lives was either good, very good or could not be better, a further 47% said their quality of life was alright, and the remaining 17% said it was either bad, very bad or so bad it could not be worse. 
This last point related to how the carers felt about their quality of life. While just over a third felt it was good, nearly a half said it was alright; are they playing it down here? The 17% who felt that their quality of life was bad or very bad, which if extrapolated to the whole caring community would mean that around 850,000 adult carers were suffering through their caring responsibilities. To me that is one hell of a figure. 

The 2008 Carers' Strategy has many good points, but let's try and get them actioned before 2018. 5 million adult carers (not to mention young carers, who are a different subject), need the level of improved support that is envisaged. All I can say to finish is, thank god for carers. 

1 comment:

  1. John, what a heartfelt piece. Thank you for sharing your thoughts and predicament.
    Where to start?
    Much of what you said had a great resonance for me. In the latter years of their lives my parents needed increasing amounts of care in order to survive in their homes. My dad(who survived my mother by 4 or 5 years)had an increasing number of conditions which although not fatal in themselves increasingly made him dependent upon the kindness of others. I was enormously grateful for the various care packages and social support that he got but as you say it only really fills a couple of hours a day. His neighbours were wonderful but of course it is wrong to expect them to take the responsibility unconditionally.
    I can especially relate to you comments about your own guilt. I too went through that phase - I was still working and lived a hundred+ miles away so felt enormously guilty that even though I spent huge amounts of time driving to be with him in mid week and at weekends I still could not fill the void. Much of that guilt still exists six years after his death - it is guilt about the fact that I didn't do more and to my everlasting shame that I so often felt angry that his illness, needs and condition was interfering with my own well ordered personal life. Like your sister he did not complain and didn't want to be a bother to anyone. He was desperate to stay in his own home and as you say increasingly that is the preferred option from social services. Like you, I'd like to think that this is for good medical and social reasons but I fear it is economics!
    I do wish you and your sister well - which, given the situation seems a pathetically small thing to say. But it is sincerely meant. Regards.