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'Lack of community support puts strain on family carers'


My father, who has dementia, has just passed another major milestone, his 85th birthday.

He celebrated his day with immediate family, including his sister, nieces and grandchildren - and what a wonderful day we had. It was made all the more special because dad was able to come downstairs and join us, as mum had bought him a stairlift. Seeing him coming downstairs was truly wonderful, like he had gained a pair of wings and was at last free.

The stairlift attracted much admiration from our visitors that day, including the grandchildren who insisted on taking turns to ride it up and down the stairs. My son thought he was back at Disneyland, even if it was a little slower than the rides he was used to. Considering how much it cost, this stairlift should have come with gold-plated wheels and go faster stripes; however, we were given no choice, pay for it ourselves or dad stays upstairs.

The ongoing costs for caring for people with dementia falls mainly on their families, not only in financial terms but also in health terms. Caring is a full-time commitment and I ask myself who cares for the carers? As a nurse I work as part of a team; at the end of the day I go home and my colleagues take over. When I get in I often collapse on the sofa with a warm drink, but in mum’s case she is all alone with the knowledge that there is no one to come in and take over from her or even make her a cup of tea.

You could argue that she has a carer coming in for 30 minutes twice a day to help, but how much rest do you get in half an hour? And is it enough when you have probably been up half the night? I would love mum to have more help at home, but she would have to pay for it, and already the costs are mounting up with the extra incontinence supplies she has to buy each week including bed pads and pull ups, neither of which are available on prescription.

Sadly, the community nursing team hasn’t turned out to be the support I hoped it would be; I had to fight to keep dad on the virtual ward as they wanted to discharge him. Mum hasn’t heard from anyone for weeks and the antibiotics at home never happened. Dad is still waiting for the community psychiatrist to make a home visit; this has been cancelled twice since December and both times at short notice. Is it any wonder that mum keeps asking does anyone care?

So I ask myself again where is the care in the community and who cares for the carers? Caring is a full-time, physically and emotionally challenging job that many people are doing day in day out unnoticed in the community. Without these wonderful silent heroes our overstretched hospitals would be meeting the challenge of caring for these people. They deserve better and so do their loved ones.

If you know who cares for the carers can you please share it with the rest of us? From where I am sitting I see a postcode lottery in care - and we certainly aren’t the winners.

  • The author is a nurse who has chosen to withhold her identity to maintain the confidentiality of her parents
  • Click here for a print-friendly PDF of this article 

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Readers' comments (30)

  • My dad has been ill for a while now, he and mum were supported by friends and family, we did everything for him. My mum (in her 80's) was absolutely devoted to him, we know she found it difficult at times but she looked after him better than anyone could imagine.

    The rest of the family mucked in with shopping, cleaning, gardening etc. etc. We often asked them if they wanted to get help in but they didn't. If they didn't have the money we would have paid for it for them.

    Dad passed away last year but the family still support mum. We 'work as a team', that's what families do.

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  • Those who really need community help should get it. In those 'third world countries', the families look after their elderly, you have a big family. I've never seen so many elderly people being put into homes, it's unheard of where I was born. If you can afford to go to disneyland then you can afford to buy a stairlift.

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  • Anonymous | 17-Jun-2012 10:26 am

    "If you can afford to go to disneyland then you can afford to buy a stairlift."

    Given that you don't know the circumstances of the above author, that is an uncalled for, nasty little comment. In addition, I have worked in 'third world countries', where the vast majority of the caring is done by subservient women with no position in society and no choice in the matter. NOT men. So not let's not kid ourselves that, "the families look after their elderly". They don't. The women do.

    As a family, we support my father who has Alzheimer's. Unfortunately, my mother died four years ago and we, his children, do all the overnights, meals, day to day care, etc. The support available to us whilst we try to keep him at home is minimal. We love our Dad and don't begrudge the effort. However, there is no doubt that his care is costing us dearly financially and in terms of our own families. The dementia has changed Dad's personality completely and he is becoming more and more aggressive and difficult to manage, so this adds to the emotional cost. We will continue to look after Dad for as long as we can. If the dreaded day when we can't look after him ever comes, I don't want some ignorant individual passing judgement on me or my family.

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  • Anonymous | 17-Jun-2012 2:39 pm

    A well written comment.

    As a country, along with the rest of the G8 and G20 we offer a significant amount of aid and assistance to third world countries and this is the sad perception that some have of the western world.

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  • Have you looked into carers allowance, attendance allowance and the various grants that are available through the council.

    Carers UK and Help The Aged offer an excellent advise service to carers.

    There is help out there, there are also many families who enjoy looking after their aged parents, they understand that their parents sacrified much to bring them up and so feel it only right that they look after their parents when they need help.

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  • Anonymous | 17-Jun-2012 4:40 pm

    I hadn't realised when i looked after one of my parents full time for 16 months it would be the end of my nursing career at the age of 50. no support from GP, social services or anybody else and no information where to apply for support and RCN were useless - counselling service and job advice totally urealistic and impractical and advice not suited to individual needs. I just got the impression you were there, it was your job and responsibility and you just had to cope. We had no other family either who could help or advice or even have a chat over a cup of tea with.

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  • Carers UK, the local council, Help the Aged and their GP were really helpful. My mum applied for all sorts of financial benefits which really helped. Mum did pay for small adaptions made around the house to make life easier but didn't begrudge this.

    There is a lot of information on-line.

    Sadly there are some families who have no interest in looking after their parents, it's not 'their responsibility'. Others are great and deserve everything they can possibly get.

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  • Anonymous | 17-Jun-2012 4:40 pm
    Anonymous | 17-Jun-2012 2:39 pm

    Yep. We are a pro-active, smart bunch and have got the maximum available to us in terms of support and financial assistance. I could give advice to others. The reality is that when someone requires so much help, with such a challenging disease, what is actually available in the community doesn't amount to much. As has been said, it is a post code lottery. It would be far easier for us to put my Dad into 24 hour care. However, we believe that it would only worsen his dementia. Like I said, we love our Dad and want him to have the best care possible and we think that we are the ones to do that. He has been a brilliant father to us. But ask me if I am 'enjoying' looking after this frightened, confused and often angry stranger who looks like my Dad? The answer is no, not really. Our experiences as a family and those of Anonymous | 17-Jun-2012 5:15 pm are the norm. Bottom line is that when Dad is up at 3am moving furniture around the house, there are no support services on hand to help me. And when I go into work the next morning, I have to give 100% as usual. This has been going on for years with no end in sight.

    Yes, it would be better if families would look after their own. But it is naive and unrealistic to believe that everyone can. Much, much more needs to be done to help unpaid, stressed carers, most of whom are untrained yet have to deal with debilitating, complex physical and mental health problems in the people they love most.

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  • from17-Jun-2012 5:15 pm

    in my experience, it is far harder looking after a loved one at home than it is any patient. partly because one is emotionally involved and can feel very vulnerable and helpless and also because one does not have the same facilities and the support of colleagues as one does in a home or in hospital.

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  • "If you can afford to go to disneyland then you can afford to buy a stairlift."

    This comment is completely uncalled for. The last time I checked this article was written anonymously; therefore to come to such an abrupt conclusion without knowing any background knowledge, is unfair. Secondly, the comment "you have a big family." also follows the same suit. You cannot throw about comments like that without having thorough proof, other than what is written in a short article. Having a "big family" hardly changes anything.
    I think that the article is a truthful example of the lack of support throughout the care structure. To me the writer appears to care greatly about her Father and the care he receives, otherwise why would they write the article?

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