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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

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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  • Hi as the author I felt compelled to respond to some of the comments as I believe my piece needs some context. I wrote it because I am a nurse, I am also a single mum who works full time and my dad has alzheimers. I do not have a big family, infact its my mum, my sister and my auntie (87yrs). Neither my sister and I live near my dad sadly both of us are over 2 hours away. My mother is therefore alone caring for my dad and I come down at weekends when I can and am not working. My dad needs feeding, is incontinent, immobile in bed and as I write being admitted to hospital with Pnemonia. The reason I wanted to write this is to explain to readers how lonely caring can be and if you read my other blogs on here you will see this has been quite a journey and that I am campaigning to improve the care of those living and caring for those with dementia. I would dearly love to be able to look after my dad full time, but sadly as so many others know I cannot. However as a daughter I have a responsibility to my mum and dad to ensure they get the best access to the care availlable and my point is that in some parts of the country care and resources in the community are overstretched and under resourced and many families have to pay for any help and support. I want to say thank you to my mum who does the most wonderful job of caring for my dad and dedicate this to all other cares who tirelessly care for their loved ones every day.

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  • I have the impression, as soon as a gp or the authorities or other services know there is family around no care or support is offered at all even though it means having to give up your career.

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  • Anonymous | 17-Jun-2012 9:10 pm

    You've hit the nail right on the head. There is no regard for the health or circumstances of the carers. Support the carers better and they will be able to care for longer.

    Anonymous | 17-Jun-2012 9:00 pm

    Thanks for the article. Keep them coming. It is important to raise the awareness for this subject. My best wishes for your Dad's recovery from pneumonia.

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  • Anonymous | 17-Jun-2012 11:37 pm

    seems to be my lucky day for hitting the nail on the head!

    I have just come from another page on nurse training where I was also told the same thing!

    Thank you its a good booster after so much negative in nursing and caring.

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  • On BBC Breakfast News this morning. Of 3,000 carers interviewed, 80% report health problems they have suffered as a consequence of caring for a loved one at home. Says it all really.

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  • Sadly there are families who do not look after their elderly relatives, they don't care about them and don't think it is their responsibility. They were quite happy for their parents to look after them and no doubt do everything for them though when they were growing up and that is very sad.

    It is nice to know that there are caring families out there, no-one should be an unpaid carer, there are benefits available, I think we got about 130.00 pounds a week, not much I know but it did help.

    When my mum got tired we paid for her to go on holiday and for dad to go into respite care for a week, it seemed to help them both. He didn't need 24 hour care or a night sitter though like some people obviously do and that should be available if it's needed without reams of paperwork and assessments.

    How some people manage is quite amazing.

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  • Anonymous | 18-Jun-2012 7:41 am

    "On BBC Breakfast News this morning. Of 3,000 carers interviewed, 80% report health problems they have suffered as a consequence of caring for a loved one at home. Says it all really."

    sad and makes me very angry but nobody cares and nobody listens.

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  • I worry about my own future. I am in my 50's, have no siblings and no children so will have to look after myself when I get old. I expect I will be better off living in a retirement flat and save as much as I can while I am still working so that I can afford the help when I eventually need it.

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  • There is more help available than people realise, however if you are a carer and busy and isolated which is so common in this role it is often difficult to find out the help you can get. ask for a Well check Assessment from Age Uk. They will send a WELL CHECK OFFICER who's job it is to help ref you for the help you need, ie for O.T referral. Referral for grant's to help fund vital items of equipment, Also to make referral to carers groups who can supply volunteer carers to give that much needed break. They also liase closely within the muli-disiplinary team and can ref to other specialists like the Admiral nurses who are invaluable support to someone caring for a person with dementia/altzymers. They can also assess and ref on for benefits checks and make sure you are getting all the money you are entitled to. I am a nurse and i also work part-time in this role and it amazed me how much help is available, it's just knowing that it's there, and so much of my work is referred via social workers who are so busy to pass this information onto people. The Assessments are free, the only criteria is they DONT have a social services paid for package of care. and they are 50+ years of age, the service is funded by local councils and governed by social services. I hope this information is useful and will be passed onto patients as nurses read this.

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  • Anonymous | 18-Jun-2012 10:31 pm

    I am in a similar position and save for the days when I may need help. the problem is savings dwindle, the earn virtually no interest, costs rise, the pension goes less far each year and many argue that benefits should be taken from the elderly. everybody thinks the 'baby boomers' (a term I loathe) have been spoilt and have too much but people don't seem to realise everything costs more when you are on your own, such as food and paying for services such as the day you might need power of attorney to deal with your affairs or a workman do a simple job a family member might normally do for anyone else, or a taxi because you have nobody to give you a lift, etc. At the moment I walk everywhere possible which not only keeps me fit but I need to save as one day I may need more taxi rides for food shopping, doctors' visits, hospital or medical appointments, etc. (not to mention visiting friends or socialising), and if I can go to an office to sort something out I will save the price of a phone call, etc. the potential list of costs is endless and very worrying.

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