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Carers Week: how can we tackle loneliness among carers?

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In the run-up to this year’s Carers Week (11-17 June), our guest, Emily Holzhausen OBE, explains why it’s so important that we support our biggest care provider: those who give unpaid care for their loves ones…

A couple of weeks ago, the Office for National Statistics (ONS) published new research that showed that if you provided substantial care, unpaid for a relative or friend, then you were up to 37 times more likely to report being lonely than other people.

Carers like these often say that ’their world shrinks’ when others don’t understand disability or caring. They can feel especially isolated when they don’t have time to go to social gatherings, events or just have a chat.

The focus for this year’s Carers Week, which runs from 11-17 June, is on supporting carers to be ‘Healthy and Connected’, recognising that caring for someone can make it hard to look after your own health and wellbeing, and your relationships.

Hidden carers

Caring still remains hidden among our families and in our communities, with people often not recognising themselves as carers. And yet their unpaid contribution is vast – worth £132 billion a year. That’s equivalent to a second NHS. In fact, their caring outstrips any other type of care provided.

All of these families depend on health services and many on social care. Yet, as Which?’s ‘Care Needs Care Now’ campaign shows, the very systems that they rely on are creaking under the pressure and aren’t always there when families desperately need them.

If you haven’t provided unpaid care before, it might be hard to think what it might involve and, of course, everyone’s experience of caring will be slightly different.

Are you a carer?

With Carers Week coming up on 11 June, there are things that we can do to help this debate and directly assist families.

Many people take years to identify themselves as carers and get the support that they are entitled to.

Have you had that conversation?  Have you ever signposted a family member or friend to support when they are caring?  Are you expecting to care in the future and how will this affect the way you live, where you live, or your ability to juggle work and care?

These are all key questions we need to consider as individuals, but they will also all be put under the microscope as our government looks to see how we build the future of social care in this country for older, disabled people and carers.

Make sure you do something in the run-up to Carers Week 2018. Go to our website, make a pledge or organise an event to celebrate carers in your area, have a conversation and plan for the future – and get ready to engage in the government’s future debate on social care.

This is a guest post by Emily Holzhausen. All views expressed here are Emily’s own and not necessarily those also shared by Which?.

Are you a carer? Do you sometimes feel lonely? What do you do to combat loneliness? Perhaps you’re about to become a carer: if so, what plans have you put in place? Or do you know someone who is a carer who has become isolated due to caring for a loved one? What could be done to help support them and others in the same situation?

Comments

I will be caring for my wife until her death , she has no wish to go into a home , my regional council after social work departments investigated put me onto a Carers group and I joined as I am an official carer (registered ) with a card . They email me to visit for cups of tea etc –the problem ? they are 20 miles down the road which is certainly NOT a motorway , the Social Work has offered me breaks many times even holidays but my wife doesn’t want anybody else to look after her after 19 years . As my wife is severely handicapped its impossible to just walk out the door and leave her for long periods its a 24/7 job with NO government assistance which I think is diabolical only my OAP and works pension (small ) . When I am out .yes I do talk to people and yes socializing helps me but its only for messages and a short period . Posting on Which helps me mentally as it keeps my brain active and even if its “virtual ” socializing it does help me . This country treats people like me with disdain even though I am saving HMG a lot of money . I try to help others in the same situation by trying to keep up their spirits but its not easy as people stuck in a house ill 24/7 do get grumpy even very upset if they used to be very gregarious so its not easy living .

duncan, I am sorry for your situation but, I am sure, like me you would not want anyone else to look after your wife. Having love for someone has its own rewards. However having occasional respite is something I thought you may be able to arrange? I am also surprised that you do not qualify for the carers allowance, which seems to be a little more in Scotland than in England.
https://www.carersuk.org/help-and-advice/financial-support/help-with-benefits/carers-allowance?gclid=EAIaIQobChMIzN_vltnp2gIVp7ftCh1RCwfIEAAYASAAEgKwl_D_BwE

Having interests and hobbies that you can pursue at home, perhaps with other friends, whilst keeping an eye on your partner can help relieve the situation a little.

To qualify for Carer’s Allowance your income has to be no more than £120 a week, which is not a lot.

A friend’s father was in his 90s, his hearing was very poor and he was practically blind and lived in a care home for the last few years of his life. He was frustrated perpetually frustrated because his mind was active and it was so difficult to be deprived of the the ability to hear or read without the greatest of difficulty. His daughter visited regularly and took him out, but it was a strain on her, especially since she had a full-time job.

My personal experience as a carer was short-lived but I have immense respect for anyone who acts as a long-term carer of a family member or friend.

Hello Duncan: if you do want to explore getting carer’s allowance, the advice we give on the carer’s allowance page of Which? Elderly Care (https://www.which.co.uk/elderly-care/for-carers/benefits-for-carers/398640-carer-s-allowance) is that if you receive a state pension, it would be worth your while contacting the Carers UK advice line for a benefit check and to see if the underlying entitlement will financially benefit you. The advice line is closed this week, but you could call them next week on Monday and Tuesday between 10am and 4pm on 0808 808 7777.

Thanks for the info Emma but Wavechange is right the allowance is pitched at a level that is below what I get so penalizing me for being a carer while I save the government a lot of money. Do you think that is fair ? I was reading a Medical Professor commenting on the special system that the NHS has of putting certain old people into categories that end up in a controlled euthanasia situation to save on bed blocking even though he said he saved a few and took them off that category and they lived for another year or two, he was criticized for doing so .

I’ve been caring for my dad, used to be to mum and dad, for over 3 years. Mum only survived the first 6 months of that, lung cancer is not a nice illness to get 🙁 I’ve only been getting carer’s allowance for 2 years out of that, as they won’t backdate it. £67 odd a week is a joke. When I had a job that would have paid me upto around 10am Monday morning. “luckily” dad gets attendance allowance, as all he can do for himself is wash and dress himself, he would have a clue about anything else for the simple reason he’s never had to. And wow the forms for carer’s and attendance allowane couldn’t be more onerous if they tried.

Things that would make my life easier as getting some of the same benefits people who don;t have to do a min of 35 hours get, like free eye tests, prescriptions, dental. Cos all that stuff eats thru 67 quid very quickly.

I’d also like to add, that the NHS isn’t the wonderful thing some people make it out to be. If have to watch them like a hawk when he’s in hospital. Cos they won’t listen to me, they’ve nearly killed him twice. In fact it’s more stressful for me when he’s there than at home.

And going out what’s that ?

Some of the regular posters and admins will know I’m not on here as much as I used to be too.

I can sympathise William as I have had 18+years of looking after my wife , doctor in today wanting to put her in hospital because of severe anemia brought on by , she stated – 20% kidney function -needs blood transfusion and is suffering from gout in hands and feet ,never recovered from major stroke it goes on–. Yes I lost my pension credit etc as BT gave me a small increase in pension ,was getting 50p/week .As I am residing in Scotland I dont pay for eye tests/ prescriptions and emergency dental work. A carer here is treated better than in England , as NHS (Scotland ) gets more Scottish tax payers input/head of population than England treatment is a bit better generally and all the people moving over the border agree . As there are only 5.5 million population anybody treated badly gets nationwide publicity and immediate response from the Scottish government , the First Minister is “big ” on that sort of thing.

Sorry to hear about your Dad, William. Caring for a loved one can be such a difficult task. Not just because of the physical work, time and effort but also the emotional impact. I’m very lucky, I’ve not had to care for any family members, but I sometimes worry if I would be able to. I have nothing but respect for anyone who spends their time caring for someone else.

Have you raised your concerns with the hospital?

You are still a familiar face round here, William. Come back whenever you can. I can very much relate to the need to keep an eye on people when their are in hospital and my own experience brings back some painful memories.

Time before last he was in hospital I raised 7 ( yes seven complaints ), they fobbed them all off, as they’d managed to lose his drugs chart, which I thought was very convenient.

When I die, I’m making a bee-line for the man in change and tearing him a new one, as his design for old age was clearly given no thought at all. It’s no fun watching an 92 with numerous issues move about. He took 11 steps to my 3 when I bothered to check it yesterday. As that could me if I make it that far.

Duncan, am I correct in assuming your wife has autoimmune problems? I am presently well involved in research into autoimmune diseases (the main reason for my recent absence on W/C), and I am astounded at the lack of appropriate care afforded to people whose symptoms are being treated by GP’s with yet more and more drugs instead of dealing with the root of the problems, most of which emanate from the gut in susceptible people.

For example, there is a long list of autoimmune diseases attributable to disorders of gut permeability and its affect on the CNS (Central Nervous System), most of which are acknowledged by GP’s (including my own) do exist, but which they are refusing to treat by writing yet another prescription for more drugs to treat only the symptoms and not the cause of the problem, culminating in a whole host of unpleasant side effects that only add to the misery and discomfort.

Patients are being denied appointments with NHS specialists who are probably more able and willing to treat the cause, and are being told by their GP’s to “come back in 6 months”, by which time it may be too late.

GPs are trained not to give you the full facts unless you specifically ask for them. All of my GP practitioners have developed a habit of constantly talking over me when I question them, which has resulted on occasion in my walking away and resorting to private practice where you are treated as a human being and not another case history, albeit at enormous expense to myself.

The pharmaceutical industry are costing the NHS enormous sums on medication which is being prescribed by GPs to fob patients off in the misguided belief they are necessary when the truth is they are often a means of temporary relief from an underlying and persistent problem.

My research continues unabated…………..

Well you are right Beryl in that my wife doesn’t have good body resistance and you are right about the attitude of some doctors . When I went down to the surgery I told them my wife hadn’t slept for the pain nor eaten and if they thought I was going to sit thjere and watch my wife in agony —well they dont know me . The receptionist mentioned the “on call”doctor who my wife doesn’t like I insisted on another doctor but none was available, I previously “kicked her out the house ” for arrogance and doom laden but she called and insisted my wife’s anemia which she mentioned was down to 7 I take to be the red blood count was very low and wanted her in hospital right away for a blood transfusion and tests because they are limited by her kidney function as to the gout drugs available as she says they are bad for kidneys . My wife has an aversion to hospitals and needles , both her parents died in hospital from cancer she gave her a 10 day supply of a drug that would temporary help the pain of gout but she has to make up her mind after that . She does have stomach problems and if its any help a non common blood group. Thanks for the interest Beryl I am worried .