/ Health

How do you manage the demands of caring for relatives?

Elderly couple in care home

Many families provide care for their elderly relative, often with little or no outside support. To mark Carers Week, we’re discussing the experiences shared by carers when looking after elderly relatives.

Brian’s family is an example where a number of family members share the responsibility:

‘My mother gets no outside care except from the family and we really have to work together to do it. There’s no way my mother could cope for even a day without someone going in.

We have a rota and if someone can’t make their visit, the others are flexible and fit in. We run our diaries together and we make sure we don’t go on holiday at the same time. It is fortunate for her that we’re fit enough to help!’

Organising care rotas

But carers can end up in impossible situations. Carol’s parents and aunt were in their 70s and 80s and had cared for her granny’s everyday needs for years until she became ill following a chest infection:

‘Within days she went from preparing most of her own food and going up and down stairs to having a bed in the sitting room and needing 24-hour care. I organised a rota of five people to be with her. I was phoning social services and saying my parents are in their eighties, they can’t cope with this.’

But the family still has to manage the situation even when outside carers are brought in bringing new issues. For example: Rachel’s carer was rarely on time:

‘They don’t get paid travel time between appointments, so they want to shave a bit off the end of one call to give themselves time to get to the next place. Sometimes the carer was an hour late and by that time I’d done all the tough jobs like washing or bathing my mother and helping her use the commode or toilet.’

Time demands on carers

Iris had a similar problem:

‘They’re only given 15 minutes and in that time the first girl had to get Dad up, dressed, washed, changed – and there was no time for breakfast. She had to wash him while he was sitting on the toilet because she didn’t have time to do it separately!’

Becoming a carer can also raise emotional issues. Sophie’s mother has become increasingly confused and needs help from her daughter to manage her finances. Sophie told us:

‘It is really, really hard to say, you’re not coping, particularly for a child to their parent – you are reversing the natural order of things. Ten years ago she was fine. But very gradually, she became less sharp and more forgetful. She found it horrible having someone asking all these questions about her money and to begin with it was very difficult.’

Do you care for a friend or relative? What works well for you and what do you think could be improved?

Comments
Member

A hugely difficult and emotive subject.

The problems are manifold but particularly concerning are the financial matters. I have spent some time thinking on this following the discovery that my deceased father, a very intelligent man, had been lottery scammed over a period of £18,000.

Essentially with prostate cancer the number of oxygen carrying blood cells is reduced which arguably leads to poor mental performance. I did wonder if family should have some form of control however the sibling rivalry may be a nightmare.

My initial idea is that there needs to be a third party who simply considers the operation of accounts etc, and can intervene. This almost a role that the old branch banker would have performed – and in fact it is still a requirement that when elderly people withdraw large sums cashiers should be on the alert. However in the day of the cash card this seems fairly futile.

Pre-loaded debit cards may be the way to go with geographically close “trustee” to query the odd, and agree the bigger purchases.

Member
Kess says:
10 June 2014

I’m not sure it’s just prostate cancer that renders people unable to deal with their finances and I also feel you are missing the point of the article. Regardless of lack of oxygen to the brain cells there are plenty of vulnerable people who cannot manage both their finances or care on their own. This is not a unique situation to those with cancer. In fact my mother had cancer at 42 and died 6 months later, this didn’t affects her mental performance but it did render her unable to use the toilet, wash or walk. On the other hand my grandfather was able to walk for years but had undiagnosed Dementia and eventually he choked to death after pneumonia put him in hospital after years of decline.
If someone with a lack of mental capacity needs help on that front there is plenty you can do, including power of attorney. Most companies will also allow you to *add* on a person to the account so they can access it and discuss. In terms of banks, you will need power of attorney for that but is a simple thing to do or if you cannot afford that, you can sign up to online banking, paper statements and keep debit cards away from relatives who cannot use them reliably and requesting a cash card only or a post office account where a pension can be paid into. There is plenty you can do to help a relative be safe from scams or to help them manage their finances and while I am sorry for your loss, this is not a major issue facing the state, family, the NHS, carers and the carees if you will.
If siblings cannot agree that is not the states problem. In any case most banks are now targeting anyone who withdraws large amounts and those who use the internet for their bill paying and purchasing. I feel strongly that is it not up to a Bank Manager to be a carer for an older person as there are simple ways to tackle the issue. What you are talking about is education about these things, but that is very different as to who provides care for those who need it to carry out basic daily tasks such as using the toilet.

If someone cannot get basic help towards using the toilet, washing and eating as the above article highlights and is something more and more people are being affected by, then we need to discuss what changes can be made to provide care to those who need it both young and old.
The media would have you believe every relative is being stuffed into care homes, but for most carers and the relative in question, care homes are a last resort and most people wish to stay in their own home. Most children cannot just give up their own jobs as they have rents/mortgages and their own children to support so most families become sandwich carers until they themselves cannot cope or the relative in question declines to the point basic care can no longer be provided at home.
I am not sure what the answer is to be honest but we are facing a serious crises. We seem to be able to find money to buy a water cannon for London but not 30 mins for someone to use the toilet and eat.
We need to get off this obsession that all children/relatives are sending their relatives into care homes, most are not but at breaking point for both the carer and caree and just want a little help and dignity and may find the care required is in a facility. We also need to tackle the issue of abuse!

Member

Kess – Perhaps it is unfortunate that I did not make plain that I am talking of the difficulties where an elderly person is very independent and will not willingly agree to any interference with their activities.

I am fully aware of all the possibilities available to those who agree to help, or those where their doctor is prepared to sign that there is an incapacity. As someone who worked in the financial field I know it is not easy to set-up up additional signatories without the agreement of the account holder!

As you say ” We seem to be able to find money to buy a water cannon for London but not 30 mins for someone to use the toilet and eat.” The rather large sums of money could have helped him pay for the more personal services that he needed in the last few months of his life. Which would have left more in the local authority health budget for others. Perhaps you can understand where I was coming from now.

The article highlights that caring can be very difficult with anecdotes that make one wince.

This is from on-line to add some scale to the problem:
http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf

Member

Thanks very much Diesel for providing the link to those statistics; they are a mine of very useful information. I was particularly struck by the fact that of the two million older people with care related needs, 800,000 currently do not receive any formal support.

It was also interesting to note that aproximately the same number of people aged 65 years or over [414,000] are in residential care as are receiving community-based care and support at home. £13.4billion a year is spent on residential care [includig LA funded, voluntary and private expenditure] while £8.8billion is spent on non-residential care.

Member
Gerald says:
11 June 2014

Hi John fancy finding you here, maybe now you have seen the enormity of the problem as highlighted by Age UK you might just appreciate the difficulties we, the front line workers, have of coming up with blanket solutions at silly prices which the Authorities continually try to impose on the Public.
Mr. Ford didn’t continue his success when people were given choices either.

Member

I suspect that most carers and just getting on with caring for their elderly relatives and have, somehow among the family, worked out a routine to cope. If it is anything like ours, this is far from ideal, but works due to family compromise and cooperation. The problem is that no one out there knows that we exist and “they” (all the organisations -private and public) are fully stretched and therefore don’t go around looking for work. For those with a fortune to spend, there are companies who will provide live in care and holiday cover, but in the real world the stories are about fifteen minute visits, missed appointments, undignified treatment and stressed out, poorly paid workers. Penetrating the mists of the social services and local private concerns takes time and energy. There doesn’t seen to be any coordination or easy access to help, and there’s more stress for us when such help is either poor or unreliable. Deciding on what help to apply for can be difficult too. It’s this opaque jungle that needs to be looked at urgently. More and more of us will need help and advice and, as this happens, the time bomb ticks.

Member
janet T. says:
14 June 2014

As one who has been and still is a carer and also working in the care sector, I can see the arguments from both sides. I am in the process of filling in a Lasting Power of Attorney form to give relatives authority to manage my financial affairs when I am no longer able to do so. This is cheaper and easier to do whilst you are comparatively fit and healthy and also considerably cheaper, You do not have to be demented to want others to manage your finances, If a relative lacks capacity to manage their finances and are in a care home, the local authority usually apply to the Courts of Protection if no one else is willing to stand. They will be grated Deputyship status and will manage the finances of the person in care.
The government have now made it clear that LA do not offer 15 min care slots, and a recent ruling has also made it clear that carers need to be paid for their travelling time as otherwise the Minimum Wage regulation is breached. Local Authorities are being squeezes by Governments reducing monies to LA and hence the removal of moderate eligibility criteria’s. DLA (Care) and Attendance Allowances were introduced to enable recipients to purchase low level of help. AA are not high at the low level but will pay for a private cleaner/carer for 5 hours assistance in a week ( depending on area). However most people see this as part of their everyday income to pay for food etc. I was a carer for my great aunt and cared for her overnight, did her laundry, but she also received 3 times a day care from social services as I had a primary aged daughter and a mentally ill husband and was a full time worker. Later I cared for my mother, who received only once a day care as being on dialysis 3 times a week and getting home anytime from 7 pm to midnight, no local authority carer would work those hours and we could not get private care. I have provided intermittent and differing levels of care for my husband who is bipolar for the past 35 years without any assistance from social services or NHS. Unfortunately the Welfare State cannot assist everyone there is not the money, so we have to expect to either play our part in caring for loved ones ( as much as we are able) and when time comes that we need help to be prepared to pay something towards this ourselves. In my LA, the care is means tested and generally speaking anyone 60 plus who has an income under £171 pw is unlikely to have to pay for their care (will pay if they have more than certain amount of savings). I am not a fan of this government who I believe are only acting for the rich, but compromise by everyone is the key

Member

Hello to you all and I have read your comments with great interest and see just how much they back up the need for support for carers just as much as those they are caring for. I think you are so wise to be filling in a lasting Power of Attorney, Janet, as this is one of the most practical things that we can do to help the next generation in the future. The statistics from AgeUK make salutary reading and it is through the work of such organisations as AgeUK and our new website Elderly Care, that we hope to be able to help all those unpaid carers to work their way through the complex decisions, which so often need to be made at short notice. Thank you for your contributions to the debate.

Member
Member

I know that comparisons are invidious, but the financial provisions for fostering a child seem to be much more realistic [at around £120-180 a week depending on child’s age] than the support available for providing essential care for an elderly, disabled, or chronically sick adult. I expect the reason is that the fostered child is officially in the care of the local authority and “placed” with the foster parent whereas the local authority has no legal responsibility for the adult and in many cases is probably unaware of the individual, their needs, and who is looking after them. Whereas social services departments have a statutory duty to care for children at risk, I am not sure that they have any such duty to identify elderly people at risk and to supervise and support their welfare – it certainly doesn’t appear so since it seems they only get involved if approached, and then only to a default standard of provision. It will be interesting to see whether the recent reinforcement of the expectation that GP’s should be proactive in their oversight of elderly patients with dedicated case management will lead to more referrals to social services and how the organisation will cope. It looks to me as though adult social care as an element of the welfare state has gone past its breaking point and is only being sustained, or sheltered from reality, by the efforts of people who are increasingly unable to carry the burden and the responsibility as they themselves advance in age.

Member
David J C says:
20 February 2015

Thanks Emma Callery for good article
In my opinion ., i offer to use outsite supporter . Because they are professional services. So they have good experiences than us . Actually we can handly all the things . Ex: About time ..etc…
I have rent 1 company for my parent , just 275 pound per week .
It not much money but professional services.
It can save our time

Member
Stephanie JAMIESON says:
18 July 2017

I have spent the last eight years caring for my Dad who had both Parkinson’s disease and Lewy Body Dementia. I eventually had to leave work as the situation worsened. We did try to bring in outside help but it just seemed to add more of a strain as they would constantly turn up late, early, different workers who were confusing Dad even more and left my Mum exhausted with not knowing who would turn up and when ! Some workers were better than others but it was very apparent that they were in a rush and under a lot of pressure themselves. Eventually we just accepted that my Mum and I would manage ourselves. Sadly Mum suffered a number of strokes and through her experiences did not want anyone in from outside agencies. This meant I now cared for both my parents, I never received payment for any care and have struggled financially to cope. Last November Dad passed away and I found myself looking to find employment again, as I only have to take care of Mum. Although this has also proven difficult as I’m so out of practice. The whole system needs to change and look at how we support our elderly in a more caring way.

Member

Stephanie I can relate to some points you have made. I received a pompous letter telling me as I reached retirement age I will no longer be receiving Carers Allowance as the government has said you cant receive two benefits at the same time -IE- State Pension + Carers Allowance , and there is me thinking -well I paid into my pension in my working life so why is it classed as a “benefit ” . Our government has decided to hit the poor where it hurts instead of Big Business who it protects . According to Wiki- Pension= a fund into which a sum of money is added during an employee,s employment years and from which payments are drawn to support the person,s retirement .Definition of a benefit -given as part of HMG support of financial help in time of sickness, old-age pension+unemployment . There again I thought I was living in the UK not the USA , no wonder Labour are making inroads to public opinion . Stephanie if you are/were under retirement age you were certainly entitled to a carers allowance and/or financial help . I am an official carer registered with my regional council AND with the full knowledge of HMG , I have a card I carry at all times in case of accident so my wife will be looked after but dont get a brass farthing from HMG . Whole system needs a change Stephanie ? more like a complete political agenda upheaval of its now built in political dogma , from Big Business first to UK citizen number one.

Member

Duncan – I agree that the withdrawal of the carer’s allowance upon reaching retirement is highly detrimental. I can only assume that the carer’s allowance is designed, in theory, to compensate people who have had to give up some or all of their paid employment in order to care for someone. The government therefore presumes that, when the carer’s retirement date arrives and they qualify for a state retirement pension, they no longer need a supplementary allowance since they are assured of a continuing income. I don’t know when this rule came in but I think it’s been around for a long time. I think it’s a particularly mean-spirited and hard-nosed policy that completely fails to recognise the dedication and contribution that carers give and their need for some additional income to be able to afford extras to make their own lives and those of the people they are caring for more agreeable. I know what a struggle it is for people who are already of advanced years to be taking full care of someone else as well as coping with their own difficulties; money is not necessarily the answer in such circumstances but there is no denying it can enable people to get out more, have better diets, and enhance the dignity of their situations. The government is institutionally frightened of giving out more than is demonstrably needed in case some of it is wasted, saved, handed down to the next generation, or used to buy things of which it disapproves.

I see that in a previous comment in this Conversation, based on statistics provided by Patrick Taylor [writing then as dieseltaylor], I noted that approximately the same number of people aged 65 years or over [414,000] were in residential care as were receiving community-based care and support at home. £13.4billion a year was spent on residential care [including LA funded, voluntary and private expenditure] while £8.8billion was spent on non-residential care. So the contribution being made by unpaid carers was equivalent to around £4.5 billion a year and took a considerable amount of pressure off the NHS, LA, charitable and voluntary organisations without which relief they would probably have collapsed. The figures might be three years old or more now but I expect the same economics prevail or the position is even worse. This contribution is not being properly recognised by the current system and I just wonder at what point, with a rising population of an advancing age profile, the government will wake up and realise that dealing comprehensively, rationally and equitably with home and community care in all its manifestations is a vital necessity.

I see that I was also particularly struck by the fact that of the two million older people with care-related needs, 800,000 were not receiving any formal support. They were dependent entirely on their own resources and on those who were caring for them and not claiming a penny from the public purse. This must also represent billions in ‘savings’ to the state.

I would not wish to make a party-political point about this – it is an indictment of many governments whose attitude to home care and welfare has been inadequate to say the least.

Member

It has become common to carry on working, often part time, after ‘normal’ retirement age. I was speaking to a chap who is 70 and was planning to work for another three years, but his plans have changed since his daughter in law has been found to have cancer. I have a great deal for people like Duncan who have had to devote so much of their lives to caring for others.