'Keeping Mum' and the true face of caring

During my Easter holiday break, I allowed myself to take with me just one piece of work - a book called Keeping Mum: caring for someone with dementia, which I had been asked to review. With a couple of long tube journeys down the Piccadilly Line to Heathrow, plus some time waiting to board at either end, I figured I could at least read chunks of the book to enable me to write a decent review.

But this is not that sort of book - I found myself enthralled, and read it from cover to cover. The main part of the book is a series of blogs that the author, Marianne Talbot, wrote for Saga Magazine, to record her experiences caring for her mother. Marianne uses an endearing term for the cared-for person - 'piglet' - 'Person I Give Love and Endless Therapy to' courtesy of Hugh Marriott who used it in his book about caring.

Marianne gives a no-holds-barred account of life as a carer and her struggle to navigate the system whilst holding on to her career, her social life and her sanity. The struggle of her mother to comprehend what is happening to her also comes through as Marianne imagines life through her eyes.

I can remember seeing Marianne speak at the 2009 Conservative Party conference, where she was on a panel alongside the then Shadow Health Minister at a session devoted to the care of older people, which we as exhibitors managed to get into alongside our partners, Carers UK, who had made the debate happen at conference. I remember her as an excellent speaker that in person was just as engaging as she is in her blogs.

If anyone wishes to find out what it is like to care, read this book - or if you are a carer I am sure that you will read this whilst continually nodding your head to all of the experiences described. The book is witty, hilarious at times, and finally, very moving. Alongside this, there is realistic and sensible advice for others in the same situation at the end, with practical information and a list of organisations that can help you and your 'piglet' - I was pleased to see Counsel and Care included.

Marianne's account of her experiences are inspiring on so many levels, whether or not you have experienced life as a carer. She proves that with determination, so much can be achieved for both the carer and their 'piglet', and that it IS possible to continue to work and care with the right support. Far too many people (many of them female and at the height of their careers) are lost to the workforce as they have to give up work to care full time, risking falling into poverty themselves when they reach pensionable age. We need to reduce this risk (see the previous blog on Care Concerns), and this book is a huge contribution to a solution as the proportion of older people needing care is set to grow.

Carers Week takes place every year to highlight the challenges of caring and reach hidden carers. The theme of the 2011 Week is 'The true face of carers' and the campaign will seek to discover what life is really like for carers in 2011. How much information is available? How much help do carers get from government? How hard - or how easy - is life as a carer? All of these questions will be answered during the Week that takes place from 13-19 June 2011. Counsel and Care is a partner of Carers Week, and you can find out more on what is taking place at http://www.carersweek.org/

Keeping Mum: caring for someone with dementia is authored by Marianne Talbot and is published by Hay House. Find out more at http://www.hayhouse.co.uk/ or for publicity enquiries, contact Jo Burgess on JoBurgess@hayhouse.co.uk or call 020 8962 1230.

The book can also be purchased at Amazon - www.amazon.co.uk and the Keeping Mum website can be found at www.keepingmum.org.uk

Who Will Care for Women?

Here we are in 2011: the Government has announced this year’s budget, councils are tightening their squeeze on public services, and it would seem older people will continue to lose out. But what about the progress being made by the Commission on the Funding of Care and Support? This Commission is looking into the long term funding of social care and the responses to its work are a mix of fear, hope and righteous indignation. Across the charity sector there is speculation as to its great power to create change or the possibility that it will be Dead On Arrival much like the previous efforts to sort out a coherent system. But there is a deafening silence on one topic.

Regardless of the system that is created - compulsory partnership or voluntary insurance scheme - it will fail if it does not account for women. Especially older women who could stand to gain in this system but, if forgotten, will again be relegated to the status of second class citizens as has happened in pensions. This country’s Government has long ignored the unpaid caring contributions made by women and the Commission’s Call for Evidence continues this trend by never outright mentioning gendered variations in caring.

This is no small point. Women make up the majority of people aged over 65 at 129 women to every 100 men. Women of all ages are the bulk of unpaid carers for children, the disabled and older people. They also are disproportionately represented in social care work, a notoriously poorly remunerated field. Women are, quite literally, the majority of inputs to and outputs from the social care economy that has been undervalued and devalued.

Let us not forget that women are still well behind men in terms of cumulative life time earnings because of time taken out to care, the gender pay gap, and over-representation in low paid, flexible and part-time work. This is not changing. If women struggle to accumulate pensions at a par with men, even the most sophisticated of partnership systems based on compulsory top-ups by the public will not account for a life time’s worth of low wages and time out of work. If social care is an area predominantly made up of one gender, where are the indications that economic modeling takes into account women’s working patterns and that their needs will be supported in this new world?

The ‘Sandwich Generation’ (the increasing amount of women who are caring for young children and parents at the same time) may be left feeling a triple burden as men continue to have higher earnings, higher pensions savings, and now greater social care assurances while women still bear the bulk of caring responsibilities. What will happen to women if the largest ever inquiry into economic reform of social care forgets to include women?

Posted by Lili Hoag, Senior Policy and Communications Officer

MORE FAMILIES PAYING OUT FROM SAVINGS SO LOVED ONE CAN STAY IN CARE HOME

Helping a relative or loved one to move into a care home is always a traumatic and emotional experience. So an unwelcome addition to this stress is when the local council social services inform you that you will have to sign a third party top-up agreement to keep your relative in the care home that you have chosen.

Our advice line has been getting more and more calls from families who have been routinely requested to pay more money for their relative’s care home fees in addition to the contribution made by social services. This is a worrying trend that is one of the main topics of concern to reach our advice line. In fact, it is not unusual for us to receive calls from distressed family members who are being given wrong information about third party top-ups or who feel bullied and threatened into signing a top up agreement with the council or the care home.

Recently, I was contacted by the wife of an elderly gentleman who had been in a care home for a number of years because of dementia and other serious health problems. He had been assessed as needing residential care because his wife, who had looked after for him for years, was not longer able to manage his care at home. Now that his savings had reduced to the capital threshold of £23,250, the local council had become involved in contributing towards his care home fees. The wife, whose own income was supplemented by Pension Guarantee Credit, was told by a social worker that if she did not agree to pay a substantial monthly top up to the care home fees, her husband could be returned home.

I was able to advise her that this was incorrect because firstly, her husband had been assessed as needing 24 hour care and the council had a duty to provide this, and secondly, guidance suggested that councils should not make third party agreements with relatives who were unable to financially sustain the arrangement. Our enquirer contacted me again to tell me that the advice and guidelines I had given her enabled her to challenge the council’s stance on this matter and it had now agreed to pay the care home fees in full.

Third party top-up agreements should only be requested by councils in certain circumstances, not as a matter of course. Only where a care home that is more expensive than the usual council rate has been chosen by an older person on the basis of preference rather than on the basis of their assessed care needs and where a cheaper, but still appropriate care home vacancy is available, can councils ask families to pay more. There are clear government guidelines on this issue for councils to follow and it is important to seek expert advice from organisations like Counsel and Care before signing a third party top-up agreement.

However, I do remain concerned how many people remain unaware of this and continue to pay out often from their own retirement savings to ensure that their loved one remains living where they want to be. The forthcoming cuts to council budgets has the potential only to make this situation worse, unless we do more to highlight people’s rights and entitlements in this area.

Posted by Pat Lacroix, Counsel and Care Second Tier Advice Worker

TURNING UP THE HEAT ON BRITISH GAS

While everyone else is tightening their belts, British Gas today announced a 98% rise in its profits, making £585 million profit in just the first six months of 2010.

Clearly British Gas profited from the very cold winter because older people and others had to use more gas to stay warm.

Rather than further price rises, surely British Gas should be looking at how to help older people with their gas bills in this coming winter and beyond.

Posted by: Stephen Burke, Chief Executive, Counsel and Care