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'Caring for our parents is not always possible'

FAMILY TIES: Rudolph Foster, centre, and his two younger relatives

WITH THE Government’s reforms to adult social care expected to be announced before the end of the year, three women whose differing lives revolve around care provision for elders are calling for everyone to take a greater level of personal responsibility for their ageing relatives.

Councillor Paulette Hamilton, cabinet member for health and social care at Birmingham City Council, has echoed the calls made by Valerie Paragon, who manages a city residential home, and local resident Trish Cummings, who has been dealing with care provision for her parents, who are in their 80s.

In addition to the £6 billion reduction in central government funds for adult social care since 2010, a Green Paper titled The Future of Adult Social Care, which was released by the Local Government Association last summer, estimates that adult social care services will “face a £3.5 billion funding gap by 2025, just to maintain existing standards of care”. In the meantime, local authorities are managing 1.8 million new requests for provision each year, which equates to nearly 5,000 every day.

Demographic projections offer no reprieve.

A new report by the Institute for Ageing and Newcastle University predicts that the number of people aged 85+ - the UK’s fastest growing age group – that need daily care to bathe, dress and eat will double to close to 446,000 by 2035.

This in addition to the one million over 65s that will need a similar level of provision.

“The authorities cannot continue to pour money into adult social care as they had in the past,” Cllr Hamilton told The Voice.

“Although there is a clear need to understand the difference between health care and social care, the real sadness for me is the common expectation that the state will care for us from birth to death.

“Social care is to enable us to live as independently and for as long as possible, without putting lives and health at risk. Birmingham City Council has 15,000 people out of 1.1 million receiving social care, accounting for over half its controllable budget, over £300m.


PICTURED: Cllr Paulette Hamilton

“There is a lack of preparation across all communities. From when we leave education and start working, we need to put finance aside to pay for social care, which unlike healthcare, is means tested and, is not free at the point of delivery. Out of every three people, two will need social care at some stage.”

The cultural tendency to avoid family discussion on provision for parents and grandparents as they age needs to addressed, according to the manageress of a residential care home that caters for black elders.

Now at Mary Street Extra Care Service in Balsall Heath, Birmingham, Val Paragon’s near-30 year career in adult social care has coincided with seismic shifts in the economic, political and social climates in which life expectancy, the period of time people are living with more complex needs and living costs have all increased.

She said: “We live in a different world now from when I started in this profession. The days of families being able to live on one salary and sacrifice a career to keep parents at home are over for many. There needs to be a good level of employment or income to keep families afloat.

“There’s an expectation that we will work longer and take care of ageing parents and grandparents, but the two aren’t always possible. Older people have a right to a quality of life, but so do their families.

“The costs of living are rising – fees for pre/after school and university, plus groceries and fuel. Also, conditions like Alzheimer’s and dementia, which have been predicted for many years, have to be accounted for.

“Within the black community, these have been exacerbated because of the incidence of diabetes and hypertension, which lend themselves to cardiac and circulatory issues. We need to be smarter and change the things we can, like diets and lifestyle, as part of open discussions among families.”

SYMPTOMS

“Many of us black people have not been able to watch and learn from our parents caring for theirs,” said Trish Cummings, 57, who lives in the Handsworth Wood area of Birmingham.

“We haven’t known what to do when our parents age.” Her mother, Ethel Hinds, 88, has been in residential care since 2012 and has vascular dementia.

Father Rudolph Foster, 86, lives alone with support to manage the symptoms of the same condition, plus Alzheimer’s disease.

Estimated to affect around 150,000 people in the UK, vascular dementia is caused by reduced blood flow to the brain. It cannot be cured and tends to deteriorate with time. Alzheimer’s disease is the most common type of dementia in the UK. The exact causes are unknown, but medics agree that it begins many years before the first symptoms, usually when minor memory problems appear.

Trish, an only child, made preparation for her parents’ latter years before she got married in 1987. Ethel moved in when Trish, her husband and two children moved to a bigger house in 2000, where a downstairs toilet and additional bedroom were built.

“Mum was always fussy, but around her 80th birthday, she began forgetting relatives’ names and wanted people around less,” she said. “Strange things happened over the next couple of years. Psychological tests confirmed she had vascular dementia.

“It gradually got harder to have Mum at home. She would misplace things and say they had been moved and claim her money had been stolen. She would get very upset over simple things. This disrupted the children. I had to explain to them that this wasn’t grandma, it was the condition.

“It was heart-wrenching, especially when the things she claimed were lost or stolen were found.


CARING: Valerie Paragon works with the elderly in Balsall Heath

SUPPORT

“She would feel so embarrassed. I worked as a nursing assistant in a psychiatric hospital for nearly eight years, so this wasn’t unknown to me, but now I couldn’t shut it away.

“I’d planned for Mum’s later years, but I never really thought it would come to this. Sometimes she seemed fine, at other times she wasn’t.

“I was working full-time when things started to go wrong, but I could not rely on her help around the house.

“We explored activities to support Mum: we took her to a day centre and she wouldn’t go back. We took her on several holidays with us, but for the last one she wouldn’t come out of the caravan the whole time. Sometimes she was fine, but as time went on, we saw the dementia creeping in more and more.”

At one point, Trish she was met at the front door by a very strong smell of gas. Ethel had turned the cooker on, left it and didn’t realise it was still on. A flick of a match, or even a light switch, and tragedy would have ensued.

The Cummings’ plight wasn’t helped by the conversations that swirled around them, concerning what was happening to Ethel, how they would cope and whether she should be put in a home.

The turning point came when Ethel fell and broke her hip. Medics were reluctant for her to return to the family home after her three-month stay in hospital, as she now needed 24-hour care. Trish and family took the tough decision to put her into residential care.

“Deep down, we perhaps knew that day would come, but tried to avoid it for as long as possible. Mum and I were together for so long: she and dad split up when I was seven or eight and I lived with her until I got married at 25, and again for the last 12 years.”


PICTURED: Trish Cummings with her mum, Edith

Ethel has settled in to the new home she was moved to last year and gets visits several times a week from family and friends, including her ex-partner Rudolph, who took her going into care really hard. Rudolph began showing signs of dementia in early 2015. Trish taking redundancy from her long career in the civil service soon after helped relieve the time pressures, if not the emotional ones she faced. “I knew things were not right with Dad, but it was tough balancing work and looking into his situation, as well as Mum’s, and my own family’s.

“Dad now has home help, but he does not want to move out of his flat. We have had adaptations made.

PROMPTING

“He used to do a lot of painting, baking and tended a large allotment well into his 70s.

“He can’t do those things any more and needs prompting to do things. We manage his finances and bills.

“I see Dad at least once or twice a week. For my wellbeing, it’s not easy to visit him every day but we also exchange phone calls and other relatives visit him, so he’s not isolated. I’m satisfied that he’s okay and I know that this might change. I visit Mum regularly. If I didn’t she might not still be here. She seems happier. She isn’t mobile now, but can still hold conversations.

“Sometimes I wonder whether what happened to them will happen to me. Both were so active. Mum would do so much around the house and Dad was the outdoors type.

“But can you be too active? I don’t know. I talk to my kids a lot about things so they will be prepared.”

Trish concluded with some poignant advice: “Families need to prepare for their parents’ ageing. We were prepared, but it was still so very hard. On a practical level, make a will before any assessment is made on care needs. Work out how care will be paid for and what will happen to their property.

“People can help here and there, sympathise and pray, but life goes on. My parents are not what they once were, but it is important to remember our parents or grandparents at their best. In some respects, I’ve lost them and I know at some point, I will do again, but I know preparing and then putting Mum in residential care and monitoring Dad’s situation are the best solutions for them and for us.”

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