Storying Sheffield

At home with dementia

Many thanks to Yo Tozer-Loft for sharing this story.

There are times in life that are bigger than we can manage. In 2009, when my children were 7 and 3, my father came to live with us. He was 83 and far into his dementia journey.
As with marriage and parent-hood, we throw ourselves with love, (and limited vision), to care for our dear, ageing parents. It is absolutely the right thing to do but, for me, was life’s greatest test to date.
Although we could get no help with house adaptations (eg the cost of a stairlift and wetroom to facilitate Dad’s life with us) I will always be grateful to Sheffield Social Services for the three times a day ‘Care Package’, actioned by a Social Worker from the very day my dad arrived from Suffolk. Dad made a financial contribution to this (which worked out at about £9 per hour). Carers came at 9am, 12 noon and 8pm – these hours or half hours to support Dad in washing, dressing, lunching or getting to bed meant that my Dad’s privacy was protected and I could leave the house to take the kids to school, or get to the shops at lunch time. Also ,thanks to these care visits, bedtimes remained all about the boys’ routine.
But imagine the other hours: the morning; the long afternoon… As Dad’s condition deteriorated, I could not leave him for longer than half an hour.
There has been a charity in this city for the last 25 years, fairly invisible behind its cryptic name ‘SWASS‘, who offer saving light to the full-time carers of older people. In 1987, a group of Social Workers organised a meeting in Sheffield for those caring for Elders but no-one was able to attend. The need for someone to sit with an Elder, thus allowing their carer to leave the house, was recognised and SWASS was born.
SWASS was ‘The South West Area Sitting Service’ and reached the entire south and south-west areas of Sheffield as defined by the Community Assemblies; a group of 36 volunteers, organised by 2 paid staff to sit with people like my dad – dear, elderly, beloved, vulnerable people who’ve lived long, inspiring lives and now sit in houses, needing loving care and protection.
Each week, a volunteer sat with my dad for a 3 hour period; long enough for me to get out, get away, do something useful, necessary, normal. Full-time caring can be suffocating and support from SWASS was like 3 hours of fresh air. Most of the Carers served by the charity are older themselves (I was one of only 5 out of 36 carers under the age of 60). It is especially important for older people to get out, to walk, socialise and be stimulated, especially if their partner is a dementia sufferer like Dad and the carer wishes to protect their own healthy brain.
The organisation was wonderfully reliable. I could look forward to the arrival of our SWASS volunteer and know relief was imminent. The regularity and stability of this relief of tension stopped me from snapping, from cracking up physically, mentally emotionally. It prevented the ‘house of cards’ of my care from falling. If I had broken down, Dad would have been in hospital, my husband off work and my young children traumatised.
The Sitter brought freshness to my dad – they weren’t busy like the carers and could sit and talk, or just be a peaceful presence in the room. One played the piano, which he loved.
Over the past year, this charity has supported 36 families (6 more on the waiting list). It has managed 36 volunteers (3,000) volunteer hours) using 2 part-time paid workers at a total organisational cost of £30.000 per annum. SWASS has been funded for the last 25 years by a Council Grant of £28,000 per annum plus smaller grants from Charitable Trusts and donations. This works out at £10 per hour for this sitting service, including the sitter’s transport costs, plus the benefits of being served by an organisation small enough to be personal. In the background are the stability, reliability and longevity of the charity. In almost every case, its been an hour of benefit to 2 Elders, the carer as well as the house-bound relative. Will our City be able to produce anything better?
From September 2012, Sheffield City Council adopted a process of Compulsory Competitive Tendering. A very small organisation such as SWASS does not have the necessary infrastructure to enable it to compete in this new ‘Market Place’. This meant that SWASS no longer received a grant direct from the Council, and the task of raising their own funding every year was impossible. The Trustees have had to make the very difficult decision to close the service.
But a small organisation has benefits which number crunchers could use to prove it a prudent option: it can manage its logistics thoroughly, meaning the service can honour almost all its arranged sits; volunteers can be carefully matched with families and these relationships are often long lasting.
Referrals have come to SWASS from Social Services, District Nurses, The Alzheimers Society, the Intermediate Care team, plus carers and family members. It’s been well used.
Wouldn’t this city be wise to maintain, and indeed replicate, an organisation that has the expertise of a quarter of a century, a good track record of mobilising precious volunteers, and a long history of supporting families at their most vulnerable? Why are we throwing this away?
I know my dad benefitted from the familiarity of home and family. We were able to care for him at home for almost 2 years before he needed 24 hour nursing care for the last 4 months of his life. If my story was 4 years different, if I was moving Dad in April 2013, would I manage?
I used to feel challenged by people (mostly doctors) telling me I was ‘marvellous’ for caring for dad. It should be normal to care for our parents at home, not marvellous. It was hard enough to do with the support of Social Services, SWASS, neighbours, Church friends and family. Taking out the 3 hour block of weekly support from SWASS would certainly have limited our family time with Dad.
Yes, caring for my demented Dad at home was the hardest challenge of my life: my friendships were neglected, my part-time job and my freedoms were sacrificed, but we had some of the sweetest moments together: birthday teas, singing , grandchildren kissing Grandpa goodnight. Being demented with your family is more beautiful and less challenging and frightening than being demented anywhere else. But we can’t do it on our own.
Yo Tozer-Loft