Category Archives: Home and Care

My mum, dementia and me

Tommy and his mum, Joan

Today’s blog is from Tommy Whitelaw, who cared for his mum Joan for five years until she sadly passed away in September 2012. Tommy will be speaking about his experiences at Age UK’s Annual Conference on 18th November 2015- you register to attend the conference here.

When my Mum was diagnosed with vascular dementia, I looked at her and thought to myself “it’ll be okay, we’ll get through this.” I soon learnt as her carer that dementia is an unpredictable illness. Her illness brought many challenges and forced us to adapt to ever-changing routines. Many days we would wake up to discover that everything we had grown accustomed to had suddenly changed again.

I wondered whether the struggles I faced were mine, and mine alone. I questioned how other carers who had been on the journey I was just embarking on, had managed to cope.

What struck me throughout was the lack of awareness about and understanding of dementia, and the unhelpful way we perceive the illness in wider society.  My door was always open but no one walked through it, people didn’t come to visit us anymore and I truly believe that was down to the stigma surrounding the illness.

This realisation led to my first venture into the world of awareness-raising, through my ‘Tommy On Tour’ campaign. The campaign involved collecting life stories from people across Scotland who were caring for a loved one with dementia. The hundreds of letters I received proved that the challenges I was facing were far from particular to me, and yet that everyone affected by dementia has a unique story to tell. By sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.

Dementia Carer Voices Project

Improving people’s understanding is something I continue to be passionate about. I’m now building on my work with ‘Tommy on Tour’, as Project Engagement lead of the Health and Social Care Alliance’s Dementia Carer Voices Project.

The project provides a platform upon which carers can express their views and experiences of caring for a loved one living with dementia. Through this, it aims to raise awareness among health and social care professionals and wider society, about the impacts dementia has on families and the importance of empowering carers as they carry out this difficult but vital role. I give regular talks as part of my project work, the key focus of which is to highlight the impact that inspirational health and social care professionals can make to the journeys of carers across Scotland.

People who appreciate and understand the unique challenges that dementia brings can be there to prop you up, and I absolutely believe as a carer if I was propped up a little bit with the right help and support, I could have given my Mum the best care and support in the world.

The experience of caring for my Mum undoubtedly brought great challenges, stress, isolation and sadness, but it was a role carried out through love and we enjoyed many touching moments of joy and satisfaction. Those special moments live long in my memory, and gave me a real boost of strength to get through the difficult times, as they continue to do so now.

To book your place at Age UK’s annual For Later Life conference head to www.ageuk.org.uk/forlaterlife.

For advice and support on caring for a loved one, visit our dedicated website pagesIf you have a caring story you want to share, email the Campaigns team at campaigns@ageuk.org.uk to get in touch. You can also find more about Tommy’s work on his blog.

The delayed spending cap – next steps

The decision to delay, and possibly abandon, implementation of the lifetime cap on spending on care, is a retreat from a commitment that the Government made in its manifesto for the last Election. As a result, the risk of endlessly spiralling care bills remains and for as long as no cap is in place older people with assets will justifiably worry that they could be ‘wiped out’ financially if they are unlucky enough to need long term care. It is very disappointing that after all the efforts of the Dilnot Commission to come up with a solution so that older people could have peace of mind, this problem remains.

It should not be overlooked that the Government’s announcement also delays the implementation of two other important commitments.

First, although the Government’s decision not to implement the lifetime spending cap received the most attention, a second decision announced at the same time will actually adversely affect more people. It was that they would not be raising to £118,000 the maximum level of assets that are taken into account in deciding whether people must pay for their own care, as originally planned. Continue reading

Care cap delayed

The implementation of a lifetime spending cap on the amount an individual would spend on care was a flagship of the former coalition government’s social care policy, and a manifesto commitment for the present government. However implementation of the spending cap, originally intended for April 2016, has now been delayed until 2020. This means after the next election, so this delay raises considerable doubts about whether the cap will ever be implemented at all.

Age UK supported the proposed spending cap in principle and still does, but as we have said before, the devil is in the detail. For example the Dilnot Commission on long term care funding, which thought up the idea of the cap, originally set the cap at £35,000- £50,000, which was carefully calculated to ensure that the less well off would benefit. This objective was undermined by the government’s decision to raise the cap to £72,000.

Now that details of the scheme have emerged – with draft regulations being published only just before the election – it has become clear that the top priority must be to stop the social care system that millions of older people depend on from collapsing in its entirety.The most urgent priority arises from the current situation where cash strapped local authorities have restricted care to the point where over a million older people who are unable to carry out at least one vital activity of daily living without difficulty (for example using the toilet, getting dressed) receive no care whatsoever. Continue reading

Caring for life

Maxine and Joan (left) speaking to Maria Miller MP at the Carers Week parliamentary reception

Maxine and Joan (left) speaking to Maria Miller MP at the Carers Week parliamentary reception

This blog was contributed by Hannah Pearce, Age UK’s joint Head of Public Affairs.

Listening to one of my favourite radio programmes, R4’s Soul Music recently, I was very moved to hear one of the participants Ray taking about his life with his wife Sylvia and the importance of music to their lives. They had married in 1953 and celebrated their Diamond Wedding anniversary in 2013 shortly before her death last year. Ray explained that Sylvia had had dementia in her final years and that life had been difficult but that he had promised when they married that ‘for as long as I could breathe I would look after her.’ It was a small glimpse into the private lives of others and a reminder of the 1000s of people in their 80’s dedicating their lives to caring for loved ones across the country. Continue reading