As it’s been Carers Week this week, we’ve been recognising the 8.8 million unpaid carers across the UK who provide amazing support to their loved ones day-in and day-out, often without a break. Caring, for many, is a full-time role which can be exhausting and emotional, particularly as carers get older.
As part of our When I’m Gone campaign we met with a number of carers who shared their fears and concerns about getting older and what that will mean for their loved ones. As of the last census in 2011, it was found that there were around 2 million carers in England and Wales aged 50-64 and 1.3 million aged 60 and over. As the national figure for the amount of carers has increased, we can safely assume that the number of older carers has increased too and the need to support them will continue to grow.
One of those carers is Inge who is in her 60s and shared her story as part of When I’m Gone. Inge worries about the future for her daughter Noreen who is supported by Sense. Noreen is 37 years old and has learning disabilities, is quadriplegic, blind epileptic and does not use speech to communicate. Whilst she receives support from Sense and some respite care, Inge feels “under pressure, with little support. And as I get older I worry about where Noreen will be able to go locally when I am no longer able to provide care. I know that if Noreen is not settled somewhere she feels comfortable, she will be incredibly unhappy. She will stop eating, stop drinking, refuse to take medication and be at risk of going into hospital. I really worry about what will happen to her if I can no longer take care of her.”
Unfortunately, Inge’s story is not uncommon. Many older carers worry about the future for their loved one because of simply not knowing who to go to for support. This uncertainty about where to go for support means that many carers are left alone to make decisions for their loved one without any clear guidance or advice. This can be isolating and emotionally exhausting as families struggle to get the right support, purely because of a lack of information.
Janet who is in her 70s cares for her son Tony and has felt this isolation first-hand. Before being supported by Sense, Janet didn’t know how to support Tony in the best way and they both just carried on, without the correct and adequate intervention. It was after ten years of total isolation that Janet was made aware of Sense TouchBase South East which was a lifeline for them both.
“Before Tony went to Sense, we never used to talk to each other. We just lived side-by-side.” Janet said
“Now when he comes home he tells me all about what he’s been up to. It’s brought us back together again.”
Tony now has time to interact, socialise, develop life skills and experience new things. He also now has Graham, a Sense intervenor, who supports Tony to go out in the community. The support means that last Christmas, Janet received a Christmas present from Tony that she didn’t know about in advance – something she hasn’t had in in over 50 years.
Now Janet and Tony have a revitalised relationship and feel connected to each other for the first time in years. Whilst Janet still has concerns about the future, she feels more hopeful after getting the support from Sense and from reading the Decisions to Make, Steps to Take toolkit. The toolkit aims to make planning for the future clearer for disabled people and their families and covers a wide range of issues, from financial support to welfare and benefits to social care.
To get your copy of the Decisions to Make, Steps to Take toolkit please contact the Sense Information and Advice Service at firstname.lastname@example.org or on 0300 330 9256