The tightrope generation – caring without a safety net
“I wouldn’t want my children to look after me”
“my mum would have said that but she has dementia…..she would have dreaded the thought that my life would be consumed with looking after her but that is actually what has happened” Ming Ho who is ageing without children Woman’s Hour May 17th
Much is made of the “sandwich generation” people, usually women, caring for both their parents and their children at the same time; however there is another caring generation, those people over 50 caring for their parents who have no children. It’s easy to dismiss them by saying “well with no children to worry about, caring is going to be much easier”. We argue that being what we call a tightrope carer i.e. a carer who has no family safety net below them is just as difficult in its own way and brings different but equal problems to sandwich caring.
We identified in “Our Voices” one of the key trigger points for people approaching AWOC is one they first become a carer for their own parents. Below is the story of John and Lindsay Allen
John and Lindsay are both 64 and live in a small village in rural Cheshire. They would have liked to have children but there was a possibility of Huntington’s disease in the family and they decided that it wouldn’t be fair to pass on the disease to a child. By the time they found out that the illness affecting Lindsay’s mum was not in fact Huntingdon’s disease, Lindsay was in her early 40s and they felt it was too late to try for children.
‘People ask if I have a family, and when I say no, I don’t have children they say, ‘Oh, you’re so lucky; you can do what you want.’ They’ve no knowledge of the decisions I had to make along the way. It did use to upset me quite a bit when I was younger. Then, in my 40s and 50s, I accepted it, but now I worry more because of what I’ve seen with mine and John’s parents.’
As with many people who come to Ageing Without Children, it’s been the experience of caring for their own parents that has made them worry about their own old age. Lindsay’s father lived independently with care at home, but Lindsay had to arrange and manage all the care and his finances. As John’s mum became much older, she, as John describes it, ‘began to give upon things’, and became very withdrawn and forgetful. After a lot of searching they found a very good care home for her, but it costs £32,000 a year.
‘John’s mum phones us most nights for reassurance, and that’s fine because we are her children. Both our parents’ quality of life was enhanced by having us there. We remember the little things that they like or dislike, and can tell a person. That’s what matters, the little things that make their lives better. You need someone looking out for you, someone who loves you.’
The experience of caring for their parents has made John and Lindsay think a lot about their own future.
‘We are looking for an apartment in retirement housing somewhere close to all the services, and with good transport links.’ They believe that it is vital that people ageing without children have ‘just someone you can trust, who you can discuss things with. Dealing with financial stuff in particular is a massive thing.’
There’s nothing like being confronted with the bewildering maze of confusion surrounding the NHS and social care to truly bring home how much you need help to fight your way through it. Person after person contacting AWOC tells a similar story; it wasn’t until they started to be a carer for their own parents that they truly understood how hard it is to navigate the system and get help. Like all carers, they talk of endless phone calls, long repetitive forms, countless meetings with different people who seemed to come and go out of their parents life with no real understanding of what was going on, hours in cars and on the phone visiting, reassuring, helping, arranging. And always a small voice in the back of their mind saying “who will be doing this for me?”
Carers who are ageing without children feel very real fear but it goes mainly unrecognised and unacknowledged. In fact people ageing without children who do raise the issue of “who will do this for me?” are often seen as being selfish “well I don’t expect/want MY children to look after me” people often sniff forgetting of course that it’s easy to say that when you’re not actually old and in need of support and help. No one wants their children’s lives to be consumed with caring as Ming pointed out on Woman’s Hour but the reality is, when people become frail or ill, and they do need help and support, that support is most often provided by their spouse/parent and/or their child, and the older they are, the more likely it is to be their child. If we continue to deny this reality, we will will continue to base services on false assumptions; that all older people have a family to help support, advocate and care for them. There are of course advocacy services doing a brilliant job to support older people without family but they are underfunded and overstretched now and in without significant investment, cannot hope to fill the gap of 1 in 5 people over 50 being without adult children. We are still not remotely close to being able to answer the question for carers who are ageing without children “who will do this for me?”
AWOCs national conference on 27th June is aimed at helping people ageing without children plan for a positive later life AWOC CONFERENCE JUNE 2016