Ageing Without Children

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An AWOC take on “Care”

Last night BBC 1 showed “Care” which told the story of Jenny a single mother and her sister Claire struggling to care for her widowed mother Mary after she has a sudden stroke which leaves her unable to communicate properly and with vascular dementia. This blog gives an AWOC take on what unfolds (spoilers ahead).

The first thing to say is that during 90 minutes, I counted 30 times where Jenny and/or her sister Claire were shown as offering support and/or care and/or advocacy. Jenny in particular is shown repeatedly comforting her mother when she’s showing signs of distress and fear, taking the time to work out what it is she wants, visiting her, and physically intervening when e.g. Mary tries to eat a tea bag. In a pivotal very upsetting scene, Jenny and Claire sit through a case conference to discuss Mary’s discharge, while Mary who can hear but can’t verbalise her thoughts makes increasingly loud incoherent cries of sadness, fear and anger. Jenny eventually grabs Mary’s wheelchair, takes her from the room and back to her house resolving to care for Mary herself.

The key thing throughout the whole drama is that Jenny is shown as caring about her mother in a way no one in health and social care does. People in the NHS and social care are shown as doing their jobs with greater or lesser degrees of sympathy for their role in the process, but Jenny is the only one who cares how Mary feels. For people ageing without children, especially those who are also without a partner, it is that that we worry will be most glaringly absent; someone who cares about us rather than for us. Yes we will get fed, bathed and dressed but who will be there to actually care how we feel? To worry if we’re scared? or sad? or angry? or to celebrate with us if we’re happy?

The other main component shown was the importance of advocacy; Claire especially is shown as arguing with the hospital and care staff about her mother’s treatment and options e.g. when they are trying to discharge Mary home, Claire points out her confusion and inability to do things for herself. As the drama plays out, Jenny cannot manage Mary’s care at home and tries to find her a suitable nursing home. Eventually she finds one which is shown in stark contrast to the urine soaked one Mary is in briefly while Jenny’s home is adapted but of course it’s far more than the local authority who are funding Mary’s care will pay.

The owners mention Continuing Health Care; the sisters take on the care services in order to secure CHC funding for Mary which they get and Mary is able to go into the much nicer nursing home. Of course without anyone to advocate for her, Mary would have stayed in the first care home, the one where the manager tells Jenny they can’t cope because the owner won’t pay for more staff. People ageing without children are 25% more likely to go into a care home as their unpaid care networks made up of wider kin and friends tend to fall away as needs increase.

A contrast is also drawn between Jenny a single mum who is shown always with a home setting and Claire her sister who we learn is childless (we discover near the end her lack of children isn’t a choice) and is often shown at work or out having fun. Claire is portrayed as being unable to cope with her mum and leaving the vast majority of the care to Jenny. In reality, people without children are between 20-40% more likely to be the carers for their elderly parents  Childlessness and upward intergenerational support: cross-national evidence from 11 European countries https://www.cambridge.org/core/journals/ageing-and-society/article/childlessness-and-upward-intergenerational-support-crossnational-evidence-from-11-european-countries/56F1FF0ED1A2BD301430F8563AACAF6F and it was beyond disappointing to see childless women portrayed yet again in such a stereotypical way. The “tightrope generation”, those people caring for their parents but without the safety net of their own children really are the forgotten carers.

Overall, it was impossible to watch Care and not be left deeply worried and upset about the future for people who don’t have a Jenny or a Claire. Time and again they were shown as being able to give information that only they would know, information about Mary’s personality, interests and hobbies, how she was before the stroke, what kind of food would encourage her to eat, what things might cheer her up. Often they would offer physical comfort; a hug, stroking her hair hand, brushing her hair, something again paid for carers are unlikely to have time for or even be allowed to do. It showed how hard it is, how determined you have to be, how you have to care a huge amount of someone to be willing to go to the lengths they went to for their mother.

The care system is underfunded and unloved and hard enough if you have someone caring about and advocating for you. Without that, it is almost unimaginably difficult.

We have to do better; for people with family, for people without, for all of us. This cannot be the social care future we want.

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Support for those ageing without children Not all older people are grandparents, and this assumption can be detrimental.

Our guest blog for Independent Age

https://www.independentage.org/ageism-plus/ageism-plus-blog/news-media/support-for-those-ageing-without-children?utm_source=Social&utm_medium=Twitter&utm_campaign=Ageism%2B

World Alzheimer’s month – we need to stop putting people ageing without children in the “too difficult” box

It’s World Alzheimer’s’ Month and of all the many concerns people ageing without children have, what happens if they get Alzheimer’s or dementia is one of the biggest; It also asks one of the most poignant questions; ‘Who will remember who I was when I don’t remember?’

” If I get dementia, who is going to tell the carers I don’t like sprouts and hate ‘Eastenders’? No-one is going to know, are they? And I won’t be able to tell them.’

Each of us has our life story: the person we were, the person we are, the person we will be. Often these life stories are preserved in the people around us – family and friends. But if we don’t have a family, and our friends are getting older and dying, who will remain to tell our stories? For people ageing without children, the awareness that there will be no one to do that leads to an immense feeling of loss, and lack of legacy.

Wonderful work has been done in the field of dementia by people living with dementia and their children, with the children helping to tell the story of their parents, and ensuring that they are seen by NHS and social care staff as people with a life history. Despite the high profile campaigns around Alzheimers and dementia, how the needs of people ageing without children with Alzheimers or dementia should be addressed has barely featured. Certainly no mainstream conference on Alzehimer’s has addressed the issue to our knowledge despite people ageing without children already numbering over 1 million people over 65.

Initial conversations with organisations working in the field suggest that most contact with people with dementia is via carers and therefore that if someone does not have a carer, they are hard to reach and involve. We understand this but surely this suggests it is even more critical to proactively find people ageing without children or family who also have Alzheimer’s? We know for example that people with Alzheimer’s or dementia are more likely to be in a care home, we also know that people ageing without children are 25% more likely to be in a care home than those with children or family. Surely this must suggest a grave need to reach out to care homes and find those hit by the double whammy of having lost the ability to live independently because of Alzheimer’s and also having no children or family to monitor their care and advocate for them? The same also goes for hospital care; there have been numerous blogs published from sons and daughters highlighting poor examples of care in hospital for their parents when they have Alzheimer’s. It is safe to assume that that poor care is equally affecting those without children or family, the difference is that there is no one to see it happening and bring it to the attention of the public.

People  ageing with no children or family and with a diagnosis of Alzheimer’s or dementia must not be put in the “too difficult” box any longer. It’s time to act!

Our guest blog for Age UK – who cares for those without carers?

Who cares for those without carers?

What happens when the Carers are gone?

It is Carers Week, the time to highlight the work of the unpaid carers that prop up the health and social care system. Everywhere there are articles pointing out how much unpaid carers save the state and how much the system would collapse without them, which is 100% true. Without them services would implode under the weight of demand simply unable to cope with the sheer volume of people needing help.

Coincidentally, today the Guardian published an article based on a report from the Directors of Social Services saying that social care is on the brink of collapse https://www.theguardian.com/society/2018/jun/12/adult-social-care-services-collapse-survey-england-council There have been numerous news stories over the past few years arriving with increasing frequency and higher levels of alarm covering the problems facing social care; so far they have not made any appreciable difference in terms of any additional money on anything like the scale required being forth coming.

Here’s the thing; last year for the first time, the number of older people needing care outstripped the amount of family available to provide it. This “care gap” is only going to widen; 20% of people over 50 don’t have children, more single people are entering later life and 50% of all people over 75 live alone. At the moment the vast vast majority of unpaid care is supplied by family (92%) with the greatest % of that by partners and/or adult children. The older someone is, the more likely it is their carer is their adult child. Research shows that wider family networks such as siblings, nieces, nephews as well as friends do not substitute for a partner and/or child; the more care someone needs, the more likely those networks of wider family and friends are to fall away. Essentially, if someone needs help for a short period of time i.e. after hospital or only on an ad hoc basis e.g. the occasional lift to hospital, the wider network holds strong. However as soon as people start to need long term help and care or to need help and care multiple times a week, the network falls apart unable to cope. Bear in mind that nephews/nieces for example will have their own parents to think of while friends will often be in the same age bracket as the person needing help.

People ageing without children are more likely than those with family support to need paid social care. Ironically though they struggle to access it more as often they have no advocate to help them navigate the system.

It therefore cannot be overstated how much people ageing without children will suffer if social care continues to be destroyed. It is fantasy land nonsense based on an anachronistic view of society to expect as Government says repeatedly families to do more. By and large families already do an enormous amount most of which they wouldn’t even recognise as being vital, for people with no family at all or with family unable or unwilling to help it’s simply not an answer in any way shape or form. It is completely irresponsible to overlook older people without family support as is repeatedly the case in discussion on ageing.

As we celebrate carers week, remember that people ageing without children are 30% more likely to be carers for their own parents. Who will care for them when they need it is the biggest unaddressed question in social care and it cannot and must not go on being so

 

AWOC provides training to organisations to help them better understand and be equipped to help people ageing without children Contact us on ageingwithoutchuldren@gmail.com

We’re still here!

Dear AWOC members and supporters,

Looking back at 2017, one of the most remarkable thing for us is that AWOC is still here. We started the year with high hopes of receiving a grant from the Big Lottery Accelerating Ideas programme, a process we had begun back in the summer of 2016.

However, much to our disappointment, we fell at the last hurdle with our proposal not being recommended to panel for funding. Having ploughed all of our time and meagre resources into the bid, the organisation was left in an extremely precarious position and for a time we thought we would have to close.

However, thanks to emergency grants from Independent Age and the Calouste Gulbenkian Foundation we were able to keep the organisation afloat and look at sustainability options.

PRAMA Care https://www.pramacare.org.uk/ then came to our rescue with a grant to develop AWOC awareness in Poole Bournemouth and East Dorset. We are also looking at other funding sources and options. More on that in the New Year.

However, the people most responsible for keeping AWOC going are the people ageing without children themselves. When we feared we were going to close, it was knowing how much people ageing without children needed a voice and an organisation that understood and represented their particular issues that strengthened our resolve to carry on. We received many kind messages of support and donations from members which really gave us the heart to continue.

Even though it has been a difficult year, we have continued, as far as possible, to continue to campaign for and raise the profile of ageing without children.

Here are some highlights from a year which started as an annus horribilis and turned into something of an annus mirabilis:

  • We had an article in The Guardian at the beginning of the year:

https://www.theguardian.com/social-care-network/2017/jan/31/ministers-social-care-ideas-ignore-the-million-childless-over-65s

  • We were interviewed by BBC Radio York;
  • Our Facebook https://www.facebook.com/groups/1476937045912974/?fref=nf group grew to over 1300 members and one of our key priorities for 2018 is to establish a new secure online forum for AWOC;
  • We spoke at two conferences on issues around planning for care needs;
  • We were quoted at length in Independent Age’s Doing Care Differently report https://www.independentage.org/policy-and-research/research-reports/doing-care-differently
  • Sue Lister, who runs the AWOC group in York, organised a session on ageing without children as part of the York over 50s festival with Rachel Maskell MP, the Lord Mayor of York, local councillors, Dr Robin Hadley and AWOC all speaking. Sue, who was awarded an OBE this year, has also written a play on ageing without children which will be performed as part of International woman’s week in March;
  • The AWOC group in Leeds organised two seminars, one on legal issues with Blacks Solicitors and one on housing options with Care & Repair, Methodist Homes, and Leeds City Council Home share scheme;
  • In Brighton, there were talks on Financial Planning from McClure solicitors, Planning Health and Welfare LPAs from Compassion in Dying as well as social get-togethers;
  • There were also AWOC get togethers in Norwich, Oxford and Ireland.

Our plans for 2018 include:

  • A national conference
  • The production of a toolkit on how to create ageing without children awareness in organisations and communities;
  • Resources for people wanting to set up AWOC groups;
  • Development of a membership model; and
  • A new online secure platform for AWOC members.

We would like to wish everyone a very Happy Christmas and a peaceful 2018. We look forward to seeing you all again in the New Year

 

Why Ageing without children is different

Guest blog by Joy Anderson, member of AWOC facebook group
Untitled
Care and my own destiny was not something I thought about that much before the birth of AWOC although I had been acutely aware that not having children meant society and my family treated me differently. What I have learned from this group is that regardless of how we arrived at being childless, whether it was a life choice or an unfortunate set of circumstances, and regardless of sexual orientation, ethnicity or religion, we all have one thing in common that unites us and that is for many of us growing old without children or a partner can bring us face to face with our own vulnerability.
All this became apparent to me as I took on the role of primary carer for my mum who has been disabled since her mid 40s due to an unfortunate surgery where her sciatic nerve was partially removed leaving her with limited mobility. Whether this was negligence or not, the family could not bear to pursue it, but we have all been impacted upon by her disability and more so as she’s got older as her disability has greatly impacted on her general health.
4 years ago I decided to give up my business, my home, my friends, a relationship, my hobbies and my London life to move to a small town in the country to support her. She needed to stay in her bungalow as it was the most ideal living situation and I decided as the single, childless person in the family I was in reality the only one who was in a position to do so.
It was a difficult decision and the life I chose has not been an easy ride but one I will never regret because I feel I have given my mum the best life she could have had under the circumstances. We have had some stormy times and some amazing times. She started flying lessons this year through Aerobility who teach disabled people how to fly and this has been really exciting for both of us.
When I first moved in she didn’t like it and was pretty hostile at first. There was a lot of resistance and mum was in denial that she needed the support. She saw my presence as a threat to her freedom and it took a while for us to work out how to figure it out.
This is so often the case and a son or daughter is probably the only person who can quietly take control whilst letting the parent feel like they are still in control. I think one of the myths about care is it’s easy to go into denial if the person is sound of mind and can do all their personal care. The illusion is they can cope and don’t need help. Perhaps it can take a long time before the reality hits home that someone isn’t coping.
This is true of the person who needs care as well as the relatives. My mum can beat the computer at scrabble, she can read the Independent from front to back and she can still hold an intellectual conversation. If she was sitting in a chair talking to you, you wouldn’t realise she needed any care at all, and sadly, if she went into care she would probably die from lack of stimulation, claustrophobia and would ultimately lose the will to live. For someone who isn’t ready for a care home and yet cannot look after themselves, there seems to be little available for them and I think this is the gap that children invisibly fill in.
It’s complicated caring for your mum but I find it’s not one role; you have to wear many hats and take on many different kinds of responsibilities.Housekeeper, cook, cleaner, gardener, admin, liaise with doctors, nurses, physiotherapists, occupational therapists, social workers, lifts to hospitals, dentists, doctors etc. Admin, manage household bills, repairs, paperwork, call centres, support with social life, friend and confidant and last of all be a daughter.
These are but a few tasks I take on as well as the regular day to day care. Most of this is invisible but if I wasn’t doing this kind of support, I know my mum would not cope on her own at home.
Another problem, rarely acknowledged, is the virtual and digital world. Online banking, shopping and paying bills are getting increasingly more inaccessible. Due to the number of steps you have to take for each transaction, it’s just too complicated and this has disempowered many elderly people. In years gone by people were able to do these things themselves but this generation have been caught between 2 worlds and suddenly what they could manage easily has all changed. This is particularly the case for my mum, and although she did learn to use a computer, getting through security on the phone and online just creates confusion and frustration and she gets lost in the process.
What is equally shocking is there has been no provision made, no thought as to the impact of banks closing and how this will impact on the elderly. This is another area where people rely heavily on their children and grandchildren. Even the queen with a support network better than most has to rely on Harry to help her with her mobile phone!
Going into care is not a solution either. Recently my mum went away for 2 weeks respite while I had a walk-in bath installed. Due to no fault of the home, she only had one bath in 2 weeks. There were no staff available to take her for a shower, plus the showers were out of action. Had I not put pressure on the home to give her a bath, it wouldn’t have happened. She was still luckier than most, she had several visits and days out with family members which was more than some of the residents had had in years. My sister facilitated a TV for her in her bedroom and I managed to get the home to get her a chair to elevate her legs to prevent her ankles from getting swollen. None of this would have happened had we not pushed for it, so the people that don’t have children to do this are likely to get forgotten about. Most of the residents had dementia which made her feel desperately lonely and sad. It also brought it home to her that this is how it would be if I wasn’t living with her and it made her feel anxious and vulnerable.
It is little wonder that carers without children are now getting anxious about who will look after them then their time comes? One in four people are childless and many of them have already spent the best part of their midlife caring for a parent. Some of the comments I read on the AWOC thread recently were people saying they were considering voluntary euthanasia rather than go into care because the fear of having no one to fight their corner was too depressing. This is a line of thinking now that is becoming more popular which begs me to ask does this group of childless people not deserve better? If you don’t have children does that mean you don’t matter, and is there a time coming when we will we be asked what age we wish to terminate our lives because there aren’t the resources to care for us? It might sound like something from ‘Brave New World’, but it’s a dialogue people are already having.
This has filled me with sadness. Young people and elderly people need each other. We should not be segregating our communities but instead should be brainstorming and lobbying the government to start supporting integrated alternative communities where people can be intrinsic in planning their own old age in a dignified and creative way. Surely if we create our own ‘think tank’ and brainstorm with imagination and vision we should be able to create some exciting solutions which will work for a whole range of people regardless of whether they have children or not. I see that as the beginning process.
There are of course no guarantees that having children will bring support in old age. Families can become estranged or separated for many reasons and the AWOC umbrella includes these groups as well.
As President Barack Obama recently said during his speech at the Obama Foundation in Delhi, first you have to find your voice, then share your stories so your voice gets louder and then when you have a vision of what could be, lobby the government and create pressure groups to bring about political change.
Thanks to Kirsty Woodard the AWOC has brought all these childless people across the globe together, here we are finding our voices and now this process has already begun.