Gaye, Linda and Tina

Gaye, Linda, Tina and household are featured on BBC1 South’s Inside Out programme today (Monday 11th) 7.30pm. There is an excerpt here: http://www.bbc.co.uk/news/av/uk-england-hampshire-41212172/portsmouth-woman-shares-home-with-people-she-cares-for

Plenty of life, love and laughter: enjoy!

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Merry Christmas!

I’m very grateful for this great guest blog from Sarah.

Sarah, who lives in Yorkshire, is a poet,a spoken word entertainer, inspirational speaker and drama-based trainer in the (sometimes tricky) subject of Dementia. She is also a qualified life coach but prefers the term “useful chat” to “coaching”. She cares for her own disabled son full time, is a Grandma to three (soon to be four) rowdy children, is addicted to Coronation Street and is totally dependent on a well maintained diary and her never ending To Do list.

Sarah lives in Yorkshire and has been providing short breaks through Shared Lives for a year. She knows what a fantastic service this can be because her own son has used Shared Lives for his own short breaks in the past. Sarah writes:

Christmas seems to be a bit like a popular yeast extract spread; loved or loathed.

Just mention the C word to anyone and it’s almost guaranteed to receive one of two responses. Either “Oh it’s too early”, “can’t afford it”, “hate bloody Christmas” and other negative (almost visceral) reactions or the opposite response of the starry eyed, wistful “Oh I LOVE Christmas”, “I can’t wait”, “such a wonderful time of year”.

However we feel about it, we will navigate life a lot more easily when we accept that others opinions do not always match our own.

I have had to learn to love Christmas, my son loves it so life is easier if I do too. When I say he loves it, I mean he REALLY loves it. He has a Santa duvet cover, He has snowmen in his bedroom, he listens to Christmas music on repeat twenty four hours a day, we keep a countdown to Christmas poster in the kitchen. You may be thrilled (or horrified) to know that we have a mere one hundred and thirty sleeps to wait until we can open our presents and set fire to that pudding.

One of our Shared lives links was a match made in heaven for us. We have a Shared Lives visitor who loves Christmas. He brought his own festive bedding with him (there was no need we had plenty!). He plays Santa Claus is coming to town on repeat (genuinely not annoying where the entire family has become completely immune to living in a Bing Crosby background noise environment).

On one particular visit he took it upon himself to take all the decorations out of their storage and put them up. It was June. We had a tree up. He did a sterling job too: Every bauble, fairy light, Christmas wind up musical item, bunting, holly, mistletoe, ornaments. all displayed with expert care, ready to surprise me with.

Deciding to adopt a “if you can’t beat them- join them” attitude, I joined in and so did my son. We all donned a Santa hat and got stuck in, tweaking the lights, adding the tinsel, singing carols, talking about what we hoped Christmas would bring us all this year. We talked and listened and laughed and at one point I sat back and just stopped to enjoy the moment, to commit it to memory, to drink in the fun and the pure joy. I am not embarrassed to admit feeling a little emotional- I suppose Christmas is a nostalgic time of year.

Neither of these young men were glued to their iPads, neither was sitting in their head phones drowning out human communication, they were both engaged, connected, happy and relaxed.

Later that night I was trying to navigate the darkness of my bedroom as my early-rising husband had gone to sleep ages before me. As I fumbled around the end of the bed trying to locate my Pyjamas, I felt something unfamiliar. made of fabric, with beads/ buttons on. I managed to find the torch on my mobile- there in the beam I see that our guest had really had done a thorough job: it was a Christmas stocking hanging on the end of my bed.

This is just one of the many aspects I love about Shared Lives. We have the freedom to connect with people in a way which truly makes sense to them, on this occasion, it made sense to us too. Our customers have the freedom to not only be at the heart of what we do but to actually lead the way we do it.

I have often heard Shared Lives carers talk about how much they learn through their roles and I second that with a great big “YAY” as I raise my glass of sherry and ( whether you love it or loathe it) wish you all a very merry Christmas.

The shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading

Sceptical Trust

This blog first appeared in New Local Government  Network:

I know someone who’s renowned for his scepticism. The only problem is, he’s now so sceptical that he doesn’t feel able to trust anything. People who post videos on YouTube seem to have as much, or little, credibility as professional journalists. After all, journalists can succumb to group think. And who’s paying them, anyway?

The results of blanket scepticism look surprisingly similar to the results of blanket credulity. But in a corruptible world, where fake news looks ever more real and we are weary of being let down, how can we trust each other? Why should we?

I work with people who are temperamentally inclined to trust other people. They open up their own homes and lives to people who they have not known for very long. And sometimes it doesn’t work and they cope with this, but I hear constantly that living this way makes them happy. They are realistic about the people they live with, but often able to see and value them in ways that others cannot. Those who are considered vulnerable – the very young and the old – could be most at risk from this openness, but they are also those who appear to benefit most.

For instance, Homeshare organisations help older people to take an unusual risk: to let someone they have only recently met into their homes. There are police checks, references, interviews, but the core of the model is about helping two people establish trust. Recently I was also talking to two young women whose parents were Shared Lives carers. They had valued the experience so much that both were now involved in Shared Lives as adults, contributing untold amounts to those around them and their communities. If Shared Lives or Homeshare arrangements don’t work out, the local organisation steps in to help, but there is always an element of risk.

The risks of trusting no one, however, are stark. When we start to avoid the risk of trusting others, it can give us a short term sense of safety, but everything we value is corroded. Loneliness not only crushes happiness; it is in the same bracket of health risk as smoking. It is now endemic amongst older people, and even the best health or care service can’t fix it.

I also spend quite a bit of my time with a group of people who generally come quite low down on people’s trust list: politicians. My experience of them is that, whilst I often disagree with them on lots of things and sometimes feel we have very different life experiences and world views, they are generally people who believe they are helping other people. They work ridiculous hours and a lot of what they do is not at all glamorous, but is absolutely necessary in a democracy. They are as flawed as the rest of us, but based on having met quite a few, I am inclined to approach them with an attitude of sceptical trust, because without it we have no democracy worth the name. And of course, because I hope they will approach me and others who work for charities with something like the same attitude.

This seems a strange time to be suggesting that we all trust each other – whether we are Shared Lives carers or politicians – more. As 2017 picks up where 2016 left off, I am not completely confident that I will be able to practice what I preach on this, all of the time. But if you’re willing to try to approach me with something like sceptical trust, most of the time, I will do the same for you.

It is, I think, from small acts of trust that functioning communities, organisations and even nations are built.

The highlight of my week

This guest blog is a story from Derby Shared Lives scheme about how a team of Shared Lives carers can work with an individual who needs particularly complex support to live well. Thanks to Derby and my colleague Hannah for her input:

Rose loves horse-riding, swimming, going for a coffee and socialising. Going to church has been a big feature in her life.

Rose spent over 20 years living in a residential placement and has a complex and profound learning disability, very limited verbal communication and is in some ways a very vulnerable young woman. Historically, Rose was labelled ‘challenging’. It was clear she needed several Shared Lives carers for different support needs.

Rose now lives with Maxine, and has support from four other Shared Lives carers who provide day support and overnight breaks for Maxine, who is a Shared Lives carer is Derby.

It was the smile that won Maxine over. Introductions continued for around 6 months, an afternoon, a full day, and then two days a week. These were maintained when Rose went from hospital to a respite provider- it was too soon to attempt a move straight to Maxine’s. Rose eventually had an overnight at Maxine’s and this went really well. Training and countless meetings for the Shared Lives carers, including Rose’s mum and family, were arranged and everything went very well. For several months now, Rose has had possibly the most settled and community-based support of her life. At present, they have a great connection and understanding of one another, and Rose is now able to share her everyday life and activities with Maxine which was unimaginable two years ago.

Heather is one of the Shared Lives carers who supports Rose in the day. She says, “My friend is a child minder and she lives over the road. When Rose comes on a Tuesday and Friday, Susan always pops over for an hour and Rose loves to spend time with the children… Rose absolutely loves children…”

Another Shared Lives carer, Julie, says: “It’s the highlight of my week. I really look forward to Rose coming here. I just get so much from it, so much in return.”

Monica takes Rose horse-riding and this is her favourite time of her week. Monica also supports a gentleman long term. He and Rose have made a really valuable and genuine friendship. “They both love spending time together. It’s simply two people who have really clicked and enjoy each other’s company.”

Maxine has included Rose in all aspects of her household and truly shared her life: “My mum loves coming round and seeing Rose… Rose has made a big impact on the others at Church and is warmly welcomed each week and included in everything… Rose brings a richness to my life, has a real sense of humour and real character…”

Rose has now been at Maxine’s for almost one year. There have been ‘incidents’ and challenges, but everyone involved in Rose’s life agrees that this has been a real success. Rose is leading a ‘normal’ life in her community, with people in her life who care and take an active interest in her life, expand, develop and create fresh experience and opportunities. Rose’s social circle has grown significantly and will continue to do so.

Some arrangements can be challenging but not impossible. Shared Lives Worker, Dean Davis and Ordinary Lives Team Social Worker, Naomi Fearon, have worked very hard  ‘thinking outside the box’ to make this arrangement work for Rose so successfully.