Love

Happy Valentine's Day♥♥♥

Image by mysza831 via Flickr

One of the main themes of a lot of the work I do is around carer support. Carers Assessments, of course, but increasingly individual budgets for carers which on my own caseload at least, have shot up over the last year.

I was having this discussion with a colleague in another team about the difference emphasis that we have on some of our work, in a specialist mental health team for older adults – as opposed to the CMHT for adults of working age that she works in.

My impression is apart from the more obvious  emphasis on issues of capacity and the interdependence between deteriorating physical health and deteriorating mental health – we also provide a lot more carer support – as the client group that we work with may need more obvious care and support.

So I see a lot of carers. And I see a lot of love.

I suppose in some ways, you could say I see the manifestation of the promises made in youthful, happier times,  to stick together ‘in sickness and in health’.

It makes me reflect on the nature of love and the nature of devotion. Often I am in awe and admiration. I wonder if I could do what the people I see do. I expect it is something that we don’t and won’t know until circumstance forces us into this position.

Some of the more difficult situations to walk into happen when a deterioration in cognitive functioning leads to a husband forgetting his wife or, perhaps more painful, being violently aggressive (either physically or verbally) towards a partner he would once have put beyond anything else in the world. The change in behaviour coming from the ravaging force of a dementia can be heart-breaking to say the very least.

I know the words to say.

‘Blame the disease not the person’. It is what we say to ourselves when we are at the mercy of violently aggressive anger, hatred and scorn.

It isn’t John talking – it’s John’s illness talking.

Of course that only helps to a point because the words are still coming from John’s mouth, with John’s accent. They are directed towards his wife, who is sitting next to help, gently sobbing, while trying to pacify and ease some of the venomous words.

It isn’t John – it’s John’s illness talking.

Sometimes it feels so shallow.

Last week, I was involved with a family whose current situation was tragic in the first order. I won’t recount the details so you will just have to trust me on this. I was speaking to one of the daughters. She explained to me the situation whereby both of her parents were very unwell in very different ways. Both had to be admitted to hospital.

I said to her that I was sorry for what was happening to her and her family. I couldn’t pretend to understand how it felt for her and her brothers and sisters to be in that situation but I was sorry, all the same.

It seemed so shallow just saying the words. So empty. I haven’t been faced with those levels of tragedy in my life and can’t imagine how it would feel so in that sense it was definitely authentic.

She cried. I listened. Later, I met her brother. Her brother cried. He tried not to. He is a young man. I suspect he was not used to crying. I said I could understand his tears.  I could.

I see a lot of love in my line of work. Often it is veiled with tragedy. Tragedy of deteriorating health or forgotten moments, even forgotten names.

It has given me a different and much deeper understanding of the nature of love within a family and the nature of relationships that we forge and build through our lives and what happens when the health we presume will always be there, begins to fail.

In sickness and in health. I suppose most people think about physical sickness. Sickness is temporary, we recover. Some types of mental illness, progressive dementias, that isn’t so easy to recover from. Sometimes the scars left take much longer to heal. Recovery is always a goal but it is about recovering relationships as well as health.

The human spirit is a remarkable thing. Love is a remarkable thing and so are the ties that bind all sorts of different kinds of families together.

Love doesn’t have to be obvious. It isn’t always explicitly stated and sometimes it is the more subtle elements that remain stronger.

I’m not a great fan of St Valentine’s Day. I find it too cloying and commercialised. My partner and I haven’t bought each other presents or cards. We might have the first couple of years we were together but it has just tailed off a bit as we both realised it was about matching the expectations of others about ‘celebrating St Valentine’s Day’ rather than any expectations we had of each other. I think we are going to get a takeaway tonight to eat at home in front of the television.

Outward displays of ostentatious love have little bearing on the internal nature of the quality of the Platonic Form of Love. They are just shadows and presentations.

Love is about what families do for each other. It is not measured in cards, flowers and chocolates and if we, as a society want to value love, we need to value carers. We need to value love.

One day, it will be all of us.

My message for St Valentine’s Day? Look around you. Look around at the people you love and the people who love you. Not just partners, but family, friends, neighbours, pets.  Appreciate it and appreciate them.

But then, that isn’t just a message for February 14th, that’s a message for every day.

Reunited

Last week, I visited a nursing home  – one of the few in the borough and one I had not been to for a while. I was trying to iron through some local difficulties however when I was there, chatting to the staff about the situation, I turned around and saw someone I’d recognised and I knew I recognised  but couldn’t quite place at first.

[picapp align=”none” wrap=”false” link=”term=care+home&iid=7473381″ src=”1/d/3/e/Subsidized_LongTerm_Care_997c.jpg?adImageId=8956929&imageId=7473381″ width=”234″ height=”156″ /]

She obviously recognised me too and we played that game where you see who mentioned whose name first to try and place each other (she won – but then, I had phoned to say I was visiting so she’d had some pre-warning!).

I last saw her about 4 years ago. She had been working in a different residential home in the borough and we had worked together when I had been conducting a safeguarding investigation involving two residents in that home. It had been a long process and had involved a lot of joint working. It was one of the more difficult situations where one resident was involved in the abuse of another resident (which actually, is a topic I should come back to because it probably is less uncommon that most people imagine).

At that time she had been stressed. Pushed this way and that way, it had culminated in an late afternoon visit from me to find out what was being done and her bursting into tears. Eventually about two hours later – and after telling me of the extreme situations her management were putting her in – which frankly was plain and simple bullying – we parted ways with a partial resolution. I can’t say I was a great help, except for being a sympathetic ear and being physically there at the time that she had been just about pushed over the ‘edge’ . Iexplained that there are some things that are more important than our jobs and when you are arriving at work and bursting into tears, you can’t really be in a ‘good place’.  But from that experience, I knew she had a good work ethic and a caring approach – a part of the conflict with management was due to the time she wanted to spend with residents and things she wanted to change that she had seen weren’t working in their favour.

So when all this clicked into place, we chatted about that time. She looked so much better and she looked so much younger than she had four years ago. She was enthusiastic about her work and about her manager which to be honest, confirmed my own impressions of the staff team. A happy home is a happy staff team.

I was comforted by the meeting and comforted by my confidence in the placement as a direct result.

Caring with Confidence

I was pointed in the direction of  the link of Caring with Confidence directly by some of those responsible for its implementation – not having been aware of its existence – but having checked it out briefly (to ensure authenticity – because often I am pointed in the direction of people paid stuff or other dodgy businesses!) I’m more than happy to share the link!

It is a free programme sponsored by the government as part of the Carer’s Strategy  to provide support, information and particularly access to training to informal carers over 18  across England. Having looked at the site, I think it seems to be a positive step and definitely a resource that I would add to my ‘toolkit’ and follows on in the footsteps of the Expert Carers Programme. I haven’t had any experience of people I personally know following the Expert Carers Programme but from those that I personally know who have followed the Expert Patient’s Programme, the feedback has been enormously positive so on that basis I’d think it can be no bad thing.

It seems to be a very flexible approach to providing the information that is all too often ‘out there’ but has, sometimes, needed to be sifted through and they are offering online courses as well as face-to-face group sessions and workbooks to help carers access a full and substantial training programme to ensure that their needs are met or at least, an awareness of where the needs haven’t been met or that entitlements have not been offered.

I’m almost ashamed to say I had never come across this before – especially as in our team, we do a massive amount of work with carers and anything that will be able to add support to the structures that all too often don’t do enough.

I have been a little rushed over the past couple of weeks but I hope that over the next few weeks, I might have more opportunity to investigate the material but as it’s freely accessible, I’d also welcome any feedback from anyone who does so..

As far as I’m concerned, the more free and accessible resources available, the better!

Changes

The Guardian are publishing a supplement on both recent and proposed changes within the social care sector to coincide with the opening of the National Children’s and Adult Services Conference in Liverpool.

Not having seen a printed copy of the paper yet today, I’m not sure if the website offers all that is there.

image gwire at flickr

But a few thoughts on some of the articles.

There is an article about the rejoining of adult and children services directorates in some areas of the country after a recent pushing of the splitting apart of the service provision. Children’s Services tending to link up with Education Services.

My favourite quotation from the article is

Andrew Ireland, at Havering in east London, said: “There is no excuse for people not talking to each other if they’re all part of the same directorate.”

This made me chuckle because our own Adult Services Directorate joined with the Housing Directorate, under a Director whose experience lies wholly in Housing Services. No excuse for people not to talk to each other, Mr Ireland? Oh, you should see how well Housing and Adult Services are bedding down together in my own council..

There is also an article looking back at the development of the independent living agenda through the experiences of John Evans, who was at the forefront of the process.

Evans makes a strong case although with some reservations

Evans is concerned that the personalisation drive has come at a downpoint in the economic cycle and, now, amid a spectacular banking crash. “The philosophy of the government is wonderful,” he says, “But with local authorities going to be so tightly restricted financially, unless more money does come somehow, it’s just not clear how it’s all going to go forward.”

Credit crunching is all-pervasive, it seems. Although to be honest, I suspect there was never really any ‘extra’ money available to fund the personalisation agenda and it was always intended to be a cost-neutral, if not cost-cutting programme.

Meanwhile, the role of informal carers is considered and the lack of recognition formally regarding the level of care that is being provided without any recompense.

As things stand, there is a paradox at the heart of our apparently “carer-blind” system: the more care you provide as a family, the less support you are likely to receive. And this appears to give the Treasury a win that’s best left well alone. Why provide expensive replacement care when a family could be doing it for free?

…By thinking about individuals, rather than whole families, we squander the country’s largest full-time care workforce.

So a system of direct payment for families to account for the work that is being provided informally? It’s an idea. The article goes on to elaborate on how it might look

But should we be thinking about going still further? With the social care budget deficit standing officially at £6bn, and rising, will we need to accept changes that move us towards the systems in France and Germany, where families are placed under legal obligations to care for, or pay for the care of, their elderly parents?

Well, it would be one way of providing services at a cost. Families are different though and one persons’ joy is another persons’ burden. While I think the system of carers allowance is nothing more than an embarrassment, our culture is not one that has encouraged mandatory support of elder relatives – in the same way that families are expected to care for dependent children, mandating that families care for dependent older adults might create a chasm of expectations.

It’s an interesting thought though. Isn’t it?

There are a few more articles over at the Guardian that provide some interesting perspectives. I may explore further after I actually leave the house and get a print version!

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Direct Payments – Chapter One

Direct Payments is the system of, basically, rather than giving a direct service, providing money to the user of the service to ‘buy’ the care that they need directly.

‘Direct Payments were introduced in the UK

– for adults with a disability in 1997

– for older people in 2000

– for carers, parents of disabled children and for 16 and 17 year olds in 2001

Since 2003, councils have been required to make Direct Payments available to those who are able to choose to have them and who wish to have them’

(Source : Direct Payments for people with mental health problems: A guide to action)

I have worked with Direct Payments a few times although it isn’t something that comes up with any great regularity in the field that I am currently working in – mostly because, I imagine, my work is focused on a combination for the two groups of service users who have found the system of direct payments least accessible – older people and people with mental illnesses.

So working in a team for older people with mental health problems seems to be possibly the least likely place for direct payments to be accessed.

I have instigated a few direct payments packages but not a many. One of the things that I have found the most frustrating is the time-lag between going in to someone and identifying a support need – offering and explaining direct payments alongside an explanation of the direct provision of services.

On meeting potential interest, the boxes get ticked but in the meantime the service is needed immediately – it can and  has taken months to get a direct payment service up and running but in the meantime a direct service is needed to meet the need that still exists – sometimes a carer is employed in the meantime with whom the patient gets on very well – seeing no need to change to direct payments after a few months of building up a relationship.

Sometimes the  delay between setting up a ‘new’ system leads to a complacency to fall back to the ‘default’ system.

But sometimes, occasionally, it has followed through.

I have two reasons for bringing this up at the moment

Firstly, I am starting the process of referring someone for direct payments and her daughter for carers direct payments.

I thought it would be a useful illustration of the time it between someone deciding they need a service to its eventual ‘fruition’ if I can follow it here by indicating the different points in the process as they arise.

I hope I will be proved wrong and that we can get things up and running quickly. I really do.

Bit of brief background, service user and potential user of direct payments has an Alzheimer’s type dementia. She has had this diagnosis for a couple of years and can function fairly well. On meeting her, you probably wouldn’t realise she has dementia until you’ve been talking to her for at least about half an hour when some of the conversation begins to repeat itself. She would certainly have the capacity at present to make decisions about her own care and support packages.

She has been receiving a directly provided care package for a while but some of the elements have proved to be less than satisfactory. She doesn’t enjoy the day services on offer and would probably get more from community activities such as tai chi classes at the local leisure centre. One of the ideas of the direct payments is to look at someone to take her to these kinds of activities rather than her going to the local community day centre.

Image via Wikipedia

Outdoor practice in Beijing's Temple of Heaven.

Her daughter is her main carer and lives locally but not walking distance. Her daughter has a young family and provides a substantial amount of emotional support to her mother, visiting most days and taking her mother to stay with her family many weekends.

I’m hoping that Carers Direct Payments will be able to address some of her needs regarding travel costs between the two houses and possibly some of the domestic care.

It’s been a while since I referred a Direct Payment care package so I called the Direct Payment lead (who I get on well with anyway and always find it easy to talk to) to confirm the procedure to refer.

I sent her an initial care schedule with costings and times attached.

Meanwhile, on the ‘Carer’s’ front, I need still (and hope to today) update the most recent Carers Assessment and Carers Care Plan to include the conversation I had with daughter to include Direct Payments for Carers as an outcome.

Anyway, lets see together how long it takes to get these things up and running..