The Art of Caring- how does it feel?

People say that having been a patient makes you a better nurse. They say you can tell the difference between a midwife who has had a baby and those that haven't  ....the one who's had one doesn't say "this might hurt a bit".

As I get more older and more experienced witnessing and experiencing the other side of caring and being cared for, I try harder than ever to listen and hear my patients voices and for those that have no voice their carers.

Having experienced my mother going into Hospital for three weeks this month, I was saddened as well as relieved by the care she received. A mixture of emotions, but one things for sure since my days in an acute setting, things have certainly changed. Over the years I've done my best to avoid my mother having to undergo admissions , speaking to the ambulance service , making sure my mums advanced directive is prominent and striving to keep her at home with the man who loves her, cares for her and ultimately has sacrificed his own self for her.

Home just over a week, she's a changed woman and not for the better! My Dad was so pleased when they said she was coming home, I could hear the happiness in his voice and sitting here now holding her hand whilst I type and listening to her rumblings and gasps of confusion---- despite the negative changes ,this is where she belongs. As clinicians we can fall into the trap of thinking we know best and not seeing the whole person. I like to think and hope that being a guest in someone else's house negates this and that with the right care, home is  where people should be.

Mum now has carers 4 times a day, a DN for the grade 3 pressure ulcer acquired in Hospital and a Hospital bed. My back is aching getting her up and down and assisting her to walk with a simmer frame to the  Buxton Chair where she stays all day. She is I’m afraid nearly lost to us, being confused and anxious most of the time now. My father is now absolutely housebound too ....dependent on others to release him but at least he has accepted some help and recognises that he simply can't manage on his own.

Perhaps the nest way of describing the impact we have on others is to listen to those others and so here are snippets of my fathers words

- I use the time the sitters are here once a week to have a bath. I can spend a whole hour by myself, it's a great source of pleasure.

- See, you can tell the difference between the older ones and the young ones (carers). They all do the same, but the older more experienced ladies talk to her, they spend a while and they treat us with kindness. They know that there’s a real person hidden in the woman they see.

-the older ladies walk her to the bathroom when she's good and not wash her on the commode or on the bed. They know she can do it and she's so pleased.

- I know people think I'm obsessed about getting my paper everyday. It has become a lifeline to me to be able to do the crossword. It keeps my brain active and gives me something to look forward to everyday.

 So once again the importance of keeping the right people at home for as long as possible is the way forward. It's tough , it's tiring and at  times downright depressing, but it's also their right, their wishes and in a lot of cases their purpose. It should be easier to do this....... It's certainly cheaper for the system! As an election looms, as a family carer I'm fascinated to see how my Fathers payment for my mother has doubled overnight with absolutely no changes to their circumstances, making him reluctant to accept the help. It's a disgrace and a travesty when people who have had only one admission throughout their journey of co morbidities and ill health  struggle so much to receive care.

I am in a position to help this and use my scholarship to consider different and new ways to bridge the gap. My experience of my mothers care is that the amount of time you give doesn’t really matter- its what you do in that time that matters. Its how much of yourself you’re willing to give others that makes the difference between being visited and being cared for.

I,VE LOST HER

I.VE LOST HER

The last two weeks have been a personal journey of heartache and challenge. After 54 years of marriage my parents are spending their second ever occasion apart. My mother was admitted to hospital a week ago and I visited to support my father in the MDT meeting.
One day last week he said "I,ve lost her" and he didn't mean she was dying, but that the last element of recognition and "finding herself through the fog " had gone. This is the hardest of all. Is this the time to look at a nursing home?
Well no, we are looking at a package of care of home , day centre and him continuing to love and care for her. A few days without her was a relief, he could sleep at night, eat what and when he wanted and find himself too. But a week on, he is a lost soul and almost pacing without her here. He has become a full time carer and the man he was is ,I hope only temporarily ,gone- lost within this role which could go on for years. We try to encourage him to take the help and to find things of interest for himself, but this is easier said than done, when someone else has been your life for 63 years. What we can do is be here, listen and hear and relieve the pressure.

Looking at my parents existence as a FN Scholar reiterates for me the fact that behind every person with dementia is a real person- someone who has achieved things in their life , full of interest and dynamism . We may not see that very often or at all, but that is who they are and they deserve the dignity and respect of lifelong heroes. Because each and every one of them is a hero to someone.

I had a teleconference this week with one patch of my work around possible investments in dementia which I could embrace and lead as a FN Scholar. I hope that my drive and belief in self management and preventing unnecessary  admissions to Hospital will yield results. We discussed how to support people and their carers to remain at home, how to prepare yourself for three to six months ahead and what to do if the "what if" happens. People with learning disabilities have fantastic shared care plans ......we could adapt and enhance these for example.

It's interesting that whilst most people know about my mum, I lead and manage this project as I do every project and lead area I have. I'm as enthusiastic and committed to every element of my role as Director and vehemently believe that all of our services should strive to walk in the shoes of others and lead by example. And this is what  I see every day.

We will have two new projects or pieces of investment in dementia care soon and I am excited to see what they are, but we could do so much more to meet those unmet needs. This requires a partnership approach and I think we,re on the way to achieving this so I am excited. My scholarship has focussed on raising the profile of dementia, looking at new services and me taking on areas outside if my comfort zone. So far so good - I'm well on my way to achieving this.  And the contacts I've made via twitter have yielded exciting results. The first chapter of my personal journey has laid the foundations, now I need to start to design the building!

Get well mum - you,ll be home again soon

Leading change

It's been a busy month and one for reflection and learning. The recent course – Leading Change and Organizational Renewal programme – as part of the Florence Nightingale Course gave me the following insights on the congruence model

1-Great stuff is going on in the UK as well as abroad- we need to celebrate our own success

2- Good leadership feeds the soul

3- The importance of conversation and discourse

4- RCA - why we ask why- to find a solution

5- What fantastic colleagues are on the course. My fellow scholars are all different, from different backgrounds, each with a unique project and unique skills to bring? It truly was marvellous to be surrounded by people with ambitious intent and willingness to learn. The three days left me feeling reinvigorated and enthusiastic for change.

One of my esteemed colleagues challenged me about using the words  "those we serve". But I do believe I am working to improve the lives of those we serve in the NHS. The public pay our wages after all and everything we have and do is paid from you and I. Serving to me doesn't serve up images of hand maidens but a moral responsibility to walk in shoes of the others - always striving to imagine how we would feel in the same position. So on this occasion I won’t change my intent but welcomed the challenge.

There is no doubt in my mind that it's tough out there- I'm out there too, with all the financial constraints and constant pressures. But there are also opportunities and visionary ideas that can improve care and cost less.

I used one of the tools I learnt on the FN course to map out my idea for the bid for those affected by dementia so it wasn't just words. Of course and not unexpectedly, my initial bid needs more work and I hoped that but using a different methodology it would make more sense. Telling a story of how change can have a positive impact on the lives of others will I hope make more sense. This week, I shall work on mapping out the priority and quality of conversation - also learnt on the course and plan the next few months. I’m looking forward to hearing from commissioners if my use of root cause analysis might complement the mind mapping   and create a story they understand as well as the factual data and analysis required in order to fund.

 The OCR course was heavy but I felt enlightened and full of energy when I had to return to a hectic Friday and an equally hectic week last week. Somehow sharing others frustrations and exhaustion as well as their joys and inspiration fills me with hope. I know I'm always positive but I can fall equally hard too. Whilst it doesn't happen very often, I too, can feel low and despondent. At the moment I feel excited and energised about the possibilities I have not only for me, but also for my patients.

My challenge is how to use the conversations I want to have to not only recognise the triangles emerging but to emerge others into the vision I have. Recognising others behaviours and discourse can support meaningful conversations and enrol the team into the vision.

Dementia care - I wrote a bid

Building on my previous blog where  I spoke about my exuberant personality but also my lack of interest in taking the time to analyse and explore options and the financial impact of my vision , I acknowledged that I need to slow down and take the time to do the background and research. The energy I have when I feel strongly about something needs to be channelled into self-exploration of the things I don’t enjoy but need to embrace if I am to be successful. This includes data analysis and financial acumen. Most people will agree with a vision that is based on the greater good, but different personalities will rightly want to know the process, what, how, the what if as well as understand the risk of failure before buying into the vision. Having a vision is one thing but making it a reality in today's climate can't simply be borne from passion alone but from a realistic and effective long term business plan. So I shared with my vision with others and was able to secure support. Rather than simply talk, I then needed to channel some energy into developing a business case.

So last week I completed a business plan for a new year long exploratory project to look at what works well for people affected by dementia living at home but also what doesn't. Working together with local authority, voluntary agencies and health we want to learn about what is being used and meets the needs but more importantly what isn't working for people living at home. At the end we will use the learning from the project to help future commissioning intentions.

It all sound s simple doesn't it? Simple it isn’t as I will need to learn from others around data, analysis, merging and aligning those with what I know about how people feel and believe in order to end up with a result that clearly helps commissioners to plan ahead. This is a great start to achieving my vision. I can’t wait to share this project with our fantastic staff and draw on their expertise to make the vision a reality.

As far as my scholarship goes I have thrown myself into the opportunity and am really enjoying the renewed energy and vigour it's given me. As scholars we are encouraged to learn about ourselves and work on improving our leadership skills in order to improve services/lives for others. I've digested the learning opportunities and have made contact with various key contacts and stakeholders I think will support my own development. I'd love to do this by shadowing or spending time with people I not 

only feel an affinity to or admire, but also those that are experts at things that “don’t rock my boat” in order to learn. I have purposely looked at testing out my own unconscious bias.

Part of my journey is to admit, that whilst I come across as exuberant and happy, I can at times be quite unconfident and have a habit for apologising for things that aren't actually a problem. For example I always tell people I’m rubbish at maths and analysis whereas in fact, I know from a reliable source, I'm actually not that bad and probably quite good. Shock, horror I hear you cry. More of a shock to me I assure you that I might actually have acquired an analytical skill. I’m keen to look at myself, embrace and reflect upon constructive criticism and learn.

I'm very much looking forward to the challenges the programme will provide and have enjoyed researching options available to me. The suggestions are plentiful and all look useful but I can't help but reach wider and am drawing up a long list of things I think will benefit me and my project and ultimately the people I serve. In the next two weeks I’ll know of the project has been funded and then the real work starts. Managing this on top of my already complex and broad portfolio will be the greatest challenge of all

Dementia - social isolation - a duty to make it better.

For those of you who know what Myers Brigg is I am an extremely strong E and F which means I am happy, lively, loud and passionate? With high values and an ethical drive I shy away from things like maths and data. What matters to me is the person inside, the way we behave and how we support each other. However, it would be naive of me to believe that I can function in the corporate and political World without improving and increasing my knowledge in these areas.

For my scholarship I want to enhance the skills of analysis and data to appeal to a broader audience and improve the lives of those affected by dementia. Because it’s what they and their families deserve and I believe it’s what Society needs. Holistic care is about walking in the shoes of those we serve.

I believe that my staff out in the community are ideally placed to see what is missing in the care provided to people at home. If you don’t need a clinical task completing or are not reliant on social services for personal care, you can be largely ignored. Seeking support and help from others is not always an easy thing for people to do or what they what and so they can fall between the lines. People who want to stay at home for as long as possible should be able to do so. Carers do a marvellous job but the social isolation and loneliness I see every day through my work makes me feel as if we are failing as a Society. When people who fought for the rights we take for granted are left alone all day, every day with minimal contact and support I am ashamed and worried for the future.

There are inspirational people around who give selflessly of themselves to support others but if those in greatest need don’t know about them or how to access them they remain largely alone. It’s this group of people I want to think about and do more for. Surely that’s our duty and purpose.

I want to use the skills I learn by being a scholar to make such a fabulous case to meet those unmet needs that no one can say no and together we can change the World around us for the better

Since December, I have met with two fabulous leaders in social care, made numerous contacts via twitter and taken some risks in contacting people direct that I think might test my own belief system and assumptions. It’s my personality to launch into a project with absolute commitment and vigour, but not necessarily to worry about the “how” or the evidence. And so I hope these leaders will slow me down, calm me down and help me to understand that I can’t change the World or do everything in my project. Perhaps they’re right, perhaps not …………….  you don’t know until you try.

My first ever BLOG - Introduction

I started nursing at 17 years old and loved it from day one. I still do. I was fortunate in having a wonderful family, parents who truly loved me and are proud of my achievements and now a loving and caring family of my own. I have known my hubby for over 30 years and have two teenage kids who make me smile and frown every day. I love them dearly.

But my blog isn't about me - it's going to be influenced by two of the most inspirational and dynamic people I know. People who have always put others first, have led exciting and unusual lives and mostly whose love for each other makes me feel humble everyday. My parents, Keith and Di. My parents went to school together, were first boyfriend and girlfriend and love each other as much now as they did over 50 years ago when they got married. My mother has Alzheimers  and Vascular dementia. Every day is a struggle and a chore, but also has glimpses of joy and love. My father cares for my mother with such calm and gentle kindness that he could teach the most holistic caring clinicians a lesson in walking in the shoes of others. You can teach someone to carry out care, but you can't teach someone to selflessly and consistently put others first. That's something deep inside you.

Experiencing the effects of dementia on us as a family has created a personal drive and passion that I am in the fortunate positon , as a Director, of being able to use at work to benefit patient care. As a community Trust we want to help people to remain in their own homes and prevent unnecessary admissions.

This year I have been awarded one of the prestigious Florence Nightingale Leadership Scholarships. My application focussed on dementia.

Not every Di has a Keith who loves her more than he loves himself or a family like ours who celebrate each moment of joy and recognition. But I believe that every one deserves this and I hope that my scholarship will support my organisation to achieve this. My parents will remain my inspiration and will drive the passion and enthusiasm I have for supporting those living with dementia. So as I approach 2015 and embrace the World of Social media - supported by my children, I look forward to sharing my experience as an FN Scholar and hopefully drawing further inspiration and knowledge from anyone who reads this.

My next submission will describe what I want to look at, how I hope to engage our wonderful staff and the potential outcomes.