What a challenge to introduce you to a qualified and highly experienced Community Psychiatric Nurse like Joe Taylor. Joe is the kind of Nurse we would like to work with, learning from him every single day. Lots of knowledge, skills, experience, gentleness and common sense.
Joe works in the Communities of the Highlands in Scotland helping people with dementia and their relatives deal with their day-to-day life.
I’m so pleased to give Joe a voice to share with you how he approaches people with dementia, how Mental Health Nurses are the core of care, and how mental health services have changed over the years becoming closer to people, being part of the community services, where real life happens.
Let’s enjoy Joe, and his natural way to talk about a whole life looking after people, a fulfilling career and a way to live with with purpose and meaning.
I’m a community psychiatric nurse. Originally the job in Wester Ross was working with anyone over 65 who had a mental health problem. But very recently it’s changed to working with anyone who has dementia or suspected dementia and it’s covering the whole of Wester Ross in Scotland.
So it’s to do assessment, somebody may feel they have a problem, or their family may feel there is a problem, generally they visit their general practitioner who will contact us, I make an assessment and depending upon what I find, begin the process of diagnosis. Christine McCallum, Dementia Link Worker, is involved as early as we can manage, usually before diagnosis very often, so we get the whole package working as quickly as we can.
What happens after having a diagnosis of dementia?
When someone is diagnosed with dementia, it is a huge issue, an enormous issue for people and there are a lot of things that people can need help with. It can be emotional support that people need, there is a lot of understanding and learning to do, as a person with dementia and for the family, husband, wife, children who are going to look after their family member. Support, advice around finance, legal things, treatment, prognosis; people often ask: “How long am I going to live?” There is so much that people can need.
People’s reassurance is truly necessary.
It’s a difficult job to explain in some ways because although you could kind of plan in your head what you are going to be doing, some obvious pieces of work with people, things come up from nowhere, people want help with things you didn’t anticipate, sometimes there are major crises to help deal with.
What do families of people with dementia want or ask?
Families want to look after the person with dementia as long as possible, they want them to stay at home as long as possible and they will do everything they can. So, a lot of our work is around helping them to do that but with the nature of dementia sometimes the changes are dramatic and the requirements for the person’s care change very quickly and families are still doing their best to manage but maybe it becomes apparent that is not a realistic option anymore.
So we are sometimes in the position of negotiating with the family about what sort of care should continue for the person and maybe the advice we give is the advice they don’t really want to hear. I may have to say that the amount of care is beyond your resources now, I know that you want to carry on looking after the person but it is wearing you down, the person is getting more demanding of time and it is not a realistic prospect anymore. That’s a very difficult thing to say to people because they don’t want to hear it.
I have found anyway that generally people want the truth, what reality is. They want to know the challenges, not in a brutal hard way of course, but in an understanding and kind way. I try to help people to deal with the reality of their condition.
Years ago, nursing tended to be more paternalistic, like we knew best, trying to protect people and all that kind of thing. But not these days, it’s about helping people to deal with what’s happening.
On the other hand, sometimes carers are quite relieved that we are saying to them that things might have to change. They feel that they are allowed to back out to 24 hours’ care.
Lots of things to deal with around people with dementia and their relatives as you said. Sometimes you may give them the bad news. What are your skills to work with people with dementia and their families?
I’m good understanding of the condition in the first place, lots of experience. I’ve done the job for many years so that helps, I probably understand people in that kind of situation quite well.
I care about what I do and I think people understand that, so that really helps because when I speak to them, they are more likely both to listen and to speak because they know that my interest is sincere.
I’m very good at listening to people and interpreting what they are trying to say sometimes. Naturally, people can find it difficult to put their thoughts and feelings about their situation into words, and it is my job to try to help them.
Christine McCallum: “Joe is on the case as soon somebody shows a problem, or if there is a crisis. He is honest, very caring”.
I try to treat people as individuals, and not just as someone with a mental health label. I don’t try to rescue people in an order to make things better because it is not that kind of work. You have to develop a particular mind set to be able to carry on doing the work but it is very worthwhile.
Your approach is people and family-centred care.
Yes, it is about treating people as people. If you treat people like human beings with feelings, with opinions, it becomes a more constructive relationship.
I think we do well. Christine and I never deal with the person with dementia in isolation, we work with the family whenever we can. Families don’t say to us, “We don’t know what’s going on, nobody told us”. We always keep people informed and part of the decision making.
Certainly we look at the mental health of the family. We know that carers are very prone to mental health problems because of the continue stress that they are under.
We give advice all the time, making sure people have breaks, even some short ones, as short as an hour, and obviously getting more as time passes. People find that very difficult sometimes, they feel they should be caring for the person all the time and nobody would do it as well as they do, which is probably quite true, but if carers don’t get occasional rests, they will break down and then the whole thing can collapse.
We give advice around dealing with their own anxiety, we check if people are depressed, that sort of thing. Fortunately here, Andre du Plessis and Helen Robertson, our social workers, are extremely helpful and very understanding of people’s needs, this makes the job a lot easier and they tend to be involved quite early, so that’s good.
One of the benefits of working in such small communities is just the size of the population really. We are not dealing with thousands and thousands of people, huge communities where people can disappear. We are dealing with a number of Village communities and even smaller than that, so nobody is anonymous, we hear about people, people hear about us, and people tend to not get lost.
There are gains from living in a small community as you mentioned. However, at the same time, it can be difficult in terms of stigma for people who are not dealing well with dementia, when at some point they cannot hide the situation anymore, need care in a residential home, etc. How do you work around that?
We talk to anybody in the family who wants to talk and listen, children of the family, for example. The more people understand what’s going on, the better for the person with dementia.
It’s always difficult to predict, isn’t it? Some people when they go to a residential care home improve tremendously because they are being supported all the time, the social side of care helps, people keep going. However, some people have lived on their own or just with one person all their life and suddenly they are in a communal situation which can take a lot of adapting to.
When the time comes and someone with dementia needs 24 hours care in a care home or nursing home. Do the family still receive support from you?
Yes. We try to keep providing support for as long as people need it and we are able. Again, having Christine in post, this is much more achievable.
We don’t go in with a sort of standard learning package for people, I don’t think that’s the best way to deal with it. People have some skills already anyway. The way I look at it, it is more to do with helping and supporting people to deal with problems as they occur.
We may try to prepare people for what might be coming but things come out of the blue, out of I don’t know where, and people are astonished, shocked, and then that’s a good time to teach people how to deal with particular circumstances.
Again one of the lines that I always come out about with dementia care is that everybody has to adapt constantly because it is not a condition that stays the same, it is changing all the time, so the care and the challenges for people with dementia are also changing all the time so the carer never gets on top of dealing with every problem, it is impossible. That’s another reason why we need to keep in touch, to keep channels of communication open, then we can support as required, it might be incontinence or a particular aspect of behaviour or communication.
Sometimes people don’t remember their strengths or the way they used to deal with problems.
Sometimes is easy for carers to maybe be overwhelmed by a succession of problems. We can help people to focus on particular areas that they can have some influence over.
One of the issues in the dementia sometimes there is not a solution, there is not a successful way of dealing with a particular piece off behaviour, that’s a hard thing for people to accept. For instance, quite often I call in nursing homes or residential homes to give advice around particular aspects of behaviour. We go through everything they have been trying and sometimes there is not a solution, and then people must carry on doing what they can. It is not their fault.
Tell us about your career path. Why did you want to be a Nurse? Why mental health?
I was born and brought up in rural Gloucestershire, the fifth child of five. My Mum and Dad had both missed out on education and they really encouraged us to better ourselves. I was not a great student at school, I had a good brain but nothing really inspired, other than Literature and football! I became a Chelsea fan and fifty years later, I still am!
When I left school I had no real ideas about my future. I trained as a teacher because it seemed like a good idea, and I enjoyed but I never found a permanent job. For a few years I worked in the law courts in England but I knew it wasn’t for me. I was happy not to study for a while but after three years or so I thought that I would train to be a mental health nurse. I didn’t really know why, it sounded interesting and I knew that I wanted a professional career. I had learned in teaching that I could put ideas into words, and that I was a good listener, so maybe it was for me.
I was 26, and I trained in Hereford, England. In those days the school of nursing was attached to the larger hospitals, so I trained attached to the hospital. Lots of different placements, mostly in the hospital. I did my first community placement in the second year and I thought right, this is what I want to do. I wanted to be a Community Psychiatric Nurse (CPN) as soon as I could and after working in a ward for 6 months, I applied. I stayed in that job for 18 months. After a promotion, I took a job in East Cumbria, Kirkby Stephen, a little town about the size of Ullapool where there had never been a CPN before. This was more than 30 years ago, and the idea of community mental health services was just becoming established.
I nursed people with all kinds of mental illness, drugs and alcohol problems, dementia, everything. It was a fantastic experience, bearing in mind that I worked single-handed for nine years. By then, other services came to the area and the service developed. I moved into management for a few years, leading teams and managing wards. It was not so much fun and I was very happy to return to clinical nursing, on the West Coast of Cumbria, at a place called Millom. I was there for 4 years, built up another team but eventually felt like another change.
By then my kids were grown up, I was 50, I could retire at 55 and had always wanted to work in the Highlands. A job came up, an advisory job, giving advice to a management team and to community teams but it wasn’t a very good job. People were welcoming and friendly but management, some of the senior managers at least, thought that they knew mental health better than I did and my advice was mostly disregarded. Local managers were much more receptive and we did some good work together. There was not much job satisfaction and as quickly as I could, I went to work with the Community Mental Health team in Skye and Lochalsh, and later in Wester Ross also. I was back where I belonged. When I was 55, after 30 years service, I took my retirement but came back part-time as an advisor on a year’s contract. After 6 months, I was told that there would be no more funding at the end of the year but very fortunately for me, my present job became vacant in Wester Ross and I was lucky enough to start working here in October 2010.
Joe, you have a whole picture of how the mental health approach has changed and improved over the years and how necessary is to keep improving on research, resources and support. What are the challenges with dementia?
Historically across the UK, mental health services have been under resourced, it’s always been a Cinderella service. Most of our money is still spent in hospitals, whereas virtually all mental health problems are in the community. We need hospital beds, of course, but good community services keep people out of hospital.
Critical things have improved a lot. When I look back to the beginning of my career, comparing it to now, things have changed tremendously. When I started we used to have wards full of people with dementia, these don’t exist anymore. There is more understanding of dementia but still rely on having enough resources, people as well as money, to do the job.
The General Practitioner’s role is important. In our role we are involved closely with them and with families day to day. Very often we sit in the gap between the medical side and the family with dementia, we interpret both ways to make sure everybody understands what’s going on.
Up until very recently we were part of the community mental health team along with the adult side and drug and alcohol side. Historically this was fine because dementia was not high on anyone’s agenda. However, Scotland’s dementia strategy makes it plain that dementia is everyone’s business, not just mental health services.
It seemed to us that we have been too isolated, as dementia practitioners, within the mental health team. To be most effective, we really needed to integrate much more closely with Social Work, Community Nurses, GPs and the charitable sector. That’s where people who deal with dementia and their families spend more time so we have to be there too. Our relationships with our colleagues were always good, but now they are better.
So, that is where we are now, much closer to the community rather than within the Community Mental Health Team, which is a big change. It is for me particularly, because I’ve for with Community Mental Health Teams for 30 years, spending a lot of time and energy in building and developing them. But, things change rapidly so we have to make sure that we change too and we are not left behind.
What would you like to say to newly qualified Nurses?
Be patient with yourself, it is a difficult job, you don’t really start learning until you are into the job, making mistakes and doing things right, so be patient and don’t get too carried with the latest marvellous theories, they are fine for a while, and you may take something useful from them but the essentials of the job do not change.
The success we get in the job is because people understand that we care what happens to them, this is where the real benefit in nursing comes from, people realise “I’m not on my own with this insoluble problem, somebody understands me and is doing their best to help”. Sometimes there is not very much that we can do for them, but people understand and accept that.
And also, new nurses shouldn’t feel guilty about making a genuine mistake. There are always mistakes that happen and as long as we learn, that’s fine. When I was a manager I wasn’t hard with people when they made mistakes, I was hard when didn’t try hard or when they were lazy.
As part of my job as Mental Health Advisor, I had to investigate unexpected deaths or incidents, so I had to interview nurses and go through records, checking that people did all the kind of things they were supposed to do and invariably people had done the best that they could. I never found negligence, many occasions when nurses might have done things better but not negligence.
When you are dealing with adult mental illness, there are suicides and attempted suicides, that’s very emotional for nurses involved and they often feel very guilty, even sometimes to the point that they think that if they had done something different, a suicide wouldn’t have happened. This might or might not be true but as long as a nurse has done their duty properly, they should not be criticised. Nursing can be a very tough job, and nurses are their own worst critics.
What would you like to tell to people who look after a loved one with dementia?
Don’t try to deal with it on your own. It’s a massively difficult thing to deal for the family. Accept some help, the nurses and doctors and social workers want to help, not take over.
Try not to be too self-critical. You are human, and you will get things wrong sometimes. That’s normal. Don’t forget, you are under great stress and must be kind to yourself.
The person you are looking after will most likely die before you, so there will be an end to this. Your life doesn’t end with dementia, there is an after.
One sentence for someone who has just been diagnosed with dementia.
I always say to people, you have a diagnosis now, but enjoy your life and do the best as you can for as long as you can. Don’t waste your time, go on holiday, spend your money, do whatever you want!
And now Joe, you are going to retire soon. What are your plans for the future?
I’m going to retire in March. I’m looking forward to it, I’ve been a nurse for so long, 36 years is a long time. Simply, it becomes part of your identity, you are not just a person, you are a nurse too. I won’t be nursing after my registration expires at the end of March but I won’t be out of picture, I’ll be working as dementia advisor for Alzheimer Scotland, just four days per month.
I have lots of interests outside work – running, photography, football, reading. I am looking forward to seeing more of my children, who are all in England.
What have you learnt after a whole life looking after people?
I have learned that, although it can be difficult work, it should not be complicated. People are people, they have very similar needs, wherever they are.
I have learned that people have the power to constantly amaze and humble me, with their courage and fortitude, their selflessness and their honesty. Not everyone performs at their best in terrible times, but so many do.
I have learned to focus on the important things, on how people are feeling, rather than diverting my energies into tasks that make me look busy.
I have learned that it is ok not to know everything, people don’t expect that. They expect to be listened to, and treated as fellow adults.
I have learned that I have never stopped learning, and that is why I have lasted so long, and remained so interested.
What is Nursing about for you?
It is about physically being with people. There is a huge benefit in face to face contact, it is what people want and what they respond to. That’s what I try to provide and it is the essence of nursing. Yes, you need skills and knowledge but you need to meet with people as closely as you can, of course you must remain professional but still connect as closely as you can. This is what nursing is about. If you can’t do that, then chose a different job I would say.
What would be your advice to keep ourselves mentally healthy?
Nothing clever, I’m afraid.
Everything in moderation, but go crazy every now and again.
Deal with stuff, don’t procrastinate, it wastes time.
If you have an opportunity, and unless there is a good reason not to, take it. Life revolves around change and opportunity.
Help others, but don’t forget to help yourself.
Would you like to share anything else with us?
Yes. I am at the end of my career and naturally I am reflecting back on the many people I have met and worked with.
To so many courageous patients and their families, who have just done the best that they could, you have my great respect.
Professionally and personally, I have been influenced by some marvellous colleagues over the years. One of the joys of this career is that I have always worked with some exceptional colleagues, some people have always stood out for me. I could name people from every discipline but I’ll go for nursing, people who influenced me so much.
My ward sister in my first job in Hereford was Barbara Maddy. She was tough and uncompromising, only the best would do for her patients and she would defend their interests to the end. She would take on senior management, consultants, she didn’t care. She only selected the best staff available for her ward, and anyone who didn’t measure up was quickly moved on to somewhere less demanding. The end result was a well organised ward where people got better quickly. I am a different personality type to Barbara but she was an important influence in my development, and remains so today.
Colin Abbott was a CPN colleague in Humberside, We only worked together for a year or so, but I learned all about being a CPN from him. He was highly professional but also deeply compassionate. He was clear-headed, sometimes personally vulnerable but would always face challenges directly, never shirk them. My year with Colin prepared me to take on the challenge of my single-handed job in Cumbria, and we kept in touch until his sudden death a couple of years later. He was an exceptionally modest man, and you needed to work with him to appreciate what a fantastic nurse he was.
One of the joys of being a CPN is when you work with a partner. That doesn’t happen so much in Highland, where teams are usually small and multi-purpose. Colin Abbott stands out, as does Tony Hill, a nurse whom I recruited and mentored, and who eventually took my job in Cumbria when I moved on. We were chalk and cheese, but made a great partnership. People would talk to him when they wouldn’t talk to me, and vice versa. Tony died a couple of years ago and I miss him. Lastly, Christine McCallum has been my colleague for the past three years, successfully reminding me, on a daily basis, that two heads are better than one.
There are so many others, past and present, that I don’t have time to mention but what a privilege to work with them.
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Dear Friends,
When I invited Joe to be interviewed his answer was a straight yes. He wanted to do it as easy and natural as possible and we did it.
We spent a very nice morning with Joe and Christine at home listening to Joe and having tea. It was such a rewarding time, a true pleasure.
Joe does not easily share how good he is. So, Christine and I had to gently push Joe to talk about himself and how people trust him and feel safe and secure under his professional advice and care. He tries to be there, physically there for his patients, when there is a problem that he can help with. That makes a huge difference for people with dementia and their relatives. A real reassurance on this frail and uncertain journey.
Thanks to you both, Joe and Christine.
Dear Joe, we wish you all the best. Have a very happy retirement, although we will ensure to keep learning from you.
Elena Lorente Guerrero
14th of February 2016
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