My Future Care at the Norwich Palliative Care Conference 2024

May 8th was the first ever UK national Advance Care Plan Day and to mark the occasion, founders Dani Ayre, Clare Fuller and James Norris hosted a conference in Norwich with a theme of ‘Getting your House in Order’.

Sammy Winemaker and Hsien Seow on stage
Sammy Winemaker and Hsien Seow

Open to in-person attendees and live-streamed to venues both in the UK and worldwide, I was honoured to be one of the guest speakers on a day crammed with opportunities for sharing knowledge and learning from a wide range of expertise in the room.

First up after the introductions were Sammy Winemaker and Hsien Seow who have created a concept of seven keys to support people navigate the healthcare system, upstream Advance Care Planning and empower people to ask the questions that matter. The seven keys are explored in season 1 of their podcast, the Waiting Room Revolution and are also set out in their book: Hope for the Best, Plan for the Rest. Sammy and Hsien had flown in from Canada for the conference and gave an entertaining and informative talk.

Next up was the inspirational speaker Tommy Whitelaw, National Lead for Person Centred Voices sharing his personal story and key messages of Intelligent Kindness and What Matters to You. At the end he had us all on our feet and singing – thank goodness we had a coffee break before I took to the stage!

Dinosaur round the corner
Zoe Harris, My Care Matters

Those familiar with the My Future Care project won’t be surprised to hear that I emphasised the importance of encouraging people to make plans earlier than tends to be the case.

The key to this is empowering people with the information they need and stressing, as the picture shows, that planning is not about our age or state of health—none of us knows what’s around the corner! Click here to watch my talk.

Usha Grieve on stage
Usha Grieve, Compassion in Dying

 

Usha Grieve from Compassion in Dying followed and discussed what advance decisions are, why people make them, how they help, what are the barriers to making one and the practicalities of how you make one. 54,000 have made their advance decisions with Compassion in Dying, and Usha highlighted the huge disconnect between 76% of people having strong wishes regarding the end of life and the 7% who currently actually communicate their wishes in advance!

I have to confess I rather expected a talk on the ethical and policy dilemmas in DNACPR to be somewhat dry, but Wayne Martin, Professor of Philosophy at the University of Essex managed to fascinate and intrigue the audience with some of his research findings from the Autonomy Project. It was shocking how many of us in the room assumed that CPR should never be performed if there is a valid DNACPR in place , when in fact it is a recommendation, not an order.

Zoe Harris and Clare Fuller in front of a My Future Care banner
Zoe Harris and Clare Fuller

After lunch, there were further talks by advance care planning expert Clare Fuller, who posed the question “Who would speak for you?” in an insightful presentation on considerations around putting a Lasting Power of Attorney in place, and James Norris from MyWishes, who challenged us to get our digital lives in order.

The conference concluded with a panel talk with Suzie Taylor, who lives with a cancer diagnosis, and Lou Grant, her consultant at Norfolk and Norwich University Hospital.

You can watch videos of the entire day here.

Our first online Meetup for the My Future Care Community

Our panel (above) and attendees covered a lot of topics in the first My Future Care Community meetup in April 2024. These events are held on Zoom and are open to everyone who has taken our training or attended an awareness session.

We heard about tragic and triumphant personal experiences where future care planning either was or was not in place, insights about the lamentable lack of support for future care planning, the sense of privilege at being able to help people make their plans, information regarding the legal validity of documents, and a whole lot more.

Here are some of our key takeaways from the conversation (the full transcript and audio recording are available to My Future Care Community members on the My Future Care padlet):

The difference the My Future Care Handbook is making

  1. The Handbook is particularly helpful if there are complex family situations and they are struggling to have the conversation.
  2. Social services are so bereft of money that they can’t afford to do what they need to do. So we’ve got to find ways of supporting people to support themselves. That’s where the My Future Care Handbook comes into itself.
  3. The Handbook is the perfect retirement present. These are not conversations to delay until your 70s or 80s. We don’t know when things are going to happen to us.
  4. Just introducing the Handbook is not enough for some people – you need to keep it going, have regular sessions.

Advice for supporting people to make later life and future care plans 

  1. Most people need regular support and encouragement to get their plans in place.
  2. You can’t work in someone’s best interests if you don’t know anything about them.
  3. When you know someone is going to be checking in with you in a couple of weeks’ time, it really motivates people to get into the Handbook.
  4. Use the Handbook to clarify your values and wishes for your Attorney and guide them as to what you’d want.
  5. People often say, oh no, people don’t want to talk about that, people don’t want to do that, but they do. We just need to ask them and not make it sound like it’s all about death and dying. It’s about empowering people, to have it their way.
  6. People want to talk about death, they want to talk about what they should do, and they haven’t got the people to talk to
  7. It doesn’t have to be a morose thing… what a privilege it is to be helping people along their journey to [make plans]

The realities of making later life and future care plans

  1. It is much more than just filling out a couple of forms, it is a whole process.
  2. Get things done early. Don’t leave it to a time when, for example for people with dementia, your capacity to write a Will or set up an LPA might be questioned.
  3. The community thinks, well the hospital are going to do it, then the hospital thinks, well, the community are doing it, so nobody does it.
  4. You ca
  5. n’t just keep putting it off until life is more stable around you, because you will simply put it off forever. So work with what you’ve got at the moment and get it done.
  6. There is still a massive lack of understanding as to what a power of attorney is and when it should be put in place.
  7. If you’re dying of cancer, on the whole you’re recognised, you’re supported, you’re funded, you’re given a package of care, you’ve got access to hospice. But if you happen to be 85, living on your own with general frailty, a couple of carers coming in a day, early stages dementia, family living away, you have no access to care, you have no funding for care. And nobody has these conversations with you, because you’re not labelled as being end of life.
  8. It’s very straightforward if you’ve got an obvious life limiting condition, if you’re in the last days of cancer, then you don’t want to be resuscitated, you don’t want to be going to hospital, you don’t want to be given antibiotics. But it’s where you do those same stages when you’re living with dementia, when you’re living with frailty and old age with four care visits a day.
  9. If you haven’t got anything documented, you risk being kept alive way beyond the point at which you might have wanted them to stop.
  10. Doing an LPA may not be easy, but getting a court of protection order in place (if there isn’t an LPA) is way more difficult: we knew the journey he was on and we should have put lasting power of attorney in place when he had the ability to do it. It’s a significant additional burden now.
  11. The most recent document will take priority, this means that if you write an Advance Decision to Refuse Treatment before a Lasting Power of Attorney then your attorneys could potentially override the Advance Decision to Refuse Treatment.

If you haven’t yet completed our My Future Care training or would like to promote greater awareness of future care planning amongst your colleagues, ask us about our training dates and bespoke sessions. By completing the training you will be invited to future meetup events and unlock all the benefits of our ongoing support!

Supporting families affected by Young Onset Dementia

In this article, we highlight the later life planning support provided by Mandy Blair and the team at Dementia Oxfordshire.

Mandy tells us how the challenges of people who receive a diagnosis of Young Onset Dementia in their 50s and 60s are significantly different to the challenges facing older people with dementia.

Let’s see what she has to say:

What kind of support do you provide, Mandy?

We are a support service for people in Oxfordshire living with Young Onset Dementia and their family members. We are one of the few dementia services offering age-appropriate support for people under 65. We offer face-to-face, telephone and email support for people at every stage of their dementia journey from diagnosis through to bereavement support for
family members. Our team of three currently supports around 300 people – around 130 are living with young onset dementia and the rest are family members.

What kind of challenges do the people you support face when it comes to making plans for later life and beyond?

The challenges facing people who receive a dementia diagnosis in their 50s or 60s are significantly different to the challenges facing older people and their support and planning needs are often far more complex.

People in their 50s may still be working, they may have greater financial commitments, they may be carers themselves for children or older family members, they are probably still driving and can be physically fit and well. All of these factors mean that a diagnosis of dementia can have a hugely disruptive impact on a younger person’s life (and the lives of people around them) and this makes it very hard to adapt to – let alone plan around.

These difficulties are often compounded by the fact that age-appropriate support is not always available.

Taking all this into consideration, one of the first and biggest challenges to making later life and future care plans is helping a person find a sense of acceptance and the balance they need to be able to look ahead.

How do you hope the My Future Care Handbook and support will help you meet people’s needs better?

The My Future Care Handbook creates the opportunity to open up conversations. It is well structured and the information is all in one place. The bite-sized chunks of information make it possible for people to dip in and out as and when they are ready to deal with a topic.

It is a good resource for people living with dementia because it is accessible and well-written in plain English. It is also helpful for people to refer back to in between conversations and refresh their understanding as often as they need to.

We also find it a useful tool for working with family members. We use it as an opportunity to engage with them too and to bring the whole family together to discuss key topics.

We have used the Handbook with small online groups and in individual support sessions. We found that generally speaking, family members are able to engage in a group situation but that people living with dementia tend to benefit from face-to-face support.

We frame the Handbook as an opportunity for people to look ahead, express their wishes and make a plan while they have the capacity to do so – and then “park it” so that they can get on with doing what is important to them right now.

We find the Handbook to be a fabulous resource to get people talking and help overcome people’s natural reluctance to think about the end of life, death and dying.

Feeling motivated by Mandy’s insights? Would you like to upskill yourself or people in your group to support people in making plans for later and future care?

Take advantage of our free training and ongoing support programme. Our online training will equip your team to help the people you work with make an action plan and see it through, using the My Future Care Handbook as a source of information and structure for the conversation. Handbooks are available free in certain areas (thanks to area-specific funding), otherwise bulk prices are available.

Request further information.

Moving is good for us, even with a serious diagnosis

Founders of The Exercise Clinic, Emily Curtis and Chris Cottrell, share a passion for exercise and its health benefits for people who are living with cancer.

Chris was diagnosed with an aggressive form of prostate cancer in 2011. Quite early on he was encouraged to start a structured exercise programme, at which point his PSA progression slowed enough for him not to require further treatment for the next two years.

He has continued to exercise and firmly believes that structured resistance training and cardiovascular exercise has had a positive impact on the management of his disease and the side effects of treatment. He would go so far as to say that exercise has not only been life changing, but life saving as well.

Emily has been working as a clinical exercise specialist since gaining a BSc in Exercise and Sports Sciences from the University of Exeter, leading exercise training sessions for individuals diagnosed with cancer and cardiac disease.

The combination of Chris’ and Emily’s experience has given them a unique understanding of the challenges faced by people living with cancer and their families, and how exercise can be coached and monitored for maximum benefit.

Emily met Chris whilst working in a specialist cardiac rehabilitation centre, which was branching out to work with other clinical conditions, most significantly within cancer. They worked together for a period at the clinic and, and then set up the Exercise Clinic in 2016.

Because of Chris’s direct experience, they focused on prostate cancer. They wanted more people to have access to safe, effective exercise and long term holistic support that enables people to engage with safe, effective exercise over a long period of time. For all of us, what makes a real difference is challenging, or stressing, your body appropriately, over a long time. So it’s really a little bit, often and over a long period that makes a real difference with regard to health outcomes.

They became involved in a research project with the Royal Marsden which then led on to them running their own pilot with the hospital.

They were gathering evidence from participants as to what elements they found engaging, what really helped them. Prostate cancer was the main route of referral, but many of the people they saw had multiple clinical conditions: arthritis, hypertension, and cardiac issues as well.

Everyone reported how much more energetic it made them feel, how it improved their mood, how well they’re moving, their ability to function, to do daily tasks. The programme was highly praised by participants, who valued the virtual delivery, behavioural support and peer support elements. Self-reported improvements in physical, psychological and social wellbeing were substantiated by preserved scores in quality of life, wellbeing, activity levels, waist circumference and physical performance.

For Chris, exercise has become what he regards as being a vital component to his cancer treatment. Exercise helps him to focus in terms of what he can do to help himself because he knows it is helping. He is less focused on his next blood test or the next result of a scan, which helps him both physically and mentally.

The first thing Emily stresses is the importance of long term engagement: enjoying it and finding ways that are helpful for you to adhere to some form of exercise regime is important. For some people that might be doing more walking and keeping track. For others, it might be gardening with friends, or going to the gym and having a more structured approach. Finding something that you enjoy is really important, and some way to either track or monitor that or work with others to help you keep that going.

They encourage people to do up to 150 minutes of cardiovascular exercise a week and try and do some strength exercise on at least two days a week which is consistent with the national guidelines.

When people are a bit older there might be some other goals that they have in mind, it may be more about moving well through good range, good mobility, and testing your balance and coordination in certain positions.

They have experience of working with people with quite extensive disease that might be within their bones or spine, so they’re very careful around things like impact and certain extreme motions  like flexing and extension of the spine, It is about educating people about those things so that they feel empowered to know or can start to identify where their right level is for exercise.

All exercise was originally delivered face to face until COVID came along, and they moved online. They’ve largely stayed online because they found that you can reach a greater number of people who don’t have to pay to get to the gym or to get to the fitness centre or the local village hall, making it more convenient for them. The whole Marsden programme over the last three years was entirely online.

It means there really is no physical barrier, providing you can use a computer or a laptop, or even a mobile phone (though a larger screen is better, because you can see better, and they can see you). You don’t need to spend lots of money on equipment, people join with either no or minimum equipment.

They found that once people get through the door, their fears and inhibitions just disappear virtually immediately. And at the end of the first session they say how valuable it was, and how they are looking forward to coming back next week.

When the pilot project with the Royal Marsden came to an end, a lot of people wanted to carry on. So they set up Muscles Count, group exercise sessions that they run Monday and Friday afternoons, and Emily produces a video every week for people to access online.

Chris has been working with Emily as a client for the best part of 10 years, as have others. As he says, once people realise the importance and see the benefit that they’re getting from this, they’re reluctant to give it up, because it’s doing them so much good, both physically and mentally.

They are very open to having an initial conversation if people want to talk things through and just want a bit of advice. Get in touch by email or phone.

The Exercise Clinic Ltd – https://theexerciseclinic.co.uk/

Tel: 07437 518907   Email: emily@theexerciseclinic.co.uk

This article is an extract from a conversation we had with Chris and Emily. The full recording and edited transcript has been sent to members of the My Future Care Community. For further information on how to join the Community email info@mycarematters.org.

It is “never too late and never too early” for future care planning!

In this article, we speak to Peter Loose about the future care planning support he is providing to fellow members of Bognor Regis and Slindon Catholic Parish.

Peter completed our My Future Care training recently so that he could share his learning with his church community, using the My Future Care Handbook as a guide.

If you are a member of a community group of any kind, Peter’s insights are likely to be relevant to you. Let’s see what he has to say.

What kind of support do you provide, Peter?

Like most churches, we have a significant proportion of people in the “third age” and conversations with those people confirmed experiences elsewhere that people tend to think about the issues in the My Future Care Handbook when they start to become pressing – whether for themselves or family members.

To address this, to create “conversation starters” and to provide specific support for some people for whom it is a current issue, we decided to hold a series of coffee mornings where we could introduce the Handbook, share experiences and encourage people to make a start.

In practice, we found a lot of people had already made a start on the issues but didn’t know what else to do. The Handbook turned out to be an excellent roadmap for these people. 

What kind of challenges do the people you support face when it comes to making plans for later life and beyond?

People tend to start too late, although I do advocate that “it is never too late and never too early”.

People whose families live afar struggle to find opportunities for the right discussions, especially for the more sensitive questions. And it can be difficult to know where and when to start.

The “What are your priorities?” section of the My Future Care Handbook [in which people can review and select topics that are relevant to them] is as good a starting point as you can get. I stress that “Handbook” in the title is no accident – it is not a novel to be read from start to finish but a reference book to look at periodically and to consult the relevant sections when the time is right.

How do you hope the My Future Care Handbook and support will help you meet people’s needs better?

We hope that it will encourage people to have conversations sooner, whether with the generation above them while they are supporting them or the generations below when we reach that age.

As churchgoers, we are accustomed to reflecting – and prompted by the Handbook, other people’s stories have been stimulating thoughts and conversations.

I have come to regard the Handbook as the go-to retirement gift – now you have extra time available it would be good to make a start, and what better time to begin compiling your life story!

Feeling motivated by Peter’s story? Would you like to upskill yourself or people in your group to support people in making plans for later and future care?

Take advantage of our free training and ongoing support programme. Our online training will equip your team to help the people you work with make an action plan and see it through, using the My Future Care Handbook as a source of information and structure for the conversation. Handbooks are available free in certain areas (thanks to area-specific funding), otherwise bulk prices are available.

Request further information.

Supportive Sharing Between People Ageing Without Children

We spoke to April Yasamee about the work of the Ageing Without Children group in Hastings (AWOC Hastings), which is part of the national campaigning, information and support organisation, Ageing Without Children (AWOC).

AWOC Hastings provides regular meetings and information sharing amongst people without adult children living nearby. The group aims to prepare its members for older age when their mental and physical abilities might be diminished.

April has completed our My Future Care training and has started sharing the My Future Care Handbook as a guide for supportive conversations about later life and future care planning.

The number of people over 65 without adult children is set to rise from over 1.2 million to 2 million by 2030. So, if you support people in this age group, April’s insights are likely to be relevant to you. Let’s see what she has to say.

What challenges do your group members face when it comes to making plans for later life?

We have to face the complicated processes and decisions involved in making later life plans without close family back up. This is especially difficult for older, single people and those without extended family or trusted support.

We tend to lack awareness of the kinds of support available. When we do find care services and legal support, knowing how to navigate them by ourselves is also a significant challenge.

More than anything, we feel the pressure of taking responsibility for these decisions alone. 

How do you hope that the My Future Care Handbooks and support will help you better meet people’s needs?

We hope it will help us understand the decisions and plans that will enable us to maintain our chosen independent life-styles in our homes.

We see it as a valuable tool for considering our future plans for care.

Supportive sharing of the Handbook meets our needs by raising awareness of topics we hadn’t thought of before and giving us the confidence to action them.

Feeling motivated by April’s story? Would you like to upskill your team to support people in making plans for later and future care?

Take advantage of our free training and ongoing support programme. Our online training will equip your team to help the people you work with make an action plan and see it through, using the My Future Care Handbook as a source of information and structure for the conversation. Handbooks are available free in certain areas (thanks to area-specific funding), otherwise bulk prices are available.

Request further information.

Meeting Planning Needs in Crawley’s South Asian Community

Come with us to meet Parveen Khan, who works as a Bilingual Memory Navigator for Carers Support West Sussex. Parveen supports unpaid carers in Crawley who are from the South Asian community and who have a family member with dementia.

Parveen has just completed our My Future Care training. She is currently testing out what she has learned to discover what works best for the people she supports.

Read on to find out what she had to say.

What kind of challenges do the people you work with face when it comes to making plans for later life?

The South Asian community has its own dynamics when it comes to thinking about health, care and any future planning. I have found through my work that some decisions are kept right to the end.

Families rarely talk about death or the grieving process.

Living in extended families it is always expected that the person living with dementia will be looked after – but there is often no conversation about how the carer or the rest of the family will cope or deal with the situation in real-time.

Culture, religion and expectations around these bring their own challenges. Different generations can have different outlooks on life and different priorities.

Death can be a taboo subject and so can dementia.

How do you hope that the My Future Care Handbooks and support will help you better meet people’s needs?

The My Future Care Handbook is an excellent tool and resource for my carers. It brings together many elements of a caring role and issues that need to be thought about now as well as in the future.

The My Future Care Handbook takes a practical attitude and approach. This is very much needed in an emotional situation.

It also helps people to be less afraid of having conversations with family and friends.

The Handbook is very much person-focused – it includes healthy eating, exercise and sections about a person’s life story. I think this is really important and helpful as it celebrates the life of the person and leaves a part of them to be remembered when they are gone.

How have you engaged with people so far?

I have been giving out Handbooks to carers who come to my “yeh dosti” sessions, which means “this friendship” in Hindi.

It depends on opportunity, time and when they are free, but I plan to spend some time on a one-to-one basis with them, to help them make their action plans. Face-to-face is always better.

Thank you Parveen for sharing insights into the community that you support and your plans for using the My Future Care Handbooks to help people meaningfully engage with later life and advance care planning.

Feeling inspired by Parveen’s story? Would you like to upskill your team to support people in making plans for later and future care?

Take advantage of our free training and ongoing support programme. Our online training will equip your team to help the people you work with make an action plan and see it through, using the My Future Care Handbook as a source of information and structure for the conversation. (Handbooks are also available free in certain areas, otherwise bulk prices are available.)

Request further information.

The Healing Harbour: Supporting the well-being of people with life-limiting conditions in Norfolk

We spoke to Alison Brennan, Founder of The Healing Harbour, to find out how our My Future Care Buddy Service is helping her support the well-being of people with life-limiting conditions and/or palliative diagnoses in Norfolk.

What kind of support does The Healing Harbour provide?

The Healing Harbour is a Compassionate Community Group (and registered charity), established less than a year ago in response to the increasing number of people in our North Norfolk Community who have life-limiting illnesses and their families/carers, who often experience a lack of statutory support.

The Healing Harbour has created a ‘Healing Garden’ a space in which to connect with nature and receive therapies for well-being including Reflexology, Drumming and Horticulture. Our focus is on supporting well-being in living with a palliative diagnosis.

We are passionate about sharing conversations and learning opportunities to ‘demystify’ death and dying, empower people to explore choices in advance care planning and nurture the inherent skills in our community by supporting compassionate response in action within our community.

How is the My Future Care Buddy Service helping you to meet people’s needs?

Our community group is made up of a diverse range of skills and people, many of whom have had no professional experience of working with people who have life-limiting illnesses. The My Future Care Buddy training has been fundamental, it provided a catalyst for individuals to explore in a safe environment their own understanding of what is Advance Care Planning.

The My Future Care Buddy training has been a fantastic support to not only explore the potential challenges to having the conversations around advanced care planning, but in accessing supportive resources, and providing a ‘structure’ through the Handbook to enable conversations.

The starting point in the group was to explore our own wishes and choices in death and dying so that as individuals we felt more familiar with the areas in which choices could be made.

One of the most important elements of the Buddy support is that it is ongoing, that the discussions that are held can be accessed when people are able to and that resources and experiences are shared. It is so inspiring to see all the different organisations and people involved in bringing these conversations into our cycle of ‘normality’.

The Healing Harbour has been sharing the work of My Care Matters at local palliative care events and community events, we have held supported conversations for the community after the viewing of ‘Dead Good‘ (Vamos Theatre’s Production exploration of palliative care, death and dying) and worked in small groups completing Statements of Wishes, Advance Decisions to Refuse Treatment (ADRTs) and Lasting Powers of Attorney (LPAs). We have also held Zoom sessions on LPAs for community groups. Some of us are working with individuals to help others become aware of choices they can make for their future care.

We have over 30 volunteers in our group, 13 of which have chosen now to take forward their Buddy training to work alongside others in our community to help explore choices at end of life and advanced care planning. The impact is ongoing as we are now about to start a ‘road tour’ around North Norfolk, offering the community through local advertising and our community connectors the opportunities. So from small starts, great things can happen, Thank you My Future Care Buddy Training!

Would you recommend the My Future Care Buddy Service to others?

Most definitely.

The Buddy training is a supportive, enabling process in which people from any walk of life can participate without feeling de-skilled.

The delivery was empowering, people felt safe and comfortable expressing their lack of experience and not knowing. The initial training provides a starting block for awareness and reflection and the My Future Care Handbook is a framework to structure the process. The most important component is the ongoing support and access to continued learning and resource sharing.

Thank you Alison for sharing your innovative work and your support for the My Future Care Buddy Service!

Supporting Sandwell to provide ‘priceless advice’

Each month we pay a visit to one of our trained Buddies to find out how the My Future Care Buddy Service is helping them make a difference in the lives of the people they support.

This month we spoke to Deb Pierson from Thinking Differently About Dementia, a 3-year National Lottery funded project delivered by Agewell and Dementia Pathfinders, which provides community support for people in Sandwell with mild or moderate dementia and their family carers.

What kind of support does Thinking Differently About Dementia provide?

We support people in their own homes on a one-to-one basis as well as at our two meeting centres, our DEEP group and our DeCafe. All these settings provide a safe and supportive place for people who are in the same boat.

At our meeting centres, people with dementia can enjoy the company of others and join in with a programme of physical, social, creative and cognitive activities.

At our DEEP group we support equal opportunities for all voices to speak and be heard on what matters to them. Our DeCafe is a relaxed café for people with dementia, family and friends to come together for lots of chatting, advice and fun and games.

How is the My Future Care Buddy Service helping you to meet people’s needs? 
I have held several sessions at a local extra care facility where I gave a presentation and shared insights about the My Future Care Handbook.

I have also provided a number of one to one sessions with the family members of people living with dementia using the Handbook as a guide.

What difference is the My Future Care Buddy Service making?

These are words of a lady I supported, whose father has Alzheimer’s and vascular dementia.

“I was approached by Deb and invited to look at the My Future Care Handbook. I had a couple of sessions with Deb where she gave me priceless advice on how to fill it in with my Dad.

“Over a period of time, when my Dad was having brighter days, we went through it together. Some of it I found daunting and if I’m honest I didn’t like some of his answers as I would not have made the same choices, but they were my father’s answers and reflected what he wanted. I learned a lot. We persevered and worked through the book.

“Not long after the book was filled in, Dad was taken ill and hospitalised and then had to have 24 hour nursing care in a residential home. I was devastated and overwhelmed by the questions that needed to be answered.

“All of the answers were in the My Future Care Handbook. I let the hospital and then the care home copy the book so they had full access to my Dad’s likes, dislikes and wishes. The book let them know who my Dad is. It’s been a godsend. “Having this book has taken away the difficult choices and the pressure of
remembering all of his likes/dislikes/preferences etc. It covers everything everyone needs to know.”

Thank you Deb for sharing your experience and this powerful story! 

 

Choice, control and planning: a conversation about death and dying

I am acutely conscious of how precious time is for Wendy Mitchell, so I was already grateful to her for taking the time to speak to me about her thoughts on death and dying recently. I feel even more so now, having seen the unbelievably busy schedule she has got, promoting what she describes as her final book: One Last Thing: How to live with the end in mind. My copy arrived the day we spoke so I did not have a chance to read it beforehand but I already knew, from our previous conversations during my research for the My Future Care Handbook, that she was an ardent supporter of not only making plans for later and end of life but also of talking about it with the important people in your life, in her case her two daughters.

For those who may not know, Wendy received a dementia diagnosis at 58, almost nine years ago, and has spent her time ever since raising awareness of the disease and demonstrating first hand how there is life after a diagnosis. She has given hope to thousands who were allowed to believe their life was effectively over. Admittedly, the majority will not have gone sky diving, wing walking or abseiling or written two (three?) Sunday Times best sellers to prove the point, but Wendy, together with organisations like Deep, have highlighted to a worldwide audience how people living with dementia can continue to play full and active roles in society, with the right support.

Nevertheless, Wendy is well aware that dementia will catch up eventually. She tells me her bad days are becoming more frequent, hence my reference to time being precious, though I know she agrees we should ALL be living life on the basis that each and every moment is precious and not to be taken for granted. Whether or not we are living with a life limiting disease we are all going to die eventually, we just don’t know how or when. “Doctors would remind me that dementia is progressive,” says Wendy, “but nobody knows in life what’s going to happen – life itself is progressive – so you’ve got to live for every day.” And when the day comes, as Wendy says, “the more we have been able to plan and share our wishes, the more chance we have of a better death”.

When researching their book, Wendy and her co-author Anna Wharton interviewed, amongst many others, a man who was proud to tell them that he had all his paperwork in order. “He’d completed everything, everything you could think of, he was so pleased with himself. And the one thing we said at the end was, so what do your sons think? And he hadn’t told them. He never even thought of it. He thought by doing all the paperwork, that was enough… it was a light bulb moment for him… you could see his mind working: ‘Yes, I must. Why haven’t I done that?’

Picture the scene…

Doctor: I see your father has given you power of attorney. As you know, that gives you the authority to speak on his behalf. He has reached the point in his care where I’m not sure that further treatment is necessarily in his best interests. What would he want us to do?

Son: Er, I have no idea, we never talked about it.

“That’s what we need to get over to people,” Wendy continued, “it’s no good completing all the masses of paperwork if you don’t have a conversation… I thought the book would be getting people to talk about death, but actually it’s getting people to just have a conversation.”

Of course, both are important, as Wendy says: “you really cannot have one without the other.” The man in question might have written in full detail what his wishes were in such circumstances, and I would be the first to highlight the importance of putting your wishes in writing; people’s memories of conversations can differ, a conversation on its own is not enough. However, the paperwork on its own is not enough either, if you expect loved ones to understand and respect your wishes. As Wendy says, “the greatest gift you can give your children is to talk about the future and death.” A conversation is a two way thing, those speaking on your behalf and eventually left to settle your affairs should have a say in this too. You may not want a funeral, but should you not take into account what they might get out of a ‘good send-off’?

During our conversation we touched on the realities for people without family members to advocate on their behalf. Whilst there is no magic solution, we did agree that in these circumstances, writing down your wishes and ensuring they are available to any healthcare professional supporting you is just as – perhaps even more – vital.

It is of course no surprise that how to have a good death is increasingly on Wendy’s mind but I had not previously appreciated how strongly she felt about having the right to choose when we die. It is telling that the longest section in Wendy’s book, and the topic to which we kept returning when we spoke, is on assisted dying.

“The matter of quality of life is so individual; it always comes back to choice.” Wendy’s deal breakers, the things that for her make life worth living, are mainly physical: going for long walks, taking photographs, typing and of course her two daughters. She has already made it clear that she is not to be admitted to hospital under any circumstances, even if it risks shortening her life.

Wendy and Anna present a thorough scrutiny of the varying attitudes, laws and options available to people in different countries regarding assisted dying and it is difficult to argue with Wendy’s position that ultimately it should come down to personal choice. It also seems obvious that we should be listening very closely to those people living with a life limiting diagnosis; death is far more real to them than to those of us for whom it is an abstract event that will happen at some unknown time in the hopefully far distant future.

There is so much more in Wendy’s book that I want to explore further… about identity: are we the same person when we are deemed to have lost capacity through a condition like dementia, in other words should the choices we make prior to losing capacity take priority over anything we may indicate to be our wish subsequently? About control and choice: we want control over, and choice in, our lives, but how far can that go: we can’t control whether or not we die but should it be acceptable for people with a terminal diagnosis to choose and control when, with medical support?

Lots to mull over. One Last Thing is an informative, at times heartbreaking yet hopeful read, and a book I shall be returning to for top-ups of Wendy’s clarity, wisdom and honesty.

One Last Thing is available from:

The Book Room https://thebookroom.uk/product/one-last-thing/

Waterstones https://www.waterstones.com/book/one-last-thing/wendy-mitchell/9781526658753

Amazon https://www.amazon.co.uk/s?k=one+last+thing+wendy+mitchell&crid=1M0OBSAWWPM45&sprefix=One+Last+Thing%2Caps%2C139&ref=nb_sb_ss_ts-doa-p_1_14

Plus other book stores.

And the ‘great resource’ Wendy mentions (thanks Wendy!): My Future Care Handbook can be purchased here: