My talk at the Alzheimer’s Show March 2023

The talk I gave at the Alzheimer’s Show is available to listen to via their website but you need to pay (price includes all other talks) so for those who’d like instead to read what I had to say I have tidied up my scribbled notes and added the slides…

Hello everyone, thanks for joining me this afternoon. My name is Zoe Harris and I’m the founder of My Care Matters, a not-for-profit social enterprise with a mission to improve people’s experience of care in all care settings.

The project I am going to talk about today is our My Future Care service, supporting people to make plans for their later and end of life. I’d like to start by giving a bit of background as to how it came into being.

The inspiration for this work was my late husband Geoff who lived with dementia. I cared for Geoff for about 5 years until he had to move to a care home for what turned out to be the final 13 months of his life. During that time I saw how mistakes would happen because the people caring for him knew nothing about his needs and preferences, the things that mattered to him.

So I developed a wall chart, that went on to be called the Remember-I’m-Me Care Chart, to share the things that I knew Geoff would have talked about if he’d been able. All I was trying to do was help busy carers support Geoff, and to help them develop a relationship with him which would be impossible if they knew nothing about him. But when the care home manager saw that first chart and asked for some more for her other residents, and I realised this simple tool had the potential to help thousands of other people in a similar position to Geoff, unable to communicate and being cared for by people unaware of their needs and preferences.

Long story short, variations of that original chart have gone on to be adopted by over 1,400 care homes throughout the UK.

It also attracted the interest of hospitals but as much as I could see how vital it was to ensure a person’s needs and preferences were available to hospital staff, we needed to find a way to ensure that it was available immediately, not just when family members came in to provide the information to go on the chart.

So we developed an online tool, the Mycarematters Profile, where people can input information about themselves, or on behalf of someone they care for, and make it available to anyone with their unique Mycarematters code, name and date of birth. The reality is that printing it out has the best chance of it being seen for now, but at least if that goes missing the information can be viewed online and can of course be reprinted, also updated or amended whenever necessary.

We were trialling that concept with an NHS Trust in Cambridgeshire where they were also looking in to how to increase the number of patients with advance care plans and wanting to understand why those conversations weren’t happening. Because the two projects were running at the same time, it soon became clear that inviting someone to complete a Mycarematters Profile also helped kickstart the conversation about advance care planning. It also demonstrated that making plans for the future should not just be about preparing to die well but also how to live well. One of the questions on the Mycarematters Profile is about pets. Not knowing whether their pet is being looked after is one of the most frequent sources of stress for people who are in hospital. So it is an opportunity to ask people what plans they have in place to ensure pets are cared for during their stay in hospital. This can expand into a conversation about the other practical issues that need to be considered, for example in an emergency when the person is unable to communicate. Another question asks about the important people in a person’s life. So that is an opportunity to ask whether they might like one of those people to speak on their behalf, again if they are no longer able to communicate. In other words, would they be a suitable person to take on power of attorney.

But why does any of that matter? As one person said, when enquiring about the My Future Care service: I can just let my family decide about all those things. But is that fair?  One of the most frequent reasons people come to us for support to make their later life and end of life plans is because they’ve been put in that position by family members being expected to make decisions on their behalf, when they felt unprepared to do so, even if they have power of attorney, and they don’t want to leave their family members in that position when the time comes.

That was confirmed by research done around advance Decisions. An advance decision, full name Advance Decision to Refuse Treatment, is a legal document setting out the treatments you would not want in certain circumstances. Even if decisions have been made, they may not have been discussed with family members. Plus this concentrates on a very narrow set of questions about the circumstances in which a person might choose to refuse treatment, when a much wider conversation is needed. We need to ensure that our family members know what our wishes are, even if that conversation can be a challenging one for some or all of those involved.

So it matters because we don’t want to increase the stress our family members are already under when we are unwell. And it also matters because it can give the individual some sense of control over their future and therefore lead to improved mental wellbeing. That is something we measured when evaluating the My Future Care Service, and I’ll say a bit more about that in a minute.

But first, when is the right time to start having these conversations? There is a saying, that it is always too soon, until it’s too late. We always think we have time to sort things out, until suddenly we don’t.

 We have to remember that none of us knows what’s round the corner. I’m not sure you should be too worried about this particular scenario, but there is one thing that we can be absolutely sure of, and that is our life is going to come to an end. We may not know how or when but, as Benjamin Franklin said, “in this world, nothing is certain except death and taxes”.

There are other things we know: we know for example that we are extremely likely to have at least one hospital admission in the year before we die. But we shouldn’t be waiting for our last year of life to think about, write down and share the things that are important to us, and who’s to say whether or not we have entered that final year. You want to know that your wishes and any decisions you’ve made have been written down and discussed with the people closest to you, to avoid medical interventions you don’t want, to be cared for in your preferred place where possible, to ensure anything related to your religious beliefs is respected, and so on, so that it is there, ready for the time, temporarily or otherwise that you are unable to communicate your wishes. So whenever I am asked when is the right time to do these things there is only ever one answer I give, and that’s ‘Now’.

And yet some of us still find it incredibly difficult to make those plans, and after those trials in Cambridgeshire we went on to run some workshops and do some research to see why those conversations aren’t happening.

These were the barriers we identified:

  • Lack of clarity about options available, what it is we should actually be doing, and that goes for healthcare professionals as much as the rest of us. That was a key factor behind the reluctance of staff to initiate the conversation.
  • Confusion as to what document does what – one of the classics is understanding the difference between an advance statement and an advance decision.
  • Reluctance to discuss death and dying. As we all know, it’s not true that talking about it makes it more likely to happen. But that reluctance might be on the part of the individual, or perhaps it comes from family members.
  • The longer it’s left the more difficult it becomes, and by that I mean emotionally, it seems the closer we get to facing our own mortality the more difficult it is for some of us to acknowledge it and make plans.

The work we did with that Cambridgeshire Trust led on to a couple of years of further research on the topic of later life planning, understanding why it matters and the difference it can make.

During our research, we had found a lot of great materials both online and in printed form, but none that brought it all together.

So we produced the My Future Care Handbook, a one-stop-shop for all things related to later life. It has been described as a gentle walkthrough of the decisions we should all be thinking about, and the intention is to encourage people to think about and make decisions around their future care and end-of-life much earlier than tends to be the case.

The approach we have taken is to make it relevant even to those people who may not feel that they are ready or need to discuss later life care, so we talk as much about living as we do dying.

You can write a bucket list of all those things you still want to do, produce a play list of the music you might like to listen to if you’re unwell, it explains how to do things like writing a will and sorting out power of attorney, it includes blank Mycarematters profiles for people who don’t want to complete one online, it prompts people to have a contingency plan to ensure, as I mentioned before, their pets are looked after if they have an unexpected stay in hospital.

We use colour coding to help prioritise the tasks that may be most appropriate or urgent according to a person’s situation.

And then there’s a variety of Factsheets with tips on healthy living, the different kinds of housing and care that’s available for people in later life and we touch on financial planning as well.

By making it relevant even to those of us who have yet to recognise and face our own mortality, it encourages us to start thinking about these issues, as I say, much earlier than is normal practice.

It is deliberately a printed document as opposed to being online, which is not to say we shan’t take it online in the future, but we get lots of feedback that it’s a pleasure to have a tangible document to hold and work through. People talk about getting drawn in almost without thinking about it, we provide a pen with each Handbook, so you can just open it up and make a start. For those willing and able to use the internet we also include QR codes which take you straight to various online resources.

And then of course, just as important as the conversation itself, is recording and sharing your decisions.

My late mother had COPD and as it started to get worse she made plans. How detailed some of those plans were I wasn’t aware of until after she died, and I shall forever be grateful that she left a full list of people to inform and their contact details, and the kind of funeral she wanted, including her choice of hymns and readings and what she wanted us to do with her ashes.

The only thing she could have done better was leave those instructions in a more obvious place. She had told me she’d written it all down so I searched high and low in her flat until I finally came across some scrappy bits of paper in the back of her previous year’s diary.

So it’s really important that people not only think about these things and write down their preferences, but that they are accessible when needed! – the Handbook is full of forms and planners to help record someone’s wishes and decisions and also has advice on where documents can be stored.

But, as user friendly and easy to use as the Handbook is, even that isn’t enough to get some people to shift from a position of thinking about it to doing something about it. Lots of us are expert procrastinators, finding convincing reasons for not getting on with it, and we need a nudge.

I learned a great word for this recently: what we are doing is quiddling, busying ourselves with trivial tasks as a way of avoiding the important ones. We are all such good quiddlers!

There were lots of people who were very generous with their time and did some in-depth reviewing of the first version of the Handbook in 2020, but I noticed that many of them only made a start once we had a date in the diary to speak about it. Then there was an urgency, a deadline, that meant they needed to get on with it. They admitted they needed that nudge to open up the book and make a start. Sometimes they’d get stuck at a particular point, and I’d need to give them permission to move on, do something else, maybe come back to that later.

So that’s what inspired our Buddy Service, offering people an opportunity to have a friendly chat, via Zoom or on the phone, with a trained volunteer Buddy. We use a coaching style to help people think through plans for later life, perhaps give you the gentle nudge you need to put your thoughts into action.

Thanks to some grant funding we’re able to offer it as a free service and that includes a free copy of the Handbook. If you don’t need or want the Buddy Service you can always choose to buy a copy of the Handbook (they’re available on our website), but the funding is all about providing that extra support.

We offer up to 4 sessions by phone or video call to give the Buddy and their client an opportunity to agree an action plan and then time to see it through.

The Buddy is there to support you to identify and meet goals. Think of it as a bit like working with a personal fitness trainer. They’re not going to do the work for you, but having an appointment in the diary means it would be rude not to show up, and if you and your Buddy agree a set of actions that are going to be done before your next conversation, it’s more likely you’re going to do them!

We don’t offer advice but we can signpost to services as appropriate, when a greater level of support and advice might be necessary.

So a couple of quick case studies…

Working with John started out as a bit of a challenge. He was persuaded by his wife to have an introductory session with a Buddy but his first words were along the lines of “What’s the point?” During the session he came to realise that this wasn’t just about him but the impact it would have on his wife if he didn’t make plans and he was proud to share with his Buddy two weeks later how much he had achieved.

Yvonne lives alone and isn’t in touch with any of her family so just being able to chat about the various issues with her Buddy, as she says, took a weight off her mind.

Chris attended sessions with her husband and they were initially quite anxious about having the conversation with each other. By having a Buddy in the room so-to-speak it took the pressure off and it sounds like they had a thoroughly enjoyable time!

So we’ve had some good anecdotal feedback, but because we ask everyone to complete a questionnaire before and after using the service we have been able to measure the number of documents people have produced and also any change in their wellbeing.

Unsurprisingly, virtually everyone ends up with more decisions made and documents created than they had before using the service. You may not be able to see these so from left to right they are… funeral plans seems to be one of the topics that people are able to engage in most enthusiastically. I’m not sure we’ve worked out why that is.

The percentage of people saying they had a poor quality of life before using the Buddy service was 57% and reduced to zero after. And the percentage saying their quality of life was good increased from 7% to 43%.

And from the questions we asked that enabled us to measure people’s wellbeing, the average score went up from 48 to 78.

Good mental wellbeing is not just some fluffy nice to have outcome. Positive feelings bolster the immune system and lead to fewer cardiovascular problems, whereas anxiety and depression are linked to poorer health behaviours and other conditions such as inflammation.

But we can only support a limited number of people that way, and an online service doesn’t suit everyone. So we are working with organisations, training their staff or volunteers as My Future Care Buddies so they can support their clients themselves. The Handbook means they don’t have to become advance care planning experts, and they’re free to provide that support in whatever way suits them best, whether that is running group sessions, drop-ins or 121 meetings.

So we currently have funding to provide free online training, free Handbooks and free access to our ongoing Buddy Support Programme to small organisations and groups, and we ask larger organisations to buy the Handbooks and we have the option of more in-depth face-to-face training as well.

They say knowledge is power. Informing ourselves of the options available to us and making some decisions can give us power and a sense of control over events in the future when we may have lost the capacity to speak for ourselves.

We’re also going to enable the professionals caring for us to do their best to give us the kind of end of life we want, and reduce some of the stress our family members might otherwise feel, not knowing what we would have wanted.

I’d like to leave the last word to Dr Lucy Pollock who has written a book I highly recommend, called The Book About Getting Older. This is just one of the pearls of wisdom to be found in the book: “When these questions are kept locked away they weigh us down with unhappiness, anxiety and anger. Bring them into the light instead, and we can discover reassurance and new-found confidence.”

The My Future Care Story… so far

It’s Dying Matters Awareness Week so it seems like a good time to take stock… and not for the first time in my life am I looking back and saying, I didn’t expect to do that! I suspect a lot of people can say the same, having started out with one idea and ending up with something entirely different.

This time it is the My Future Care Handbook and Buddy Service. In 2018 we received a small grant to develop what we thought would be an advance care planning (ACP) toolkit for non-specialist healthcare professionals. Not specifically to add to the paperwork and forms already out there – there are plenty of those – but to encourage people to initiate the conversation by strengthening their skills and knowledge. One of the barriers to people creating advance care plans, we had discovered, was a general uncertainty amongst non-specialist staff as to what ACP entailed.

But two years, numerous workshops, surveys and interviews later it seemed much more important to put the information in the hands of the individual, give them an understanding of the options available to them and encourage them to take the lead.

We’re the experts on our own lives, after all, so why expect a professional to take the lead on something we know best, when all we need is an understanding of the options and decisions available to us?

So we produced a resource that talks as much about living as it does about dying, eliminating the ageist aspect of later life planning (every adult should at least understand what their options are and preferably have things like a will and power of attorney in place – none of us knows what’s round the corner) and making it relevant for people who think a conversation about death and dying has no relevance for them.

The My Future Care Handbook has received some wonderful endorsements, like this one from Wendy Mitchell…

“I found the Handbook very easy to follow, in a logical order and it covered everything… People in the earlier stages of planning should find this to be exceptionally informative and a prompt for useful guidance and discussion.” Wendy Mitchell, best selling author of 3 books on living with dementia.

… but as easy to use and straightforward as it is, even the Handbook isn’t enough to shift some people from thinking about it to doing something about it. Lots of us need encouragement and support to think through our options, to have an initial conversation – not necessarily with a family member, and then a nudge to get on and put plans in place.

So we developed the My Future Care Buddy Service, partnering people with trained volunteers to create an action plan and see it through. This being 2020/21 with covid virtually eliminating any scope for face-to-face support, our only real option was to speak with people by phone or video call. Thanks to further grant funding we were able to provide this as a free service, offering people up to 4 sessions of up to an hour each, to think through their options, develop an action plan and see it through.

The huge amount of positive feedback we’ve received makes me think we’re on the right track…

“It was very good to have these discussions, to air out thoughts and discuss the positive planning that can be done.”

“I don’t have any family or anyone else to talk to about this so it was really nice to chat it through with you, thank you so much, you have taken a weight off my mind.”

“It brought up a lot of things I wasn’t aware we needed to do. I thought we had already taken care of everything. After working through this with you, I think we can say, we’ve got most of things done now!”

“It’s given us peace of mind. Thank you for making this easier than we expected. It was nice that we were able to laugh and share stories with you and not make it all so serious.”

… but we were only ever going to be able to support a relatively small number of people with our own volunteers, so the next obvious evolution of the My Future Care service was to train staff and volunteers of other organisations, whose members / patients / clients might wish to make plans for later and end of life.

Again, grants have enabled us, within certain criteria and geographical areas, to provide the training free, plus free Handbooks for the trainees and the people they go on to support. And we have partnered larger projects like the Thinking Differently About Dementia project in Sandwell and provided face-to-face training for their Dementia Navigators and Advisers to use the Handbook as part of the support they are providing to their community.

We are not prescriptive as to how support is given, merely that people are not given Handbooks and told to go away and get on with it. Experience has shown most of us need more support than that to get things done. But whether organisations offer one-to-one support like Selsey Community Forum, run groups like Broadstairs Town Shed or a hybrid of the two, we are facilitating an exponential increase in conversations and decision-making around later life, death and dying by enabling non-specialist staff and volunteers to initiate the conversation, using the Handbook as a source of information and structure for the conversation.

Attendees have found the My Future Care Buddy Training useful, enjoyable and thought provoking…

“Loved being able to share and learn from others from different backgrounds/groups.”

“The number of attendees was just right to create that safe and cohesive space where we felt able to share and discuss ideas and concerns. Nancy is a consummate facilitator by creating flow and progression whilst allowing for input and exploring of ideas. I thoroughly enjoyed the training and learnt a lot through the process.”

“A very thought provoking and useful course expertly led by the facilitator.”

…and we have also received some valuable constructive suggestions for improvement which has enabled us to continue to refine the sessions.

And so to the final element of the service… so far! We realised that no amount of training could cover every eventuality or scenario that might arise between Buddies and beneficiaries, and also that acting as a Buddy can be challenging, sometimes even overwhelming. So everyone who completes the training is invited to join our ongoing Buddy Support Programme, with one-to-one access to a highly experienced Buddy, monthly talks by expert speakers with the opportunity to discuss and share knowledge and experiences and to become part of a community of people linked by their passion to improve people’s experience of later and end of life.

So there you have it… the My Future Care story so far. We’re now actively seeking new partners, whether support groups: for carers, people living with dementia or cancer and others, coffin clubs or death cafes, hospices, memory assessment services, social prescribers… you get the picture. In many cases we can provide free training and ongoing support and free Handbooks.

Contact us by email if you’d like to know more, or if you’d just like to buy a copy of the Handbook they can be purchased here. Bulk prices are available.

By the way, Buddy Connect is the newsletter sent to everyone who has completed the Buddy training each month; interested organisations and individuals are also welcome to subscribe.

And the Buddy Companion newsletter is sent to everyone who has expressed interest in making plans for later life or has already made a start: read past issues and subscribe here.

My Future Care is a project run by Mycarematters 2020 CIC, a not-for-profit community interest company.

Buddies in the Spotlight

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 Linda Edwards from Selsey Community Forum (SCF) – a partnership of local voluntary organisations which, in cooperation with the statutory and commercial sectors, seeks to identify and meet local needs. Over the past ten years, the Forum has been involved in starting and sustaining over one hundred new activities and organisations.

We asked Linda to tell us more.

What kind of support does Selsey Community Forum provide?
We support our community in many ways. Our Dementia Action Alliance of local organisations meets monthly and promotes Selsey as a Dementia Friendly town. We also offer Dementia Friends training to all our the businesses in Selsey. We provide weekly “Together Time” activities for carers and loved ones who have dementia and these are sponsored by local businesses. We organise a monthly Film Club and lunch to stimulate happy memories, and our partners at the four churches in Selsey take turns hosting “RESBITE” Sunday Teas with activities including singing and quizzes.

How will the My Future Care Buddy Service help you to better meet people’s needs? 
The training delivered by My Future Care has enabled our small group of Buddies to understand how they can tailor their support for people on an individual basis – whether they live on their own or with a partner, whether they are carer for a loved one or not and whether or not they have dementia.

For example, I visited one of our groups for carers and met a gentleman whose wife had dementia and was finding it difficult to come to terms with the disease. He and his wife had always had a very close relationship but she was not good with strangers.

The gentleman wanted to ensure everything was in place for his wife to be cared for in case anything happened to him. He already had a few things completed like their Wills and Lasting Powers of Attorney but he was interested in the ReSPECT document and some other items he hadn’t thought about. 

I arranged for him to meet me at The Selsey Care Shop where he collected My Future Care Handbooks for himself and his wife. I followed up through several phone calls on Wednesdays – when his wife went to their daughter’s. The husband worked on the Handbooks and saved his queries for our phone calls. He finished both of their books in about 2 months and also completed the ReSPECT document with help from one of our trained members of staff. 

He is a changed man and it seems the cares and worries have been lifted from his shoulders and he can devote all his time to enjoying life and the activities he and his wife do together. 

Would you recommend training as a My Future Care Buddy?
We would recommend the training and support we receive from My Future Care. The support and advice is invaluable when helping different types of people arrange their later life for themselves or their loved ones. 

Everyone is different – some people may need a variety of support to complete the steps in the My Future Care Handbook. Others just need a guide to help them start and complete their plan – with a minimum amount of contact. 

Live-in Care: How to Find a Safe, Skilled, Kind and Reliable Live-in Carer

Thanks to Julia Arnold of Home Care Companions for explaining the different options available, and what to look out for, when finding a live-in carer.

Live-in care is carried out by carers who move into their client’s home and sleep overnight, either long-term or on a rotational basis. They usually work 12–14 hour days with a two hour break during the day.

Carers can be recruited through a care agency, through a care introduction agency or independently through word of mouth or advertising.

Care agencies are regulated by the CQC but clients have limited, if any, control over who will be allocated to them or how experienced or skilled they may be.

Employing a private, freelance or independent carer is an increasingly popular alternative option for those who want more control over who is looking after them.

The benefits are that private carers tend to be more experienced and are often more skilled and capable of running a home and looking after a client without needing supervision by a manager.

Although this is an attractive option, and usually much less expensive than going through a care agency, it is important to ensure enough checks have been done and the right structures, processes and contracts have been put in place.

A good introduction agency will find the very best private carers, check them thoroughly and skilfully match them with their clients, depending on their personality, strengths and suitability for each client. They will then negotiate a fee that both parties are happy with, and provide contracts, structures and processes that will ensure a professional engagement that is likely to be long-lasting, happy and successful.

A good introduction agency should work diligently to ensure they only introduce carers with proven skills, experiences and background checks. Clients should be provided with carers’ full credentials, training certificates, CV, DBS certificate (police check) and references and should interview them either face to face or on video link before making their choice of carer.

If the relationship doesn’t work out, for any reason, or the carer is unwell or has to go away, a good introduction agency will introduce equally professional replacement, cover and peace of mind.

The benefits are that you can have a suitably matched carer who is more skilled, experienced, kind and capable, usually for much less money than a care agency. Once happily matched, a client can keep their carer without the worry of them being ‘moved on’ by the agency and strong bonds can form between client and carer.

Introduction agencies are not regulated by the CQC and there is a risk that some services don’t check their carers properly or match them with suitable clients. This of course applies to care agencies as well; CQC registration does not guarantee a quality service.

The key to peace of mind is to know what questions to ask and to ask lots of questions.

Anyone looking to hire a private, freelance or independent carer can get free advice from Home Care Companions on 01403 711 639 or via their website: https://www.homecarecompanions.co.uk   Home Care Companions is a leading introduction agency that covers England Scotland, Wales and Northern Ireland.

If you find your own private carer and want advice on putting thorough checks and processes in place to protect your loved ones, Home Care Companions offers a 10-point background checking service.

 

‘Shedders’ use the My Future Care Handbook to make plans for later life

We recently started to offer training and ongoing support to organisations wishing to help their members / clients / patients make plans for later and end of life.

We have already trained staff or volunteers of over 20 organisations throughout the UK, all using the My Future Care Handbook as a source of information and structure for the conversation. Thanks to grant funding we’ve been able to supply training and ongoing support free to many of them, including free Handbooks for the people they go on to help.

One of the first organisations to sign up was Broadstairs Town Shed (Shed of the Year 2022 no less!) which offers older people, of all genders, a space to work together on woodworking projects, where they can learn, share skills and socialise together.

We asked them to explain how they’d be using the My Future Care Handbook with their members.

Who does your organisation support and what kind of support do you provide?

By creating a safe, welcoming space which is focused on woodwork, carpentry and craft, our members are able to get out of the project what they need. For some the project is a place to drop in for a cuppa and chat. For others it is a lifeline, helping them reintegrate into the community after a significant life event such as bereavement, stroke, PTSD or a mental illness. We offer a no time-limited programme of help and support – we are here for our members when they want to come.

One of the key benefits of the Shed project is that people feel that their skills are being used and appreciated. It helps our Shedders retain the role of productive and valued community members, combating loneliness and that sense of invisibility.

How will My Future Care Buddy training enable you to better meet the needs of the people you support? 

As the Shed has grown so has the support we offer our members.  By working with local community groups and health providers we have created our Nourish & Flourish wellbeing programme.  The Shed is a ‘family’ with a wealth of lived experience, where everyone is there to support each other, especially through difficult times.  We’re mindful that many of our Shedders are Carers, looking after loved ones, as well as a membership demographic who need to be considering their future care needs.

Through group sessions, professional presentations and one to one drop ins we’ll be working through the My Future Care Handbook.  From the initial presentation, introducing the Handbook, the response to be involved has been overwhelming with over 70 signed up and more asking to join the programme.  This is early days for us, as we’ve only just embarked on the journey, but we’re excited to see where it leads.  As we work through this first phase, we’re looking ahead at the possibility of becoming a community hub for others to access this service.

Would you recommend the training to other organisations? And why?

Absolutely.

Sadly, you only fully appreciate the significance of the My Future Care Handbook when you speak to those who weren’t fully prepared for the complexities, and the emotional impact, of decision making awaiting them, but too late to ask.

Through tackling this with a group dynamic our Shedders are free to move at their own pace but know that their friends are going through the same process.  They’re there for each other, with the buddy system support, to have these much-needed conversations and share their thoughts.  As a group it takes away any taboos and facilitates an environment of support: no one’s alone.

Life Celebration Books – a gift for your family

We’ve always said that making plans for your future is a gift for your family. Here’s a way to do that whilst creating a fantastic book for future generations to see.

Life Celebration Books are a wonderfully creative way of approaching later life planning. They’re designed to record your best bits- the stories you’d want to share in your eulogy. Lists of your top music tracks, and readings that hold a special meaning. Pictures of favourite flowers. Photos and video clips of how you’d like to be remembered.

The creative process of making your book offers immediate well-being benefits. Then, once your book is complete, there’s a great satisfaction in knowing that loved ones will have everything they need to make funeral planning easy. They’re also a fantastic gift for future generations- a chance to preserve family history and lovely way of sharing words of wisdom- your views and values.

These Life Celebration toolkit makes creating these books easy and enjoyable. You’ll be matched with a Life Story writer who will meet with you online, guiding you through the process. They will then handle all the design and printing, arranging for your finished Life Celebration Book to be delivered to your door.

Prices start at £250 for the toolkit, 3 online meetings and a 26-page book.  For more information call Rachel on 07583 297432 or see their website, www.presentingyourpast.com

Plan with Care act on Bill’s behalf to enable his mum to flourish

We love the Care and Wellbeing Service offered by Plan with Care. Alise, Head of Wellbeing at Plan with Care, tells us more.

At Plan with Care, we provide ongoing practical and emotional support for older people so they can thrive. We provide live-in care and day time at home (if needed) and we also support people living in care homes.

For us it about so much more than providing care: it is about improving wellbeing in addition to care needs being met. We look holistically at what brings people pleasure, their relationships, and the things that are meaningful to them.

  • Plan with Care supports Alice on a day-to-day basis on behalf of her son, Bill, who lives abroad.
  • Alice’s Care and Wellbeing Consultant liaises with all the professionals involved in Alice’s life – mental health professionals, social services, domiciliary care agencies, GPs and pharmacies.
  • Bill is consulted about all decisions affecting Alice.

Alice lives at home alone. Her son Bill, who she is very close to, lives abroad. He got in touch with Plan with Care when he was visiting one Christmas and realised she needed much more practical and emotional support than she had let on. Bill also suspected she was starting to live with dementia.

He started the search for support, but was quickly overwhelmed with the number of different people he was told to get in touch with. Knowing he was returning home in a few days, he contacted Plan with Care and said that he wanted to someone to act on his behalf on a day-to-day basis but who would communicate closely with him about all decisions.

Power of Attorney

As Alice and Bill’s Care and Wellbeing Consultant, I immediately encouraged Bill to apply for Power of Attorney (POA) for Alice’s finance and property, and health & welfare. Alice herself was relieved to know her trusted son would be taking over some of the paperwork on her behalf as this was piling up in her late husband’s home office. Once the POA was registered I was formally given permission to chat to all the professionals on Bill’s behalf.

Building relationships and trust

Alice was struggling with severe depression and paranoia. Although we bonded immediately over our mutual love of singing and nature, it took several visits before I felt she really trusted me and understood that Bill and I were acting as a team together to ensure she would continue to live the life she wanted to live.

It wasn’t about anyone ‘taking over’ (as she feared) but just the opposite – it is about listening carefully to what she wanted for her future and discussing how I could help make this happen. But for Alice it was (and still is) particularly difficult to admit this. She could always come up with an explanation for why things weren’t quite as they should be at home.

Day to day support

Over the years I have liaised closely with mental health professionals, social services, domiciliary care agencies, the GP and pharmacy, and local friends, charities and clubs, to ensure we’re all rallying around to keep Alice as safe, comfortable and joyful as possible.

Bill has peace of mind that all this vital work is being done, but with him consulted and copied in at all times. This enables him to get on with his busy family and work life abroad. For so many families we hear how critical this is – that people get to return to their role as ‘daughter’ or ‘son’, and let go of the full time ‘care and wellbeing management’ roles and tasks.

Two years later and we are at the point of a ‘Best Interests’ meeting where a range of professionals, myself and the family meet to decide how best to support Alice to continue to flourish alone at home – as has always been her wish. It isn’t easy – Alice isn’t always safe at home, but the risk of extreme distress to her of having live-in care or moving into a care home has so far been weighed up as too high. It’s an ongoing calculation, with Alice’s wellbeing at the heart of it.

info@planwithcare.co.uk

www.planwithcare.co.uk

Results are in…

It was back in September ’21 when I wrote here about why we set up the My Future Care Buddy Service. By then we were in the midst of a pilot and were busy collecting data from the 35 people who eventually completed the programme.

Supporting people to create an action plan around later life planning and then helping them to see it through is not a quick process but it IS extremely rewarding. It was exciting to see some of those lightbulb moments when, for example, people realised that thinking about the future is not just about  them but can also remove a major cause of stress for their family. We heard how the My Future Care Handbook helps take the heat out of a conversation about the future because it makes it feel like the obvious thing to do. And as the statistics started to come together we saw not only that people we were supporting felt better informed and had created some key documents, but their sense of wellbeing had improved as well.

The key findings are below. If you’d like to see the full report please email us.

  • The percentage of people…
    • feeling well or quite well informed about the decisions available to them regarding later and end of life care increased from 50% to 88%.
    • who felt well or reasonably well prepared for later life and end of life care increased from 30% to 100%.
    • who rated their quality of life as good or very good increased from 64% to 75%.
    • who rated their quality of life as fair or poor reduced from 36% to 25%.
    • who had had a full discussion with the person / people closest to them increased from 18% to 86%.
    • who felt it was very important to document decisions about later and end of life increased from 65% to 88%.
  • People’s mental wellbeing score improved from 48 to 77 (max 105).
  • Across 8 documents, the average percentage of documents that people had in place increased from 34% to 67%.
  • 100% of participants said they found the service to be very useful.
  • 100% of participants said they found four sessions to be about right (not all used all four sessions but were grateful it was there if needed.)

On the strength of those results we have now secured funding to deliver the service free to individuals and organisations in the south east and in slightly more restricted circumstances in other parts of the UK.

Whether you are an individual seeking support to make some plans for later life, or an organisation wishing to secure Handbooks and support for your members / patients / clients click here or email us further information.

For the dates of the next online group sessions, click here.

Calling on potential Buddies!

Updated 17th August 2022

Would you like to support people wanting to make plans for their later and end of life? Are you a good listener with a positive outlook on life and believe that it is never too soon to have a conversation about the future?

We are looking for volunteers, with a couple of hours a week available, to train as My Future Care Buddies. We are particularly keen to hear from people who identify as part of a community, whether faith, sexual orientation, gender or any other, who would like to support others within the same community.

The role of a Buddy is to offer support and encouragement as people think about and work on their plans for later and end of life. You don’t need to have your own later life plans in perfect order. You may even find that it helps you to do the same! You will not be expected to give advice and you will use the My Future Care Handbook as a structure for your conversations.

You will be paired up with a maximum of six people at any one time and will spend up to 3 x 1 hour with each person on Zoom, with calls spaced approximately three weeks apart. You will arrange mutually convenient times with the people you are supporting for each call.

No qualifications required, though experience of working with people in some capacity would be an advantage. Full training and ongoing support is provided.

Our next training sessions are coming up soon so if you’d like to hear more please email info@mycarematters.org without delay and let’s have a chat.

Next Buddy Training sessions: Tuesday 20th and Wednesday 28th September 2022, at 10 am for 1.5 hrs each day.

 

Learning Objectives – on completion of the course attendees will

  • Understand the relevance and value of advance care planning
  • Have a working knowledge of advance care planning tools and documentation
  • Have a working knowledge of coaching techniques
  • Be familiar with the contents of the My Future Care Handbook
  • Be able to support an individual to identify and meet their goals around later life and future care planning, using the My Future Care Handbook as a framework

Hospital visits: necessity or nice-to-have?

Daughter visiting mother in hospital

Hospital visits are in jeopardy again in certain parts of the country. It is easy to understand why hospitals wish to reduce risk of spreading the virus, but the damage done to confused and scared patients is often irreversible when no-one is on hand to speak on their behalf. A hospital stay for someone living with a condition like dementia is already traumatic enough, and at a time of immense pressure on hospital staff who clearly cannot be expected to find the time to sit with a person and reassure them, odds are a stay in hospital will significantly worsen their condition.

No hospital wishes to send home a patient in a worse state than when they arrived but sadly that is often what happens, even prior to the pandemic. It is the worst place for a person with dementia to be, and the longer they stay the lesser the chance they’ll have the same level of independence on returning home, or even be able to return home. Dementia is rarely the cause of a person going to hospital, but it is often the reason they can’t leave.

Many hospitals have signed up to a code drawn up by Johns Campaign that gives carers the right to stay with their loved one. Covid should not be a reason for withdrawing that right (obviously subject to a negative test) but it appears to be happening. Even where the hospital policy allows for exceptions, the message may not make it down to ward level and primary carers are denied access.

On the other hand, it is not always practical or possible for a carer or family member to be at their loved one’s side 24/7. I fully admit to a sense of relief at the prospect of an uninterrupted night’s sleep when my late husband Geoff was admitted for an operation that required an overnight stay. At the time I had no idea of the potential for disastrous consequences a hospital stay can have for someone with dementia, but I also had other commitments that meant I could not have stayed with him even if it had been offered.

I would always encourage carers to request the right to be with their loved one if their circumstances allow. Hospitals need to recognise the value of a carer’s presence for the wellbeing of the patient.  But there are other things relatives can do to mitigate the effect of a hospital stay, such as sending in with the person photos and familiar items that may give them comfort. Best to avoid irreplaceable items when possible however, given the tendency for things to be misplaced.

There have been some excellent blogs written on this topic, amongst them this one by DementiaWho: https://dementiawho.com/dementia-hospital-emergency-go-bag/

Finding a way to share information about the things that matter to a person can make a big difference. There are a number of resources available to help, including the one I developed in the light of Geoff’s experience, called the Mycarematters profile. I created it online because of the numerous times I heard about paperwork being lost or left behind, plus it makes it easy to update and share. It can be viewed online by anyone with your name, date of birth and Mycarematters code. It can also be printed out and is designed to fit on one side of A4 because staff do not have time to read a long document, and a single sheet of A4 can be displayed by the bed.

Whichever method you use, providing information about a person’s needs and preferences when they are not in a position to communicate those things for themselves can help hospital staff avoid exacerbating what is already a stressful situation.

And of course, this is not just about people with a dementia diagnosis. Any of us can end up in hospital and may temporarily be unable to communicate. Creating a profile of your needs and preferences is one of those tasks we should all complete. We include a paper version of the Mycarematters Profile for those not wishing or able to use the internet in the My Future Care Handbook.