Overcoming reluctance to talk about the future

Every month we run an online Buddy Support session where we discuss a specific topic, sometimes with specialist speakers, to further strengthen our knowledge and to share our learning and experience. We tend to record any speakers for those who can’t attend to watch later, but not the discussion so people can feel relaxed about participating fully in a safe space. These sessions are open to anyone who has completed our My Future Care Buddy training.*

In May our topic was how to encourage people to do some later life planning when they are reluctant to do so. Nancy has had a lot of experience of this as our most experienced Buddy and she shared some of her experiences and how she saw people, initially reluctant and unconvinced of the value or relevance to them, go on to fully embrace the project. I spoke about some of what I’d learned during the five years I have been researching this topic and we had a rich and constructive conversation amongst our attendees.

These are some of the points that came out of the discussion…

  • Don’t think about the conversation you want to have as being about dying well, but living well. It immediately becomes a whole lot easier if the focus is on things that allow a person to live their best life possible.
  • Start small. Think grab handles not funeral plan. If someone has made it clear they don’t want to talk about or make plans for their future, it is not unreasonable to ask if they have left a spare house key with someone in case something unexpected happens. Find something that is easily achieved, is relevant to them and might offer a stepping stone to other topics.
  • Pick the right time and place, though this might require a bit of creative manoeuvring if the right time and place prove so elusive the conversation looks unlikely ever to happen!
  • Be curious – read between the lines, try to understand what it is that is not being said. Use silence, really listen. Reluctance to plan may be a fear of the unknown, a lack of understanding of the options and decisions available.
  • Use personal experience or stories of other people’s experiences to explain why this matters to you, why you feel so strongly about the importance of making plans. Ensure that any experience or story you share is relevant and will resonate with them.
  • Talking about a stay in hospital rather than end of life might reveal a person’s preferences for their last days or hours without broaching the subject of death directly, if they find that challenging.
  • Secure their trust, find ways to demonstrate you are raising this because they will benefit from what you have to say.
  • Life story work may be a practical and gentle way to open the subject.
  • Consider whether there is someone else they might prefer to talk to, to overcome any cultural or language barriers.
  • Finally, there must always be a judgement call as to how hard you push someone to have the conversation if you have tried everything above and they are still reluctant. It is of course entirely optional as to whether a person makes plans for their later life and for some it may be so distressing that it is not in their best interests to continue pushing the subject. Having said that, we have not yet had anyone we have supported say they felt worse as a result of getting some plans in place, and most are pleasantly surprised by the sense of achievement and peace of mind gained.

*If you support people who might benefit from making plans for their later and end of life and you’d like to help them with that but feel you don’t have the skills or expertise to do so, we offer training, ongoing support and, within certain criteria, free Handbooks, providing you with a source of information and structure for the conversation. Email us for further information.

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

11 tips for staying independent with dementia

A sunflower with each of the 11 tips in the article written on one of its leaves

This is an extract from a post by DementiaWho.com. We are grateful to DementiaWho for sharing it with us and hope it will help anyone who has recently received a diagnosis of dementia, or is supporting someone who has. 

You know, that old adage: use it or lose it, well that applies particularly with dementia. The ability to stay independent with dementia for as long as it’s safe to do so is key in fighting this cruel disease. I’ve seen it with my mum with Alzheimer’s, when she stopped walking fearful of falling (one of the first signs for her) and how that led to confidence issues in her abilities and it began the start of her decline.

A dementia diagnosis is only the beginning of this new life, things will change but staying independent is important. It’s important for someone with dementia to set boundaries, to have their wishes respected but also have the ability to listen to others when the time is right.

Here are some tips to help you stay independent living with dementia.

1. Make Plans for the future

Thinking about the future is tough, but it is an important step in staying independent with dementia. Now is the time to put in place the legal, financial, health and lifestyle considerations you want. It’s best to do this at the earliest possible opportunity once diagnosed if you haven’t before. It allows you to express your wishes, choices and preferred options. It reduces stress for you in a sense as you have offloaded those things that could cause anxiety for you in the future

It is a lot to think about and there are many resources that can help you navigate the process. I would recommend the My Future Care Handbook. I’ve attended a course run by Mycarematters where they guide you through the handbook. What’s great about it helps you to prioritise what’s important to you and that helps guide your journey through the handbook. It’s a one-stop information resource for all your future planning needs. You can work through it online and set up a my care profile that can be shared digitally. Highly recommend it!

2. Make Notes

A notes system to keep track of your daily activities or to share information about you is one way to stay independent. You can use wipe off notice boards, a diary, post-it notes, smartphone note functionality, or calendars etc.

Most people have some form of reminder system in place to help them remember important things. That’s no different for someone with dementia. Use post-it notes or signs to identify cupboards, draw contents, and label clothes drawers. Have a reminder notice by the door to remember to pick up keys, coat etc. There are different ways of making notes that can help someone live more independently. Dementia caregivers can also help by writing up reminders on notice boards.

3. Keep a Diary

As time goes by, recollections of the day’s events or people you meet may begin to fade. By keeping a diary you’ll be able to note down what you did, who you met, how you felt and more. These diary entries can be a great tool to help with your memories or just bring you joy in reminiscing of previous events. You may not be a dairy person, so using your calendar could give a similar but less detailed overview of how and where you spent your time.

4. Stay active, positive and maintain a social life

Staying active, positive and doing things you love help maintain your quality of life. These days there are so many positive examples of people living with dementia and these beacons are slowly changing the landscape & perceived stigmas associated with dementia.

One person with dementia is one person with dementia.

We are all different, at different stages of dementia and can’t be treated as one homogeneous group. Some may find it difficult to deal with your diagnosis, whilst others will take it in their stride. Maintain those friendships as best you can

5. Online Tools

You may find it difficult to go to supermarkets depending on the type and stage of dementia you are in. The noise, getting there, finding your favourite foods might become impossible now. If you can use an iPad or a phone you can do online shopping, banking, pay your bills and many more things to make life easier. If you find these devices too difficult you can turn to family, friends to help. You can use a shopping app or make a list using good old pen and paper or have a family or friends do your ordering for you.

6. Daily Routines

Establishing routines at the beginning helps cement and lay down patterns for day to day living. One of the things we established with mum is that she is much more active, outgoing in the morning. By mid-afternoon, her anxiety increases and sundowning kicks in. As a result, we do more physical stuff, make appointments, and do activities together in the morning. You can schedule your activities to fit YOUR best times of the day and build daily routines around those times. 

This is an extract from a post by DementiaWho.com. You can read the rest of the 11 Tips for staying Independent with Dementia by  clicking here.