Values and feelings about aging and dying

• Is there someone in your life whose approach to aging and dying has inspired or impacted you?

·       What did you see in how they aged and died that you liked? What didn’t you like?

·       What difference did the way they handled the end of their life make for the people around them? 

·       Is there anything you want to do differently?

• Do you think your family and friends talk about death and aging in a healthy way? What is good?  What isn’t?  What would you change?

• Is there any value in feeling sad, fearful, angry or uncomfortable sometimes when we think about aging and dying?  Or should we try to be positive and hopeful as much as possible?

• Do you agree that thinking about death can help us live more fully? Why or why not?

• Have you had any experiences in your life that have changed your perspective on death, illness or old age? What did you used to think?  What changed?  Why?

The way you want to live now (having fewer regrets and more joy)

• What do you value most about the way you are living life now? What brings you joy?  What comforts you?

·       How often do you talk about what you value most with the people in your life?

·       How do you imagine you might keep some of these things as you get older or frailer? 

• Who in your life is important to you?  Do they know it?  How often do you tell them why they matter to you? How would you feel if you die without them hearing this from you? 

• What are you avoiding or turning away from in your life now?  Why?

·       How will you feel if you never deal with these things?

·       Who do you talk to about this (or who could you talk to)?

·       Who or what might help you to be braver at looking at these things?

• Are there a few small, simple gestures of love and gratitude that you want to make for the people who matter to you right now?  What is stopping you? 

• Is there anyone you want to say sorry to?  Is there anything you need to repair or put right?  When are you going to do this? What is holding you back?

• Is there anyone you want to forgive or a situation from the past that you want to make peace with?  When is the right time to do this? What is holding you back? 

• What do you wish you were doing more of in your life right now?  What do you wish you were doing less of?   What could you give up or do a bit differently so that you have more of what you want in your life?

• When you look at your life now, what are your ‘if onlys’?  Do you want to do anything about these?

• What are the most important and fulfilling conversations that you have now?  Why do they matter?  How could you have more of them?

Offering and asking for help 

• When do you think it’s ok to offer help to someone you know who is dealing with illness, aging or dying?  When is it ok to for us to ask for help for ourselves?  When is it usually best to just stay quiet and not ask or offer help? 

• Think about a time when someone (or a group of people) helped you. 

·       What was good about the help you got?  What wasn’t? Why?

·       What do you think are useful ways to show up for other people?  What’s not useful? Why?

·       Have you talked with your family and friends about what ‘good’ help looks like and feels like for you?

• How can we be better at listening to what sort of support and care people really want and need from us?

·       What helps us speak up more about what we want and need?

·       What stops us speaking up?

·       What stops us from asking and listening?

Getting older and frailer

• What do you think is valuable or precious about old age?

• How do you imagine the last few years of your life will look and feel (as you slowly grow more frail or ill)?

·       What will be the same and what will be different? 

·       What will be most important to you?

·       What are you looking forward to?

·       Who will be with you?

·       How might years of your frailty or ill health impact the people you care about?

• What do you think will matter most to you when you are 80 or older? Try ranking the following in order from most to least important

·       Medical care and medical decisions - staying as well as possible, living as long as possible, getting the best physical care.

·       Relationships and connections - being with people, having the right people around, giving and receiving love.

·       Having a purpose and making a contribution - being useful, being valued, sharing wisdom.

·       Activities and experiences - where you live, what you are doing, ticking off your bucket list.

·       Making peace, putting things right - forgiveness, repair, gratitude.

·       Making space and releasing resources - making time for others, letting other people take the limelight, giving away belongings and money to others, not being a burden.

·       Something else

• What could you do right now (or let go of) to make it a bit more likely that you have more of what matters most to you when you are older?

The care and support you will want and need when you are older

• What help do you think you will need from your friends and family when you are sick, old or dying?

·       Who will you live with? Where will you live?

·       Who will help you shower and go to the toilet?

·       Who will do fun things with you and bring joy and laughter?

·       Who will let you be sad, listen to your fears, and cry with you?

·       Who will take you to appointments and help you with medical decisions?

·       Who will help you with housework, gardening and cooking?

·       Have you spoken to people about these expectations?  Do you all agree?

·       What might you be avoiding talking about with those who are closest to you?  Why? What could you be braver about?

• How do you feel about getting this type of help for years, not just weeks or months?  Who will be doing it?  Who will be paying for it?

•  If you had a magic wand, what are the sorts of care options that you would want to see in your community?  How are they different from what there is today?

• How do you feel about ‘being a burden’? 

·       What is too much to ask of your loved ones as you get old, sick or are dying? 

·       How long is it reasonable to expect a loved one or friend to care for you?

·       When have you been (or seen someone else be) burdened by caregiving?

• What do you think are the joys and pleasures in caregiving and helping?

·       When have you got pleasure, respect or purpose from caring for someone else?

·       When have you felt good by expressing your love through caregiving?

·       How much do you agree that it can be a gift to allow other people to care for you?

Becoming a caregiver 

• What do you think it is like to be a caregiver in your community right now? 

·       What do you see working well? 

·       What isn’t working so well? 

·       Are there a few small things that we could do as ordinary people to make things a little bit easier or better for caregivers?

• Are you likely to be a caregiver for someone else if they get sick, as they get old or as they are dying?   

·       Who are they?   

·       Have you spoken with each other about your expectations and how you both imaging it might work? 

• How do you feel about becoming a caregiver?

·       What are the things that will matter most to you when you are a caregiver for someone else?

·       What if you have to be a caregiver for many years? 

• What help and support will you want or need as a caregiver?  Who will be there for you when you are a caregiver? 

Making sense of aging and dying

• What do you hold sacred?  How do you hope this will show up or support you as you age, get ill and die?

• Is there anything that you think is beautiful, important or positive about death, illness and aging? What? Why does this matter to you?

• Is the idea of ‘letting go’ useful for you? What does ‘letting go’ mean to you?  What could ‘letting go’ look like for you or your loved ones? 

• What does hope mean to you (other than hoping for a cure or hoping never to die!)?

• Are there any ceremonies, rituals or practices that give you comfort and bring you peace?

·       Which people, places or things help you to do these? 

·       What could help you maintain these when you are old or ill or dying?

• When is it good to fight death, illness or aging?  When is it good to accept it?

•  What do you think causes the most suffering in our old age and as we die?  What could we do about this as families and communities?

• How often do you speak to other people about this stuff?  Do they know what is important to you?  Do you know what is important to them? 

The bigger picture

• In many countries our population is aging fast. 

·       What do think having lots more older people (and fewer working age people) will mean for ordinary families, workplaces and communities? 

·       What might it mean for things like pensions, health care systems and retirement age?

·       What might we need to change or do a bit differently?

·       Are we prepared for this? What might good preparation look like?

• What laws or policies would you want to see changed so that your community has more of the acre and support systems you think are important as we age and die?

• Is it ok to say that some types of care or some types of medical intervention are too expensive or too much of a burden for taxpayers to fund? 

·       Should we set limits on the amount of money and other resources we will put into aged care and health care? 

·       Is this a decision we should make together (through law and policy) or is it up to each doctor and each individual to make these sorts of decisions by themselves?

• How much do you know about how aged care and palliative care works right now? 

·       Are there some assumptions you want to check out or do some research on?

·       What do you think is working well?  What isn’t?  What do you want to see changed?    

• Does anything worry you about unfairness in our aged care and health care systems? 

·       Women traditionally do most of the caregiving in our societies (both paid and unpaid).  Is this still true in your family and your community?  Why does caregiving have such low status and a low wage rate in our society?

·       How do you think poverty impacts choices around healthcare and caregiving for families in your community?

·       How do you think race, racism and cultural differences impacts how we get old and die?

·       What could we be doing together to make things better for each other?

• Across the world, health care systems are estimated to be high up on the list of industries that have a negative impact on our environment and contribute to climate change. Health care is estimated to have a bigger environmental impact than either aviation or shipping

·       Should we consider the environment more in our decisions around aging, illness and health care?

·       Are there any trade-offs or sacrifices that you might be willing to make to reduce the environmental impact of your illness and aging?