The Mother Of All Lists

One of the most important lessons is that we need to talk about death. We need to plan for it. We need to talk openly and honestly to our kids about it. We need to embrace end of life in the same way as we embrace its beginning.

One of the reasons Louise Winter and I created Life.Death.Whatever was to encourage people to talk. Our aim was to help redesign the dialogue around death and dying and to open up the subject. We want to normalize mortality in the hope we’ll all be able to live more meaningful and richer lives.

In Life:

Be kind. Be really kind. Walk the long way home sometimes. The scenic one. Slowly. Don’t sweat the small stuff. No one really cares about your artisanal lampshade, carved from reclaimed wood by local artists that you bought from an independent store in the newly gentrified commercial street in the most up-and- coming area of Brixton.

People just care about you. As the Moldy Peaches sang, “I’m in love with how you feel”. It’s not about what you do, it’s about how you feel.

Choose your battles. Before you get into the fight over that thing – you know the one (although you won’t by the end of the row). Think about if it’s really worth it. Does it really matter? If it does, great. Fight away. If it doesn’t, don’t. In either case, always make up. Always. One day you might not get the chance.

Stand up for what you believe in. Unless you’re a dick, of course. Shout about what’s really important. Call out the bully. Be a good person. Help other people and be a voice for those who don’t have their own. They’ll appreciate it, even if they’re quiet.

Do the right thing, not the easy thing. If the easy thing is the right thing, you can probably take the rest of the day off.

Stick around even when times are tough. Especially when times are tough. Pay people compliments. Proper, heartfelt, genuine compliments. You know they’re lovely to receive. Remember how lovely they feel to give.Give flowers. Bake cookies. Don’t just tell people you love them, show them. Actions really do speak louder than words.

Always try. Even if you fail, it’s the trying that really does count.If you do fail, fail spectacularly.Always tell and show your people how loved they are, how important they are and how invested you are in them.

That old adage about never going to sleep on an argument may be impossible in real life. What is possible is to say ‘I’m really pissed off with you but I love you nonetheless’. Remember all the other wonderful things you’ve done together.

Be prepared to let things go. Don’t wait for tomorrow. Do today.Hugs aren’t the sole property of couples. Hugs between friends, without an agenda, can heal.

Shit happens. It’s how you deal with it that’s important and how you move on.If you haven’t coped well with something, learn from it. Admit you were wrong and acknowledge it, and forgive yourself. We’re all human.

Life is too short for some and too long at others. In either case, don’t take it for granted. One day, it’ll all be over.Life really can be bloody unfair. We invented the whole idea of fairness to try and hide this fact.Life is what you make it. I’ve seen young people with a life-limiting diagnosis fit more into their final six months than some octogenarians.

Do what you love. That is all.Quit the job you hate. Retrain. Regroup. Reassess. Don’t settle. You are in control. You get to decide. Don’t just let you life happen to you. Make decisions. Make the life you want.

In Death:

We are all going to die.You too.Death is one true inevitability. There’s nothing more certain in this world than mortality.Talking about death and dying won’t make it happen any faster.Avoiding it won’t make it any slower.

Discussing death and dying isn’t morbid, or creepy. Done right, it’s life- affirming and uplifting.

Acknowledging mortality does not make you a goth. No, I don’t sleep in a coffin and yes, I do venture out during daylight hours. Kids aren’t scared of death and dying if they’re helped to understand it. Thinking the dead dog went to live on a farm doesn’t help them. Don’t project your own fears onto them. Let kids ask questions and answer them honestly.

Don’t use euphemisms: no, granddad is not sitting up in the clouds playing tennis with Abraham Lincoln and Great Auntie Marjorie.Granddad died. Great Auntie Marjorie died. Einstein is dead as shit. Dead people can’t drink cups of tea and not even Wonder Woman can sit on a cloud. Euphemisms prevent true understanding. Be straight. Be honest. Be gentle.

Doctors, take note: don’t say to someone ‘there’s nothing more I can do’ because all too often that gets translated as ‘I can’t help you anymore, but maybe there’s someone else who can.’ Give everyone the opportunity to say goodbye.

Goodbyes can be hard. We need to talk about death and dying. We need to plan for death and dying. Death and dying needs to be a part of our education. As early as children can possibly understand the words.

We cannot cure death. We can make sure people live as happy a life as possible – right up to the end. We need to help those we leave behind. We need to make death into something we can all live well with. People want to talk about death and dying. They just don’t know how or if they’re allowed. Let’s talk.

Grief:

Grief does not have five stages. Grief is a messy, chaotic splatter of pain and suffering, and each is unique. Grief lasts a lifetime. We all cope in different ways. Never ever judge how someone else manages their own grief. Don’t assume they’re not grieving because they’re not doing or saying the things you’d expect.

Do not judge anyone for ‘moving on’ and finding a new life (or relationship) quicker than you’d expect. It’s not a reflection of the depth of their love for the person who has died.

The legacy of someone you love lasts a lifetime. Be prepared to carry them in your head and heart forever. Never tell someone they ‘should’ be ‘over’ it by now. Never.

When someone you know is grieving, don’t be afraid to say you have no idea what to say or do. No one expects you to. The depth of our grief is often directly proportional to the depth of the love you felt for the person who died.

“Disenfranchised grief,” describes the grief that society doesn’t acknowledge. It doesn’t make it any less painful or tricky. A home, a pet, a celebrity. It’s not irrelevant because it’s not a family member.

“Anticipatory grief” is the grief we feel when we know someone is going to die. It can also be the fear we are going to lose something or someone – even if those feelings aren’t based in reality. We don’t just grieve the life. We grieve lost love, lost friendships, the loss of our youth. Grief touches much more of our lives than we sometimes realise.

You never ‘get over’ someone you love dying. You may learn to live with it and without their physical presence, but you’ll never get over them. Say their name. Tears are not weakness. It’s ok to cry, and there’s no limit to the tears you’re allowed to shed. It’s ok to make someone cry by talking. You didn’t do anything wrong.

Don’t tell someone you understand what they’re going through. Even if you’ve been through what you think is a similar situation. You don’t. Every grief is different. Don’t compare.

There are no right or wrong ways to grieve. Show up after the funeral flowers have wilted. Set reminders to remember birthdays, anniversaries and important dates. Your life will quickly go back to normal; the bereaved has a new life to forge. Be there for the long haul.

Make food. Delicious and healthy food that can be put in the freezer.

Tell them stories of what their loved one meant to you. It’s lovely to know the person you loved had an impact on other people too.

When someone dies, the bond we shared with them doesn’t. A mother whose child has died doesn’t stop being a mother.mRemembering and honouring the person who has died doesn’t prevent moving on. It can be healing.

“Growing around grief” is a lovely model of grief that not enough people know about. Tonkin believes that the grief we feel for someone we really love never gets any smaller and it never diminishes but the life we carry on living grows around the grief and bolsters and comforts us from it.

No matter how hard something is to manage, the sun will come up in the morning. Life does go on. Grief really does come in waves. Calm seas, followed by huge waves that feel like they’ll drown you. Try to remember the desperation you are feeling right this second will fade. It will no doubt return, but that’ll fade, too.

You cannot rush grief. Give yourself the time you need, don’t ever try to hold yourself to an arbitrary timeline. Think carefully before making life-changing decisions too soon after someone significant to you dies.

Treats help. Nice things help. Nice people help. Never be afraid to ask for help. Never be afraid to ask for company. Friends may not want to intrude on your grief.

Note to Friends: intrude, gently and considerately – keep intruding, frequently and with love. Being there for someone who is grieving isn’t an intrusion at all. They might not be ‘good company’ but include them in your life. When they turn down your nine hundred and ninety-ninth invitation, ask your thousandth. Hold their hand. Walk their path. Help them find their new way.

Dying:

The thing most people are scared of about dying is being in pain. We are much better at helping control pain nowadays. We’re not perfect at it, and it can take time to find the right combination of medications but pain meds are much better and generally really effective.

It’s essential to have open and honest discussions with the whole health care team. Tell them how much something hurts. Share your worries and fears. Don’t underplay what’s going on. If they don’t know, they can’t help.

Never feel that you’re complaining. Never feel you’re being difficult. Ask for the things you need.People want to help. Let them. It makes them feel better about the world and themselves.You are not a burden. YOU ARE NOT A BURDEN.

For all the doctors and nurses reading this: tell us your name (thanks Kate Granger for the wonderful work you did with the #hellomynameis campaign and for Chris Pointon who has brilliantly carried it on). The patient in bed 7 with lung cancer is not called ‘Lung Cancer Bed 7’ Treat them like the person, don’t treat them like the disease.

Remember the medical team: listen. Ask questions. Ask them what matters. Ask them what’s tolerable. Don’t assume anything. Be human. Be warm. Be kind. Don’t stand up and loom over your patients. It’s intimidating at the best of times but even more so when you’re very ill and vulnerable. People who are dying don’t have much time, so give them yours graciously and willingly.

Carers play a HUGE role and they need to be respected and included. Medical jargon helps nobody who isn’t a doctor. Always be honest. Warm, gentle, caring – but honest.

BJ Miller is a rock star of the palliative care world and we need to clonehim. Same goes for Atul Gawande. Listen to his Reid Lectures and read Being Mortal: it might just change your life. Doctors, read ‘When Breath Becomes Air’ by Paul Kalanithi M.D. – the story of his terminal lung cancer.

Illness is not a battle that we can choose to win or lose. Illness is a thief of life; it is not a fair opponent. People don’t die because they didn’t fight hard enough. They die because their illness was an absolute motherfucker and they never stood a chance.

Palliative care is NOT end-of-life care, it’s comfort care and people who are given palliative care from the point of diagnosis can live longer and more comfortable lives. Palliative medicine is awesome! We need more palliative care doctors. We need more hospices. Hospices need better funding.

Just because the UK is deemed to provide the best end-of-life care in the world doesn’t mean we are good enough at it, it just means we’re not as awful as all the other places.

Doctors go to medical school to be the heroes that cure. We need the medical profession to see the students who choose to specialize in palliative and end-of-life care as equally heroic. Some doctors see the death of a patient as their failure to keep them alive. It’s time we stopped seeing death as a failure. Death is a natural part of life. Every single living breathing creature has a shelf-life and an expiry date. Death is not failure.

Dying is not like it is in the movies. Dignitas is NOTHING like it is in the movies. I loved ‘Me Before You’ but they got the basic fundamentals of Dignitas SO wrong. Come on Hollywood, you need to do better.

It’s really important to make a will. It’s really important to have an advance directive. By making an Advance Directive you empower your friends and family to be able to adhere to your wishes, if you don’t make one, they’re pretty powerless and that really sucks, for them and for you. It’s REALLY important to talk to your family and friends about what you want to happen. And make sure you appoint a Power of Attorney too.

The most common regrets of people who are dying are never ever about wishing they’d worked harder or earned more money. Nobody’s deathbed regret is the things they did. No one has ever said ‘I wish I hadn’t spent those six weeks on that beach in Thailand’.Lots have people have said ‘I wish I’d spent more time with the people I love’ and ‘I wish I hadn’t work so hard and for such long hours’.

People can do the most remarkable things when they’re coming to the end of their life.

People who are dying are still living. Treat them as such. They are still themselves. Don’t write them off because of their diagnosis.

Active treatments like radiotherapy and chemotherapy are really bloody tough. The endless hospital appointments often feel like a full-time job. Having someone there to do a crossword with makes a big difference.

Help is often about the small things: ask people what they want. Don’t assume!

Never assume! Did you just assume something? Stop it! Just because Great Auntie Iris liked sugared almonds for her chemo snack doesn’t mean Cousin John will too. Ask. DO NOT ASSUME.DO NOT DISENFRANCHISE someone who is ill. Help them to do the things that make them feel like themselves. If they feel up for cooking dinner, let them do it! Don’t patronize: ‘I’m ill, I’m not stupid.’Ask their advice and consult them, just like you always did. Don’t be afraid to talk about the difficult stuff.

Saying ‘I don’t know what to say’ is so much better than not saying anything at all. You cannot ‘fix’ someone who is dying. Do not try. People often want to leave a legacy. Helping someone leave their mark is a beautiful and significant gift.

Sex can still be really important to someone when they’re ill. Take the time to find out what works for them. Ask them, talk to them, and be honest and open. Lovers can be scared of ‘hurting’ someone when they’re ill. If you communicate, you can reduce this risk. Try things, but accept it might not be the same. It can still be wonderful, though. Feeling sexy and desired isn’t just for the healthy!

When a person at the end of their life is talking, the greatest gift we can give them is to listen.

Funerals:

You don’t need a funeral director to have a funeral. You can do it all yourself. You can bury someone in your back garden. If you want the person you love to stay at home after they’ve died and be at home until their funeral, you can. You need to keep them cool with the windows closed and the cat out of the room – but it’s possible, legal and can be cathartic.

Cats will start to eat someone who has died almost immediately after their heart stops beating. Dogs will often curl up next to them and stay there for days.

The funeral is for the bereaved; it’s not really for the person who has died. Funerals can play an important role in the grieving process. You can have a funeral anywhere; it doesn’t have to be in a church or a crematorium. Funerals don’t have to cost the earth. You can have a very simple unattended funeral, even in London, for about 1500 quid but the average cost is probably around three thousand pounds.

Some Funeral Directors perpetuate the myth of the ‘expensive funeral’ so they can pretend to be cheaper. If you want a horse-drawn carriage for a hearse and several black limousines, a custom-built mahogany coffin and a field’s worth of flowers, though, be prepared to pay. You don’t need to have a coffin. You can have a shroud.

You don’t need to embalm. Only if someone is being repatriated overseas is there a legal requirement to embalm. Your body won’t turn to ash when you’re cremated. Once you’ve been cremated, all that’s left – the bones, etc. – gets put into a cremulator and ground into a powder. The average fully-grown adult produces about eight pounds of ash

Take the flowers home from the funeral! Don’t leave them, all that happens is they rot and die in a room somewhere. Take them home and enjoy them. You can even donate them to a local nursing home.

Whatever:

Be kind. Be really kind.Love with all your heart. Giving is definitely better than receiving. Love never dies.

Say sorry when you’ve been a dick. Say sorry when someone is hurt, even if you didn’t intend to upset them. Apologies make the world go round. Start to take chances on happiness. Once you have, don’t stop.

Don’t ignore that lump; that persistent cough; that blood in your poo. Find a way to manage to get that smear, and cop a feel of your boobs regularly. Fondle your balls often and carefully enough for you to notice changes. Slather on that sun cream and get yourself a nice hat. Get your moles checked. If you sense something is awry, go and get it checked.

Never be afraid to ask for a second opinion. Doctors are not God. They make mistakes. If you’re not comfortable or happy with your treatment, ask to see someone else.

Dare to dream. Sleep is a wonderful thing. Lack of sleep makes everything harder to cope with.

It’s true that you cannot pour from an empty cup: when you’re caring for someone you also need to care for yourself. If you know someone who is being a carer for someone who is poorly, care for them. Care for the carer. No one ever really ends up where they expect. Don’t be afraid to veer from the plan.

Don’t always have a plan. Some of the best things in life happen when you have no plans at all.

If someone loves you, they’ll let you know. Don’t waste your life waiting to be loved.

Life is a series of mini-lives: don’t be afraid to move to the next chapter; don’t hold yourself in one place for too long because you’re scared of what’s next. Chances are there’s a lot more wonderful stuff around the corner than on this side of it.

Set an example. If your kids see and hear you talking about difficult things, they’ll be better equipped to do the same.

What’s the worst that can happen? You can die? You’re going to die anyway. The worst thing that can happen is that you don’t get to live a full life – a life bursting full of the wonderful, the difficult, the beautiful and bleak. The worst that can happen isn’t dying; the worst that can happen is never allowing yourself to live.

Live.

Laugh.

Love.

Kiss. A lot.

Linger.

Eat the gelato.

Wear the bikini.

See the world.

Be generous with all you have.

When you get the chance to make someone’s life better, do it.

Call your grandma.

Be kind: to strangers, to the people you love. Most importantly, to yourself.

Tomorrow might never come. Today is precious, and so are you live your life; don’t let it be something that happens to you. Grab it by the balls and enjoy it all – even the bad stuff.

It’s not possible to be positive all the time but by acknowledging our mortality, that gelato will taste a little bit better and that kiss will linger a little bit longer. Life is finite, and it’s yours for the taking. So live it. Every second of it.

In the end, all that really matters is loving and being loved. What do we want at the end? We want to hold; we want to be held. I’ve never been asked to go get someone’s expensive car so they can see it one last time, or to fetch them their Rolex watch. I’ve never had anyone request ‘one last e-mail to the CEO to make sure so-and-so has sold those shares’.

I have been asked to help someone see one last sunset, to swim one last time in the ocean, to fall asleep in the arms of their lover, to have their dog come and sit on their bed. It’s all about love. Real-life human love and the connections we make with them. The mark we leave is imprinted on the hearts and souls of the people we loved unconditionally. In the end, all that really matters is love.

Anna is an End of Life Doula, curator and co-director of @LifeDeathWhatever and Mother to Three daughters.