Towards the end of life

It is quite common to avoid talk of death and dying. If that is how you feel, leave this section until you feel ready.

Talking about death

There will be times when your morale slumps and you feel terrible – physically and emotionally. At other times, you may feel optimistic about your situation. Talking about these feelings may be hard for you and for your listeners. It will be especially hard for the people who love and know you best. They will need time to adjust.

“People saying, ‘You’ll get well’ makes me really cross. I know I won’t be well. I want to say to them, ‘I am going to die and don’t you dare deny me this business of dying’. Doris 

You may come to terms with your situation faster than those who love you. While your family and friends adjust, it might help to share your feelings with the doctors, nurses, or others who are looking after you. 

“I’m not worried about dying. I know that when the time comes, it will be my time, this body will be worn out.” Stan

How long have I got?

“It was like appearing in court expecting a death sentence and discovering the judge didn’t want to commit himself.” Joyce

It may be tough if you are told that your time is short. Your mind and feelings may become focused and you may find yourself making decisions about things that are important to you.

“The doctors said, ‘You haven’t got much time. Do what you have to do, do what you want to do.’ Suddenly they were talking weeks not months. That was a very difficult time. At night I wouldn’t know if I was going to wake up. I didn’t know when somebody left if that was the last time I’d see them.

I made very certain everybody knew how important they were to me. I wanted people to feel free and released from any unfinished business between us.” Roy

You can feel uneasy or unsettled if you live past the expected time, not quite knowing what you should do now.

“Last year I was living thinking I was dying, making the most of it, not planning anything for the future. In a funny sort of way it was quite easy. You can plan to die. This year is different. When I kept on living it was a problem. What on earth is this for?” Jane

“I’d made a will and left money for my cat to be looked after. I’d given away all my Led Zeppelin CDs. Now the cat’s dead and I’d really like to play one or two of those songs.” Harry

Facing death

“When I was told, ‘You’re going to die’, it made me ask myself what dying means. I decided nobody really knows. Nobody sends you a postcard from Heaven to tell you what it’s like.” June

Where do you go for help in sorting out your feelings about this new stage of your life? Facing death means losing people, places, and things you hold dear. It is natural to grieve for their loss. And it is natural to want to share your hopes and fears with an understanding listener.

People living with advanced cancer say how important it is to say goodbye to people – work colleagues as well as family and friends – and to make arrangements for the future care of their pets.

Making a will

“The oncologist told us that there was no more treatment for John. He said we should go home, write a will, and then do whatever we wanted – enjoy ourselves. We already had a will, but we rewrote it to say who should be guardians for our children if something should happen to me as well.” Phyllis

A will states what is to happen to a person’s belongings when he or she dies. For those left behind, a will simplifies matters, especially if a person leaves assets, such as property or money. A will also helps to ensure that ‘special things’ are given to the right people after death.

If you had made a will before your cancer diagnosis, you may wish to review it to make sure it reflects your current wishes.

If your assets are substantial, or the division of them will be complex, for example, if your main relationship is not fully recognised by law or if you have children from a previous relationship, it is advised that you seek the assistance of a solicitor or trustee firm.

Alternatively, you may like to try a ‘do-it-yourself’ will, especially if the division of assets is straightforward. Will kits are available from many bookshops. If you live in a city there may be a community law office that can assist.

Planning your funeral

“I’m planning my funeral to have the music I want. It is the music that has been a special part of my life. I also intend to leave a tape to be played at the service – they haven’t heard the last of me.

My two closest friends are going to have something to say about my life – warts and all. I hope my funeral will be a celebration of life.” Peter 

Planning your own funeral or at least talking with your family about your wishes can be therapeutic for you and helpful for your family. Your family will not have to try to ‘guess’ what you would have wanted. It is probably not easy for most of us to hear or think about the reality of what is involved in funerals. However, there can be a satisfaction in leaving your mark on the occasion. Sometimes it is something that you can have some control over at a time when you may feel you don’t have much control at all.

Some of the things for you to think about are:

  • Which funeral director to use.
  • Whether you’d like to be embalmed.
  • Whether you want to be buried or cremated.
  • What venue you would like used.
  • What form the service will take.
  • Who will conduct it.
  • What music you’d like.
  • Who you would like to speak.
  • What you may want read.

Do talk to your family as they may have ideas and this is something that children can be involved in. They often benefit from the opportunity to have a role in planning and also in participating in the funeral service. You can lodge a plan with the funeral company of your choice well before it is needed.

If you feel you need to make preparations but you can’t do the work, or prefer not to, consult a social worker or pastoral care worker who will help you work out what you can do.

The Funeral Directors Association of New Zealand can provide a listing of funeral directors, estimates of funeral costs, and provide a kit, My Life, My Funeral. To receive this kit you can telephone 04 473 7475, or view the kit’s contents online or email them for a copy.

For an environmentally friendly funeral, phone Living Legacies 03 528 5220 or visit their website.

“I didn’t know Penny very well. She was dying when I joined the support group and I didn’t realise. I missed the meeting when she came to say goodbye. I was awed when I heard that her kids decorated her coffin in their garage while she was still alive.” Trish

“I remember Fred saying he hoped he lived long enough so the twins would remember him.” Moana 

People who work with the dying say that pain in mind and body can be lessened when fears and hopes are talked about. Conversations can be a precious memory for those involved.

If you have last messages for people, you can make a point of passing them on now. That way, there is a chance for dialogue – time for people to listen and respond.

If you have children, consider making a ‘moral will’ – a letter, tape, or DVD telling them what you would like them to know. This could include your memories of them as a child and growing up, how it feels leaving them, your wishes for their future, and how much you love them.

There is no ‘right’ way or place to die. You and your family will go through it in your and their own way when the time comes.

“When patients ask about the dying process, I describe it as the physical and emotional experience of gradually becoming weaker and letting go of their attachment to living.” (Occasionally, people die unexpectedly.) Phillip

Whatever your belief is about what happens after death, you can make the most of the time you have now. A palliative care doctor suggests: Maintain purpose for living and express feelings. Don’t aim to stay alive, but to live. 

“Keep planning and setting goals, however small or big. Keep your mind active. I’m always planning for the next thing: someone to love, something to do, something to look forward to.” Judith

There are positive things you can do, for yourself and for those close to you. If you have strategies to get you through the more difficult situations, you’ll have a sense of being in control of your life. For example, if you live alone, you could call on home help and palliative care services sooner rather than later.

The aim is to feel free to do whatever you can. Perhaps it is just enjoying small things in your daily life, even if this is no longer an active one. Being able to live in the moment is a gift, but it can also be learnt. Whether the moment is especially good, utterly ordinary, or even painful, you can live it to the full.

What is death going to be like?

As you approach death, you may become unconscious. Some people lapse into and out of consciousness and are able to talk at times to people around them. Some people stay alert almost until the end.

If you are unconscious, the people around you will see and take notice of things that you may not be aware of. Your breathing will sound different and your appearance will change. It may seem to the people watching that it is an effort for you to breathe, but experts think that people do not experience it this way.

Death is as much a process as an event, so your body will ‘shut down’ bit by bit. It seems that hearing is the last sense to go (although we cannot be sure about this). With this in mind, the people caring for you will tell you what they’re doing; for example, turning you on your side to make you more comfortable, and moistening your lips.

No one really knows how a dying person experiences the moment of death. We each imagine it differently. Some people see it as a moment of release from suffering and care; others imagine falling into a blissful sleep. People with religious faith look forward to the time after death, when they will reach Heaven or Paradise.

Some people believe that their ‘life force’ will leave their body and become a part of a greater life force. Perhaps death is the last and greatest experience of them all.

“You lay there Not so much sleeping as leaving Many of those who loved you Stood or sat around you... That fearful tearful moment was not far away Yet The room was alive with love Pain had succumbed to peace Ending surrendered to beginning.” Bill

The not getting better

When the tide goes out you will see bit by bit the bottom of her life,

Crabs and shells and old tyres which hold her up, her bare bones drying,

Holes which gulp quickly their last drops of water.

There will be a less crisp line between the blue and the white and the sun in the sky

Fewer people will lay on the sand.

There will be a field of grey to walk on.

There will be a line of seaweed to remind you of when the tide was full, a line in the sand to say:

‘Here is as much as this man took for granted’.

Between it and the water will be the other landscape of his life, a place to find old bottles and tins and pieces of wood covered by snails and oysters and mud,

Bubbles where things live underneath,

All that the water hides.

Some will sit silently and wait for the sea to return.

Some may walk in the mud with bare feet and look under rocks for treasure.

Glenn Colquhoun

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