Palliative Care Pairuri
Preparing for and coping when someone close to you is dying or has died is a very significant event in our lives. Family and carers will experience a loss (bereavement) and grief when a loved one has died from cancer.
You may have shared in and cared for your loved one at the end of their life, and for many this will have been a great privilege.
It will now be about finding ways to live with that loss. Grieving for your loved one is normal, and we all experience this in different ways, it may affect your emotions, wellbeing and behaviours.
The period of grief can also occur over very different timeframes for each individual, so be patient with yourself.
If you feel like you are getting stuck in your grief it is important to get some support – speak to a trusted friend or your GP for advice.
Your support crew
You may find that your best support crew are the people who knew your loved one the best. Being able to talk about your shared experiences of grief, and to reminisce, laugh and cry together can be very healing.
Seeking professional help
Some people find talking through their grief with a professional beneficial. Psychologists and counsellors are trained in guiding people through personal problems. Everything discussed is confidential (private).
Your GP or support team will be able to provide you with a referral to a professional service.
Seek immediate help if
you are unable to perform the daily normal activities
you feel like your grief is so overwhelming that you can’t go on with your own life.
Losing a loved one can change a person’s life. Grief, when experienced fully with the proper understanding, good handling and availing of resources when needed, will become bearable with time.
Losing a loved one can change a person’s life. Grief, when experienced fully with the proper understanding, good handling and availing of resources when needed, will become bearable with time.
Throughout life we will experience times of great happiness and joy however, sadly we will also experience times of great sadness and sense of loss.
Grief is a normal emotional reaction to events that result in significant loss. The loss of work or employment, end of a relationship, loss of a position of status or role, loss of a goal or dream, loss of vitality or health, or even death of a pet can bring about grief. For most of us, grief is equated with the death of someone significant to us.
It can be very painful to lose someone we deeply love and greatly care about. The state of grief from the death of a significant someone is called “bereavement”.
Bereavement normally involves feelings of pain and sadness. This may be accompanied by inability to sleep/insomnia and poor appetite that often leads to weight loss.
How long a bereaved person “normally” grieves is influenced greatly by social and cultural factors, and the duration of grief is different for each individual. The circumstances surrounding the death, the individual’s personality, a person’s faith and practices, and other factors shape how long a person goes into “mourning”, the outward expression of loss and grief.
To understand further how the grieving process works, we need to know the different stages of grief.
Stages of grief
There have been many studies on the grieving process and the stages that people may experience. Below we describe two common models which describe the grieving process. It is important to note that those who have lost a loved one may experience some or all of the stages, may move between stages back and forth, and may spend more time in one stage than another.
The stages of loss/adaptation - Dr Mardi Horowitz’ model
The Outcry is associated with the initial emotions of realising that you’ve lost a loved one. It may be an outward burst of crying or shouting and may often end in fainting. Others may try to repress emotions to themselves. Often, people who hide their feelings reach their limits and ‘explode’. Because of the intensity and energy of the emotions involved, this stage ends briefly.
The bereaved may go into either one of two ends of a continuum. In Denial, people numb themselves of emotions by being involved in activities and thoughts that distracts them from dealing with death. On the other end, in Intrusion they may find themselves feeling the loss with a similar intensity of emotions as the outcry. It is important to note that cycling between denial and intrusion is normal.
When the cycling between the denial and intrusion becomes less frequent and pronounced, the bereaved goes into Working Through his/her life without the relationship of the deceased. Here, the bereaved thinks about goals and plans that helps him/her move on with life -e.g. moving to another house or place, pursuing a new hobby, meeting new friends, etc.
As time passes, the intensity of emotions associated with grief process ablates and the bereaved comes into Completion. The “last attempt of denial” could be the persistence of longing of the deceased during anniversaries, birthdays or holidays. Daniel Goleman (1989)* describes this yearning “gradually yields to an emotional acceptance of death.”
*Goleman, D. (1989, August 8). New studies find many myths about mourning. New York Times, p.Y17.
Five stages of grief - Dr. Elisabeth Kübler-Ross’ (1969)
Denial: The bereaved person is in shock and numbness, confusion, avoidance, and fear. A person tells him/herself: “Is it true? Did it really happen? Are they really gone?”.[7] In Dr. Ross’ book On Grief and Grieving, she describes denial as an adaptive way for us “help pace our feelings of grief”. As denial fades, the bereaved asks how and why.
Anger: It may be associated to the circumstances surrounding the death of a loved one – the doctor who gave the diagnosis, or directed to the loved one who should have taken better care of him-/herself, or directed at yourself: for not doing anything or enough to take care of them. Dr Ross describes there is pain and guilt underneath the anger. The pain and guilt creates an emotional bridge we cling on to, better than the feeling nothing – better than the emptiness at the loss of a loved. It is important to not hinder yourself from this emotion. It “affirms that you can feel, that you did love, and that you have lost”.
Bargaining: After the death of a loved one, bargaining would sound like “…if only…” and “what if…”. Bargaining runs closely with guilt. We bargain because we feel guilty, frustrated, even limited that we could have done something to change the situation.
Depression: Finding that we are powerless to change the events leading to a death of a loved one, the bereaved enters a state of depression. The pain of losing someone, the loneliness and sadness really sinks in, sometimes keeping you from enjoying activities you normally love. This is not a mental illness. Depression like the other stages of the cycle is just one of the steps to process grief. However, long-lasting grief may need medical attention.
Acceptance: In time, we learn to accept the reality of a loved one’s death. We learn and cope with the different roles and needs left to us. We begin to slowly adopt to the situation, developing new and existing connections that give meaning to our lives. By going through the grief process, we begin to be at peace with the loss of a loved one.
Symptoms of normal grief felt through the grieving process
depressed mood
yearning
loneliness
searching for the deceased
sense of the deceased being present
sense of continuous communication with the deceased
anger
anxiety
crying spells
guilt
lack of energy or fatigue
loneliness
pain
sadness
trouble sleeping/insomnia.
When is grief not normal? Persistent Complex Bereavement Disorder (PCBD)
If you have a persistent yearning/longing for the deceased associated with intense sorrow and frequent crying or preoccupation (e.g. the manner of death) for more days than not, plus the following symptoms for at least 12 months (six months in children) since the death of a loved one, then you may have Persistent Complex Bereavement Disorder (PCBD):
marked difficulty accepting that the individual has died (e.g. preparing meals for them)
disbelief that the individual is dead
distressing memories of the deceased
anger over the loss
faulty judgement about oneself in relation to the deceased or the death, and
excessive avoidance of reminders of the loss.
This may be accompanied with a desire to die to be with the deceased, feeling isolated, being distrustful of others, and believing that life has no meaning or purpose without the deceased. For immediate help, call 0800 543 354 or visit https://www.lifeline.org.nz/
A person with PCBD may experience a diminished sense of identity in which they feel a part of themselves has died or been lost, or have difficulty engaging in activities, pursuing relationships, or planning for the future.
There must be a clinically significant distress or impairment in psychosocial functioning to consider a diagnosis of PCBD.
What can I do? Tips and resources for positively adopting after loss of a loved one
Dealing with the loss of a loved one can be overwhelming. When sadness and grief overtakes our lives, here are a few tips and resources to help deal with the loss and help ease the pain through the grieving process:
Admit you’re in grief and connect with others
you should not feel alone. Talk to a family member, a close friend, or a spiritual adviser. A family counsellor, a therapist, or a palliative care specialist can also help you process and deal with the emotions and stages of grief. Finding and joining a local support group can also help.
dedicated grief helplines/call lines are also available. Find out more about grief support services.
Set aside time alone everyday
this helps you to reflect upon your emotions and the events surrounding the loss of a loved one. Have a good cry and try not bottle up emotions, causing them to spill uncontrollably over later on.
Write in a diary or journal
writing helps you process your thoughts by seeing a physical translation of your emotions (how you felt) after losing a loved one. You can even record the old happy memories shared with the deceased. Writing can help you see your progress through time, both good and bad days. When the longing overwhelms you, flip through the pages of your diary or journal and it can help reassure you.
Take care of yourself
it may be difficult at first but try to get back into your daily routine: meal, bed, and waking times. Eat a balanced diet and avoid using alcohol, smoking, prohibited drugs, and other medications (e.g. sleeping pills) to cover yourself and “escape” the grief.
avoid too much coffee, tea or drinks (like cola or energy drinks) containing caffeine. It may alter your regular sleeping patterns and can make anxiety worse.
get regular exercise and get yourself outdoors. Simple gardening or a short stroll or bushwalk (preferably with company) can change your mood, improve your health and refreshes your mind.
find ways to relax (like meditation, music, etc.) in the middle of the day and before sleep. If you have not had a medical check-up in a while, then book one with your GP.
Seek immediate help if:
you are unable to perform the daily normal activities
you have persistent grief.
Losing a loved one can change a person’s life. Grief, when experienced fully with the proper understanding, good handling and availing of resources when needed, will become bearable with time.
Grieving is hard, you should not feel alone. Talk to a family member, a close friend, or a spiritual adviser. A family counsellor, a therapist, or a palliative care specialist can also help you process and deal with the emotions and stages of grief. Finding and joining a local support group can also help.
Below you can find links to support services and groups in New Zealand who can help you to process and manage through grief
Mental health support services
Telling friends and family about the death of a loved one
Telling friends and family about the death of a loved one can be difficult. The way you deliver this news can have an impact on the person you are telling, so it can be a good idea to prepare where and how you let them know.
Where should I tell them?
it is usually best to tell them the news in person. If this is not possible, making a phone call is better than sending a text or email
allow plenty of time when you’re with the person or making the call
if possible, make sure you are in a safe and confidential space where there will be no potential interruptions. Switch off phones, radios and televisions
call elderly or vulnerable individuals when they can have someone beside them for support and not alone after hearing your news
What should I say?
even though it is impossible to prepare anyone for news about the loss of a loved one, it may help to think through and prepare what you’re going to say
talk gently and slowly, using simple and plain language. Warning the person that you have bad news may mean that they’re less shocked
avoid euphemisms such as ‘gone to sleep’ or ‘they’re in a better place’ and be as truthful and clear as possible. This is especially important when talking to children, as they can take such phrases to be literal
avoid talking about unrelated issues or delaying because it may not be the right time or the person’s mood may be ruined. There is never an ideal time to give someone bad news. Check that they understand what has happened and whether they would like to express what they are feeling
if as well as telling them about the death you also want to discuss practical things like the funeral arrangements, it may be better to leave that for a separate conversation.
How to support the person you are telling
your loved one may have been seriously ill for a long time, or they may have died quite suddenly. If the death comes as a shock for the person you’re talking to, they may find it particularly difficult to take in
the person may need physical space to take in what you’ve said. Leave it up to them if they want to be touched or held
if someone becomes very distressed, and you’re unable to stay with them, you may need to ask who you can contact on their behalf. This might be a neighbour, or friend or family member who lives close by and can stay with them
you may have a long list of people to call, and it can be very tiring. You might want to limit yourself to so many a day or share the calls with another close family member or friend.
Telling children about the death of a loved one
Telling a child about the death of a loved one can be one of the most challenging things to do.
Click here to learn more on how to talk to children about death and dying.
Losing a loved one can change a person’s life. Grief, when experienced fully with the proper understanding, good handling and availing of resources when needed, will become bearable with time.
Emotional recovery
When a loved one dies you will likely feel overwhelmed with grief and experience a wide range of emotions. Here we discuss some helpful ways to cope with the death of a loved one and commence your emotional recovery.
Even when death is expected, the death of a loved one can bring a range of emotions that might include:
shock
denial
numbness
confusion
sadness
anger
yearning
guilt
These emotions are normal and common reactions after we lose someone we love. You may struggle to cope with the intensity and duration of these emotions. You may question your mental wellbeing. But be assured that these emotions are healthy and relevant while you go through the grieving process. They can help you to come to terms with your loss. Over time, the pain of losing a loved one eases and allows you to go on with your life.
Remember: It takes time to fully absorb the impact of a major loss. You never stop missing your loved one, but the pain eases after time and allows you to go on with your life. – Mental Health America – Bereavement and Grief
Ways to cope with the death of a loved one
allow yourself to feel pain and any other emotion and do not let others tell you how you should feel
allow yourself time to process your loss and grief without placing any expectations or pressure on yourself to feel better. Accept your own way of experiencing emotions and your own way of healing without judgement or comparing yourself to anyone else
acknowledge your feelings and let yourself cry. Remember it is all a part of healing
talk about your loss and express your sadness without feeling the need to protect those around you. It can help to share your emotions with people who have lost a loved one
self-compassion and forgiving yourself for what you may or may not have said to your loved one is important in the healing process
remember your loved one’s life, not just their death. Share your memories about your loved one with family or friends. You can move on with your life and still keep the memory of your loved one as an important part of you
during this difficult time, taking care of yourself is more important than ever before. The pain of a major loss can leave you feeling demotivated and lacking in energy. Eat well and keep physically active. You can enhance your physical wellness with massages, hot baths, or naps
avoid drinking alcohol or taking drugs as they delay your emotional recovery and can cause new problems
take time out from grieving. Give yourself moments of engaging in activities you enjoy; listen to music, read a good book, or go out for dinner or to the cinema
express your feelings in a creative way. Write a journal about your loved one, keep a photo album or scrapbook celebrating the life of your loved one, write a letter saying all that you did not get a chance to say to your loved one or involve yourself in a cause or organisation that was important to your loved one
strong emotions can return during special occasions such as birthdays and anniversaries or during the holidays. Plan ahead and mark these occasions as you used to with your loved one or start new traditions to honour the memory of your loved one
join a support group. Grief can make you feel alone. Sharing your sadness with others who have experienced similar losses can help and comfort you
talk to a therapist or grief counsellor if your pain is hard to cope with. An experienced therapist can help you work through intense emotions.
Additional Reading
Seek immediate help if:
you are unable to perform the daily normal activities
you have persistent grief
losing a loved one can change a person’s life. Grief, when experienced fully with the proper understanding, good handling and availing of resources when needed, will become bearable with time.
What to do first
If your loved one died in hospital or at a care facility, the care team looking after them will contact a doctor to certify the death.
If your loved one died at home or somewhere else, you will need to contact the palliative care team who you were in contact with prior to death. They will be able to arrange for a doctor to attend to certify the death. If you were not in contact with a palliative care team, contact your loved one’s GP who will be able to do this.
Making arrangements
After the death of a loved one you may feel that you want to start making arrangements for the funeral/tangihanga straight away to keep your mind busy, or you may feel the thought of this distressing and want to put it off as much as possible. This is personal to everyone and you might not know how you will feel until it happens.
Understanding the wishes of your loved one will help to guide you and so it is a good idea to find out the following things first before you make arrangements.
find out if your loved one has a Will expressing their wishes and who they would like to carry out their wishes
find out if there is an Enduring power of Attorney and if so, who the nominated person is to make financial decisions
contact a funeral director (unless one is specified in a Will) who will be able to look after and prepare the body in the initial hours after death and talk you through the funeral/tangihanga process. Click here to find a funeral director if one isn’t specified in a Will.
If your loved one did not specify any wishes in a Will or Enduring power of Attorney, the next of kin has legal authority to make decisions about the funeral/tangihanga but may choose to delegate authority to other close family/whānau members.
The funeral director will help to guide you through this process and things that you need to do to prepare such as:
arranging an obituary in the local newspaper
arranging flowers
collecting clothes for your loved one to wear
deciding on a coffin
deciding on a day, time and location for the service
making arrangements for burial or cremation.
Click on the links below to find out more about the funeral/tangihanga process.
Before the burial/cremation
In the immediate days after the death, the funeral director will prepare the body. You can then choose where the body will stay until the burial or cremation. Your loved one may have expressed a wish to stay with the funeral director, or to return home or lie in rest at their marae. If no wish has been expressed, you may want to discuss what your loved one may have wanted with close family/whānau members.
Funeral/tangihanga costs
Check to see if your loved one has already made arrangements to cover the cost of the funeral with funeral cover or life insurance.
If there are no prior arrangements, and if you are not able to afford funeral costs, you may be able to request a grant from Work and Income New Zealand (WINZ) however this grant is asset-tested. Click here to find out more about the grant.
Informing service providers of your loved one’s death
Following death, and when you feel ready, there are a number of service providers who you will need to contact. Some are more urgent than others.
Your loved one’s GP should have been informed by the hospital, palliative/hospice or care home already.
Some people who you may need to contact straight away are:
banks, loan companies and investment companies
accountant
your loved one’s lawyer.
Some people who you may need to contact over the coming days and weeks are:
health care providers that were not involved in the care of your loved one in the final weeks
pharmacy to cancel any repeat prescriptions
kiwisaver
employer
insurance providers (life, health, car, house etc)
waka Kotahi | NZTA if your loved one had a registered vehicle
IRD
council
mobile providers
utilities companies such as electric, gas and water providers
subscriptions such as magazines, tv, music and other hobby subscriptions
equipment providers who may have loaned equipment such as wheelchairs or personal hygiene aids.
Probate
Probate is how a will is recognised by the court as being authentic. The executor of the will needs to obtain probate from the court so that they can deal with their loved one’s assets (and liabilities) and share the estate as set out in their loved one’s will.
Probate is granted by the Registrar of the High Court once they’ve received an application from the executors. It confirms that it was the maker of the will who died, that the will was properly signed and witnessed and that executors have been appointed.
Probate can take some time to complete during which time your loved one’s assets may be frozen. To make this simple for you, your solicitor usually applies for probate on your behalf.
