Palliative Care (for the carer)

Also known as end-of-life care is aimed at aiding the individual in passing on with dignity and as comfortably as possible.

This information is for you if your loved one has advanced disease that is no longer responding to treatment. You and your loved one may have been focused on treatment in hopes of remission or recovery, this focus may now have to shift to making choices about care and future steps.

Conversations surrounding End-of-life wishes

Talking to a loved one who will receive hospice care can be a very difficult conversation to have, you may be met with some resistance. According to studies done men are less likely to talk openly about their mortality and end of life wishes, keep this in mind when approaching the subject.

Approach the topic with care, perhaps say something such as “I know this is a tough discussion to have, but I feel it is important that I know what your wishes are”, below are a couple of examples of questions to ask.

• What are your thoughts and feelings about hospice care?
• How do you want to be involved in the decision making about your care?
• What are your fears and concerns?
• What are your spiritual or religious wishes around death and dying?
• What do you value most in your daily life?
• What are you wishes as far as resuscitative efforts?
• Who is your medical proxy in the event that you are unable to communicate your wishes?

Caring for the terminally ill patient

There are two options of care available to Caregivers of terminally ill loved ones many times a combination of the two are made use of these include the following:

• Hospice – “the goal of hospice is to help patients live each day to the fullest by making then as comfortable and symptom-free as possible…They are dedicated to supporting the emotional, social, and spiritual needs of both patients and their families, as well as dealing with patients’ medical symptoms.” As stated by U.S. Department of Health and Human Sciences’ National Cancer Institute
• Homecare – the patient receives medication and specialised nursing/medical care at home. 24hour care is available and covered by most medical aids when motivated by the Oncologist/treating Doctor.

Caring for your loved one includes taking care of your needs too, make use of the following advice to obtain support during this process:

• Taking care of yourself, it’s important to:
• Keep up with your own check-ups, screenings, and other medical needs.
• Try to remember to take your medicine as prescribed.
• Try to eat healthy meals.
• Get enough rest.
• Exercise
• Make time for yourself to relax.
• Care for your mind and spirit by:
• Find comfort
• Look for positives
• Find acceptance
• Feel thankful
• Connect with other people
• Let yourself laugh
• Write in a journal
• Confront your anger or frustration
• Let go of your guilt

Take an honest look at what you realistically can and cannot do. Getting help for yourself

• can also help your friends and family as well as your terminally ill loved one.
• You may stay healthier
• Less guilt feelings may be experienced by your ill loved one
• Skills and time that you may be short on could be offered by your support system
• Having a support system allows you to still take care of your family as well
• How can others help you:
• Emotional support
• Take loved one to appointments
• Collect child from school, take to activities
• Look up information you need
• Help keep others updated on your loved one by being the contact person
• Coping with your feelings, you may experience the following:
• Guilt
• Hope or hopelessness
• Sadness or Worry
• Anxiety or Depression
• Grief
• Hurt feelings
• Anger
• Loneliness
• Denial
• Join a support group for caregivers, such as:
• CANSA
• Cancer Dojo
• Cancer Buddies
• Cancer Alliance
• Bosom Buddies

Identifying the phases of the dying process:

1-3 months before death – About one to three months before death the dying process often comes into view.

• Mental and behavioural changes – your loved one may start to withdraw as they start to accept their death and realise that death is approaching. This is the beginning of the process of separating from the world and the people in it. Do not feel rejected, your loved one is using this time to reflect on their lives and revisiting old memories.
• Physical changes – your loved one may have a lack of appetite and lose weight as a result. It is not encouraged to force your loved one eat or drink; they are not suffering in any way, and it is an expected part of the journey they are on as their physical need for nutrition diminishes. They may start sleeping more and due to body chemistry alterations they could experience a mild sense of happiness and wellbeing.

1-2 weeks before death – In the last week or two of a person’s life the process starts to move faster.

• Mental and behavioural changes – your loved one will be sleeping most of the time. When awake they may be confusion and delusions are not unexpected. Try not to correct them if they have said things that don’t make sense, rather listen and support your loved one.
• Physical changes – their body is having a hard time maintaining itself and need help with most activities. During this end-of-life stage,
• Body temperature that’s a degree lower than normal (or more)
• Lower blood pressure
• An irregular pulse that may slow down of speed up
• Increased sweating
• Skin colour changes, with pale or bluish lips and nail beds
• Breathing changes
• Less or no talking
• Sudden are or leg motions

Days to hours before death – it is not unusual for loved ones to have a sudden urge of energy, wanting to get out of bed, eat and talk to loved ones in the last couple of days before death.

• Surges of activity are usually short and are your loved one’s last physical acts before moving on. The signs of being close to death are more pronounced once the energy is spent.
• The person’s breathing becomes slower and more irregular. Cheyne-Stokes breathing which is described as rapid breathes followed by periods of no breathing may be present. Although these changes may be unpleasant to see, your loved one is not uncomfortable.
• The extremities may start becoming mottled. This will most likely progress up the arms and legs. Lips and nail beds will turn bluish or purple.
• Your loved one will most likely be unresponsive at this stage. Their eyes may be open but will unlikely be able to see their surroundings.
• It is believed that the last sense to leave the dying person is their hearing. Sit by your loved one and talk to them during this time.
• Death has occurred when your loved one stops breathing and their heart stops beating. 

Celebrating your life together:

Examples:

• Make videos of special memories
• Review and arrange family photos
• Chart/write down your family history or family tree
• Keep a daily journal of feelings and experiences
• Make a scrapbook
• Read or write poetry
• Create artwork or jewellery
• Choose meaningful objects or mementos together to give to others
• Write down or record funny or meaningful stories from the past