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​​​Leaving Well

Caring for a loved one at the end of his/ her life can be a challenging experience as most of us do not know what to expect and have to juggle with multiple responsibilities. As end-of-life care can last between days and months, you should work closely with your healthcare providers to approach the changing situation in a collaborative manner. With their support, you can remain focus on caring for your loved one while attending to your own needs as a caregiver.​

End-of-Life Care

Palliative care at end-of-life refers to whole-person-care that focus on the physical, emotional, social and spiritual needs of the persons approaching end of life, where a cure or reversal of the disease and its progress is no longer possible.

The purpose of palliative care is to improve the quality of life of the dying person including the relief of pain. As a caregiver, you should discuss palliative care options with the doctor, together with your loved one.

You can understand more about palliative care from the Singapore Hospice Council or Moments of Life website. You can also enroll for training courses to manage the needs of your loved one, and watch learning videos here.


The Conversation on Death

Beyond addressing the day-to-day care needs, the other challenge that caregivers face is approaching their loved ones on the topic of death. Dying is not only a deeply personal journey, but also a heavy-hearted experience for the family. Therefore, talking to your loved one about his/her death can be made harder if your family perceives it as a taboo topic.

Contrary to the myth, talking about death does not hasten the death process. Instead, it can help you and your loved ones better address the worries and fears related to the final days of their lives. Involve your loved one as much as possible in planning ahead so that you get to know his/her values and care preferences. Planning will help you take into consideration the preferences of your loved one and to better decide their care arrangement when they no longer can do so. If you are uncertain about how to carry out such conversations with your loved one, these resources by the Singapore Hospice Council or AIC can serve as conversation starters.

Let your loved one share as much or as little as they wish. You can listen and ask more questions to clarify your understanding and to show interest. It usually takes more than one conversation for them to convey their thoughts so be patient and let them take their time. Encourage them to also share their past experiences and cherished memories. Conversations about death and dying are also about living well and what matters to your loved one.

The stress of seeing a loved one suffer can lead to heightened tensions among family members. Keep other family members informed on your loved one’s condition and wishes. Be open and honest when discussing the final care arrangement for your loved one so that family members can offer their help and share responsibilities. Seek help from the healthcare team should you need a social worker or counsellor to rally the support from other family members to care for your loved one.

For more tips on talking about dying, go to local websites of the Singapore Hospice Council and Grief Matters, and overseas website by Dying Matters.


Pay Attention to Your Own Needs

Managing your emotions and responsibilities as a caregiver can become overwhelming. Do remember to take care of your own needs. Eat balanced meals and take time to rest. Reach out to others to ask for practical help and emotional support for yourself. Let the healthcare team know when you have difficulties coping with the demands of caregiving so that they can put in additional support for you.

You can find support from National Cancer Centre Singapore and Health Hub if you are caring for loved one living with cancer, and resources on caregiving from the Singapore Hospice Council.


Here are some common reactions of a caregiver and suggestions to cope with them:


Common Reactions
Examples
Suggestions on Ways to Deal or Cope
Worried or anxious
What is going to happen? What if it's painful? What if something goes wrong?
Plan the day. Keep to a schedule for routine activities. Have a list of persons you can contact for help and put the list in a place that you can refer to quickly. Take time to do deep breathing regularly.
Doubtful/Disbelief
Maybe the doctors are wrong. This cannot be happening.
Write down your questions. Arrange for a time with the healthcare team so that you can clarify your doubts without rushing through them. Request for information to be repeated and given in a manner that help you to understand, e.g. ask for the explanation of medical terms you don’t know.
Staying hopeful/not giving up
"Maybe if I pray every day, she will get better." The head knows the facts but the heart is not ready to deal with the facts.
Focus on what you can do to improve the quality of life for your loved one. Plan how to spend quality time with him/her. Help fulfil any wish that is within your effort. We never give up on our loved one, they matter to us right till the end.
Dilemma
"I wish his suffering will end quickly, but I also wish he could live for as long as possible."
Recognise that you want the best for your loved one and also to keep the relationship with him/her for as long as possible. Work closely with the healthcare team to reduce physical and psychological suffering. Acknowledge that nature will take its own course. Even so, death cannot terminate your relationship with your loved one.
Regrets/Guilt
What if it is all my fault? I should have forced her to go for treatment earlier.
We give advice to our loved one out of concern and to our best knowledge. However, we are unable to control the outcomes and the future. Ask for forgiveness from your loved one for not knowing better while recognising your good intention behind all the decisions made earlier.
Cannot imagine a future without your loved one
My dad is my best friend. What will I do without him? Make every moment counts and use whatever time you have to build memories with your loved one. Ask for a legacy of values that your loved one would like to pass to you.
Numbness
I do not know what to feel. I feel nothing. Maybe I am cold-hearted.
Ask yourself, "Is this my usual reaction under stress?" Be kind to yourself. You may be so occupied with caregiving activities that you are trying to keep your emotions ‘under control’. It may be too painful to think about the impending death of your love one that you numb out your feelings. When you are not as overwhelmed, your senses and feelings will ‘come back’ again.
Injustice/anger Life is so unfair. Everyone is happy but me. Why should bad things happen to me and my loved one?
Recognise that you might feel powerless for not being able to stop the impending death of your loved one. Remind yourself the reasons for you to take up the role as a caregiver.

Caregiving does not have to become unbearable. When you are not coping with the demands of caregiving, reach out and seek help early. Let the people around you know. Ask to speak to a social worker or counsellor.



Learn More

Here are more resources related to end-of-life.

How to manage grief and loss after a death

The steps you need to prepare for a funeral

Other post-death related matters you may need to settle

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