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.
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.
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
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 HealthHub 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:
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.
The signs of deterioration in this write-up are general signs of a natural death. These signs may be different for each person. The end of a person's life can last for days, weeks or short months. Despite all the differences, you can help your loved one by being there for him/ her in these final days.
Your loved one may move and respond much less. He/ she may lose interest in everyday affairs or his surroundings. He/ she may not even be taking sips of water, lift his/ her head, nor shift in bed.
What can you do? Keep your loved one resting in a comfortable position in a calm and peaceful environment.
You may find that your loved one is sleeping a lot, or does not wake up easily.
What can you do?Let your loved one sleep and if you have to, wake him/ her up gently.
Your loved one may be disoriented (confused). He/ she may imagine things, be confused about time and place, and talk to people who are not there.
What can you do?Remain calm and accepting of your loved one, no matter what he/she may be experiencing. You may have to remind him / her of your name and your family members' names.
A person at the end of life can become more socially withdrawn, and may not want to talk to anyone. On the other hand, sometimes, people have a burst of energy in their last day.
What can you do?Your presence counts even without much conversations . Treasure all moments with your loved one and be there for him/ her.
Your loved one may not want to eat much.
What can you do?Keep him/ her hydrated by letting him/ her suck slowly on a small ice cube if he/she is conscious, or use a warm damp cloth to moisten the lips. You can also apply lip balm to prevent dry skin. It is okay if your loved one does not want to eat much. Let him / her eat a comfortable amount. Do not force feed.
Because of decreasing blood circulation to hands and feet, your loved one's hand may feel cold when you touch it.
What can you do?Place a warm blanket over him/her. Keep the blanket loose as it may cause uncomfortable weight on the legs. You can gently massage his/her hands and feet if that sensation gives comfort to him/her.
As the kidneys begin to fail, urine may become brownish, reddish, or tea-coloured. Your loved one may wet the bed or have little output.
What can you do?Keep your loved one dry and clean. If you are at a hospice or hospital, the healthcare workers will help you maintain the basic hygiene of your loved one.
In the final moments of a person's life, you will see some changes.
Your loved one may breathe in a different way. Sometimes, he/ she may breathe very fast, or the interval between the exchange of air may appear longer. He/ she may breathe loudly because of fluid build-up in the lungs. Loud breathing is not uncommon and it might look uncomfortable.
What can you do? You can ask for medication to dry out the fluids to lessen noisy breathing or coughing.
The skin of your loved one may change colour and become dark or greyish. The beds of the fingernails may appear bluish. Ankles and feet might swell. He/ she may slip in and out of consciousness or go into a coma.
What can you do?
Even when a person seems to be unconscious, he/ she might still be able to hear you. Always behave as if your loved one can hear you, even when they seem like they cannot.
Your loved one may pass on when you are not by the bedside. Learn to say goodbye whenever you have to leave his/her side. Share your love, gratitude and appreciation with him/her in advance.
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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