The first reaction you may have is shock. You might even be angry that this has befallen your family. Even as millions of thoughts and emotions rush through you, you might have already decided to take up the role to care for your loved one, particularly if the patient prefers to die at home. But how prepared are you for the role?
Dr Benjamin Tan, resident doctor at Agape Methodist Hospital, said: “The enormous task of keeping the dying patient comfortable at home can lead to panic, and if not pre-empted, might result in 11th-hour hospital admissions. The worst scenario would be, the patient dies en-route to hospital.”
When you embark on the caregiver’s role, there are a few things to remember:
Handle the emotions. You may be swamped with sorrow, anxiety and even feelings of guilt. You might be sad or even angry that your loved one is going to die. You may even feel overwhelmed with helplessness. Depending on the relationship with the patient, you might feel guilty for having neglected or for bearing grudges against the person. Talk to someone about this or join a support group.
Be aware of stress. The greatest stress stems from not knowing how to alleviate the suffering of your loved one and watching life ebb away from him. Other stresses include increase in financial commitments and responsibilities. Finding time away periodically from this caregiving role allows you to be refreshed and able to fulfill your role better.
Understand the task at hand. Read up on what to expect for end-of-life care. Recognise the symptoms and understand them. Sufficient information on how to keep your loved one comfortable can lower the levels of anxiety that you may experience.
Give practical care. Your loved one will have increased his dependence on you for his daily needs, such as bathing, feeding and toileting. Your physical strength will be stretched. Keep yourself healthy by eating a balanced diet and exercising regularly.
Face death. Your loved one needs your support to face death. Find ways to talk to him about it. It may be through indirect ways, such as a song that you heard together. Find out his worries and emotions. Listen rather than tell him not to worry or not to be angry. When your loved one can express his thoughts and feelings freely, he is more able to accept death. Find out his last wishes and try to find ways to fulfill them.
You don’t have to do this alone. Agape Methodist Hospice is a homecare palliative service manned by a team of doctors, nurses, and medical social workers. They can provide medical and nursing services such as symptom and pain relief, as well as emotional and spiritual support for you and your loved ones.