Caregiving at the End of Life

The focus of caregiving often shifts at the end of life, which can trigger both emotional and practical challenges. In this article, we discuss some of the communication challenges, practical tasks, and emotional needs you might face, and offer suggestions on how you can address them.

Talking about Dying

Communication can be especially challenging at the end of life, when health needs and priorities are changing. However, it is more important than ever to communicate with both health care providers and your loved one to ensure that their wishes are being followed.

1. Talking with health care providers – As a caregiver, you will often be one of the main points of contact with health care providers. Learning more about how to communicate effectively with health care providers will help you to understand and navigate this process.
2. Talking with someone who is dying – Although starting a conversation about dying can be difficult, it is important to feel that you understand your loved one’s wishes and that you have said all you need to.
3. Talking with others – It can be helpful to discuss your experiences and concerns with others who are facing similar challenges. Caregiving organizations like Ontario Caregiver Organization, the Alzheimer Society, and Circle of Care can help you connect with other caregivers and family who are facing the end of a life.

Preparing for the Death of a Loved One

People often struggle to make decisions while grieving. Although it is impossible to plan for everything, you can reduce the stress by taking some practical steps in advance. Focusing on these practical steps can also help you to untangle the emotional, financial, and social aspects of the end of life.

1. Plan for end-of life care – Many decisions and practical tasks need to be dealt with at the end of life and immediately after a death. Advance Care Planning can provide guidance on how to make those decisions and who should make them. If you are a primary decision-maker or executor, you will also need to know where to find important financial and legal documents and how to access them.
2. Know what to expect – A person’s needs and body can change dramatically near the end of life. Knowing what to expect and how to respond can make this process less frightening. In addition to emotional turmoil, there are a lot of practical steps that need to be taken when someone dies. It may help to familiarize yourself with what happens after a death, so that you will be ready when the time comes. Consider printing out these guides so that you can take notes and refer to them easily when you need to.
3. Know what benefits and services are available and how to access them – Depending on your situation, you may be eligible for caregiving benefits and leave via the Government of Canada. You are also entitled to up to two days of unpaid bereavement leave if you have been employed for at least two consecutive weeks. Depending on your employer, you may have additional leave or benefits available.

Finding Support

Caregiving is an important job, which is why it is especially important to take care of yourself as well. In addition to physical and practical support like home care and respite care, you also need emotional support.

1. Lean on others – Circle of Care’s hospice program provides hospice volunteers, information, and resources to help you and your loved one navigate the end-of-life journey. The Ontario Caregiver Organization also offers many programs and resources for caregivers, including a 24/7 Ontario Caregiver Helpline 1-833-416-CARE (2273), counselling, and peer support.
2. Learn from others – Learning more about end-of-life care and grief can help you to feel less alone. Hospice Toronto, Hospice Palliative Care Ontario, and Virtual Hospice offer a wealth of resources for caregivers and family members facing the death of a loved one.
3. Talk to others – Grief is a necessary but difficult phase of the end-of-life caregiving process. Many organizations, including Circle of Care offer bereavement support for family and caregivers during this difficult transition.

Losing a loved one is never easy, but you can make it a bit more bearable by talking about it, preparing for it, and finding support. With the right resources, you can focus on easing the transition and celebrating the life of your loved one.