Terminal Illness Caregiver

In the following Q&A, Alice Poulin, LCPC, CCS, Clinical Supervisor of Adult Inpatient Services at Northern Light Acadia Hospital offers direction for those who have become caregivers of a loved one with a terminal illness.

How can I emotionally prepare myself for the end-of-life journey of my loved one?

Be honest, be kind!

What are some ways to communicate with my loved one about their wishes and preferences for end-of-life care?

Establishing an Advanced Directive is a good starting point; this document will guide you through questions and answers.

How can I manage feelings of grief and anticipatory loss while caregiving?

Be honest about your feelings with family and yourself. Normalize these feelings and approaches them with a sense of curiosity, this will spark self-compassion verse self-judgement and criticism.

How can I balance the emotional and practical demands of caregiving with my own self-care needs?

Allow outside help to assist family, friends, hospice. Make sure as a caregiver, you prioritize sleep, healthy diet, exercise, and movement. Reflect on your own limits, recognize these, and accept these.

What are some resources available for end-of-life planning and support?

Connect with hospice – this team will guide you through end-of life planning and support. Connect with your chaplain if applicable, have open communication with supportive friends and family members and contact legal advice if there are legal needs such as establishing a will.

How can I navigate changes in our relationship dynamics as the illness progresses?

Create an environment where parties feel comfortable speaking honestly together. The caregiver can reach out the hospice social worker about concerns and ways to manage difficult conversations.

How can I manage family conflicts or disagreements that may arise during this time?

Depending on the nature of the conflict, the patient has the right to guide health care. This may cause conflict between the patient receiving care and their natural support system. Is important to support the patient in what they want regarding pain medications, personal care, etc.

What are some ways to create meaningful moments and memories with my loved one during this time?

Great ways to create meaningful moments and memories during this time are to share fond memories together, laugh about fun times and review photos together.

How can I cope with feelings of guilt or regret that may come up during caregiving?

Guilt and regret are normal feelings, this is okay! Embrace and recognize the guilt and regret, allow yourself to feel these feelings and allow them to pass.

How can I continue to care for myself emotionally and practically after the loss of my loved one?

Hospice offers bereavement support for 13 months after the death. Continue to try to eat well, sleep and exercise. In bleak moments, call a friend or family member. Have a purpose for getting up every day. Find things that gave you joy; you can feel joy and grief at the same time. The feelings of relief after death can be normal!

Anything else you would add to assist a caregiver in managing their mental health while caring for a loved one who is terminal?

Keep in mind that everything you’re feeling is normal, have self-compassion and know that there is a network of support available for you.