Chapter 1: What am I getting myself into?


The caregiver role

The palliative care expert says
Description to come (3:22)Video transcript
The expert says
Description to come (3:22)Video transcript

I knew it was going to be hard and exhausting; I just didn’t know how hard and exhausting. I’m not sure if anything could have prepared me.

The nature of being a caregiver will vary for each person and home situation. It will vary depending on the illness and care needs of the person you are caring for. It is important to define and understand what being a caregiver will mean for you.  

As a caregiver you are devoting time, energy, and emotions to provide unpaid care for someone who may or may not be a family member. At times you may feel optimistic and confident in the caregiving work you do, and at other times you may feel overwhelmed, undertrained, and under-supported. You may be the only caregiver, one of many caregivers, or someone who is providing support from a distance.

Below are some of the tasks you may be involved in as a caregiver. Click on each tab on the left to see a corresponding list.

Supporting decision-making, goals of care, and advance care planning.

Supporting final wishes.

Another consideration is that as an illness progresses, the person who is ill may lose their ability to function independently, become more tired, and become more dependent on help.

This can increase the “heavy” care you are providing. As illness advances and the person spends more time in bed and sleeping, the physical care demands may lessen. However, you may find that your own emotional needs increase.

What may help

Supports

In many communities, support services such as home care and others can provide assistance and equipment to help you. Some private and group insurance plans cover some costs of care.