Chapter 1: What am I getting myself into?
The caregiver role
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.
Being a caregiver is unique for each person and home situation. It will depend on the person’s illness and their care needs, your relationships with the person you are caring for and others who may be supporting them, and resources that are available in your community. It’s 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. At times you may feel optimistic and confident in the caregiving work, and at other times you may feel overwhelmed, undertrained, and unsupported. You may be the main caregiver, one of many people providing care, 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 to see a corresponding list.
Helping with mobility, washing, bathing, and toileting.
Giving medications, changing dressings, monitoring symptoms, and managing a catheter.
Healthcare visits, appointments, and services in the home such as home care or wound management.
Coordinating family involvement, visitors, and meetings.
Preparing meals, cleaning, laundry, shopping, home maintenance and finances.
Caring for children and pets.
Supporting decision-making and advance care planning.
Supporting the person's final wishes.
As an illness progresses, it’s important to consider that the person may lose their ability to function independently, becoming more tired and more dependent on help.
This can increase the amount of “heavy” care you are providing. As illness advances and the person spends more time in bed and asleep, the physical care demands may lessen. However, it is normal and natural to find that your emotional needs may increase.
What may help
In many communities, support services such as home care and community volunteer groups can provide assistance and equipment to help you. Some private and group insurance plans may cover the costs of care.