Chapter 6: Other caregiving situations

Caregiving over an extended period of time

As the weeks went by, I wondered how long she could keep fighting. They sent her home to die – that was weeks, months earlier.

Some people live with a progressive disease (such as a brain, heart, or lung disease) for a very long time, which takes a toll on caregivers, family members, and friends. Many caregivers say it can feel very overwhelming at times and as though there is no end in sight. 

Changes in the person’s mental or physical ability may be subtle but will add to your caregiving role. Over time these may complicate your feelings about your role. *Be sure to report any changes to your healthcare team and keep a close pulse on your own self-care and mental health.

Caregivers often don’t recognize how significantly their task load may increase as the person’s health declines. Many people have an “I can take that on” attitude, not realizing the impact it can have on them, their time, and their overall mental, emotional, and physical health. Eventually, the work and stress may become unmanageable.

In these cases, let your healthcare team know what is going on as they may be able to direct you to helpful resources, programs, additional home care help, and aides in your local area. In addition, don’t hesitate to reach out for help from family and friends for more involvement, and some relief and respite for you.

Helpful resources