When a person is dying, he or she is not the only one affected, not the only one who has lost the lifestyle that was formerly shared, not the only one who has been dealt a devastating blow. The family member who is the main caregiver suffers as well.
The health care literature says caregiving is satisfying work, because it is an expression of love for someone who is important to you. That is only part of the story. Caregiving can also be difficult. It involves not only the task of doing, but also the task of coping, figuring out creative solutions and working at how to keep one’s head above water.
If the illness is prolonged, a normal caregiver may also feel other feelings – tied down, isolated, lonely, frustrated, sad, pushed beyond physical endurance.
Then there are those feelings of guilt for sometimes acting in a resentful, angry way, feeling sorry for yourself about being robbed of your own life and questioning what you have done to deserve such misery – and then feeling guilty for feeling any of those things.
As the patient grows weaker, the caregiver takes over. Whatever the patient can no longer do, they do. At the beginning both were horrified together, but gradually they may emotionally move apart because they are on separate journeys through grief.
“How is he/she doing?” caregivers are often asked, but at some point they will wonder why no one ever asks about them. It is even common to feel as though they are losing their own identity and no longer exist.
It is normal to feel angry with God, which does not mean a person has lost their faith. It just means the caregiver is exhausted and longs to be rescued. It is normal to feel angry at the doctors, which does not mean they are no longer trusted. It just means desperately wanting a cure and a longing to have the old life back.
It is normal to feel angry at other family members who may not be adequately sharing the responsibility of caregiving, which does not mean they are no longer loved. It just means help is needed.
A common phrase for this is compassion fatigue. It is a normal part of the process and does not mean the patient is no longer loved nor cared about. What it does mean is that caregivers must make a commitment to care about themselves as well and understand asking for help is not a weakness. It is a necessity.
Some people are better at asking for help than others, but family and friends need to be as alert to the wellbeing of the caregiver as they are to the needs of the patient.
Help with proper nutrition – casseroles in the freezer, healthy snacks and often staying with the patient while the caregiver gets out of the house to share a meal with a friend.
Other things for which to be alert are adequate sleep because lack of rest is a major contributor to depression and exhaustion and regular exercise because it is a guaranteed stress reducer.
If the caregiver is not helped to manage their stress level, they too may become physically ill. Headaches, ulcers, gastrointestinal problems, muscle spasms are common.
A therapist or a support group can be a lifesaver for some. A caregiver needs a safe place where he or she will not be judged to voice the confusion of feelings that begins to run rampant. If they do not have a place to be honest about their own feelings, they will eventually become re-active – wanting to escape or lashing out in anger.
The bottom line is caregivers need care too. It is not selfish. It is surviving.