According to a 2015 report by the National Alliance of Caregivers, approximately 43.5 million adults in the United States provided unpaid care to an adult or child in 2015. Caregivers come from diverse demographic backgrounds, but a majority of them provide care for a relative, with one in ten taking care of a spouse.
Nearly one in ten caregivers is 75 years or older, mostly caregiving for a spouse at a time in their lives when their income may be fixed. They shoulder not only the emotional burden, but also the financial strain of managing household expenses for themselves and their spouses. The Mayo Clinic reports that 80 percent of longterm care in the U.S. is provided by informal (unpaid) caregivers.
Most caregivers help with arranging doctor and hospital visits, dealing with insurance and payment issues, the activities of daily living and medical/nursing tasks.
For GIST caregivers, this also means monitoring treatment that is life long, including dealing with regular scans and the “scanxiety” which accompanies them. It means constant vigilance for medication compliance, helping with side effects and dealing with the challenges the patient faces.
It often means acting as an advocate for the patient, assuring that if and when they are admitted to the hospital, there is a collaborative effort on the part of the medical team and all of the patient’s medical history is taken into consideration.
Many caregivers report a decline in their own health due to their role. This may be a result of the stress involved in caretaking, but may also be due to age-related factors.
Caregiver stress is a recognized diagnosis in the world of mental health. It is important to recognize that many of the tasks of caregiving can be the catalyst for a host of emotions that are perfectly normal:
- Social isolation
Many of the feelings that arise for caregivers come from a physical source. Being mentally and physically exhausted can result in symptoms such as feeling tired all the time, sleeping too much or too little, overeating or not eating regularly, not exercising, coming down with frequent illnesses due to a weakened immune system, or abusing alcohol or drugs to cope with painful emotions.
Too much stress can have catastrophic consequences. It can result in “burnout” or as Norman Scherzer, LRG Executive Director, describes it, “battle fatigue.” This is a very valid description, as each and every day GIST patients and their caregivers battle the dragon that is cancer.
Signs of battle fatigue include:
- Having less energy than usual
- Feeling constantly anxious
- Being exhausted in spite of adequate rest
- Feeling like you are on an emotional roller coaster
- Neglecting your own needs
- Spending a majority of your time with caregiving-related tasks
- Having little or no time or interest in things that used to give you pleasure
- It is time to put the brakes on caregiver burnout. It is time to S.T.O.P.
S: Seek help. Ask others to pick up some of the daily tasks that you perform. Share your feelings with friends, family, clergy or in a support group. Say “yes” when someone offers to help.
T: Take time for yourself. Find someone to spend time with your loved one so you can go to the gym, walk around the block, read a good book or have coffee with a friend. Tell someone when you feel overwhelmed. Take a class in meditation or yoga.
O: Overcome your desire to be “superman” or “superwoman.” Admit when you are in need of rest. Take advantage of opportunities for pleasurable social occasions.
P: Pamper yourself. Get a manicure. Schedule a massage. Promise you will not let yourself become exhausted, frightened or overwhelmed. Plan regular doctor’s visits for yourself, including an annual physical. Seek psychological support if you are overly anxious or severely depressed.
It is vital for caregivers to care for themselves first. Without this “radical self-care,” the ability to care for someone else is not only difficult, but often impossible. The analogy of oxygen masks on an airplane is a valid one: You must put on your own oxygen mask first in order to be able to extend aid to others.
In 12-step programs such as Alcoholics Anonymous and Alanon, there are very helpful tools for both recovering alcoholics and their family members. These tools can easily be utilized by caregivers. One of the tools is learning the “three Cs: You didn’t cause it, you can’t control it, and you can’t cure it.” This helps to take take away the over-responsibility you may feel and the survivor’s guilt you may have for not having the disease.
Other slogans from Alanon that may help caregivers are: “Easy Does It”, “How Important Is It?”, “First Things First”, and “One Day at A Time.” These are reminders that, as caregivers we need to prioritize and not allow ourselves to be overwhelmed by the big picture that is caring for someone with GIST.
Putting oneself first is not selfish. It is self-focused, which allows one to become strong enough to go to battle each and every day.
At the LRG, we remind caregivers of one of the most important facts: You are not alone. This community will be your life preserver when you are having difficulty keeping your head above water.