Anticipatory Grief, Caregiver Burnout, and the Primacy of Respite Care
During the last bed-bound month of my beloved husband’s battle with Glioblastoma brain cancer, I did not want to leave his side. As his wife and soul mate of thirty-four years, registered nurse, and caregiver class instructor, I felt that no one could provide his end-of-life care as well as I could.
However, when the hospice staff and my family members recognized that I was at risk for experiencing what is referred to in the medical world as “caregiver burnout,” since I was feeling constantly exhausted, they insisted that I at least take some short breaks and go for a run or to the grocery store.
According to Area Agency on Aging (http://www.agingcarefl.org/ 2013), signs and symptoms of Caregiver Burnout include:
- Being on the verge of tears or crying a lot
- Feeling helpless or hopeless
- Overreacting to minor nuisances
- Feeling constantly exhausted
- Losing interest in work
- Decrease in productivity of work
- Withdrawing from social contacts
- Increasing use of alcohol or stimulants
- Nervous habits such as chain smoking
- Change in eating patterns
- Change in sleeping patterns
- Increasing use of medications for sleeplessness, anxiety, depression
- Inability to relax
- Scattered thinking
- Feeling increasingly resentful
- Frequently being short-tempered with care recipient frequently
When I eventually took some breaks and left our home, I felt less burdened, lighter. During my runs along our favorite wooded trail by a lovely running stream I allowed myself to sob and release my pent up anticipatory grief. Anticipatory grief is simply the process of normal grieving that begins before the death of a loved one. Caregivers with anticipatory grief–especially caregivers whose loved ones are not ready to sign up for Hospice services–can benefit from one-on-one grief coaching sessions by phone in their own home that will help them express and release their feelings, prevent caregiver burnout, and handle end-of-life family issues.
During my husband’s last week of life I became so exhausted that the Hospice social worker and my daughter encouraged me to to hire paid respite caregivers for night time caregiving responsibilities so that I could get some sleep. The hired respite caregivers provided a valuable service, well worth the price (the term “respite” refers to a short period of rest or relief from something difficult).
According to physician Jeff Kane (2013:67), studies have found that “caregivers are at risk for high blood pressure, impaired immunity, and cardiovascular disease. [What is more] spousal caregivers over sixty-six and older have a sixty-three percent higher mortality rate than non-caregivers the same age” (Kane 2013). In other words, sixty-three percent of caregivers over the age of sixty-six die before their terminally ill loved ones. While I was fifty-six when my husband died, I was, nonetheless, physically and emotionally exhausted by grief and caregiving. Yet my respite breaks offered a huge relief.
The Area Agency on Aging (http://www.agingcarefl.org/caregiver) informs us of ways to take a short respite break every day, urging us to do something nice for ourselves. Here are a few ideas [my next blog will address more caregiver's self care tips].
- take a short respite break every day by doing something just for you.
- have a cup of tea or cocoa or a glass of sparkling water
- read your favorite section of the newspaper
- pet the dog or cat
- work in one flower bed or garden patch
- feed and watch birds or fish
- read a magazine or one chapter of a book
- enjoy a bubble bath or shower with music and candles
- watch escapism movies or television programs
- spend time in a private spot in the home or yard
- call a friend or schedule a grief coach by phone session
- meditate for fifteen minutes.
- use the Internet for fun and to plan outings.
2013 Area Agency on Aging. (http://www.agingcarefl.org/ 2013)
2013 Kane, Jeff. The Bedside Manifesto: Healing the Heart of Healthcare.