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.

Work Cited

2013 Area Agency on Aging. (http://www.agingcarefl.org/ 2013)

2013 Kane, Jeff. The Bedside Manifesto: Healing the Heart of Healthcare.