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 ( 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 ( 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. ( 2013)

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


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About the Author
Patricia Johnston is the owner of Purple Lotus Coaching and a certified life coach with a specialty in grief and loss. She helps her clients release the pain of grief, find peace, joy, and life purpose and create their new normal after loss. Patricia's professional background includes work as a certified life coach, registered nurse, caregiver educator, caregiver support group facilitator, hospice organization consultant, and cultural anthropology professor who has studied grief and loss customs and rituals around the world. Additionally, Patricia has experienced many personal losses, including her husband of 34 years, Doug Johnston, a former Nevada City, California Family Practice doctor in 2007. After experiencing valuable grief coaching for her own loss, Patricia decided to share the wisdom and compassion gained from her experiences. To that end she studied life coaching with The Institute for Professional Excellence in Coaching (iPEC)and opened her own practice, which, together with her engagement to fiancé Larry Casserly, has created a bright new chapter in her life. "The lotus, which rises up out of the mud to blossom above the water, is a cross-cultural symbol of transformation. To me the lotus’s transition from darkness to light represents the journey from grief to growth through the process of grief coaching.” ~Patricia Johnston .
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