Table Of ContentSPRINGER BRIEFS IN WELLBEING AND
QUALITY OF LIFE RESEARCH
John G. Bruhn
After Diagnosis:
Family Caregiving
with Hospice
Patients
123
SpringerBriefs in Well-Being and Quality
of Life Research
More information about this series at http://www.springer.com/series/10150
John G. Bruhn
After Diagnosis: Family
Caregiving with Hospice
Patients
123
JohnG.Bruhn
Department ofSociology
Northern ArizonaUniversity
Flagstaff, AZ
USA
ISSN 2211-7644 ISSN 2211-7652 (electronic)
SpringerBriefs inWell-Being andQuality of LifeResearch
ISBN978-3-319-29801-6 ISBN978-3-319-29803-0 (eBook)
DOI 10.1007/978-3-319-29803-0
LibraryofCongressControlNumber:2016931842
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To the hospice patients
who inspire others to live
hopefully and to die courageously
Old friends pass away, new friends appear. It is just like
the days.
An old day passes, a new day arrives.
The important thing is to make it meaningful:
a meaningful friend – or a meaningful day.
—Dalai Lama
There is a light in this world, a healing spirit more
powerful than any darkness we may encounter. We
sometimes lose sight of this force when there is suffering,
and too much pain. Then suddenly, the spirit will emerge
through the lives of ordinary people who hear a call and
answer in extraordinary ways.
—Mother Teresa
Acknowledgments
Hospice provided me with the opportunity to participate as a volunteer respite
caregiver over the past 10 years. Periodic workshops and peer-group gatherings
enabledvolunteerstoshareexperiences,gainsupportfromeachother,andbecome
advocates for hospice as an excellent option for terminal care.
Tracy Grindle typed numerous drafts of this book and provided valued sug-
gestions. Vince Colburn contributed his excellent skills in graphic art.
ix
A Note to Readers
All of the patient examples and narratives are real, but details regarding demo-
graphics and social and psychological factors have been altered to protect patient
privacy and identity. The patients were assigned to me for respite care until they
passed. I did not interview patients or use a standard questionnaire or a recording
device.Mydatawasprimarilybasedonmyobservationandinteractionwithfamily
members. This is a book of reflective learning and is not intended to be a formal,
scientificstudy.Iwas“with”patientsforanaverageoftwotofourhoursweeklyfor
about six months. My rolewas asa respite volunteerwhoenabled thecaregiver to
experience unstructured time (respite).
xi
Contents
1 Who are Caregivers?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Becoming a Caregiver . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Caregiving: A Dynamic Relationship. . . . . . . . . . . . . . . . . . . . . . . . . 4
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
2 Time as a Concept in Caregiving . . . . . . . . . . . . . . . . . . . . . . . . . . 7
The Limits of Time. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Fitting Living into Dying. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
3 The Emotional Roller Coaster of Caregiving. . . . . . . . . . . . . . . . . . 17
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
4 Dying Is a Team Effort . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
5 Spirit: The Timekeeper . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Dying More Than Once. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Time: The Great Equalizer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
6 Holding on and Giving Up. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
The Family—A Healing System. . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Afterthe Angels Have Left. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
Lingering Loss . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33
Multiple Loss . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
7 Healing Behavior for Caregivers. . . . . . . . . . . . . . . . . . . . . . . . . . . 37
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
8 Vignettes of Family Caregiving. . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
Whatto Do About Aunt Mary?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
Good Transitions for a Determined Dad. . . . . . . . . . . . . . . . . . . . . . . 46
xiii
