caregiver has been the recipient of at least
one unprovoked outburst from a loved one. The
hurtful experience is difficult to accept when
the caregiver made a substantial sacrifice,
one involving irreversible social and financial
Joyce, a mental health administrator, was married
for forty years to a considerate man she loved.
Mitch, who smoked for sixty years, developed
Stage 4 lung cancer forcing him into an early
With an insufficient company health plan, no
retirement program, and limited savings, the
couple faced a crisis: where Mitch would receive
care for the last six months of his life.
would cover all costs at a poorly rated nursing
home facility, some costs at a mediocre facility,
and few costs for 24/7 in-home care. Stand-alone
hospice facilities did not exist in their area.
and Personality Changes
Joyce faced a painful choice: place her husband
in the poorly rated nursing facility since that
was all they could afford or quit her job, take
early retirement and care for Mitch until his
death. She chose retirement. As Mitch’s
condition deteriorated, the loving partner of
forty years became an ungrateful, demanding
patient who could not recognize Joyce’s
sacrifices. She began feeling regret about her
choice during these outbursts, followed by guilt.
whose health deteriorate to a level requiring
care experience substantial losses.
lost his job, social contacts, golf (his passion)
and dreams of blissful years in a retirement
community with Joyce. The “pre-lung cancer”
Mitch was not the same person as the terminally-ill
Mitch, who knew his life would be over in six
change people in ways often misunderstood.
People who were kind, understanding, and compassionate,
still have these qualities, but express them
less often and with less intensity. Folks who
were ornery their entire life, remain so, but
have a little more intensity in their expression.
I’m sure exceptions exist to my thirteen
years of caregiving observations. Yes, some
people regardless of their pre-illness life
become more grateful, but expecting gratitude
for everything you do can lead to disappointment
and even burn-out.
What I and other caregivers found helpful was
not to take the anger or ingratitude personally
of those for whom we care. Their losses overshadow
the need for “good manners.” Yes,
a husband should be grateful his wife eliminated
most social contacts to care for him. A mother
should be grateful her daughter moved back home
to care for her. But what the husband should
do may be overwhelmed by his fear of dying.
The mother might find the expression of thanks
unimportant compared with the acceptance of
trashed retirement dreams.
Changes in identity occur as losses accumulate.
Rarely are the changes positive. Life and interactions
change when significant portions of a person’s
identity are stripped away. The avid tennis
player who anticipated her outing with friends
is not the same person who sits in her wheelchair
on Saturday wishing she was on the court.
anger, ingratitude and criticism hurled at you
by your loved one says more about his losses
and needs than anything you did wrong, as was
the case with a woman I counseled.
and her husband had a wonderful life together
for fifty years until the first signs of dementia
appeared. The neurologist was blunt: his decline
would be dramatic. Within a few months, the
once compassionate husband became an angry,
ungrateful spouse finding nothing positive in
his wife’s caregiving efforts. She had
professional caregivers help for a few hours
a week although she could afford many more,
believing nobody could care for her husband
as well as she could.
admitted feeling both angry and guilty when
I counseled her. Angry because he didn’t
appreciate her efforts. Guilty because she couldn’t
meet his needs. These two emotions, anger and
guilt, are common among caregivers and often
result from not understanding how the changes
in their loved one’s health affect interactions.
Anger can stem from someone’s behavior
or words. You think “If I were him, I
wouldn’t act that way.” But the
world of a healthy person and someone requiring
care is different. Each produces its own set
of perceptions often resulting in clashes. What
seems obvious to a caregiver may be obscure
to the person receiving care, and vice versa.
implies the caregiver should have the ability
to meet a loved one’s needs. But should
they? Some people believe only compassion and
love are necessary for quality caregiving. While
important, they alone aren’t sufficient
but serve as a starting point.
of how to provide care is obtained either through
experience or written information. The intensive
caregiving knowledge required by Joyce and the
woman whose husband developed Alzheimer’s
had no precedents in their lives. And when they
assumed a caregiver role, the time available
to read about the how’s of caregiving
to Interpret Anger and Ingratitude
The next time you experience ingratitude or
are the brunt of anger, don’t take the
affront personally. Rather place yourself in
your loved one’s position to grasp the
significance of her loss. Try to imagine how
your life would change if tomorrow you started
experiencing the constant fatigue of congestive
heart failure, the inability to communicate
basic needs because of a stroke, the nausea
resulting from chemotherapy or any of the hundreds
of significant losses loved ones experience.
You’ll come to understand unskillful words
and behaviors are an expression of an identity’s
disintegration. It’s not about you.