Caregiving can begin with a moment’s notice, as Beth discovered.
Her elderly mother, widowed and living
independently in the Midwest, had suffered a
disabling stroke. Beth, the youngest of six
children, willingly responded since she lived
closer than her siblings did and felt capable of
providing help. Once the health crisis
stabilized, Beth moved her mother four hundred
miles across the state and into her home with
her husband and two preschool-age children. This
is where she began her journey as a caregiver.
Initially, Beth felt confident about her new role as a caregiver
for her mother. She wanted to offer the same
love and support that her mother had given to
her over the years. She optimistically assumed
her mother would get well in a short time, would
return home and continue living independently.
All intentions were good and it seemed
everything was going in the right direction. She
hadn’t anticipated, however, the possibility of
a second small stroke and pneumonia, the stress
on herself, and her family or her mother’s need
for on-going medical care and rehabilitation.
Financial and legal issues were also unclear as
Beth attempted to manage her mother’s affairs.
Weeks turned to months and Beth and her family
found themselves facing new and unexpected
challenges.
As time went on, Beth now felt an uncertainty about her role as a
caregiver. She noticed changes in her mother’s
memory, patience and daily moods. She also
showed signs of depression and strongly missed
her own home, church and social life amongst
friends. It became clear that her mother was not
happy living with her and coping with her
family’s busy and often hectic schedule. Beth
began to lose patience and noticed the effects
on her own health, marriage, and ability to
parent two young children.
The choice of providing care for her mother was also taking an
emotional toll on the mother/daughter
relationship. An unfamiliar role emerged as Beth
found herself “parenting” her own mother and she
felt very unsettled with her feelings. In
addition, her mother faced the uncertainty of
her own role in her daughter’s household as it
related to meals, kitchen duties and daily
decisions. They were both caught in a struggle
they were not prepared for as adults.
Six months of caregiving finally gave way to a difficult reality as
Beth questioned whether she could continue to
make sacrifices and care for her mother in her
home. She began to struggle between her feelings
of guilt, resentment and what was best for her
mother, her own family, marriage and needs as a
mother and young woman. She realized the life
she once knew was slipping away and the time had
come to reevaluate everyone’s needs.
Five siblings and their spouses, who were scattered across the
country, were consulted on their mother’s
future. Although each one cared and was well
meaning, there were ten opinions on what was
“best for mother” and her personal affairs. Some
believed their mother should return to her
hometown and hire help even though it was
hundreds of miles from any family members.
Others felt that they could take turns caring
for her by moving her from state to state and
house to house. Assisted living was an option while
others felt strongly that she should just remain
at Beth’s house, indefinitely. It then occurred
to Beth that she and her siblings had never
planned ahead for their mother’s care after
their father died and they’d never made a joint
family decision prior to this event. Coming to a
consensus was going to be difficult.
At this point, Beth conferred with a caregiver consultant who
listened to her needs and concerns. She helped
her gain a perspective of her situation,
discussed care alternatives and connected her
with several resources. Best of all, Beth was
able to consider other possibilities for care
outside of her home and was encouraged to visit
local assisted living facilities. She also found
the courage to discuss these options with her
siblings and eventually gained additional
support from them.
Soon, Beth took her mother to tour several assisted-living homes in
the area. Some provided individual rooms while
others offered full-size apartments. All of the
facilities offered activities, meals,
housekeeping and personal care assistance.
Initially, her mother was extremely hesitant to
consider moving and was unsure about leaving the
familiarity of Beth’s home. In her mind, she was
still planning to return to her own home and
resume the life she had prior to the stroke. The
family knew at this point that she could not
return and agreed that the homestead had to be
sold to help pay for their mother’s future care.
They convinced their mother that moving to
assisted living near Beth was the best plan “for
now.” A beautiful apartment became available,
but it took weeks for Beth’s mother to agree to
actually move. Surprisingly, within days of
moving into the apartment, she had made new
acquaintances, joined exercise and coffee groups
and had volunteered to play the organ for the
church services (a skill that had miraculously
remained intact after the strokes!).
The caregiving journey continues for Beth, yet she has gained
valuable knowledge, coordinated communication
between her siblings, made positive decisions
with and for her mother, and rebalanced the
needs of herself and her own family. An
unexpected change also occurred when the focus
on daily caregiving was exchanged for a focus on
a loving mother/daughter relationship. To this
day, Beth’s mother is thriving and remains
socially involved at her assisted-living
complex.
These important suggestions are shared with readers who may face a
similar life-changing event.
Arrange for a family meeting either by conference calls or in
person to discuss the care needs of parents, home care or
housing options and how each family member can assist with
the identified needs. A caregiver consultant or social
worker may be used as a group mediator. It is strongly
suggested that this meeting occur prior to a health crisis,
especially with large families, to promote communication,
maximize care-planning options and minimize stress.
Include parents in the planning and decision-making process as much
as possible. Encourage parents to begin their own life
planning as a “gift” to the family before they are no longer able to make
personal or legal decisions.
Seek support from community resources such as caregiver
consultants, geriatric social workers, senior outreach
programs, respite care programs, medical professionals or
Area Agencies on Aging. Start with the Yellow Pages, do an
Internet search or contact the local social service office.
Inquire about a trial or short-term stay at an assisted living
facility if your parent refuses to consider a permanent
residency. Some people hesitate to move because they think
they will lose their independence, when they often find the
opposite to be true.
Discuss legal affairs and pre-plan if possible. This includes
choosing an executor of the estate, completing wills and
power of attorney, and preparing a health care directive,
making property decisions (homestead, land, auto, etc.),
financial planning (who will be named on parent’s accounts)
and even funeral pre-planning.
Caregiving does not have to be done alone and asking for help is
encouraged. Keep your own mental and physical
health needs a priority. Understand that caregiving decisions are never easy and that
your initial intentions and plans to provide
care may need to change. Finally, give yourself
credit for seeking options and attempting to
provide the very best care and support for your
parents.