How does a caregiver know when he or she can
no longer manage the daily caregiving routines
and planning responsibilities? What signals
alert the caregiver that he or she is in trouble
of getting lost in caregiving? Can a caregiver
who cherishes a loved one set limits on
responsibilities without feeling guilty or
morally bankrupt? These are questions at the
heart of successful, long-term caregiving.
Unfortunately, for most caregivers, these
questions do not arise until they are feeling
overwhelmed and depleted. Being able to say,
“No, I can no longer continue to provide care in
this way,” may not only save the caregiver from
emotional and physical burnout, but can also
open up opportunities of shared caregiving
responsibilities with others while deepening the
level of honesty and openness in the
relationship.
Saying “No” may seem like a harsh statement to
a caregiver who prides herself on being a helpful,
kind and loving person. In fact, most caregivers
choose to become one because they feel a moral
imperative to do so. This imperative may come from a
number of sources including family relationships and
roles, friendship ties and social expectations.
Families often select the primary caregiver from
cultural norms such as the youngest unmarried
daughter or the oldest son as being responsible for
a parent’s care. Friendship ties provide many single
elders with caregivers who act in lieu of local
family members. In the United States, the social
norm is for family and friends to provide care to
elders first before the government. Current
statistics show that the majority of elder care is
provided by families and other members of an elder’s
informal social network. Proximity is also a
component in caregiving. The closer one is
geographically to a loved one, the more likely he or
she will become the caregiver. Personal values
derived from one’s faith or spiritual practices may
lead a person to feel called to provide care. Moral
decision making based on humanistic values such as,
“Everyone has the right to stay at home if they
choose no matter what,” may encourage a person to
become a caregiver. Wherever the imperative is
coming from, the role of the caregiver is intimately
linked to that person’s code of ethics and the way
in which the person chooses to act in his or her own
life.
What does saying “No “mean anyway?
Is it a final giving up of duties that implies
the caregiver is ending the relationship and leaving
a loved one to fend for himself? Maybe the “No”
means, “I’m tired and feel trapped.” Maybe the “No”
means, “I have failed to be all I could be as a
caregiver.” Maybe the “No” means, “I can’t do what
you want me to do and I feel inadequate.” Or maybe
the “No” just means, “ I am so tired, I have to
stop.” The word “No” can have different meanings for
different people. “No” doesn’t necessarily have to
have a negative connotation attached to its meaning.
“No” can be understood as a pause, a time for
reflection, a breathing period or, “Let’s stop and
talk this over. Things need to change.”
Exploring the meaning of “No” for the
caregiver is often the first step in establishing
better emotional boundaries.
Healthy emotional boundaries are important in
helping the caregiver distinguish between his or her
own needs and the needs of the person being cared
for.
Boundaries remind the caregiver and elder that their
relationship is between two adults and that there
need to be expectations of mutual respect and
autonomy for the relationship to be successful.
The ideal time to discuss caregiving
boundaries is in the beginning when both people are
new to the process of developing this special
relationship.Talking about needs in a calm and supportive
way allows each member to feel the other’s concern
while acknowledging that the relationship will have
some limitations. In an idealized world of caregiving, the care recipient could turn all
problems over to the caregiver without any worries
or stress and the caregiver would have limitless
capacity for love and work. But neither of these
situations is realistic. Getting off to a good start
by talking about boundaries as part of a healthy
relationship lays the groundwork for developing
emotional resilience and flexibility to respond to
an increase in the elder’s care needs, while
managing the inevitable caregiver stress.
In practice, most caregivers address the issue
of their own limits after the caregiving
relationship gains full steam. Caregivers often get
inducted into helping through a sudden major health
crisis of a loved one (such as a heart attack) or by
the slow but steady process of taking on tasks and
responsibilities for the elder as she experiences
aging and the loss of function. In either situation,
the caregiver and care recipient aren’t necessarily
thinking about being in a relationship but about
getting the jobs done that need to get done. In the
first instance, addressing the immediate and
critical health care needs of the elder takes
precedence over long-term care planning. However, as
soon as the elder is stable, the time is right for
the caregiver to discuss boundaries and limits. In
the second instance, caregivers need to raise the
issue of boundaries as soon as they begin to detect
the first signs of their own stress or burnout.
Signs such as avoiding the loved one, anger,
fatigue, depression, impaired sleep, poor health,
irritability or that terrible sense that there is
“no light at the end of the tunnel” are warnings
that the caregiver needs time off and support with
caregiving responsibilities.
Setting emotional limits involves a process of
change with five key steps.
First, the caregiver must admit that the
situation needs to change in order to sustain a
meaningful relationship. Without change, the
caregiver risks poor health, depression or premature
death. The primary caregiver is such an important
person to the elder that impaired caregiver health
puts the elder at further health risk. Second, the
caregiver must reconsider personal beliefs regarding
what it means to be a good caregiver. Since the
caregiver generally has moral expectations of his or
her own behavior, redefining what “should” be done
to what is reasonable and possible to do can be a
liberating moment. This may include lowering some
expectations of one’s ability to do things and
delegating tasks to others. Third, the caregiver
needs to identify key people (friends, family or
professionals) who can support and guide the
caregiver through this change process. Frequently,
caregivers join support groups with other caregivers
to reinforce their commitment to change or hire a
geriatric care manager coach. A support group is
also a place to express anger, anxiety, frustration
and sadness about the caregiving experience instead
of inadvertently having these feelings pop out
during a tense conversation with a loved one.
Fourth, the caregiver needs to develop communication
tools to express the need for boundaries. Honesty
and simplicity in talking about feelings and needs
does not come easily; particularly if one is not
familiar with having these types of direct
discussions. Lastly, the caregiver must be able to
sustain this new approach while allowing the elder
time, to react and express his or her feelings about
the changes. Readjusting the balance in any
relationship takes time, especially when both
members have competing needs.
There is a simple but effective communication approach that can help caregivers express
feelings and set boundaries.
This approach encourages the caregiver to
speak from an “I” point of view, in a
non-accusatory fashion, expressing the
caregiver’s limitations or feelings and offering
an alternate solution. Some examples of “I”
statements are:
“I can no longer drive you to all of your
medical appointments due to my work schedule and
my limited time off. I know this will be a
change for you. I suggest we look into other
transportation options such as the Busy Bee
Medical Transport Service.”
“Mother, I am unable to continue with the
responsibility of cleaning the house weekly. I
want to spend my time with you on other matters.
I know it’s hard to let newcomers help, but I
think it is time to hire a homemaker service you
would be comfortable with.”
“Dad, I
can no longer assist you down the outside
stairs. I am worried about your safety and mine.
I believe we need to build a ramp for easier
access to your home. I have found a carpenter
who has reasonable rates for construction.”
In each of
the above statements, there is a presentation of
what the speaker cannot continue to do, an
acknowledgement that the change will have a
consequence for the elder and a suggested
solution. No attempt is made to make the elder
feel guilty about the effort the caregiver is
expending or the caregiver’s stress level.It is understood the elder knows the
caregiver is working hard. Setting the boundary
is the caregiver’s responsibility. There is,
however, an invitation for discussion and joint
problem solving. At first, expressing boundaries
in “I” statements may feel awkward, but with
practice, caregivers can learn to raise
difficult topics by establishing a comfortable
atmosphere for discussion.
Initially, the caregiver may experience
resistance on the part of his or her loved one
to dialogue about changes as to the provision of
care. Gentle persistence is needed to attend to
the need for new boundaries. Discussions that
can be introduced at a time when both
individuals have lower stress and are feeling
quiet and comfortable with each other are
discussions that have a greater chance of
success. Avoid making decisions about change
during emergencies. Waiting until the situation
is calm, and both parties can take time to think
through issues, creates an atmosphere of joint
decision making and ownership of the outcome.
Making changes in small steps toward a larger
change gives everyone a chance to adapt
comfortably.
Caregiving is a dynamic relationship that
evolves over time. As caregiving tasks increase, so
will stress on the caregiver. A caregiver and his or
her loved one will manage this challenge
successfully if each person is able to express
directly what he or she needs, wants or can do. A
relationship that allows for and respects boundaries
and individual limitations can expand to include
other caregivers without the risk of lessening the
importance of the primary relationship that sustains
the elder in the aging process.
Deborah Colgan, MA, M.Ed., NCC, therapist and
educator, currently serves as the Director of
Community Development for South Shore Elder
Services, Inc., a private non-profit organization
that is the Area Agency on Aging and Aging Service
Access Point for eleven cities and towns in
southeastern Massachusetts. Ms. Colgan has provided
clinical and support services to families for the
past thirty years
