A major frustration
for caregivers is trying to do what is in the best interest of your charge only
to have them challenge and/or resist you every step of the way. Nothing is more
frustrating than hearing, “It’s my life
and I can do what I want.”
Yes, they do
get to make that choice, but the caregiver also has the right and
responsibility to determine how much and how long they can serve in that
capacity.
The demands of
being a caregiver are enormous and can easily lead to burnout and high anxiety.
I worked with a caregivers group, where almost all of them either died or
became seriously ill before the “patient” succumbed to their illness.
Entry into
caregiving comes in different ways. The person has an emergent situation, such
as a heart attack or accident. At the beginning it’s addressing the immediate
needs but over time, the situation changes from acute to chronic care. Other
situations evolve over time, such as caring for an elderly parent or someone
whose chronic condition progresses.
Regardless of
how you enter into the caregiving partnership, the sooner you put boundaries in
place, both with your charge, family and significant others, the more likely
you can reduce stress and burnout.
Consider the
following:
• Understand
that the only thing you can control is your
relationship to your own thoughts, feelings, and behavior.
We can’t control others, including close family members and the person you are
caring for. Investing in things we have no direct control over leads to misery.
• Identify the reasons you are a caregiver:
Are you doing this because you want to or because you think you should? Are you
afraid that not doing all that is being asked will cause people to be angry
with you or reject you? Do you identify as a caregiver and are more willing to
take care of others and not yourself?
• As
much as possible, know exactly what you are dealing with. What is their diagnosis? What stage of
progression are they in? What kind of care do they need now? What symptoms indicate
a changing disease status? What kind of care will they need as the disease
progresses? Talk to other caregivers who are caring for someone with a similar
diagnosis. Talk to the treating physician. If the person does not want you to
talk to their care provider, why? The answer to this question may help you
better understand whether you should be in the caregiving role with this
individual.
• Know your
limits and capabilities.
Be realistic about what you can do and when.
•
Inform family, the person being cared for, as well as medical providers about
what you can and cannot provide.
If you are caring for a spouse, parent or adult child you may think you have to do it all.
Not only is that unrealistic, it’s unhealthy for you and the person. Further,
in today’s medical climate, where more and more responsibility is being
deferred to the patient and those caring for them, be very clear about what you
will and will not do. For example, many home health nurses think the family can
handle certain types of treatment, wound care etc. If this is going to be a
problem for you, let them know it right up front so other arrangements can be
made.
• Put
it in writing: Spell it
out, via e-mail or writing, about what you are willing to do and limitations
you might have.
• Just
because they ask doesn’t mean you have to do it. Learn to say no.
• You are
not responsible for making everyone happy and comfortable all the time.
• Recognize
the need for physical and emotional boundaries: It’s easier to determine physical
boundaries, such as having the person live with you or vice versa. This can
also extend to how much personal care you feel comfortable giving, which can be
impacted by your relationship to the individual, culture, gender etc. Emotional
boundaries are more complex and require that you are aware of your own wants
and needs and can separate these from the wants and needs of others.
• Take
time to respond to requests: For
example, Family and friends will often want frequent updates about how the
person is doing. Make it easy on yourself by providing a group update once a
day, week, month or whatever time period make sense for you.
• Know when it
is time to change your caregiving role:
The longer you are a caregiver, the more likely it will be that you reach a
point where you just say, “I can’t do it anymore.” Does that mean you’ll just walk away? Could it
be modified if others pitched in and helped? Do you just need a vacation or
more time off during the week?
The following
are signs you need to make a change: avoiding the person, anger,
anxiety, fatigue, depression, impaired sleep, poor health, irritability or believing
there is “no light at the end of the tunnel.”
This is the time to sit down with your charge and/or family
and be clear. This is not about making people feel guilty
but it’s about your ability to set clear boundaries and work with others to
problem solve.
Using the three prong approach can help:
• Outline what you are no longer able to do and why
• Recognize it will have consequences for the person being
cared for
• Provide a suggested solution
Some examples include:
“ Due to my work schedule, I will no longer be able to clean
your house and shop for you during the week. I know you don’t like other people
in the house, but other members of the family will be taking my place.”
“ Winter is coming and the combination of high heating bills
and difficulties of getting to you during snow storms means we need to make a
change. While it’s not easy to leave your home, we need for all of us to be
safe. There are several options we can consider but remaining here is not one
of them.”
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. When and How to Say “no” to Caregiving.
