November is National Caregiver’s Month and this year the theme is “Caregiving Around the Clock.” This has been a topic of conversation within my own family recently, so thought it might be helpful to have a “cut to the chase” post for caregivers outlining some “take home points” to consider:
You have the ability to change but you can’t change
them: How you respond to situations
and to others is up to you. Spending time trying to change others' behavior-no
matter how good you think it is for them- leads to incredible frustration for
all involved. Keep in mind that just by changing how you respond can have a
greater impact than you may realize.
You aren’t alone. There are approximately 40 million Americans who are currently active
caregivers. Isolation doesn’t make you better at your job. It makes you weaker
and more vulnerable. Join an on-line or in person support group. Check your
local hospital, health care center as well as local community resources for in
person caregiver support groups. For on-line groups, check out:
You can’t do it all. You need breaks from caregiving. Many condition specific organizations (e.g. Cancer
Society) offer respite care. Take advantage of them. Some insurance companies
also offer respite care options. Ask family and friends for help. Check out ACaregiver’s Guide to Creating a Respite Care Plan.
You need financial support. Keeping a job not only provides financial stability
but it also can be a way to stay connected with the outside world. However, if
you find you need to be a full time caregiver, check out options for
reimbursement for your time. Depending on the state, Medicaid may provide it.
Some insurers will cover it, particularly long term care insurance. Seniors who
have life insurance policies can use them to pay for care. The Veterans
Standard Medical Benefits Package may be used to provide homemaker or other
care as an alternative to nursing care. Finally,
family members need to kick in if at all possible either to share the load
and/or to help with costs. If this becomes a major problem, don’t try to settle
it yourself. This is when a professional mediator is helpful. Check out Can I get Paid to Be a Family Caregiver?
You are not an extension of the person you are caring
for. Take good care of yourself as
much as possible as you are more than deserving of it.
You may need to make decisions that you never thought
you’d need to make but there are resources to help you. Whether it’s putting your charge in an inpatient
long term care setting-such as nursing home, or making difficult medical and
end of life choices, the book Hard Choices for Loving People by
Hank Dunn is very helpful. Check out the online video of Dunn’s one hour
lecture highlighting the contents of the book.
You don’t need to put up with platitudes- e.g.“I know just how you feel.” There are a
long list of pat phrases that people say to caregivers. Well meaning though
they may be, they can make you feel bad about yourself or really piss you off.
As much as possible, let it go. But.... here are a few responses to consider
Call if you need help: Make it easy for people who want to help you do so
by setting up a Lotsa Helping Hands website, where
you can identify what you need and people can register accordingly. This is a
free site and does the work for you. If you don’t have the time or have
concerns about setting up such a site, ask a friend or family member to do it
for you. In some ways it’s better if someone does it for you but definitely be
a co administrator. When someone says call if you need help, say Register on the Lotsa Helping Hands website
and you’ll know what and when I need help.
I know just how you feel: Sometimes peoples experiences with caregiving can be
useful so ask them pointed questions about concerns you may have without giving
them time to wax poetic over their time as a caregiver.
God doesn’t give you more than you can handle: Don’t let this make you feel inadequate, less worthy
or in some ways unfaithful. If you feel like a snappy comeback, you can say
something along the lines of what Rabbi Gerald Wolpe, also a
caregiver, points out. Mrs. Job, the caregiver, is disdained and disregarded,
and the new children given to Job do not replace those she has lost.
I just
couldn’t do what you’re doing. That’s easy, no one is asking you
to do it.
You are a saint. You are like everyone else dealing with frustration, depression,
anxiety, exhaustion and fear. The next time someone tells you that “you’re a
saint,” tell them the halo has slipped and what you really need is help.
You worry, but chances are in your favor that your
worse fears wont happen or if they do, they aren’t as bad as you fear: In
fact the data shows that 97 percent of what we worry over is not much more than a
fearful mind punishing us with exaggerations and incorrect perceptions. As Michel de
Montaigne noted 500 years ago, “My life
has been filled with terrible misfortune; most of which never happened.” Caregivers worry about a host of issues. It’s normal but
don’t over indulge.
You need your sleep: Sleep deprivation is the worse. Check out 4 Tips for Better Sleeping While Caregiving from AARP
Your best is more than Good Enough: You will make mistakes, be upset with yourself and
even feel ashamed for how you handled a given situation. All part of the
process. Check out the post Your Best is More than Good Enough
More Reading/Resources
Essential Websites for the Daughterhood Journey (caregiving): Good break down of websites for caregivers by topic. This site is run by Ann
Tumlinson who has spent the last two decades working on improving how
America cares for its frailest, most vulnerable older adults.
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