Caregiving
at Life’s End: Facing the Challenges
By Johanna Turner
With an aging population and a dwindling pool
of family members available to care for them, increasing numbers of Americans
now find themselves in the role of caregiver. Much has been written about
the significant challenges of caring for chronically ill family members
or those with dementia, but the realities of caring for a dying loved
one are unique and less understood. If you are a caregiver for someone
in the final stages of life, you may recognize yourself in the following
paragraphs and find benefit in the accompanying suggestions. If you have
hospice care, these professionals can help you sort out the answers.
Alone and Exhausted
All caregivers experience isolation and fatigue. There
is an unmistakable urgency in caregiving at the end of
life, however, because time
is short: “I can rest after this is
over, but I want to do everything I can while I
can.” You may not want to leave home today – or
even take a long bath or short nap – because
there may not be many days left.
Moreover, care requirements are often staggering. The
situation may change daily, or even hourly. Frequent
medications, dressing
changes,
safety,
toileting, feeding, and emotional support seem to fill
every moment. You want to do your very best and it
seems important that you do
it yourself, so you may be reluctant to make a place
in that schedule for self-care,
or to ask for help. Caregivers may be tempted to turn
to food, alcohol, or to the drugs on-hand for comfort.
These go-it-alone weeks leave little time to grieve.
Grief does not suddenly appear after a death, it begins
with the first inkling that
the one you
love may not get well. When the busy-ness of caregiving
shuts out grief, your emotional and physical health can
suffer when it is finally
faced.
Accepting your indispensable role in this situation also
means accepting the importance of your own well-being.
You cannot know how long you
will be caregiving, and if you are determined to see
it through, self-care
is part of your job each day.
Suggestions:
Make a list of tasks that others can
do – shopping, providing
nourishing meals, doing laundry, maintaining
contact with others, or just being in the
house so that you can nap – and
resolve to say yes when asked.
At least once each day, ask a family member or friend
to help you with something. You may be doing such a good job
that your
need for
help is
invisible to others.
If you belong to a faith community, ask
what help is available. Many such communities
have individuals or
teams that are
dedicated to practical
support.
Find out about your local hospice. Hospice
professionals have the expertise to understand
how long your loved
one may live
and can
help you plan
to manage this time. That plan may include
in-home aides, trained volunteers, and proven
community resources. [Click
here to
read, “What to Expect
and Demand From a Good Hospice.”]
See
your doctor. Take note of your own weight
gain or loss, inability to sleep,
or increasing episodes of
feeling like you are
falling apart. Self-medicating with drugs or alcohol
will decrease your capacity
to
provide good care and place both you and
your loved one at risk.
Thoughtfully plan
for your own nutritional needs at the same time you plan for “your
patient.” A
hospice dietitian can help.
Identify at least
one person you can lean on, cry with, and
talk to about what is happening
with
your spirit. End-of-life
caregivers often
do not wish to burden others who are already
sad, so it is good to speak with an outsider, such as a counselor
or member
of the clergy.
Hospice
social workers can fill this extraordinarily
important
need.
Fear
It is no exaggeration to say that end-of-life caregiving, like raising
children, is probably the most important thing you will ever do. This
person that you love depends on you for the very quality of his or
her life. Your actions are the difference between pain and comfort,
between being agitated and being at peace. Tasks like giving injections
or suppositories, ostomy care, or respiratory treatments seem daunting – and
how do you shampoo hair when someone can’t get out of bed? None
of us comes to caregiving with the knowledge and skills we will need.
Feeling unprepared to do things you’ve never done before is understandably
frightening.
Many of us are afraid of the unknown. Our culture has kept dying out
of sight, and few Americans have been present for a death. You may fear
what might happen at the time of death, and you may also be fearful about
your own capacity to handle it. Beyond the loss is an even greater, perhaps
more frightening, unknown – your life without your loved one.
Suggestions:
Get good information on what you need to do and an expert to
teach you how to do it - a hospice nurse does this every
day. Make sure that you have written information and 24-hour
backup
for questions
that arise in the middle of the night, something that a hospice
can provide.
Accept that you may reach your limit and that other
options are available. Even your best intentions and a good support
system
may not be enough
if care is complex and physically demanding. Most hospices can
provide their expert care in nursing homes or assisted living
facilities when care at home is not possible.
Learn what will happen
when your loved one dies. Although every detail cannot be foreseen,
experienced professionals like
hospice
nurses can
tell you generally what to expect and what your loved one will
experience. Many people have feared watching someone die,
but with good preparation,
find it to be a healing experience.
Decide if you would prefer
to have others with you at the time of death or if you want to
be alone. Make a plan that
ensures
you can
summon others
on short notice.
Discuss what frightens you with someone
who can address your specific concerns: a clergy person or hospice
chaplain
for
spiritual worries,
the doctor or nurse about physical changes, and a counselor
or hospice social worker for fears about your own capacity
to cope.
Think about how you will manage the first weeks
after the death but delay other decisions about your future.
You have
too much
on your mind
and heart right now for long-range planning, even though
you may feel a little panicky. Put it away for another
day.
The Comforter-in-charge
Even as you have the primary responsibility for caregiving, your family
and friends probably look to you for sympathy and support, as well:
a parent needs to comfort the children while caring for the spouse;
a daughter nurtures and provides solace to her father while tending
to her dying mother. You have become the manager of this sad time for
everyone, and you are really giving care in several directions at once.
It is easy to get emotionally lost in this busy traffic circle of need.
In the face of the distress around you, you may also believe that it
is up to you to be the brave one. It is very difficult to bear this bravery
burden and assure others that all will be well when you do not believe
it and feel out of control, yourself.
Suggestions:
Let other family members know that
you are grieving and that you are getting help with these emotions.
Set an example.
Gently protect yourself. It’s okay to say “I
know this is awful for you, we’re all struggling in our
own way. I’ll
try to help you but my first priority has to be taking
care of Dad, I’m
sure you understand.”
Accept how emotionally vulnerable
you are rather than fighting it. Bravery – to
the point of blocking or denying your feelings – is
neither healthy for you nor a good model for those
around you.
Identify a safety net, not only for yourself
but also for others affected by this impending loss.
Children’s
friends (and their parents) and teachers need to know
what is happening.
Have a family
meeting and
recommend that each person think about whom he or she
can turn to for understanding. The wider this circle
of support extends,
the
better each
of you can care for yourself and each other. Hospice
professionals and volunteers can be part of that safety
net.
The Hard Decisions
Caregiving at the end of life includes making decisions, some of which
may seem unbearably hard. The challenge is to trust the information
on which you must base these decisions and to trust
your ability to make them wisely and lovingly. If the one who
is ill can no longer
make decisions or needs you to lead that process, you will
probably need to decide when it’s time to stop aggressive, curative treatment
and focus instead on comfort care. For many, this is an acknowledgment
of mortality that has been kept at arm’s length, and it is not
unusual for family members to disagree. An advance directive or a timely
discussion – before decisions must be made – can
make your life a lot easier.
Even as the disease progresses and death seems not so distant, you may
still face tough choices. Will another radiation treatment lessen the
pain of bone metastases or will it be too burdensome? Do we treat this
pneumonia with antibiotics or let the infection run its course? Do we
transfuse? Do we put in an IV or feeding tube?
The issue of feeding and hydration evokes a strong and complex
emotional response. From childhood, we are taught that being
well nourished and
drinking lots of water is important for just about everything.
Especially for women, feeding those we love feels almost like
it is part of our
genetic code and is synonymous with “taking good care” of
another. But you may be asked to stop feeding your loved one,
by mouth or by artificial means, or you may need to do the asking
at the time
when nourishment becomes an uncomfortable burden rather than
a benefit. This is an arduous decision.
Suggestions:
It’s not too late to create an advance directive if the
one who is ill is mentally clear and can communicate with you – get
busy today. You can read more about directives
on the American
Bar Association
site, and download the
forms at. Hospices can also provide this information.
Conversations
are just as important as documents, so start talking
and listening. If it is difficult to raise
the subject, start with “Being
with you has made me think about how I’d like
to be treated when I am very sick. I wonder at what
point I’d decide
that a treatment is not making my life better and I
would choose another
path. Can we
talk about this?”
… or a briefer conversation: “Tell me what is
most important to you in the months ahead because I want to
help make
sure that
happens.”
Get expert guidance on treatment decisions
as the disease progresses. There is almost always
something else that can be done, but the important
questions are:
-
How does this treatment fit with our wishes?
- Will
it change the outcome of the disease?
- Will it enhance
or diminish the quality of life?
Physicians trained in palliative medicine and hospice
professionals can help you find the answers to these
questions.
Learn about how the body processes food and liquids
as death approaches. The professionals mentioned
in this article can tell you about care
that does not cause discomfort and can support
you in making difficult choices.
Feeling Angry and/or Guilty
During such an intense, emotional time, you may discover feelings that
disturb you. Anger is a common reaction when life seems out of control,
and you may be angry at doctors, your relatives or yourself. You may
just be angry that your life is so difficult right now, and perhaps
you feel guilty about these feelings. Or you may have guilty regrets
about what you have or have not done.
It doesn’t take much of a stretch to feel like a martyr. You have
put your own life on hold to be a caregiver while others seem to go on
with their lives. There are outpourings of encouragement and good wishes
for the one in your care, and sometimes you feel invisible or like hired
help: “You’re so strong, but I’m so worried about your
brother.” Of course you want support for your loved one, but still… And
that may be something else to feel guilty about.
The thought that probably appalls you the most is
the wish that can come in the night after a long
and difficult day, a wish
for it all to be
over. “Okay, death, get on with it. We’re all pretty tired
here and we can’t see the end of this, and it’s just too
hard. I’m not sure I can keep doing this and there is no one to
whom I can hand in my resignation, so let me not hear breathing when
I go back in the room…”
Each situation is unique and not every end-of-life
caregiver has these feelings. But if you do, it is
by no means a reflection
of not loving
enough, not caring enough or not intending to continue
caregiving. It is a reflection of the fact that you
are a human being who
has reached
the end of your emotional rope and you are afraid
you will begin to fall short of meeting the challenges
yet ahead, and it is
past time to find – and
accept – help.
Suggestions:
Make physical outlets for your anger; find an opportunity
to work out in a gym or make a place at home to harmlessly
hit,
rip or throw
something.
Almost any loss produces anger, and this anger grows
from a loss of control and the impending loss of the one you
love. It’s
normal.
Make a list of the things that make you feel
guilty. If you cannot discuss them with another, like the
hospice social worker,
look at
the list and consider how recent information and
hindsight makes you second-guess
yourself. Cross off the things for which you can
say, “this
was the best I could do with what I knew at the time.” Forgiveness
is for the remainder of the list.
If your faith has
been an important part of your life, talk to your
clergy person or a hospice chaplain
about your obstacles to
forgiving
others and forgiving yourself.
Consider that your
readiness for death to come is a sign of your acceptance
of its inevitability
as well as your own exhaustion.
Seek additional
physical and emotional support from friends and
professionals. Hospices offer inpatient respite
care to allow family
caregivers some time
for rest and renewal.
Finally, your caregiving situation is medically,
emotionally and spiritually unique. Well-meaning
friends will share their stories, but do not
accept comparisons that cause you distress.
Know that
thousands of people share
your struggle at this moment, and you are all
giving an amazingly complicated and wonderful
gift.
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