SE LF
W
H A I
O M When we enter the world of caregiving, there is so much pressure to balance. Many caregivers, who have been in this position for a more extended period of time, describe feeling a loss of their personal identity as they feel the needs of their own families and their parents take precedence over their own needs.
THE CAREGIVING ROLE UNFOLDS OVER TIME AS THE CAREGIVER TAKES ON GREATER RESPONSIBILITIES
Caregiving involves an identity change process. At some point, the person providing care begins to identify himself or herself as a caregiver in addition to being a wife, a son or other kind of relationship. The journey is different for each person in terms of when and how we begin to identify ourselves as caregivers.
Most caregivers lack role recognition,
Caregivers reported substantial loss
as they struggle to recognise that their
or changes to their self-identity: with
role exist, even though they are taking
some caregivers reporting not being
on extensive and challenging tasks.
able to stop thinking about caregiving and others having difficulty answering
Caregivers who are providing
questions about themselves.
assistance for a short period of time may never see themselves as a
Some caregivers also demonstrate
caregiver, while those providing care
difficulty in taking breaks for
for years may see themselves and act
themselves. Active caregivers did not
more like a caregiver than spouse or
consider taking a break, whereas
adult child.
bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.
When you are a caregiver, you can’t help but reduce your contact with the outside world. Whether you like it or not, your world shrinks and almost all of your attention is reduced to a room or maybe even simply your loved one’s bed.
As the days and weeks pass, you may find yourself voluntarily choosing not to venture beyond your front door to the outside world—not because you don’t want to take a break and not even because you don’t think it will be good for you—but because being in the company of others who care about you and your loved one can be exhausting.
It’s like being dropped into a foreign country where you feel lost and you don’t know the language.
Hospitals today send people home quicker. The caregiver is expected, overnight to take on the roles performed in the hospital by three shifts of skilled professionals, from the IV nurse to the dietician to the visiting resident doctors. You will have to learn fast how to talk to physicians and nurses and decode their clinical language. You will be living with a new uncertainty. You will find yourself breaking out of old habits and routines. Not everything will go smoothly and quickly in this new journey – the adjustments will unfold in fits and starts.
We expect perfection from ourselves everyday, all the time. Perfection is not the problem, it's our expectations that can become debilitating. If one day you become a caregiver, you have to allow yourself the freedom to escape the prison of your unrealistic expectations, and you might find that the very reality of your experiences will change before your eyes.
EVEN ALPHAS WEAR OUT
Every caregiver feels more or less the
Caregiving changes you. It has to. It’s
same. Most of us go on far too long
too all-encompassing not to. Some of
pitching and tossing on the roller-
those changes make you a better
coaster, without asking for help or
person. Sometimes you don’t think
taking a break
you passed “the test.” You see how ugly, selfish, degrading, bullying,
You forget about yourself. You forget
manipulative, resentful, and angry you
that you are a person. No matter how
are. And most of the time you don’t
much you do for your loved one, it’s
even know what triggered it. It gives
never good enough. The possibility of
you a chance to take a long hard look
being weak even for a minute is
at who you are, but most of the time
frightening to contemplate, because
you’re too exhausted and frustrated
there’s so much weighing down on
to feel like you can do much about it.
your shoulders.
SOMETIMES IN THE MIDST THE VALLEY THERE IS NO
OF OF CARE END IN SIGHT You may grieve the loss of your former life, your freedom, or who you used to be. Chances are, your life has changed since becoming a caregiver and some of those changes could be drastic. You may be grieving the past and the way things were before. Maybe you are upset about your future plans that will be postponed or altered. You may feel you are not the same, that you’ve lost your identity. Being a caregiver doesn’t mean you have to give yourself totally away and “caregiver” is not your only title. Don’t forget you are a son or daughter, maybe a parent, a friend, teacher, artist, hard worker or child at heart; you fill in the blank. “Caregiver” is an awesome title but it does not define you.
In Finding Your Own North Star, author and life coach, Martha Beck reminds us-
MANY CULTURES VALUE THE TIMES IN OUR LIVES WHEN WE LOSE ONE IDENTITY AND HAVE YET TO PICK UP ANOTHER.
WHO ARE WE NOW? The cumulative effect of illness-related
As the disease progresses, shared
losses for the care recipient often
activities, familiar ways of being
leads to losses related to social life,
together as a couple and as family tend
personal freedom, and security for the
to dwindle and for some completely
caregiver, a situation caregivers
disappear. The ongoing shift of
experienced as negative change in
previous ‘couple-hood’ identity affects
familiar relational patterns.
caregivers with the question: who are we now and who am I?
There will be changes resulting from caregivers’ gradual shouldering of responsibilities previously held by care recipients. Part of this dynamic for many caregivers is a perceived loss of ‘self,’ an emerging confusion about personal identity. For some a sense of grieving, for others anger or bitterness over the loss of relationships or roles.
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01
SHIFTING ROLES
NEGATIVITY
03
SOCIAL ISOLATION
Sometimes, the resistant moods of the care recipient and frustrating reluctance to participate in activities of daily living, treatment regimes, and general self-care create distress for the caregiver. These behaviors will leave caregivers resenting the increasingly one-sided nature of the relationship and wondering why they should continue to provide care since the care recipient appears not to appreciate their efforts. This may lead to a loss of caring motivation for the care recipient.
Social isolation occurs when caregivers feel housebound and limited in companionship due to anxiety or guilt about leaving the care recipient alone, particularly when there is little family or community contact. This dwindling of relational networks also plays a role in the evolution of personal identity confusion. This distress worsens as the patient’s illness advances.
AS A CAREGIVER, YOU CAN'T HELP BUT REALISE THAT MUCH OF EVERYDAY LIFE IS BEYOND OUR CONTROL.
SO IT'S NO SURPRISE THAT THE DESIRE TO BE ALONE, TO SEPARATE OURSELVES FROM OTHERS TO GET SPACE IS AN ATTEMPT TO REGAIN CONTROL IN A WORLD THAT SOMETIMES SEEM OUT OF CONTROL.
YOU WILL BEGIN TO SEE HOW SHORT AND TRULY PRECIOUS LIFE IS.
Make sure you maintain your own personal life while caring for another. When caring for someone who is
It will be a moment of imagined
terminally ill and undergoing a slow
possibilities and some sadness at
deterioration process that you watch
what will not be. No matter what any
daily as caregivers, the process can
of the circumstances are, all of us
be devastating. It is important to look
have things that are beyond our reach,
at areas in your own personal lives
things we cannot have or experience.
where you are perhaps dying a little every day because you are not living
You can either face the loss of those
your own life to the fullest.
imagined possibilities, grieve their loss and get on with life, or spend your
You put off things until tomorrow. Now is the only moment you have. Bring in other family members, friends or volunteers from organizations to assist you when needed. You must make time for yourself.
precious moments stuck in self-pity.
"WHAT SO FEW PEOPLE UNDERSTAND IS THAT YOU AREN'T JUST CARING FOR SOMEONE YOU LOVE. CARING ISN'T SOMETHING YOU DO – IT BECOMES PART OF YOU."
01
MAKE TIME FOR YOURSELF Few people with responsibilities for others have all the time they wish for themselves. It’s part of the deal that comes with responsibility. As a caregiver, there will always be periods of time where you find yourself overwhelmed by the tasks set before you. Understand that making time for yourself is absolutely necessary.
02
PACE YOURSELF Focus on daily tasks that need to be done. Schedule the less important tasks later. Once you start to prioritise your work, you will know that you actually get more acomplished at the end of the day.
03
ASK FOR HELP Seek help from family members and together, figure out when others can come in to help so that you can have a break. You may need to consider hiring in-home help, or look at day care facilities. Know what resources are there, and plan on how to utilise them.
04
DITCH THE GUILT You will feel the guilt – the feeling of never doing good enough and as though you cannot afford to have time for other things. Be prepared for the feelings of guilt. It will be an immobilising emotion. Let it go.
We know the needs of caring for someone we love don’t pause for public holidays. However, we must give ourselves the luxury of looking forward to a mental holiday each day—a walk in the late afternoon, an evening cup of tea, a chapter from a good book, a conversation with a friend. No one will give you permission to momentarily relieve yourself of duty, You must give yourself permission to care for yourself.
FIGHT RATHER THAN FLEE
IMMINENT F UT U R E
This book is not an exhaustive guide but aims to provide some useful insight to those who may one day be a caregiver.