It seems to happen in a flash. You wake up one morning to a whole
new life. Everything is changed, dreams are on hold. The old rules
no longer apply and the roadmap of your life, the one you’ve been
following for years, is obsolete and quite useless. You’re in a
brave new world, but you don’t feel brave or new. Suddenly, you are
Most of us have been caregivers at one time or another. As parents
we are caregivers, and sometimes we’re called upon as care provider
when a family member is ill or a friend is in temporary need.
Although this caregiving can be physically and emotionally
demanding, we have the satisfaction of knowing that our good care
may lead to recovery for the patient.
But what if there’s no end in sight? What if good intentions and
kind hearts do not result in improvement or recovery? What if, in
fact, the patient just gets worse and worse? How can caregivers
keep our bodies, minds and spirits intact throughout a long, long
journey – the end of which is never health, but the sure death of
our loved one?
This is the challenge of people who care for someone with
Alzheimer’s disease. Alzheimer’s is a killer; a terminal, organic
brain disease that slowly destroys brain cells, robbing its victims
of memory, judgement, reasoning, speech and ability to function.
Perhaps the one manifestation of Alzheimer’s that affects the
caregiver most is the loss of reasoning. Patients with other
diseases can usually make decisions for themselves throughout their
disease – or at least participate in their treatment. Alzheimer’s
denies its victims this deeply human ability, and leaves the burden
of life and death decisions squarely in the hands of family
caregivers and advocates.
As I watched my mother’s 12-year descent into Alzheimer’s disease, I
was fortunate to know quite clearly her views on death and medicine
and “heroic measures.” Mother had often discussed her feelings with
her family. Yet even with that clarity, as she lost the power to
decide for herself, the responsibility to be her advocate weighed
heavily. We caregivers are making life and death decisions for
another human being right up until the end.
Many family members do not have the advantage of clear directives.
In fact, in my work with caregivers, I am far more likely to see
families arguing than agreeing. Siblings struggle with each other
and with their own history and “baggage” at each crossroad in the
journey. Spouses are overwhelmed with their own mortality and the
grief of losing their partner. The elder generation fight for their
independence while their adult children focus on safety and comfort
for their parents.
As this long walk begins, no family knows instinctively how to
handle the challenges. Each person with dementia and each family is
different. Each greets the diagnosis in a unique way. There are no
rules, no maps, only general guidelines to light the path.
Given this difficult journey, how can caregivers sustain ourselves?
What touchstones might guide our decisions?
I have seen three crucial areas of struggle for family caregivers –
denial of the disease, the burdens of the past and the inability to
accept reality. As I watch and guide family caregivers, I have seen
these three as energy-draining, discouraging and ultimately
defeating. In helping caregivers become more mindful and perhaps
more successful in their caregiving, I propose they consider being
FAR better caregivers.
FAR signifies Forgiveness, Acceptance and Realism. Let’s look at
what these words can mean.
We all carry remembrances from the past. Whether we are caring for
parents or a spouse, there is always a history. Some of that
history may be unpleasant, disappointing or even abusive. But
mindful and effective caregivers will work to forgive the past and
to focus on today. They realize that to waste their energy and
spirit on events that cannot be changed is unhealthy and
FAR better caregivers not only strive to stop judging family members
for past behavior, they extend forgiveness to themselves for real or
perceived failings and recognize that they, and everyone else, are
doing the best they can.
Acceptance does not mean “liking” or “approving” or even
“condoning.” Acceptance simply means coming to a serenity with what
IS. None of us likes having a loved one with a dementing disease,
but to constantly fight and deny is to keep ourselves from being
compassionate and effective caregivers.
Mindful and FAR better caregivers work to stop fighting events and
occurrences over which they have no control. They take their
guidance from these words . . . Lord, grant me the serenity to
accept the things I cannot change, the courage to change the things
I can and the wisdom to know the difference (from the Serenity
Prayer attributed to Reinhold Niebuhr).
In “knowing the difference,” our mindful, FAR better caregivers
develop the strength to look reality in the eye. They don’t waste
precious energy wishing things were different. They don’t dramatize
or pretend. They live with a belief in their own strength and
grace. They enjoy a knowing that they are doing the very best for
their loved ones and for themselves.
When we are first thrust into the role of caregiver, we naturally
resist. We do not want to believe that our loved one is affected by
a debilitating, terminal disease. We don’t want to take on an added
burden. We grieve, often following Elisabeth Kubler-Ross’ five
steps: denial, anger, bargaining, depression and acceptance. This
is natural and normal. We must feel what we feel and know that these
feelings are appropriate.
But as we grow into our caregiving roles, we begin to realize that
to allow ourselves to languish in one of the first four stages will
not serve us on the long dementia journey. Denial, anger,
bargaining and depression only rob us of the mental, spiritual and
physical energies we are going to need if we wish to surmount the
Caring for a loved one with dementia can strengthen or weaken us.
It can be an opportunity for growth or a destructive passage. It is
our own choice: mindfulness in caregiving leads us to assess our
attitudes and beliefs, to grow in forgiveness and compassion.
Mindfulness can mean that when we reach the end of our caregiving
journey, we emerge as whole people, with mind, body and spirit
forged anew by challenges met and surpassed. For me, though, the
overarching result of mindful caregiving is that we will know,
beyond any doubt, that we have done the very best we could for our
loved one with dementia and that is what makes all the difference.
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