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following for years, is obsolete and quite useless.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.