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 The old rules no longer apply and the roadmap of your life, the one you’ve been following for years, is obsolete and quite useless.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 a caregiver.

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.

Forgiveness

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 counter-productive.

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

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).

Realism

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.

Synthesis

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 challenges ahead.

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.

 Sherril Bover is a caregiver coach and educator.  She leads support groups for family caregivers and was caregiver for her mother, Mary, who died in January 2006.  Sherril is co-author and co-presenter of The Alzheimer’s Dialogues, Conversations About Caregiving©.

 Subscribe to our weekly e-newsletter