The Caregiver Journey - Pathways to an authentic and fulfilling life

A few years ago I wrote in Mainstay, the Well Spouse® Association newsletter that membership in Well Spouse cannot make us whole again.  But this association of spousal caregivers can help us confront the realities of our lives with hope, not resignation.  But how?  It is so easy to become overwhelmed by the stress of long-term caregiving.  Even the most buoyant personality surely must be weighed down witnessing one's mate's progressive loss of health, function, and mobility. Where is the hope?

Sharing our stories helps well spouses connect with each other and lessens anxiety.  There is comfort in knowing that I am not alone.  That others have gone down this road before and survived!   

But the Well Spouse® Association's mission is not simply to help spousal caregivers just cope with their difficult situation.  While the empathy generated by sharing personal stories is valuable in and of itself, our aim should be to create for ourselves nothing less than an authentic life --  one not defined solely or even in the greater part by our spouse's medical condition.   In any healthy marriage or committed relationship, it is important that each partner take time to pursue his own interests and give expression to her talents and dreams.  This should also hold true in a marriage where one spouse is ill.  

While we all want to be excellent caregivers for our partners, to provide good care we must first care for ourselves.  To neglect our own well-being is to risk burnout, and then we neither serve our partners or ourselves very well.  

In her inspirational book, Mainstay, Maggie Strong suggested that three progressive stages typify a caregiver's life.  This caregiver journey can serve as a powerful metaphor for how we can re-center our lives. 

The diagnosis is in, and a productive panic energizes you and family members.  You want to learn as much as you can about your spouse's illness or disability.   Doctors and other experts are consulted.  You read everything you can on the subject.   You receive encouragement from family and co-workers, and many offers of help.

Optimism often abounds during the heroic stage.  You will help your spouse heal, recover, walk, get well. Often there is real improvement; sometimes even complete recovery.  But over time when there is little improvement or decline sets in, hope slowly fades and optimism turns to despair.  Friends and family members may drift away.  Help now is most likely provided by paid aides.  Denial may keep the caregiving spouse working towards a cure that is not possible. The heroic stage comes to an end as you come to terms with the reality of your spouse's condition and prognosis.

Long-term caregiving sets up debilitating internal conflicts.  On the one hand, you want to support and care for your partner.  It's the right and moral thing to do. You are motivated by love, or a sense of duty, or societal expectations.  At the same time you feel physically exhausted.  Financial concerns mount.  You may have to quit your job.  Intimacy is difficult or impossible.  You don't see a future.  You want to get out. 

 The ambivalence stage of the caregiver journey pockmarks the landscape with intermittent (or, in many cases, constant) feelings of fear, anger, sadness and resentment.  Many caregivers need medication to manage clinical depression.  To avoid caregiver burnout, caregivers will devise ways to compartmentalize their lives.   But stress commonly undermines the best coping strategies. 

Emotional instability and uncertainty are the hallmarks of this stage.  Sadly, caregivers can get mired in the ambivalence stage for quite a long period of time.  This stage comes to an end when the instability becomes so untenable that one suffers total burnout or, much more positively, the caregiver commits to a desire to go beyond coping and makes real changes in her or his life and one's approach to caregiving and the marital relationship itself.

The New Normal 

In this third stage, balance, resolution, and inspiration empower caregivers to live much more fulfilling lives.  You recognize and come to terms with the long-term nature of your situation.  But you no longer put off or set aside your desire to pursue your own interests and dreams.  

To achieve balance, you communicate more openly with your spouse and take steps needed to resolve the often difficult and painful issues in the marital relationship.  You engage your spouse in ways that preserve activities that you both enjoy, and you seek new ways to share time together.  Or, you decide that, no matter how painful, the best way you can support your partner is by separating.  Separation can take many forms:  placement in a nursing home or adult daycare, divorce, or setting up informal, separate living arrangements.  Whether living together or apart, you commit to caring for your spouse, providing both financial and emotional support to the best of your ability.  

Support for the well spouse is essential to achieving and sustaining this new normal stage in one's life.  Many well spouses have placed faith and prayer at the center of their lives.  Whether formal religious practice or personal and more secular-based spirituality, faith in a higher power not only provides comfort in times of crisis, faith can also imbue one's life with meaning and purpose. 

Professional counseling and medication can support well spouses in the choices they make. 

Finding ways to increase in-home care may allow well spouses to live a new normal life.

Organized support groups such as those sponsored by the Well Spouse® Association keep spousal caregivers from becoming isolated.  WSA support group members offer not only practical advice, but also provide emotional support.  Support groups can also create respite opportunities needed to relieve the stress of daily caregiving routines.

The new normal is achieved when we no longer go about our caregiving responsibilities with resentment but attend to the needs of our partner with love.  

Finding one's way

The caregiver journey is a progressive undertaking.   It is not an easy journey.  We often refuse to come to terms with our new reality and stay too long in the heroic stage.  Or we become stuck in the ambivalence stage of our journey.  And even when we pass from one stage to the next, it is quite common to revisit a stage we thought we had passed through.  Two steps forward, one step back.  Achieving a new normal is not guaranteed.

Helping well spouses understand these stages of the caregiver journey and encouraging our members to find their own pathway to the new normal is, then, the main mission of the Well Spouse® Association.  The losses we have experienced as a result of chronic illness and disability are very real.  We will never be made whole in the way we had hoped.  We can and should find satisfaction in our caregiving and make caregiving a part of who we are, but not all that we are. 

This article has been modified from the original, first published in the Summer 2006 issue of  Mainstay.  Permission to reprint granted upon request.  Contact the Well Spouse® Association, 63 West Main St., Suite H, Freehold, NJ 07728, 800-838-0870, by email at This email address is being protected from spambots. You need JavaScript enabled to view it.rmation.