If you’re caring for a loved one with a long-term illness that does not have a cure, you may have heard the term “anticipatory grief.” As my totally disabled husband’s caregiver for most of our 14-year (so far) marriage, I have been practicing anticipatory grief for the duration of our wedded life.

Without a major miracle of healing by God, my husband Vince’s genetic condition, FXTAS, only promises to continue the degeneration of his brain until death do us part. So, naturally, I have been grieving the permanent loss of my husband, as I have also grieved the loss of every one of his physical and mental abilities that have been lost during the course of his illness.

In such a situation, it is impossible to keep my mind from leaping forward to that unthinkable time when Vince will leave me—permanently (unless I go first, of course). As much of him as I have lost by this point (he rarely speaks a word and can do nothing for himself), he is still HERE; he can still hold my hand and show affection in small ways. He is still a rock and inspiration to me, as my relationship with him has forced me to grow and learn so much.

It is only natural that my mind keeps jumping ahead to the time when I will find myself alone, after all the years of hard work which could only do so much to prolong his life. These fearful thoughts are exacerbated when Vince eats less or sleeps more; I fear that all is going downhill. But then he will happily start eating again and shows some “lights on” in his eyes.

After a particularly torturous stretch of anticipatory grieving in the past month, it occurred to me that I need to live in the present moment—not just as a cliché, but to really just BE in the present moment, realizing that I have no idea of the future. This moment—right now—is peaceful, so I need to appreciate that, and go minute by minute, and step by step. I do strongly believe in a God who is completely in control and has a plan that we are all a part of, and we have to live out His plan: rewards for grief will come at some point; He promises that.

The present moment is the only reality; the future that I imagine is not real. Of all the things I’ve worried about during my life, I never could have imagined my life as a spousal caregiver. Hopefully God has something kinder in store for me after all these years of grief—something more than just more and greater grief.

If I can stay in the moment, it lifts away so much needless anxiety and sadness; I have enough to deal with now. It’s not easy to do—I have to keep reminding myself to stay in the here-and-now, but when I can do it, it really does help. If the present moment is unhappy or stressful, I should not make it worse by pouring on future imagined worries or by being haunted by memories from the past.

About the Author

Terri.2012.Web_.Lg1Terri Corcoran lives in Falls Church, Virginia, and has been a full-time caregiver for her husband, Vince, since 2004. Vince is severely disabled physically and mentally by the genetic condition Fragile X-Associated Tremor Ataxia Syndrome (FXTAS). Terri is on the Board of Directors of the Well Spouse® Association (https://www.wellspouse.org/), which offers support and resources for spousal caregivers.

She also serves as the association’s PR chairperson and the editor of their quarterly newsletter Mainstay. She has published articles and has been interviewed for magazine articles and on radio shows about FXTAS and the unique challenges of spousal caregiving.

Although not formally trained in caregiving, Terri has, by necessity, become well-educated in the trials of family caregivers.

Don’t be afraid to come visit us: long-term disabling illness is very isolating, and genetic illnesses are NOT contagious.

1 thought on “The Spousal Caregiver: Anticipatory Grief”

  1. caregiver says:

    Recognizing that the stress you are experiencing can sometimes lead to depression is the first step to preventing it — and burnout. To take that step, talk about your feelings, frustrations, and fears with the palliative care team’s social worker or mental health professional. Talking helps you understand what’s going on for you and for the person in your care. It helps you come to grips with the fact that you are not in total control of the situation.

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