Friday, August 17 , 2018, 1:10 pm | Fair 77º


David Selberg: Coping with Anticipatory Grief During a Long Goodbye

Grief can begin long before death arrives, even though we typically think of it as happening after the fact. Once we are aware of the possibility of a death, we can feel complicated emotions. This is anticipatory grief and is different than grief that follows a death, but can carry many similar emotions.

One of our former clients, Joan Agress, shares her story of dealing with anticipatory grief before her husband’s death.

Understanding Anticipatory Grief

I woke up frightened. I could hardly catch my breath. What was wrong with me?

I looked over at my husband and then the tears came. He was declining. He was slowly dying, and I was frightened for him and for me.

When this continued night after night, my days were difficult. I was tired.

I felt unable to help my husband. I felt I couldn’t keep my smile on for him. I was worried about how he and I would handle his continued decline. I was fearful of a future without him. I was becoming aware of not only the loss of my husband but of the loss of our happy life. It was disappearing more and more each day.

My husband, Clarence, died last year at 103. He was a renowned cardiologist, 30 years older than I. He had been a widower twice and I was a divorcee who was gun-shy. When we met 16 years ago and realized how unlikely but how happy we were together, we considered ourselves the lucky people. We brought much to each other.

Clarence brought me his calm, self-confident nature and young-at-heart perspective. I brought him enthusiasm, spontaneity and a wide circle of friends. In my working career, I was a corporate executive responsible for new business development. I thought I could handle anything. But I was completely unprepared for the last two years of my husband’s life.

I am writing this column in hopes that I can help others through what for me was one of the most difficult periods of my life. I sought help for what is now called “anticipatory grief” and I learned that my feelings of fear and anxiety were normal. I learned that, hard as this period was, I could get through it and maintain my husband’s dignity until the end.

I began talking to a grief counselor at Hospice of Santa Barbara. As I learned about anticipatory grief, I recognized what I was feeling.

Anticipatory grief has many of the same symptoms as grief: sadness and tearfulness; anger; loneliness; anxiety and depression; guilt; desire to talk; fear; fatigue; emotional numbness; worry; poor concentration and forgetfulness. I looked at this list of symptoms and I realized that I had experienced them all.

Rather than being alarmed by this, I felt comfort. Through my counseling, I realized that these symptoms before the death of a loved one are normal.

Although not every person experiences it, anticipatory grief is a normal process. Grieving now does not mean that I will feel more or less after my husband’s death. And not everyone grieves before a death either.

When it comes to grief, we all are different. However, I needed to know that what I was feeling was normal.

Addressing anticipatory grief was important for me. I needed time to accept the unwelcome news, to look at my feelings of dismay, my sense of helplessness. I dreaded the outcome for my husband and for me. Clarence and I had been attached at the hip. We played golf, we traveled, we loved to watch old movies, we loved our home and our pets. We were happy, and this happy life was slowly eroding. Dismay and helplessness indeed.

As Clarence kept declining, I realized that I was not only coping with my own feelings of grief and loss, but I was overwhelmed with all the medical decisions and care giving required. I was on constant alert, living in a state of emergency over an extended period of time.

Fortunately, we were far-sighted enough to have finalized our wills. I had even paid for our funerals and cemetery niche several years ago. However, if this were not already done, during anticipatory grief, I could have done this.

Though this period of anticipatory grief is difficult, it offered me the benefits of preparation and reflection: what will life be like without Clarence? How can I prepare for the future? What unfinished business is left to attend to?

During anticipatory grief, I learned about end-of-life care, while I could make clear-headed and educated decisions. I did not want to be under pressure to make Clarence’s care giving and medical decisions.

There are different ways to address anticipatory grief. As I did, we can seek emotional and supportive counseling from reputable grief counselors. From California to Florida, grief counselors at hospice centers assist us with anticipatory grief.

There also are websites dedicated to anticipatory grief with chat rooms. We need to assemble a support team of family, friends, clergy, neighbors, colleagues, health professionals, home health care and hospice services. We need time to put together a list of resources and emergency phone numbers. We need to identify what remains to be done.

During anticipatory grief, we must take care of ourselves. I continued walking in the morning and going to Pilates twice a week. Since I was already in an anxious state, I monitored how much caffeine and alcohol I had. I did not want to be more anxious. If I was not well, I could not help Clarence.

There are many benefits of anticipatory grief counseling. We have to remember that this time will not come again. Therefore, we must use this time for warmth, sharing and togetherness. Now is the time to clear up unresolved issues. Now is the time to reaffirm our love for the person who is dying.

I felt that my primary role was to make sure that Clarence knew that I loved him and that I was there for him. Since he was not someone who worried or analyzed behavior, he did not want to talk about his decline. Whether he was in denial or not was separate from my actions.

Not every declining or terminally ill person wants to accept or talk about these changes. Anticipatory grief counseling was for me, not my husband.

People around us resist looking at anticipatory grief. They think that they are giving up, that if they accept that their loved one is dying they are betraying her or him.

Also, they feel that they are being negative when they should be positive. It is quite the opposite: by being proactive during anticipatory grief, we are being a positive force for our loved one. With counseling, I was better able to support Clarence.

We forget that facing our loved one’s impending death is an act of love. That if I am able to cope, if my centering helps me, I could better help my husband.

— David Selberg is CEO and president of Hospice of Santa Barbara. Click here to read previous columns. The opinions expressed are his own.

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