Anticipatory Grief

by Joan Agress

 

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, thirty years older than I. He had been a widower twice and I was a divorcee who was gun-shy. When we met sixteen 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. Through our local hospice center, I began talking to a grief counselor there. 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 travelled, 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. Also, there 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.

The benefits of anticipatory grief counseling are many. 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 actually be positive. It is quite the opposite: by being pro-active during anticipatory grief, we are being a positive force for our loved one. I felt through counseling that I was better able to support Clarence and take care of him.

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.

What it Means to be a Hospice Volunteer

by Nicole Romansata

“And in the end, it's not the years in your life that count. It's the life in your years.”

Abraham Lincoln

It is always interesting to note how people will react when you tell them that you are a hospice volunteer. Many of us who choose this work have experienced comments such as, “I could never do that,” or “Isn’t that just so sad?” or “I don’t do death!” Yes, I heard this last one just this week. Because of these reactions I think that a lot of people have a misconception about what it means or what it may take to be a volunteer for hospice. When many people hear hospice, they often have an image that we must be sitting with people on their death bed. While companioning with patients at the end of life can be a deeply meaningful experience, it is only part of what we do. Vigiling at the bedside does not encompass the full spectrum of hospice volunteering. In fact, it is only a fraction of what Hospice of Santa Barbara volunteers do.

Hospice volunteers build relationship and form connections. They also help around the house or grocery shop when a person is too weak to complete these tasks themselves, due to treatments or illness. They also go to doctor’s appointments, take drives to the beach, go for walks, paint, prepare meals, provide pet therapy create life reminiscence videos, companion children in grief and most importantly provide a listening ear.

While hospice volunteering can be sad, it also comes with its rewards. One of our volunteers, Mark Collier, expresses that even though it is sad to lose those he has worked with who have died, he does not regret having known them. After losing someone we care about, would any of us take back having known and cared for them or having had a meaningful relationship with them? Volunteers often say they are better human beings for having met the people they serve. In so many ways, it is a privilege and honor to serve alongside others.

At Hospice of Santa Barbara, the common thread across all 9 of our volunteer programs is the human to human connection that forms between our volunteers and our clients. In so many ways it is a relationship like no other, in a role like no other. Volunteers make the choice to step outside of their familiar circle and draw near to those living with illness and grief, with hearts of compassion. They provide a listening ear and in time they become a safe person to share hopes, joys, and to discuss fears and challenges. They bring comfort and ease journeys by meeting people where they are without judgment or an agenda. There is a reciprocal relationship that forms. The connection that is built holds depth and meaning for both the volunteer and the client and family. Below, I would like to share just a fraction of the comments that we have recently receive, describing how our volunteers have touched the lives of their clients.

“Lyn is so wonderful – I love her and her positive energy. She has made my life so much better”.

-Lyn Essig, Patient Care Volunteer

“Rocky has been a very good friend to me and to my family. He's there for me all the time. I met him almost 5 years ago when I was still struggling to find my place in the world. He helped me through all those years and still does to this day. I'm 17 now, and about to graduate from high school, soon to be 18 in a few months, and I know he will still be there for me even when I'm an adult. Thank You for being there for me even if sometimes I felt as though I didn't need it.”

-Rocky Bellman, I Have a Friend ® Mentor

“Rachelle was really such a God-send to my mother. She has such a gentle, loving spirit that was so comforting to mom; and they had just so much fun together! She really brought my mom a lot of joy in her last few months.”

-Rachelle Fudge, Patient Care Volunteer

“‘Till Jill came into my life I had no experience with volunteer services. What she brought into my life is priceless, endless love and caring, she is totally non-judgmental and always 100% present. I love her and your services beyond description. With deep thanks.”

-Jill Kitnick, Patient Care Volunteer

“Carolyn is such a kind, loving person. She was a huge help to me during my radiation treatment, helping me get to my appointments when I didn’t have the strength to get to them myself. It’s so hard to be in a place of vulnerability, but Carolyn is so understanding – she made me feel so comfortable.”

-Carolyn Phreaner, Patient Care Volunteer

Words cannot express fully enough how grateful I am for the Hospice volunteer program that invites such a generous and capable person as Minie to respond with her magnanimous spirit. She is not only intelligent but also willing to do a variety of tasks from sewing, organizing, driving, preparing food, to planning ahead and responding to any need. Minie is a gift in my life at this time.

-Minie Pompe Van Meerdervoort, Patient Care Volunteer

Arlene is very sensitive and compassionate. She takes an avid interest and is there to do everything to show her warmth and friendship. Bonnie looks forward to her visits and it is an important part of her life. -Arlene Radasky, Patient Care Volunteer

What gifts! Many volunteers share that they receive above and beyond what they give. They express that volunteering adds more meaning and significance to their lives.

 

One HSB Volunteer expressed that she had cancer several years ago and through her own illness she learned to recognize the silver linings in life. She is currently volunteering for a man with ALS and she sees how very precious life is and how very precious it is to recognize the silver linings. Other volunteers have expressed that they are inspired by how hard their patients fight for life and how much spunk and strength they have. Volunteering in this way makes them a better person and in showing up for others they have learned lessons in presence and patience. Participating in this type of service often brings with it a decrease in the fear of death and an increase in the appreciation in everyday moments and a gratitude for life. Embracing the reality that all of us will die one day, can bring us more fully into life and all that it holds today.

There is beauty in the symbiotic relationship that forms through volunteer service. In sharing their talents they are also sharing the most meaningful of gifts. They give of their time and energy selflessly to help people live as fully as possible up until the end of life or up until recovery of illness. They give of themselves to make life better for others. Even through serious illness, there can be a lot of living to do. Our community is a better more compassionate place because of volunteer service.

So yes, volunteering can be sad when someone we have built a relationship with, sometimes over the course of years, dies. Most volunteers will tell you that they have no regrets, for what they gain is immeasurable. While we work with those impacted by serious illness, what we do is so much about life, giving, living with gratitude, and treating others with kindness up until our last breath.

I slept and dreamt that life was joy

I awoke and saw that life was service.

I acted and behold,

Service was joy.

-Rabindranath Tagore

April 23-30th is National Volunteer Week. To show our appreciation for all that our volunteers share we will be celebrating them with a Country Fair Volunteer Appreciation Party on the evening of May 18th. Volunteers will enjoy a BBQ dinner, live music, raffle games and great company. Because all of our volunteers deserve our gratitude, during the program portion of this event HSB and those we serve will have the opportunity to express appreciation for the kindness, compassion and presence that each one of our HSB Volunteers provides.