Grief and Support

No matter if expected or not, the death of one whom you love generates the most difficult and complicated of human emotions. The void left in our lives is too vast to ever close. Nor should it. Grief produces a powerful tidal wave of shock, denial, anger, guilt, depression, numbness, confusion, overwhelming sadness, fatigue and weakness. You’ll ride deep troughs of despair that he or she is no longer there. Yet from the crests you’ll laugh — humor triggered by a memory, a picture, an object that was special to you both. These emotional ups and downs are frightening. But they’re normal. In time, they will level out into a manageable cycle of regret and joy that will roll like the sea when the storm has passed. We will always grieve for those who have gone before us because they will always be a part of us.

Just as it was our job to accept the transition of death, we must accept grief and allow ourselves to feel and express our emotions. All of us grieve differently. There is no right or wrong way. Society forces on us stereotypes of grief, and we wonder if we are behaving appropriately. One person might ask: “Why am I always tearful? Shouldn’t I be getting on with life?” Yet another might be responding completely differently and worrying that the forecast flood of tears has not arrived. We should not judge ourselves for not expressing grief the way others might feel we should. Rather, we should understand that grief itself is a journey that requires us to be patient with ourselves, to develop our own understanding of how grief affects us, and to have compassion for other family members and friends who are expressing grief in their own ways.

Bereavement begins with the acceptance of the imminent passing away of a person we love. Often bereavement begins with the transition from active treatment of the disease to palliative care, the soothing of its symptoms and the hallmark of AseraCare Hospice. Though death has yet to occur, and may be not just hours but days or weeks away, engagement of hospice marks a profound transition in the way family and friends feel about the future of the person they have loved for such a long time. The onset of the reality of bereavement triggers grief. By effectively addressing issues relating to bereavement before death has occurred, hospice staff prepare families and friends for grief.

The Five Wishes

With no family contact for years, the 90-year-old patient relied heavily on her two best friends on whom she had conveyed power of attorney for all legal, health and financial matters. Her friends were in denial. They refused to allow “hospice” to be mentioned in the patient’s presence. The staff at AseraCare Hospice in Bloomington, Mn., was deeply alarmed. The two friends desperately needed help. They were asked to meet with a group that included the facility social worker, dietitian and registered nurse, along with the AseraCare team’s spiritual care coordinator, social services coordinator, and registered nurse case manager. The purpose of the meeting was to gently prepare and guide the friends through the dying process. Writes clinical liaison Kathryn Conery, “We believed the patient would not and could not die peacefully until the friends were able to understand and let go.”

“The five wishes: saying I love you, I forgive you and know you forgive me, I’ll be OK, thank you and goodbye.”

“We spent half the day with her friends, gently discussing all aspects of the patient’s condition. As a team we discussed the physical, spiritual and emotional aspects of dying. The five wishes: saying I love you, I forgive you and know you forgive me, I’ll be OK, thank you and goodbye were carefully explained,” Conery recalls. “Clearly moved, there were a lot of emotions and tears but the anger had dissipated. There was only the spirit of calm acceptance.

“Following this meeting, the friends went to the patient’s bedside together that evening, and for the first time they were able to honestly and openly give the patient permission to die surrounded by love. A service of ‘commendation of the dying’ was requested and performed, after which, the friends spent several hours following our team’s guidance and were able to give the patient the five wishes. They left late that evening, emotionally spent but at peace. The patient died peacefully shortly afterward with members of the AseraCare team present.”

Forgiveness

William, 88 and dying from bladder cancer, was a most reluctant patient, according to Darrell Miller, executive director of AseraCare Hospice in Akron and Cleveland, Ohio. William was the patriarch of his family, the strong man to whom others came for advice. He didn’t need or want special care, but his increasingly frequent outbursts of rage at first his residence in a nursing home and then hospice while at home indicated to the care team that something was definitely wrong. Just before Christmas, he told his nurse that he wanted to talk with another “guy” about his “soul.”

“I went,” Darrell says, “and we talked about everything — the weather, his late wife, how food hadn’t tasted good since she died, his career, and how he’d come to realize that his family would be OK when he passed on. When he felt that he and I had established a personal rapport, he finally asked: Did I think there was a God or was it all hooey? I pushed the question back to him: Did he think there was a God? He answered softly, ‘I suppose.’

“He asked if God was forgiving. I said, ‘Absolutely!’ His voice dropped and trailed off, and he said ‘I sure hope so…’ And then it came out, all of the war-time stories and things he had done. When he finished, with tears streaming down his face, he asked ‘So, guy, could God forgive that?’ I assured him in no uncertain terms that God would forgive us if we only asked. He asked me to pray with him. I got up, put my hand on his shoulder. Knowing his fear and his desire to be ‘forgiven’, I simply prayed. ‘God, thank you for forgiving us for the things that we hide from everyone else. Thank you for the time to share as men today, and most of all for being able to allow us to know that you do.’

“On his face was the first smile I’d ever seen from him. I offered to visit him again, but he said he was ‘good’ and would be spending the holidays with his family. He died quietly in his sleep a few days later.”

Symptoms of Grief

Grief constitutes the emotions triggered by the onset of bereavement. Each of us responds in different ways.

Shock

Shock is often the first reaction to loss. The way one may not feel pain immediately after a serious accident, you may feel yourself in a haze as your mind anesthetizes you against overwhelming sense of loss. You may continue your life on “automatic” and wonder why you feel nothing. This natural defense mechanism can carry you through those first few days when there is so much that needs to be done, so little time in which to do it, and even less to come to grips with your loss.

Anger

Anger is a powerful reaction to being abandoned. It’s OK to resent your loved one for leaving, to feel angry with God for taking your loved one away, and to criticize doctors and even yourself for not doing more to prolong the lost life. Loss is always unjust, and we all look for someone to blame. If you feel angry, allow yourself to and realize that it will fade. Try, though, not to let bitterness be consuming. It can be a powerful devil. Hospice counseling can help.

Guilt

Guilt is a common emotion when you are confronted with the death of a loved one. You just know that if only you’d done things differently, that person would still be at your side. Many, especially when the departed was ill for a long time before passing away, express guilt about being relieved that the ordeal finally has come to an end. The best antidote for relief-based feelings of guilt is to remember that death released the one you loved from suffering.

Despair and Anxiety

Despair and anxiety can be overwhelming. Our partner shouldered half of the burden of our life together. Now we’re alone. How can we get through each day and each of the first few months of bereavement without the love, support and knowledge of the one who’s passed away? Take tasks one step at a time. Do the little things first that your spouse used to do … like feeding a pet or setting the thermostat. These small successes will build upon each other, and you’ll regain your confidence. Be shameless yet gracious in taking advantage of offers of help from your friends. They want to give and you need help. Talking with them about your feelings and your challenges is fine tonic for dispelling despair and anxiety.

Changes in behavior will occur as we work through grief and bereavement. You may become irritable or manically joyous as you attempt to compensate for feeling bad. Common, too, are feelings of depression and detachment. Sleeplessness may lead to fatigue and a sense of physical weakness. One may over- or under-eat or drink more than normal. Uncertainty about the future may cause some to hoard and others to overspend. It’s important to stay in touch with your friends and family, and when they ask “How are you doing?” be candid!

Sadness and loneliness accompany grief and they always will. We long for our loved one’s companionship, conversation, laughter and, yes, even disagreements. A patina of sadness and yearning will always tinge memories of her or him. That’s to be expected. Withdrawal only makes longing for the departed more intense. Spend time with family and friends and find new things to do together. The sadness will be ever present, but loneliness will fade as you continue to pursue life’s dreams.

Remember that young children grieve too, obviously for a parent but also for a grandparent, a favored aunt or uncle, or a close family friend. It’s tempting to shield children from tragedy. Like you, they feel a sense of loss that is heightened when they are not included in the grief process. Discuss death with them gently, but honestly. So doing helps them understand that death is a part of life and may keep them from resorting to unhealthy psychological defenses against grief.

Focus on the Future

A joyous celebration of the life of a loved one brings closure and comfort, and focuses family and friends on the future that the departed wished for the ones she or he cared for. The celebration may take the form of a funeral, a memorial church service or another commemoration of life such as scattering ashes in a place the deceased truly loved.

Dealing with immediate tasks helps channel grief in productive ways. The death of a spouse or child triggers a whole host of legal and financial issues. A hospice social worker can help you sort through the forest of tasks ahead, provide counsel as you set priorities, and steer you to other agencies that can help. Tackling these chores gives the bereaved an important sense of purpose and feeling of accomplishment similar to what they felt as caregiver when the deceased was alive.

Take care of yourself! Some who become despondent after the death of a spouse or other person whom they deeply loved may let themselves go. Keeping up with exercise, eating a balanced diet (or even three meals a day), avoiding reliance on prescriptions or alcohol to blunt pain, sleeping regular hours, and even doing daily chores like dishes, laundry and house cleaning are all important steps that will ensure your good health. Think of it this way, the one you loved cared deeply about your well-being. She or he wanted you to go on with your life, and good health is essential for making that wish come true.

Hospice: Your Companion in Bereavement and Grief

For a year or more after your loved one’s death, AseraCare helps family through bereavement. Professionals and volunteers with special training assist in the development of a healthy grief process. While they are fonts of information and advice, what they do best is listen to you talk about your life with the deceased, learn about your needs and what you would like to do as you go forward. They may suggest that you consider becoming involved in a support group. A support group is usually made up of 10 to 12 people who have experienced loss of a loved one and who share similar interests. The group meets regularly, generally as long as the group members find it beneficial. Facilitated by a trained professional, conversations allow the recently bereaved to share their stories, their successes and their challenges. Other members of the group offer hints and suggestions. Most members feel that their support group is a “safe place” where they can be more candid than with family or even close friends. The bereavement counselor can identify a number of support groups that might meet your specific needs.

Each family is unique. In bereavement there is no “one size fits all.” And family situations evolve in the days, weeks and months after a death. Without being intrusive, AseraCare Hospice stays in contact with families. During your loved one’s final days, you will be offered the opportunity to talk with a bereavement counselor. When death occurs, the counselor will ask how she or he can help. You will receive a follow-up call within a few days, and then cards and letters suggesting bereavement activities in which you might be interested. Should you wish, the counselor can suggest books or online articles that might be helpful. The thing to remember is that with hospice, you are never alone.

The Hospice Presence

The patient had been an avid football fan. He passed away in summer, and now that fall had arrived each family member whose life he had touched deeply was trying to deal with their loss. The football season and the holidays that marked its end would be especially trying, as many good memories had been forged during games and holiday festivities.

Carmen Tegels, chaplain at AseraCare Hospice in Omaha, Neb., once taught sewing. She felt she could use her talents and produce a keepsake that would reinforce memories of good times with sports and provide comfort as well. At her request, the patient’s widow provided some of the patient’s favorite clothing that carried logos of his favorite teams. Carmen then created a special pillow for each family member and close friend. A pocket was stitched on the outside of each pillow. Into it was slipped a photo of the patient taken during a moment that would be especially memorable to each who received a pillow. They were delivered during the height of the season and were an immediate hit with the family. And they provided Carmen with that warm feeling that comes from going above and beyond to care for a hospice family.

Beyond Bereavement

Bereavement and grief over the loss of a person who was once so dear to us and so central in our life will always be present. The pain of her or his passing will diminish over time. Yet within us all lives a portion of the departed’s soul. Memories of their presence are reinforced hourly, in the bloom of a flower from a bulb so lovingly planted, in the smell of a favorite food, in a drive down a street past a house you both admired, or in the way fresh flannel sheets feel on that first cold night of winter. AseraCare Hospice counseling can ease mental anguish over loss but putting bereavement in proper perspective requires personal commitment. Tug McGraw, the awesome left-hander with 1973’s amazing New York Mets, summed it up simply when he said, “Ya gotta believe!”

I’ll have to admit that when Katie (K.T.) passed away, I was pretty despondent. My depression had been growing as her illness progressed. The hospice where Katie had been in residence was eager to help and invited me to participate in groups and talk with staff. Perhaps I should have availed myself of their services. However, completing this book connected me with scores of AseraCare professionals, patients and survivors. I learned their stories and through them reflected deeply on the meaning of dying and death. For me, writing and editing this manuscript has provided a very effective catharsis. I am grateful to AseraCare for the opportunity, and feel that somehow, some way Katie’s spirit laid the groundwork for my recovery. But sustaining that recovery is up to me. So I’ve just completed all those medical tests that gentlemen in their 60s are so wont to avoid. The result was a clean bill of health, which has reduced my anxiety immensely. On Katie’s death, a friend who has written extensively and professionally about bereavement and grief advised me “not to do anything for at least a year.” That’s not in my ken. The tableau of life has been shifted. For me, embarking on a new path was made so much easier by the planning that Katie and I shared in the months before her death. And when I tell friends of some of the things that Katie and I discussed, I’m amazed at how many long-married couples have yet to talk about those issues. Surfacing them while we had a chance to think through them together has vastly reduced any feelings of worry I might have had over not doing things in a way that Katie would have approved. What she wanted was for the man she loved to continue his life as the caring, self-confident and productive person she married. In her honor, it is at once the least and the most I can do. – John Ross