WHAT WILL WE BE DISCUSSING?
In order for clergy to be effective Shepherds of their entire flock, and for all of us to move through our years in a healthy way, “Death” is a part of life that must be addressed. Over the following months, we will be discussing a myriad of sensitive and important subjects in the dying process, including signs and symptoms of dying, with tips for caregivers. In the last days of life as death approaches, we will discuss the physiological changes including weakness and fatigue. We will look at why the dying stop eating and drinking fluids, and why they appear to withdraw from the world. We will learn how best to help a terminally ill person, and how best to comfort their loved ones. We will look at the grief process, which begins at the time of diagnosis with the prognosis that the patient has less than six months to live if the illness progress as normal. We will learn about pre-bereavement, and the 13 months grieving phase after the loss. We will discuss Vigils, essential prayers and meaningful funerals/homegoings/memorials that will bring comfort to all family and friends in their time of great sadness. We will also learn how to help our children through the process by learning how to communicate effectively.
WHO WILL BE THE MAIN TEACHER?
Our Matriarch and Co-Presiding Bishop, the Most Rev ++ Dr. Christine Mercy Johnson is a Chaplain with the International Federation of Christian Chaplains – Badge # 4226. She has served in Hospice for over ten years professionally as a grief and bereavement counselor, and trains clergy to act as responsible chaplains to hospices, nursing homes, hospitals, and individual families. Archbishop Johnson has conducted hundreds of funerals and vigils over the years and has a particular sensitivity towards supporting children and adults with special needs who find the death of a loved one especially confusing. She will share her knowledge in order for us all to best learn how to be confident Shepherds in this ministry.
DO WE ALL GRIEVE IN THE SAME WAY?
COPING WITH GRIEF AND LOSS
Embedded in the promise of life is the certainty that everyone dies. Sooner or later, all of us will grieve the loss of loved ones, whether the agent is a sudden heart attack, stroke, an accident, a larger tragedy such as terrorist attacks, the stress of a disease like cancer, or old age.
Every year, millions of men, women, and children die, leaving behind many others who mourn for them. For decades, popular concepts about grief-focused on severing the relationship with the deceased. Many experts in the field of psychology believed that a bereaved person could move forward in life only after accomplishing this. Newer standards of the way grieving unfold suggest that people must pass through certain phases or accomplish tasks to resolve grief. But do these standards describe universal truths or merely spotlight aspects of a complex process that varies from person to person?
Even a fleeting glance at different cultures shows that people mourn in very different ways. What seems right in one culture – deliberately subdued emotions, perhaps, or restrained wailing from mourners – is jarringly out of place in another. And grief does not vary only from culture to culture; as in other areas of life, differences among individuals are abundant.
If you have experienced the death of someone close to you, you know how painful and prolonged grief can be. But there are ways to channel grief and navigate its desolate waters.
Over the coming months, our intention is to help you do so and to help others in your care. We will be giving you practical ideas for you to try, based on current research, practical experience with an eye to common sense. You will also learn that certain sayings about grief are backed by little or no actual evidence. Contrary to what you may have heard, for example, DENIAL has a useful side. Anger is not always part of grieving. And no single pathway leads out of grief or ensures that you will achieve closure.
No words, written or spoken, are powerful enough to erase grief. But perhaps the advice in these teachings can help ease your sorrow or help you to minister to others in need of support. It may also help to know that most people are able to weather this storm and find that healing occurs in time.
SIGNS AND SYMPTOMS OF DYING
Each person brings to dying his/her own uniqueness. Each death, like each person, is different. However, people who are in the dying process do share some common signs and symptoms.
“I recall when we knew my beloved mother was dying the absolute grief that engulfed me. I had never seen anybody die before, and when we were told that she only had three months to live, I was greatly distressed and fearful. As she each day passed, I became even more afraid, because I had no idea what to expect. Nobody told me what I would see. Nobody told me about the signs and symptoms of dying, and nobody would answer my many questions in the quest to give her the best support and care that she needed. Three months turned into ten. I can honestly say that it was her last days that have shaped my ministry and calling, and her passing that taught me the most about life, death, and the essential gift of hospice. That was twenty years ago. Upon her passing, I made it my goal to help other patients, their caregivers, children, and pets in the same situation, as they all face this difficult time in their own way. I have had the profound honor to support hundreds of patients and their families since my mother’s death and I am a huge advocate for some knowledge is better than no useful information. This article will address the final few days.”
Your loved one may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, detaching from surroundings and relationships, and the beginning of “Letting go.” Because hearing may remain all the way to the end, speak to your loved one in your normal tone of voice, hold his/her hand, and say whatever you need to say that will help the person “let go.” Their favorite music can be played quietly, and it is appropriate to read to them gently if it appears to give them a sense of calm.
Your loved one may relate perceptions that are not detectable to you. This should not necessarily be thought of as a hallucinatory activity. Do not contradict, explain away, belittle or argue about what your loved one claims to have seen or heard; these are real experiences to your loved one. Affirm his or her experiences. They are normal and common. If they frighten your loved one, explain to him/her that they are normal. Many people will say that they can see their loved ones who have already died, and this is very normal. Others claim to see angels, which is also perfectly normal.
Your loved one may perform repetitive and restless behaviors. While this restlessness may be related to his/her physical condition, it can also indicate that something is still unresolved or unfinished that is disturbing him/her and preventing him/her from letting go. Hospice team members can assist you in identifying what may be happening and help you find ways to help the person release from the tension or fear. Other things that may be helpful in calming the person are to recall a favorite place or experience the person enjoyed.
“I recall one situation where I was sitting vigil with a lady who had no family present. Her son was in another state sitting vigil with his dying wife. My patient opened her eyes, looked at me and gasped, “Help me!” Moments later she gasped the name of a man or boy. I left her momentarily to ask the nursing staff if they knew who this male was. They explained the situation to me. I immediately arranged for a telephone to be placed by her side, and once I had connected her to her son, I left them for a few minutes. I had instructed her son to speak lovingly to her and to have his last conversation of thanks etc. Ten minutes later I reentered her room, to find her calm with a smile upon her face. She died peacefully a few minutes later with me holding her hand. This gesture gave her the closure she needed to pass away and gave her son the same closure and freedom from his guilt of not being able to be in two places at the same time.”
FLUID AND FOOD DECREASE
When your loved one wants little or no fluid or food, this may indicate that the person is ready for the final shut down. Do not force food or fluid. You help your loved one by giving him/her permission to let go whenever he/she is ready. If you try to force food or fluid, you take the risk that they will choke. It is important to affirm your loved one’s ongoing value to you and the good you will carry forward into your life that you received from him/her. The nursing staff may instruct you to dab your loved one’s lips with ice cubes. Towards the end, your loved one may have a tremendous amount of saliva which foams from their mouth. Gently wiping away the secretions is a great help.
I am aware that this is a sensitive subject that needs to be discussed. Therefore, we will discuss this and breathing changes in another article.
Your loved one may only want to be with a very few or even just one person. As your loved one’s perceptions are changing, he/she may also indicate a desire for the presence of different support persons. Such a shift in preference does not mean you are any less loved or important. It may mean you have already fulfilled your task with him/her. If you are requested to be of support in the final stages, your loved one needs your affirmation, support, and permission.
“My mother was a well known, dearly respected, and beloved member of our family and the community. Many people wanted to come to see her before she died, but with each crying person, it was obvious that she could not cope with the emotions of others. It was difficult to tell people this, but her protection and state of mind were more important to me than pacifying others. I felt that it was most important that our children were able to say goodbye, and we will discuss this in another article, which will be dedicated to children’s grief.”
Your loved one may take a seemingly “out of character” statement, gesture, or request. This may result from changes in the brain due to his/her illness. It can also indicate that he/she is ready to say goodbye and is checking to see if you are ready to let him/her go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say.
I have known many instances when the patient has requested that their family members leave the room to go to do an errand. Within minutes of their family members leaving, they have died. This can cause a sense of deep sadness, regret, and guilt.
“Many say, “Why did he/she die when I left the room?” Others lament, “I should have with him/her, I feel so guilty.” Many people die when alone and one can only guess that they either did not want their loved ones to see them die for concern as to how they would deal with it or in some circumstances, their family member is either too loud or disruptive. I liken it to when we are exhausted and want to sleep but the TV or other outside noises are so loud that we cannot succumb to sleep. I have been with patients who had up to twenty people with them, some even arguing and grabbing at the patient. Needless to say, we should honor the process of death and use common sense and love to decide how best to deal with each circumstance.”
PROVIDING FOR SPIRITUAL DESIRES
If your loved one has previously discussed a desire for specific spiritual support near the time of physical death, be prepared to honor such wishes in order to provide invaluable comfort. Such practices may include having a spiritual symbol close at hand, reading some significant text or prayer, and/or having a chosen spiritual support person visit.
“I asked one family member if a hymn would be a blessing to his mother as he had indicated that she loved hymns and sacred music. I always carry my phone with me and went to YouTube to search for a beautiful piece of music. In this case, I chose a hymn called God be in my head by John Rutter.
“God be in my head, and in my understanding;
God be in mine eyes, and in my looking;
God be in my mouth, and in my speaking;
God be in my heart, and in my thinking;
God be at mine end, and at my departing…”
The moment the choir sang, “God be at mine end, and at my departing…” we watched as his mother smiled, sighed, and peacefully passed away. Needless to say, it was so very beautiful and brought peace and closure to her son and the entire family.”
GIVING PERMISSION AND SAYING GOODBYE
Giving permission to your loved one to “Let go” without making him/her feel guilty for leaving or trying to keep him/her with you to meet your own needs can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure that those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give him/her assurance that it is all right to let go whenever he/she is ready is one of the greatest gifts you have to give your loved one at this time.
Saying goodbye is your final gift of love to your loved one, for it achieves closure and makes the final release possible. Tears are a normal and natural part of saying goodbye and do not need to be hidden. They express your love and help you to let go. It may be helpful to lie in bed with your loved one and hold him/her or to take his/her hand and say everything you need to say. Your final words may include “I love you,” “Please forgive me,” “I forgive you,” and “Thank you for ……”
If your loved ones have a beloved pet, it is a good idea to let that pet come close to her/him if possible. Oftentimes, pets have an instinct when it comes to times like this, and if allowed to be close, both your loved one and their pet will be connected in a mysterious and mutually comforting way.
“I was a young child when my beloved Grandmother died, and I was not told for six weeks, which was devastating to me. My beloved father was seventeen when he died, and we were not permitted to be at the hospital after visiting hours. This death also impacted me greatly as I was the last person to be in his room the night before and knew in my heart that we were about to lose him. He died at 3:00 AM, alone.
When it came for my mother to die, I was defiant of rules and regulations as I had promised her that I would stay by her side as she requested. I had cared for her at home until a few days before she had to be transferred to a hospice. Mum had been in a deep coma for a day when the signs pointed to her final few breaths. I sat on the bed next to her tenderly holding her hand. She opened her eyes and turned her frail body round to look at me. Her eyes had, “I love you!” shining out to mine. I gently placed my arm around her and said, “Mum, I love you too. We are going to be ok. Thank you for everything you have done for me, now go and be with dad, and go and be with the Lord. Bless you, mum!” She smiled the most beautiful smile I had ever seen, and rolling back to her left side, she closed her eyes, sighed and left us for heaven.
It still gives me tremendous comfort to know that she died in that way. I cannot emphasize enough how important this is, and why I am so deeply committed to ensuring that those in my care are not alone at this time, and if possible, their loved ones are given the dignity and space to receive the closure they need and deserve.”