The Family Vigil by Margaret Ledger
All the passages below are taken from the book, “Leaving This Life With Hospice: Stories of Wonder and Hope” by Margaret Ledger. It was published in 2005.
The dying process is extremely hard for the dying person. He has to face illness and all its implications, and the fact that he will lose everything, all his things, and all people he has loved. The family, too, has an incredibly difficult task ahead: to care for, nurture, and love someone who really needs their support, while all their emotions cry out with the pain of the loss that will be theirs.
This family vigil comes in as many flavors as there are families. The progression of the disease varies tremendously. One family may have to cope with the slow, slow loss of a loved one to Alzheimer’s. This disease takes away the person you knew and loved, little by little, while giving the caretaker an enormous burden of care that lasts for years. Cancer is another word that invokes fear. Cancer may be treated very successfully and go into remission for years. Patient and family still live with not knowing of whether or when it will reoccur. Treatments are hard to endure and may go on a long time. Chronic diseases such as lung or heart problems may leave a patient with severely limited capabilities for a long time. So the nature of the disease varies tremendously and impacts everyone involved.
We think of a family vigil as what happens in a formal sense, when the family gathers around the deathbed, summoned just in time, and then wait for the dying person to leave. It a sudden illness or accident, this may be true. The family gathers for the last few days and stand around the bedside, usually in a hospital.
In a hospice care situation, dying process may happen over a much longer period of time, as the patient slowly moves toward the end of his life. If the patient is to be cared for at home, it may place different responsibilities on the family. The physical capabilities of the family to care for the patient also vary tremendously. Hospice care in your own home supports the caregiver, so you will also need to explain to them how round the clock care will be provided when it becomes necessary. A loving spouse may be present and capable of being the caregiver. Parents or willing children may also be the primary support. Many dying people are capable of taking care of themselves with almost daily visits from hospice, until quite close to the end. Sometimes people hire round the clock help in the home, or plan on transferring to a nursing home or a hospice residence, or have a family member or friend live with them, when they come close to the end.Hospice support can continue even if the dying person eventually needs to transfer to a care facility home when no one is able to provide care at his home.
The physical care can be enormously draining. The emotional side of the loss is usually the worst aspect. So many families tell us that they were so glad they were able to keep their loved one at home, but they couldn’t have done it without hospice. A single caregiver may be overwhelmed taking care of someone 24 hours a day 7 days a week, so they do need to ask for help and relief from other family members, friends, hospice volunteers, and paid care takers. Hospice benefit also provides care by funding the dying person’s placement in a care facility for a few days to provide a needed respite.
I have often expressed my awe of caregivers of the dying, in my bereavement groups. My personal experience was in vigil with dying family members for short periods, and as a hospice volunteer where I just spent a few hours with the dying person. I have often said, that I don’t think I would be that good, and I get quite unpleasant when I’m sleep deprived. Each caregiver replied, that he never expected he would be able to do it, but when the situation arose, he just did what needed to be done.
The nature of the relationship
The emotional load experienced by the people around the dying person depends on the nature of their relationship. This is pretty obvious at one level— usually watching spouses dying is harder than watching parents dying; watching young people dying is harder than watching old people dying. But at another level the depth of our connection with someone can vary enormously, even if the relationship is defined in the same way.
One older lady told me of the devastating impact of her husband’s death 20 years earlier. She didn’t know how to drive and yet lived remotely, and she didn’t know how to write a check as her husband had taken care of all that kind of thing. So she faced not only the shock of losing her life partner, but also her own ability to cope in the world.
Another lady in her 60’ s was equally devastated by her husband’s death, because she had no one else in the world to which she could turn. She was capable of handling her own financial affairs to a certain extent, and could manage on a practical level, but this one person had met all her social needs. They had shared a view that you couldn’t trust anyone outside the two of them, so after he died she was incredibly lonely. She did accept hospice personnel as people she could trust and as people who would accept her, so she welcomed my visits.
An offspring had stayed home and lived with her mother all her life. She was there to take care of her mother as she aged and finally died, but the one key relationship in her life was this parent so she, too, became totally lost at her mother’s death. One man said that he and his mother was a couple, in the sense that they were together all day, every day, and shared all details of everyday living.
So one of the concerns the hospice people will have is about the stability of the family after the death. They may encourage the dying person to do what he can that will help their family later. This will include writing a will, putting things in order, teaching loved ones how to do the things that they will be called upon to do for themselves in the future. This vigil, standing together in the unfolding process, is a two way street.
I was able to handle the death my mother in a very different way, from how I had handled the death of my father, 10 years earlier. I had a closer bond to my mother, and you might have thought I would have had a much harder time. The difference was the 10 years that had passed in time, and I had grown emotionally. I had faced my own fear of death, come to understand my own separateness and connectedness. So with my mother, I was very clear I was there to support her, and help her die peacefully. Now when I am faced with loss, I will cry and feel all my feelings intensely, but I know who I am in the world, and I know I will cope.
People experience grief in their own way. As we cannot know what someone else is feeling, we have to accept his form of grief, and validate his process. When a man knows his loved one will die he will deal with it in his own way. Some people will accept it as reality, but make the most of each day, while others will deny it to the final day. Some loved ones begin to grieve ahead of time, and then can be concerned later, when they judge themselves as not grieving enough after the funeral.
I know I cried and cried the day my father told me that he had lung cancer, because I knew this was going to end his life. I had worked with lung cancer patients before, and knew the outlook, given that he was nearly 80 years old. He lived another 18 months, and I didn’t cry much at the time of his death, because I had done my grieving earlier.
I led a support group one day and 2 women each talked of taking care of her dying husband for 10 years. One said, “Well I was getting used to it over the 10 years, knowing he was dying, so I am beginning to adjust now, and the other woman said, “ Well, I didn’t expect him to die, it was a complete shock when it happened.” During the progression of the disease, it was clear to everyone else that the disease was terminal, but she had never been able to accept it.
Each person grieves in his own way and at his own pace, but if he grieves ahead of the death, he may adjust faster to the lost after the death. One woman shared her fear that she wasn’t grieving enough after her husband’s death, but felt relieved when I pointed out how much grief she had experienced before he actually died.
Being with the dying
The emphasis here is on being. Visitors who come to visit with the intent of being a cheerleader, of convincing you that you need more resolve to live, or just to avoid the reality by talking about the inconsequential, aren’t much use, and are definitely exhausting.
A friend with lung cancer told me of her long time friend, who rushed up to her, hugged her, and cried and cried. My friend just stood there, but said to me later, “Why did she expect me to comfort her? I don’t need to deal with her distress and loss. I have enough of my own.”
In training hospice volunteers to be with the dying, we focus on having them listen, being still, and having them pick up their cues from the dying person. We need to put aside all our own issues, check them at the door to reclaim later. All that is required is that we walk in to the patient’s home with a warm heart, happy to be there, in whatever way suits the dying person that day. It also includes sitting quietly, reading a book, ready to help if needed, but not a visitor who requires entertaining.
Sometimes a hospice patient does want us to talk about things outside his room. If he is bored with his restricted view of the world, someone who brings sunshine into the house can be very welcome. I visited one wonderful lady, who was restricted to wheel chair and bed, but she had been an avid gardener, so each week I would take one flower of each plant flowering in my garden, and we would go through them one by one. She would tell me the Latin name, whether she had grown it before, and the best way to take care of each plant. Different volunteers can offer different things. Some give a brief massage; some will bring books or music, or play an instrument, but following what ever lead the dying person has given. Sometimes, bringing a beloved pet into a resident care facility is a comfort.
What do the dying want from us?
Dame Saunders wrote, “I once asked a man who was dying what he needed above all in those who were caring for him. He said, ‘For someone to look as if they are trying to understand me’. Indeed, it is impossible to understand fully another person, but I never forgot that he did not ask for success, but only that someone should care enough to try.”
Dying people want what we all want, to be loved and accepted. They may appreciate being touched, as many people pull away at their appearance. Many times in the course of my work with hospice, I have been thanked for caring. It seems such a small thing to offer. I care, but it seems to make a huge difference.
Dying people also liked to be valued for their lifetime of knowledge and experience. I used to visit another lady who had been an expert in quilting, and still tried to continue these efforts, although her eyesight was failing. I bought myself some fabric to take with me each week, so that she could be my teacher, and we would sit together sewing as we talked.
Stephen Levine said, “When your fear touches someone’s pain it becomes pity, when your love touches someone’s pain it becomes compassion.” This is so true. We can’t really be there for someone, and be her companion until we let go of our own fear, or at least are willing to let the dying person be our teacher.
Ideally we need to show a dying person unconditional love. How do we do that? Sogyal Rinpoche writes of practices to help us develop compassion in his book, The Tibetan Book of Living and Dying.
I think that dying people have taught me compassion, even though I don’t quite understand how that happened. I was fearful when I went to my first dying patient, mostly because I was scared he might need medical or physical help that I was unable to give. I felt an incredible love when I was with him, a love that came for him, that flowed through me, or through him, I couldn’t figure out which it was. I didn’t understand it at all. I am far from unique. Thousand of people who work with the dying would say the same thing. I would also find myself giving a patient a hug or a kiss, and I didn’t understand that either. I saw them beautiful in some way, which belied their physical appearance.
Fear does mask these feelings. It is much easier to be a volunteer who walks into a family, knowing this person will die soon, than to be caregiver who has to face losing his loved one, and a part of himself. Fear is bound to be a big component, when you are in the situation that is affecting all your present and your future.
Coming close to the end of life
The family and hospice will do everything in their power to make the comfort of the dying person paramount. Support for changing physical symptoms will be adjusted as soon as necessary, and the family will know what to do, and how to react, to some “what if” scenarios. All things possible will be done to keep the person dying as comfortable as possible, and to support the family.
The family and hospice will also have done everything they can possibly do to help the person be ready mentally, emotionally, and spiritually. The greatest gift loved ones can offer is to tell their loved one that they will be able to cope without him, although they will miss him terribly, and will always remember him; then tell him that he can leave when he needs to. If they can say this, and really mean it, the dying person will feel free to leave, when they are ready. The atmosphere needs to be calm and quiet. Touching, holding, climbing in bed with to hold the dying person is appropriate if desired. Even so, when many loved ones expect to be present, and not let them die alone, the person actually dies when a loved one is outside the room. Perhaps it was just too hard to leave their loved one if they were in the room.
Specific Spiritual Needs
In dying, people need spiritual support, in a way that helps them. This is not the time to try to change anyone’s beliefs. They may have been devout follower in a particular religion, or may decide to return to beliefs of their childhood. The priest, minister, rabbi, pastor or whatever else their spiritual support may be named, will be called in, or the hospice spiritual coordinator or chaplain will be available to anyone who chooses to accept it. Many people without any specific religion, may be comforted by their own belief in an afterlife, and may want to express their own thoughts and feelings.
To die peacefully the person has to be ready to let go of their attachments to this life: places, things, and people. Sogyal Rinpoche says, “The last thought or emotion that we have before we die has an extremely powerful determining effect on our immediate future.” The Buddhist may have concerns about the kind of life they will be reborn into, but Christians also have concerns about their immediate future. So a peaceful loving environment supports all people and all beliefs.
After death occurs
After death occurs, a survivor may hold to the body of their loved one for a long time, literally holding on, not wanting to accept the death as reality. Some people sit and cry, some people wander off to other parts of the house, not able to believe that death has occurred. There is a whole range of responses.
If the person has died at home, under hospice care, and the nurse isn’t already present, the first task would be to call hospice. The nurse will come to be with the family and usually to formally pronounce the death. She will gently wash the body, and the caregiver can help her if she chooses to. The social worker will also come to the home if there are particular concerns about how a loved one is likely to react.
No matter how well prepared the family is, death itself is still a shock.