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«Serving Colorado’s Front Range The Kingfisher, calm and at peace, nested upon water, quieter of restlessness. A Patient & Family Guide to Hospice ...»

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• Disasters may come as fire, flood, hurricane, tornado, earthquake, winter storms, extremes of hot or cold weather, or prolonged power outages;

some of these depend on where you live, so learn what the major risks in your area are, and prepare accordingly.

34 A Patient & Family Guide to Hospice Care

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It is healthy and natural to think about these questions, and to talk about them with family and friends. Those who know they are going to die soon often experience high quality of life, resulting from the freedom to focus energy on what is really important.

Questions About Dying Death is a mysterious journey for all of us. It is natural to have questions

about the process and what it means. Such questions may include:

• What do I believe about what happens to a person during and after death?

• Are there ways to prepare spiritually for dying?

• What will make me less sad or afraid?

• How do I sum up my life, make peace with who I have been and who I am?

• What kind of funeral, memorial service, or other remembrance do I want after my death?

• Who do I want with me when I die?

These questions and others like them can be painful, but they can also bring great joy and a sense of inner peace. Each of us is different, of course. But many who are experiencing a terminal illness need and welcome persons who do not close off such conversations, but instead encourage them, listen supportively, and offer to share their own ideas and life experience, when that is helpful.

Who Can Help?

Over the past few decades, our culture has become more open in acknowledging dying as a normal stage of life. We now have professionals with special training to help those at the end of life ask the questions and find the answers that will make a difference to them.

Priests, ministers, rabbis, other leaders of spiritual communities: These people can be a significant resource for persons nearing the end of life, and for their loved ones. Every religious and philosophical community has its own beliefs around death and dying. To talk with someone who can both sensitively listen and also articulate a particular faith position can be a real gift. Many religious leaders are happy to extend themselves, even to those who are not officially a part of their church, synagogue, or other faith community. Don’t be afraid to ask.

36 A Patient & Family Guide to Hospice Care

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Suggestions for Being with Someone who is Dying

• Let the person decide what you will talk about and when. Make it clear you are open to any conversation he or she would like to have, even if this is difficult for you. He may want to talk about his funeral or memorial service, for example.

This may be an uncomfortable topic for you, but something that is important for the person to discuss.

• If the person wants to talk about spiritual beliefs, be honest in expressing your own – but honor and respect his.

• While you may not be able to tell the person the outcome of the disease process, you can be truthful and respect his right to be informed.

• Don’t be afraid to laugh or to cry. Real emotion can bring healing and peace.

37 A Patient & Family Guide to Hospice Care

Suggestions for Being with Someone who is Dying

• When a person is too tired to talk, your quiet presence is still appreciated.

Often, touching or just holding hands becomes an important way of showing your love and presence.

• Often, doing something fun together is as helpful as a serious conversation.

• Be willing to change your plans or your topic of conversation based on how the person is feeling at the moment. Be flexible.

• Let the person know what you treasure about him, why he or she are important to you, and what memories you especially cherish.

Preparing for Approaching Death When a person enters the final stage of the dying process, two different dynamics are at work which are closely related and interdependent.

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Patients sometimes linger on in their dying process when important issues remain unresolved. Dying cannot be rushed. The person will continue to live until the body has physically shut down. Working through these emotional and spiritual events which simultaneously occur with the deterioration of the body is the normal and natural way a person prepares to die.

38 A Patient & Family Guide to Hospice Care

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Disorientation: The person may seem to be confused about the time, place and identity of people nearby, including close and familiar people. This is also due in part to the metabolism changes. Identify yourself by name before you speak, rather than have the person guess who you are. Speak softly, clearly and truthfully when you need to communicate something important for the patient’s comfort, such as, “It’s time to take your medication.” Explain why you are asking something – for example, “So you won’t begin to hurt.” Incontinence: The person may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss with your hospice nurse what can be done to protect the bed, and keep your loved one clean and comfortable.

Congestion: The person may have gurgling sounds coming from the chest as though marbles were rolling around inside; these sounds may become very loud. This normal change is due to the decrease of fluid intake and an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Gently turn the person’s head to the side and allow gravity to drain the secretions. You may also gently wipe the mouth with a moist cloth. Raise the head up with pillows to ease breathing. Medications are available that may help dry up secretions. The sound of the congestion does not indicate the onset of severe or new pain, and is usually more disturbing to the caregiver than to the patient.

Restlessness: The person may make restless and repetitive motions, such as pulling at bed linen or clothing. This often happens, and is due in part to the decrease in oxygen circulation to the brain and to metabolism changes. Do not interfere with or try to restrain such motions. To have a calming effect, in a quiet, natural way lightly massage the forehead, read to the person, or play some soothing music.

Fluid and food decrease: The person will likely experience decrease in appetite and thirst, wanting little or no food or fluid. The body will naturally begin to conserve energy which is expended on these tasks. Do not try to force food or drink into the person, or try to use guilt to manipulate them into eating or drinking something. To do this only makes the person more uncomfortable. Small chips of ice, frozen Gatorade or juice may be refreshing in the mouth. If the person is able to swallow, fluids may be given in small amounts by syringe (ask the hospice nurse for guidelines). A cool, moist washcloth on the forehead may also increase physical comfort.

40 A Patient & Family Guide to Hospice Care

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Change in breathing: The person’s regular breathing pattern may change with the onset of a different breathing pace. A particular pattern consists of breathing irregularly, i.e., shallow breath with a period of not breathing of five to thirty seconds and up to a full minute. This is called Cheyne-Stokes breathing.

The person may also experience periods of rapid shallow pant-like breathing.

These patterns are very common and indicate decrease in circulation in the internal organs. Elevating the head and/or turning the person on the side may bring comfort. Hold the person’s hand. Speak gently. Cheyne-Stokes breathing is a normal part of the process. It is not uncomfortable for the patient and is an indication that the patient is close to dying.

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Practical Issues When Your Loved One Dies Notifying Others That Your Loved One Has Died When a loved one dies, some names will come to you immediately as persons who should be contacted. Close family; good friends; the person’s minister, priest, or rabbi; their lawyer and physician. Some calls you will want to make yourself. Other calls have to be made, but you do not need to make them yourself.

When a death occurs, both your friends and your loved one’s friends, as well as other family members, will want to help. It makes sense to let others help in passing the word. With friends, for example, or a church or community group, often you can make only one call and ask that person to organize informing others from that circle of acquaintances.

If there are many calls to be made, keep a list of who has been contacted. That way, there is less chance of overlooking someone important.

Working With the Funeral Home Normally, within 24 hours of your loved one’s death, you should be in contact with the funeral home to set up an appointment with a funeral director.

Funeral homes offer a wide range of services at the time of death.

These usually include:

• Transporting the body from the place of death to the funeral home

• Preparing the body for burial, arranging for a casket and other necessary items for burial, or arranging for cremation

• Working with the family and, if desired, a priest, rabbi, or minister for a funeral or memorial service

• Providing time and space for visitation and a funeral or memorial service

• Assisting in the preparation of an obituary and funeral notice for the local newspapers

• Completing the necessary paperwork for the death certificate, and obtaining certified copies of the death certificate for the family. (Be sure to ask for an adequate number of certified death certificates. You will need one for each life insurance policy or pension the person had, and several more for processing the person’s Last Will and Testament and other financial business. A good rule of thumb is to request at least ten copies.) 42 A Patient & Family Guide to Hospice Care

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Most funeral directors are professionally trained persons who provide their service with compassion and integrity. The role they play in a community is a necessary one, and most do their work sensitively. However, it is important to realize that funeral directors deal with people who are in an especially vulnerable state. When someone you love has just died, if pre-arrangements have not been made, you need to make quick decisions on painful issues.

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If your loved one has joined a memorial society or entered into some other form of prepaid funeral plan, you and other family members will have fewer decisions to make. However, you will also have less control. If you are uncomfortable with the arrangements that have been made, you may have little choice but to accept them and understand that they represent your loved one’s wishes.

Planning a Funeral or Memorial Service After one they love has died, most people find it helpful to participate in some structured ritual of celebration, remembrance, and letting go. Depending on the religious tradition and individual tastes of the deceased person and his or her family, this might range from a formal religious service followed by an elaborate wake, to setting a time for family members and friends to gather informally to talk about the one who has died. Such services, both formal and informal, can be a source of comfort and strength, gathering together the community of grief to laugh and cry and remember together.

Below is a list of questions which will help you in planning a funeral or memorial service for a close friend or relative who has died.

• Did your loved one leave any specific instructions about the kind of service that he would want? Did those instructions include specific requests for readings, music, a person to preside, or a place where the service should be held?

• When will it be convenient for the service to take place? Do close family and friends have schedules which have to be worked around in planning the time and place of the service? Do religious beliefs determine the timing?

• Where will the service take place? If the person belonged to a church, synagogue, or other religious community, when can it schedule a service?

• Who will officiate at the service? Will it be a minister or other religious leader, a family member, or friend? Do you want an organist, soloist, or other provider of music, and how will those arrangements be made?

• Are there readings, music, pictures, or any other elements which you think would be especially meaningful to you and others as part of the ceremony?

• Do you want to choose someone to deliver a formal eulogy? Do you or other friends or family members wish to offer some personal words of remembrance at the service?

44 A Patient & Family Guide to Hospice Care

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share the responsibilities with other family members, do hard tasks with another person, and don’t take on too much at one time. It is normal to feel overwhelmed at times with the finishing up of things.

Experiencing Grief and Loss Anticipatory Grief Watching someone you love decline in health is a painful process. When death is anticipated, both the patient and loved ones may experience a normal form of grief. It is called anticipatory grief and is similar to the process of grief following a loss.

Some of the aspects of anticipatory grief that you may notice include:

• Heightened fear, anxiety and depression

• Increased concern for the well-being of the terminally ill person

• Imagining the actual event of the death

• Attempts to adjust to the changes that may occur after the death.

Although anticipatory grief is a painful process, having some warning prior

to the death can allow for several things:

• Absorbing the reality of the loss over a period of time

• Saying goodbye and completing other unfinished business with the dying person

• Reassigning the family roles of the dying person

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