Guide for Caregivers

Information for caregivers

Preparing for death – a guide for caregivers

As a person is dying, their body will go through a number of physical changes as it slows down and moves toward the final stages of life. Many of these changes are normal and to be expected. Please remember that each person is different; all of these signs and symptoms won’t occur for everyone. Although the following changes are presented in the order in which they usually appear, some variation is common.

When you notice changes or have any questions or concerns please talk to the Home and Community Care Nurse, family doctor, or one of the Victoria Hospice palliative care team members. They can make any needed adjustments and offer practical suggestions.

We hope that this information will help you prepare for changes that are likely to happen. We include some practical advice and comfort measures to help you in your role as caregiver and advocate.

A dying person may…

  • Sleep Longer

    A dying person may sleep for longer periods and sometimes have difficulty waking. Times of increased activity and communication may be followed by hours or days of deep sleep and unresponsiveness. In the moments before death occurs, many people appear to be sleeping or comatose.

    • Plan visits for times when the person is more wakeful and alert.
    • Encourage visitors to sit quietly at the bedside. Physical touch, such as holding hands, may be a good way to connect.
    • Avoid overtiring the person. Limit the number and length of visits.
  • Eat and Drink Much Less

    It is normal at end of life for people to have very little appetite or thirst. A dying person may not be interested in food or drink. This is a natural part of their body preparing for death.

    • Ask what they wish to eat or drink.
    • Serve small portions of soft, light food or fluids.
    • Understand that if a dying person eats or drinks more than is wanted, this can cause nausea, vomiting and other problems.
    • Clean the person’s mouth with a damp cloth or mouth swab, and apply moisturizer to the lips to help with dryness.
  • Experience Emotional and Spiritual Changes

    A dying person may talk about going on a trip, ask to go home, or speak to people you don’t see. Strong emotions such as fear or anger also may be expressed near end of life. Although not everyone will experience these responses, they are considered normal and expected.

    • Continue to respond in your usual way.
    • Realize that the dying person may be working through important issues such as life review, saying goodbye and letting go.
    • Accept that unusual language or references are not always signs of a problem and may hold helpful insights into the dying person’s experience. This is explained in a book called Final Gifts (1993) by Maggie Callanan and Patricia Kelley.
    • Ask for a Victoria Hospice Counsellor or Spiritual Care Coordinator or your own spiritual advisor to visit and discuss these changes with you.
  • Become Confused and/or Restless

    A dying person may be unable to recognize familiar people or surroundings, see things that you cannot see, pull at their sheets and clothing or reach into the air.

    • Speak calmly, slowly and in a manner that is familiar to the person.
    • Offer reassurance about their safety and your presence.
    • Consider playing calm and soothing music, gently placing your hand on the person or offering a gentle hand or foot massage.
    • Keep the atmosphere quiet and turn down the lights. Try to minimize stimulation.
    • Give gentle reminders about the time, where they are and who is present in the room. Use caution when attempting to correct or discount what appears real to the dying person as this may increase their distress.
    • Ask the nurse, doctor or palliative care team if medications would help.
  • Have Difficulty Swallowing

    A dying person may forget to swallow or have difficulty swallowing as weakness increases. Foods and fluids with the consistency of yogurt are easier to swallow than thin water-like fluids.

    • Give only small amounts of food and fluid. Too much may cause choking and/or vomiting.
    • Remind the person to swallow.
    • Ask the nurse or doctor to suggest how to give medications when the person can no longer swallow.
  • Have Irregular or Shallow Breathing

    Rapid, shallow breathing is common. There may be pauses between breaths of 10 to 30 seconds or longer. Changing breathing patterns are normal, and usually the dying person is unaware of and untroubled by these changes.

    Remind yourself to breathe. Sometimes caregivers temporarily forget to breathe when focused on the dying person’s breathing patterns.

  • Develop Wet-Sounding Breathing or Moaning

    As the body weakens, saliva may collect at the back of the throat and cause wet-sounding breathing. This wet sound may also be caused by congestion deeper in the lungs. Moaning as the person breathes in or out may or may not be an indication of discomfort.

    • Discuss what you are hearing with the nurse or doctor. There are medications that can decrease congestion or provide relief if pain is a concern.
    • Change the person’s position, perhaps by turning him or her to one side, raising the head of the bed or using pillows to prop the person up.
  • Become Unresponsive

    The person may no longer respond to voice or touch or may seem to be sleeping with their eyes open.

    • Continue to speak to the person. Your familiar voice is likely to be comforting. It is generally believed that people can still hear even when they cannot respond.
    • Tell the person what you are going to do before you do it (e.g. a position change, personal care or giving medications).
    • Ask the nurse or doctor if drops would be helpful to prevent eye dryness.
  • Lose Control of Bladder or Bowels

    If the person has stopped eating and drinks very little, loss of bowel and bladder control may not be an issue. Decreased urine output and bowel movements are normal at the end of life.

    • Ask the nurse for information about protective padding and whether a catheter is appropriate.
  • Have a Change in Body Temperature

    The person may feel unusually warm or cool to the touch. When the temperature-regulating part of the brain is not working or a fever has developed, the person will feel hot. Conversely as circulation slows, their arms, legs, hands and feet may feel cool, and the skin may look patchy or bluish in colour. This is a normal part of the dying process and, usually, people do not feel these changes.

    • Remove blankets or place cool cloths on their forehead if the dying person is too warm.
    • Use mouth swabs or damp cloths to prevent dryness in the mouth.
  • What About You?

    At this time, you may find you are so busy being a caregiver that you are not looking after your own health. Remember, it can be difficult to care for another when you don’t care for yourself.

  • Self Care Suggestions
    • Ask for and accept help with care, household and other tasks (e.g. phone calls, shopping).
    • Find ways to handle updates and enquiries (e.g. use email, designate a friend).
    • Notice what gives you comfort or pleasure (e.g. time with others, reading, nature).
    • Remember to breathe, to eat and to sleep.
    • Set limits and say no when you need to. Let others know how you are doing.
    • Don’t ignore the humour and beauty in life.
    • Share stories and memories.
    • Acknowledge this is a difficult time. Remember that everyone (including you) is doing their best.
    • Do anything that feels like self care (e.g. massage, haircut, nap, walk, sit quietly, cry).
    • Maintain your spiritual and religious practices.
    • Sing, play or listen to music that comforts or uplifts you.
  • Saying Good-bye

    For many people, saying goodbye is very important. The person who is dying, as well as friends and family members, may wish to express their love, gratitude and sorrow to each other. Some people may say goodbye through conversations, letters, trips and rituals, or simply by being together. Some dying people are most comfortable with having people around, while others are more at ease with quiet and privacy. Sometimes a person seems to choose the time to die, perhaps when alone or when particular people are present.

    You may wish to:

    • Talk about shared experiences, offering and receiving love.
    • Offer or ask for forgiveness.
    • Remember that tears are a natural and healing release of sadness.
    • Reassure the dying person that you and your family will be okay.
    • Choose a funeral home if you have not already done so.
  • At the Time of Death

    You will notice that the person’s

    • breathing and heartbeat have stopped
    • eyes are not moving and may be open or closed
    • mouth may fall or remain open as the jaw relaxes
    • skin becomes pale and waxy looking
  • When Death has Occurred at Home
    • DO NOT call 911, Police or Ambulance. Emergency Medical Personnel may try to revive the person and will transport them to the hospital emergency department. This can be very distressing.
    • DO CALL Victoria Hospice, the Palliative Response Team, or the Home and Community Care Nurse (HCCN). The phone numbers for Victoria Hospice and the HCCN are in the blue Palliative Care at Home binder. They will arrange for a nurse or doctor to come to your home, as required, to pronounce the death.
    • DO CALL family members, friends or your spiritual advisor if you would like someone to be with you.
    • SPEND as much time with the person who has died as you wish. Remember there is no need to rush. Take time to absorb the reality of death and to say goodbye.
    • Call the funeral home when you are ready, after the nurse or doctor has arrived. If you have not chosen a funeral home, do so at this time.
  • After the Death…

    This final leave-taking can be a difficult time. You may wish to spend time with the body of the person who has died, reminiscing and saying good-bye. Before the funeral home attendants arrive, you may want to bathe and/or dress the person or gather special objects or notes to send with him or her. You may prefer to choose the clothes you want the person to wear and give them to the attendants, or you can bring them to your meeting at the funeral home.

    When the funeral home attendants arrive, they will move the body to a stretcher in preparation for leaving. The body will be placed in a special zippered bag made for the purpose of transport. Consider whether or not you wish to be present when the person’s body is removed. You may wish to remain with the body or you may want to leave, go into another room or go for a walk while the stretcher is taken out. Memorial or funeral plans can be made or confirmed at an appointment with the funeral home the next day.

  • Resources

    Victoria Hospice Society offers bereavement support by counsellors for individuals and families, including children and teens. Our services include telephone support, counselling, a variety of bereavement support groups, including drop-in and walking groups, education, referrals to other local resources and services, and educational resources and brochures.

    If you or someone you know has concerns or questions about grief, please contact us.
    Bereavement Services
    Victoria Hospice Community Support Centre
    102-4450 Chatterton Way
    Victoria, BC V8X 5J2
    Phone: 250-370-8868

    The Community Support Centre is open Monday through Friday (excluding holidays).

Organ Donation

Palliative care patients are usually not appropriate organ donors, but they may be successful corneal tissue donors by participating in the Eye Bank of British Columbia’s “Legacy of Sight” program. Since 1984, over 500 British Columbians each year have had their sight restored through corneal transplants and scleral grafts.

  • To become a corneal tissue donor

    To become a corneal tissue donor, you must do two things:

    • Inform your family: next-of-kin consent is needed even for registered donors. At least one third of organs and tissue that could be available for transplantation are lost because of the difficulties in obtaining consent. Family members can ensure that your wishes are honoured by informing health care providers of your decision to be a donor before death occurs.
    • Register with the BC Organ Donor Registry. Registration cards are available at British Columbia Motor Vehicle Branch offices and all London Drugs retail outlets, or you can register online.
  • More information about corneal transplants or eye donations

    Please contact the Eye Bank of British Columbia at 1-800-667-2060 or by email.

Planning a Funeral or Memorial Service

For most people, after a death has occurred, it is important that family and friends have opportunities to come together to grieve. Funeral and memorial services or other public gatherings are ways for this to happen. They also allow the wider community to support family members and recognize the loss. How or where people gather is not as important as the fact that they are able to come together.

Download Funeral Planning and Decision Making brochure.

  • Things to Consider When Making Arrangements

    This is a time to:

    • Say good-bye
    • Pay tribute or respect and share memories
    • Acknowledge relationships with the person who died
    • Express spiritual or religious beliefs about life and death
    • Give and receive support by the sharing of sorrow
    • Express feelings openly and as a group
    • Acknowledge the reality of death for all people
    • Find comfort in cultural and family traditions
    • Reconnect with family and friends
    • Funerals or Memorial Services

    When making decisions about a service or ceremony of remembrance, it is important to consider patient and family needs and wishes, religious and cultural beliefs, finances, and certain basic information and options. For example:

    • At a funeral, the body is present in either an open or closed casket; at a memorial service, it is not.
    • Either service can be religious or not; it can be held in a church, funeral facility, private home or any other place of choice.
    • The kind of service does not dictate whether burial or cremation is chosen, nor does the choice of burial or cremation determine the kind of service held.
    • While most people prefer to make arrangements through a funeral facility, it is also possible for families to carry out the necessary plans themselves.
    • For some people, it feels right to make some or all of their funeral or memorial service arrangements in advance. Others do not want to discuss the details. Do what feels right for you. The main benefit of pre-planning is that you can express your wishes yourself.
    • If you have been asked to make arrangements for a funeral or memorial service for someone else, it can be helpful to do some of this in advance when there is less pressure.
    • Whenever possible, bring someone with you when making funeral arrangements to act as your advocate or support.
    • Funeral directors often explain ‘all the options’ to people who are making arrangements. This may feel overwhelming. If you do now want to receive what might feel like a sales pitch, be very clear about your wishes from the beginning, and let the funeral director know if you don’t want to hear all the options.
    • The funeral home registers the death and produces the death certificate. How many copies you will need depends on the complexity of the estate and therefore the number of institutions you will need to provide a copy to. You will need to provide the following information to the funeral home:
      1. Social Insurance Number, birth certificate and Care Card number
      2. Vital Statistics (name, date of birth, birthplace, birth name, father, mother, residency, marital status, occupation and place of death)
      3. Clothing, as wished.
    • Medical certificate (comes from the physician or registered nurse)
    • When working with a funeral home, be clear that you want the total price for all the services that you require. Funeral homes often refer to immediate disposition or immediate cremation as one of their options. This includes transfer of the body from the home or hospice/hospital to the funeral home, and some other professional services. It does not, however, include the cremation fee, cost of burial or other administration fees.
    • Some funeral homes offer ‘after care’. This involves a funeral director meeting with the family to discuss death benefits such as the Canada Pension Plan, Veterans’ benefits, etc. as well as information on how to discontinue a driver’s licence, work with the bank, deal with income taxes, etc. There is an extra cost attached to this service, but for some people it may be very useful. For others, it might be enough to have an executor’s checklist.
  • Memorial Societies

    A Memorial Society is an organization that was formed to reduce funeral or memorial service costs. Each Society is associated with a particular funeral home, although other funeral homes may also be willing to honour those plans and prices.

    It is not always more affordable to make plans through a Memorial Society, but the existence of Memorial Societies may help to regulate and control prices and competition. Memorial Societies are also a source of information for the public.

    The Memorial Society of British Columbia
    Operating for 50 years
    $20 fee to join
    1-888-816-5902 (answered 24 hours a day)

    Vancouver Island Memorial Society
    Incorporated in 1971
    $15 fee to join
    250-388-7170 or 1-800-661-3358

    Cemeteries and Crematoriums
    There are three cemeteries/crematoria in Victoria. Both of these organizations work with funeral homes. You may want to speak to them first, but you will still need a funeral home unless you are prepared to make all of your own arrangements (see below for more details).

    First Memorial Garden of Memories
    Full- service funeral home, cemetery and crematoria
    Owned by Service Corporation International
    4725 Falaise Drive

    Royal Oak Burial Park
    Owned by the municipalities of Victoria and Saanich
    Not-for-profit Society
    Has both a crematorium and a burial park
    4573 Falaise Drive, Victoria, BC

    Hatley Memorial Gardens
    Owned by Arbor Memorial Services which also own Sands Funeral Home
    2050 Sooke Road, Victoria, BC

    Making Your Own Funeral Arrangements
    It is possible to register a death, transport the body and complete burial or cremation arrangements without the assistance of a funeral home. To complete arrangements on your own, remember these important points:

    • Following a death, a Medical Certificate of Death is completed by a physician or a Registered Nurse
    • A Registration of Death form must be completed within 48 hours after the death either by staff in hospital or family at home. The ‘Funeral Facility’ section of the form should state that the next-of-kin are removing the body with the physician’s approval. The form is available from Vital Statistics.
    • Take both the Medical Certificate of Death and the Registration of Death forms to: Vital Statistics, 818 Fort Street, Victoria, BC any weekday from 8:30 a.m. to 4:30 p.m. Telephone: 250-952-2681.
    • Once the death is registered, a Permit for Burial or Cremation is issued. There is no fee for this. Vital Statistics also issues copies of the Death Certificate. There is a charge for each one.
    • Before transferring the body, a Private Transport Permit must be obtained from Consumer Protection BC. This permit can be obtained prior to death.
    • If death has occurred in a hospital, return to Admitting with the Permit for Burial or Cremation. Arrangements will be made for the body to be released. The family may take the body home temporarily or transfer it directly to the cemetery. If death has occurred at home, the body can also now be moved to the cemetery for burial. However, if cremation is planned, it is important to consider that, by provincial law, cremation cannot take place until a minimum of 48 hours after death.
    • Make arrangements with crematorium or burial park staff prior to transferring the body for cremation or burial. Prior to cremation, any pacemaker, prosthesis or other mechanical or radioactive devices must be removed.
    • Contact the Coroner’s Office to access a permit which is needed only if the body is going to be taken to a destination outside British Columbia.

    NOTE: There are many ways to personalize this experience while still working with a funeral home. For example, it is possible to build or to provide your own casket or urn, or to wash or dress the body. Ask funeral homes about ways in which you can be involved.

  • Preparing an Obituary

    An obituary notice goes into the newspaper to tell the community that the death has occurred and to announce funeral or memorial service plans. The obituary may also be sent to newspapers in other communities where the person is known. Some families write the obituary themselves, while others prefer to have the assistance of a funeral director. The notice will include the name of the person who died, and the date and location of the death. In addition, information about a service, flowers or donations are usually included.

    Beyond the basic information, there is no prescribed obituary format to follow. Information about the cause of death, the person’s date of birth and the names of surviving family members and special people are often included. Some families like to include information related to the person’s achievements during their life, or their personal attributes. The cost of publishing an obituary may be a consideration in deciding how much information to include.

    If you choose to designate Victoria Hospice as your charity of choice in lieu of flowers, please use this mailing address for memorial donations:

    Victoria Hospice and Palliative Care Foundation
    1952 Bay Street, 4th Floor, Victoria, British Columbia, Canada V8R 1J8

    We will send you a list of donors who make donations in memory of your family member if you give us your contact information. Please call our Victoria Hospice and Palliative Care Foundation office at 250-519-1744 from 8:00 a.m. – 4:00 p.m. Pacific Standard Time, Monday to Friday, or send an email to our fundraising staff.

  • Helpful Resources

    NOTE: Many airlines have a compassionate travel policy. Check on this prior to booking any flights for those attending the funeral or memorial service.

  • Settling the Estate

    Important things to consider:
    Power-of-attorney becomes null and void after a death occurs.

    A will is the document containing a set of instructions that become effective upon the death of the person who made the will. The will dictates how the possessions of the deceased are to be divided, and authorizes a chosen person (executor if a male, or executrix if a female) to collect assets, pay debts and distribute the property. When choosing an executor/executrix, it’s a good idea to name an alternate so there will be somebody immediately available if the chosen executor/executrix is unable or unwilling to take responsibility.

    The executor/executrix is allowed to remove the will, funeral information and marriage licence immediately from a safety deposit box. It will then be sealed for 14 days before release. If there is no will, visit the Ministry of Justice website for information on how to proceed. Not all wills need to be probated (the process by which property of a decedent is retitled); joint property and accounts are generally exempt. Check with the Ministry of Justice website for specific information on probating a will.

    Unless a property deed states “joint ownership”, property ownership is considered to be “tenants-in-common”. To transfer a house or land owned “tenants-in-common” requires:

    • A Certified copy of Letters Probate
    • A statement of assets of estate issued by the Court Registry
    • A fee plus percentage of the market value

    To transfer property owned “jointly” requires:

    • The deed or legal description of the property
    • A death certificate

    Copies of the death certificate are required for most legal transactions. The number you will need will depend on the complexity of the estate. For example, if the deceased had multiple investments and holding with different institutions, you will need more copies. A Funeral Home or the BC Vital Statistics Agency can provide these.

    Pension cheques issued in the month of the death do not have to be returned.
    Insurance benefits are paid directly to the beneficiary.

    Canada Pension Survivor benefits must be applied for in person. Application requires:

    • Birth certificate(s) of deceased, spouse and dependent children
    • Marriage licence
    • Death certificate
    • Social insurance cards of deceased and spouse
    • Relevant application forms

    Many airlines have a compassionate travel policy. Check on this prior to booking any flights

  • Financial Information for Patients and Families

    It’s recommended that you keep all important documents together. If they are kept in a safety deposit box, make sure that copies of the will, funeral arrangement information and insurance policies are stored elsewhere for easy access. If possible, set up the safety deposit box like a joint account with your spouse, family member or executor/executrix. Important documents to organize include:

    • Instructions for funeral/memorial service
    • Safety deposit box information
    • Important keys (make sure they are labelled)
    • Insurance policies (name, number, amount, beneficiary)
    • Health, accident or burial policies
    • Pensions, RRSPs, stock sharing plans
    • Stocks, bonds, holdings
    • List of creditors/debtors
    • Title documents to your house, car, boat, etc.
    • List naming your advisors, lawyer, insurance agent, clergy, accountant
    • List of close relatives and friends to contact
    • List of any personal effects or requests not included in your will
    • Credit cards (names and numbers)

    For helpful information about government benefits that you may be eligible to receive during your illness, visit the Canadian Virtual Hospice website. There might also be local programs offering financial assistance, such as the BC Cancer Agency’s financial assistance program. Consider government programs for your family members, like the Compassionate Benefits Program, to reduce financial stress for those caring for a person who is very ill.

    Since February 2001, the BC Palliative Care Benefits Program allows BC residents receiving palliative care services at home to receive, at no cost, selected medications, supplies and equipment needed for care and treatment. Check with your physician, Victoria Hospice or your Home and Community Care Nurse for more information on this benefits program.

    After a death occurs, an executor/executrix will settle the estate of the person who has died. Settling the estate refers to various business, financial and property arrangements that may now need attention. Here are some important things to consider when settling an estate.

    Working Canadians contribute to the Canada Pension Plan (CPP) through payroll deductions. When a contributor dies, CPP survivor benefits are paid to the contributor’s estate, surviving spouse or common-law partner, and dependent children. There are three types of benefits:

    1. The death benefit is a one-time payment to the estate of a deceased CPP contributor.
    2. The survivor’s pension is a monthly pension paid to the surviving spouse or common-law partner of a deceased contributor.
    3. The children’s benefit is a monthly benefit for dependent children of a deceased contributor. Dependent children are those under 18, or between the ages of 18 and 25 who are still attending school or university full-time.

    In order to receive CPP benefits, you must apply for them. Find out more about these benefits and who qualifies for them.