When Someone Dies
A Guide for the Family Caregiver

Contents:

bulletCaring for Your Loved One
bulletThe Dying Person's Wishes: Getting Personal Affairs in Order
bulletHome & Hospice Care
bulletThe Physical Stages of Dying
bulletSpending Time with The Body of Your Loved One
bulletDeath Certificates
bulletBurial and Cremation
bulletAppendix: Wills & Living Trusts

Caring for Your Loved One

The death of someone close is a life-changing experience. If you are the primary caregiver of someone you love, this experience affects every aspect of your life. Preparing yourself by planning ahead will help to ease some of the difficulties associated with this passage.

You may find yourself thrust into a role that may be too much for you alone. Consider what you can and cannot do. Find out what other friends and family members can do and what community resources have to offer. Ask for help. Your hospice staff or hospital social worker will be able to help you.

Taking care of ourselves is the first thing we neglect when we are deeply affected by losing someone we love. One aspect of planning ahead is taking a personal inventory of our own thoughts and feelings. This is as important as the practical concerns attached to home nursing, hospice care, legal papers, or insurance coverage. It might be helpful to ask yourself the following questions:

bulletIs there anything special you want to say or do with your loved one while there is still time?
bulletCan you take the time out of your daily commitments to spend time with your loved one? How much time?
bulletWill you have someone to talk to about your own feelings?
bulletWill someone else be available to sit with the dying person?
bulletWill you take time away from practical caregiving and let others help out? Will you ask for help when you need it?
bulletAre there certain things you are sure you do not want to do? Make a list and delegate these tasks to others.
bulletHow do you handle special crises? Can you make a commitment to take care of yourself while you take care of your loved one?
bulletWill you still do the special things that have always renewed and nurtured you?
bulletHow will you say goodbye?

The dying process can take minutes or several days. If you are exhausted, you may become especially vulnerable to illness and prone to accidents. Your ability to be effective as a caregiver depends on your being rested, alert, responsive and sensitive to your own and others’ needs. You might take time now to consider what forms of emotional support and physical care you will need. So many of us tend to overindulge or deny ourselves specific comforts when we are in emotional pain.


Do you tend to overeat under stress or do you stop eating? Do you drink? How often? Do you chain-smoke? Do you get enough sleep? Eating a balanced diet, getting adequate sleep and exercise are even more important at this time. Make sure you are eating three meals a day.

Take time to go for walks or get to the gym. Find moments of solitude. Try listening to music. Talk with your pastor or other spiritual counselor. There are therapists and volunteers who provide grief counseling before and after a death.

Being with someone who is dying can be surreal. Time and the matters of everyday living are suspended. Every moment becomes a precious opportunity to be with someone you will never see again.

Taking some time to plan ahead will help put your mind at ease. This will help you be more ‘available’ when death is close.

 



The Dying Person’s Wishes: Getting Personal Affairs in Order

Here is a list of concerns that need to be discussed with your loved one. If he or she is no longer conscious, call together the significant members of the family to find out important information and to make decisions together.

bulletHas a will been drawn up? If it is an old one, has it been updated?
bulletWhere are important documents stored?
bulletHas someone been chosen to hold the Financial Power of Attorney?
bulletHas someone been taking care of bills and other important mail?
bulletIs there a Living Will, a Directive to Physicians or a Medical Durable Power of Attorney? Does the doctor have a copy of this form?
bulletWill he or she die at home or in the hospital? Is there a copy of the insurance policy available to see what type of care is covered?
bulletDoes he want to be buried or cremated? Has a memorial service been thought of? Does he want special things said or done at his funeral?
bulletWho does she want at her bedside while she is ill or dying?
bulletAre there special individuals - friends or family members who live far away - who should be called?
bulletWho are the important people who should be called in an emergency or at the time of death?
bulletAre there any special requests or special days coming up, like birthdays or anniversaries, that should be observed?

Home and Hospice Care

Since many of the concerns that face people who will die at home are handled differently in the hospital, this section will look at the prospect of someone dying at home. Even though many people remain hospitalized for much of their illness, more and more people are choosing to die at home for personal as well as financial reasons.


Home care for the terminally ill will become an all-absorbing set of tasks and responsibilities for the primary caregiver and the family. Most people turn to a hospice program for help. This may be their community hospice, the hospice program connected to the hospital they have been using, a home health care agency, or the local Visiting Nurses Association.


‘Hospice’ is a concept of care. The two primary goals are to provide comfort and emotional support to the dying and their families. Most often, a terminally ill patient must have six months or less to live, unable to benefit from further treatment and be ready to die. This means that the dying person does not want to be resuscitated or be kept alive using any artificial means of life support. There must also be a primary caregiver at home who will assume responsibility for the patient, especially if he or she becomes unable to speak for him or herself.


Hospice programs regard dying as a natural process. The control of pain and distressing symptoms are the goal of all treatment. Both the patient and their families are seen as being in need of care provided by a number of different people. This may include a home health aide, a registered nurse, an emotional support volunteer, a doctor, physical therapist, a social worker and psychological counselor. Hospice professionals and volunteers do provide invaluable support to the family and the person who is dying at home.


Some large communities have established an AIDS-specific hospice program. Your social worker at your local AIDS agency will be able to refer you to this program, if it is available in your area.

Paying for Care
Hospice care costs can usually be covered through private insurance, Medicare and Medicaid. Medicare will cover all of the costs of hospice care if you use a Medicare-certified hospice program. Medicaid will cover all of the costs of a physician’s care, skilled nursing, medical supplies, equipment, and prescriptions after the annual deductible is met. If you have private insurance, check your summary plan booklet to see if hospice care is covered.

The National Hospice Association (check out www.hospicenet.org) will refer you to programs in your area and will answer questions about hospice care. If the dying person is a child, you may want to contact Children’s Hospice International at 1-800-24-CHILD.

Physical Stages of Dying

Sometimes it is helpful to know what to expect as someone is actually about to die. Some people may find this type of information distressing. If you find it upsetting, you may want to skip this section.


The person will usually become more sleepy or groggy, or may even become comatose until the moment of death. Sometimes the person ‘comes to’ for a few moments but is confused and restless. He may be experiencing visions or say a few things that do not make sense.


As death gets closer, the underside of the body will become darker as the circulation slows. His limbs will become cool to the touch. His breathing will become more irregular with long spaces between breaths. He may become incontinent. You may hear the ‘death rattle’ which is a gurgling sound that is caused by fluids collecting in the back of the throat

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The ability to hear is the last sense to go. Feel free to talk to your loved one even though he or she may be in a coma. Speak reassuringly and calmly. Always assume that what you say will be heard. Have talks with your doctor and other family members outside the dying person’s room.

There are things you can do to help keep your loved one more Here are some things you can do to make your loved one more comfortable:

bulletKeep warm blankets on hand. Use as many as necessary to keep your loved one warm. Do not use electric blankets.
bulletAsk your hospice nurse for pads to place underneath your loved one if he or she becomes incontinent.
bulletYou can use a cool mist humidifier to add moisture to the room when fluids build up in he back of the throat. Keep his or her head elevated to make breathing easier.
bulletYou can offer ice chips or a wet washcloth dabbed on the lips to relieve dry, chapped lips.
bulletIf your loved one becomes unable to see, you can keep additional lights on.
bulletIf your loved one starts to produce less urine, tell your hospice nurse so he or she can check for abdominal distention (a swollen belly) or other problems.

At the final moment of death, breathing stops. There is no heartbeat or pulse. The eyes are fixed. The mouth may drop open because the jaw has relaxed. The bowel and bladder may empty. Fluid may come from the mouth.

Your hospice staff can help you with your questions and other forms of assistance to help you take care of your loved one, such as applying for government benefits, receiving volunteer help, and other social services in your community.


Spending Time with The Body of Your Loved One

For some, the time right after the loved one’s passing is a time of reflection, remembrance, and final goodbyes. For the family caregiver, this may be the last time you are alone with your loved one.


Think about how much time you want to spend with the body once your loved one is gone. Different events take place when someone dies in a hospital or at home. Some people leave hospital care in order to die in the comfort, privacy, and intimacy of their own home and family.


You might want to gather friends and family together to discuss what will happen right after your loved one’s death. Some people want to clean and groom the body themselves, taking time to anoint the body with fragrant oil or rosewater.

Some people use this time for personal rituals, prayers, burning incense, or lighting cnadles. You may want special music. Some people want personal notes, a gift, or religious object buried with their loved one.


When your loved one has died, call your hospice nurse. He or she will notify the attending physician who will pronounce death and notify the coroner.

The hospice nurse will come over to provide emotional support for the family and dispose of any pain medication and other drugs. Your hospice nurse will clean the body unless the family would rather do this themselves.

If your loved one has died in a hospital, any staff physician can pronounce death. If you are not present when your loved one dies, the staff nurse will call you so you can spend time with the body. You can collect your loved one’s belongings at this time.


You can let the hospital know how much time you will want with the body after death. Most hospitals try to accommodate your wishes. Ask about the hospital’s policy ahead of time so you don’t have emotional upsets at a time when you can least handle them. Let the hospital know where you want the body taken. Many large hospitals can hold the body for a day or two if arrangements still need to be made for burial or cremation.

Death Certificates

The death certificate reports the cause of death and helps settle the legal and financial affairs of the deceased. You will need one to claim many death benefits, close bank accounts, and file tax returns.

The doctor must sign the death certificate, stating the date and cause of death. The funeral director will get this certificate and add additional information. He or she will then file it with the county health department.

Have several copies made as you will need to file copies of the certiificate with the IRS, the insurance company, the bank, the Veterans Administration, your Social Ssecuirty office, and any creditors.

These copies are official certified copies, not photocopies. Order as many as you think you will need and then add two or three to your list. Your funeral director will obtain these copies for you. You can also ask an attorney to do this or do it yourself. Order them from the county clerk's office or your local department of public health.

Burial and Cremation

There are several choices available for disposal of the body. The following list begins with the less expensive option and concludes with the most expensive.

bulletCremation (also called direct disposition), followed by a memorial service. There may also be a commitment service at the crematorium, if you request it.
bulletEarth burial (also called direct disposition), followed by a memorial service. You can also have a graveside commitment service.
bulletA funeral service with the body present in an open or closed casket, followed by cremation.
bulletA funeral service with the body prsent in an open or closed casket, followed by earth burial.

Direct disposition firms provide immediate burial or cremation services. There is no embalming, viewing, or other aspects of the conventional funeral service. They transfer the body from the place of death directly to the place of burial or cremation. They also file the death certificate and cremation permit for you.

Many disposition firms are membership organizations like the Neptune Society or the Telophase Society. Costs for services at the time of death usually range from $200 to $1,000.

Memorial societies are membership organizations which are also nonprofit consusmer groups. They provide advice on how best to deal with the disposition of a body in your area. They compare prices and services to determine the most economical means of dealing with disposition and memorial services. Some groups have negotiated membership discounts and other benefits with local funeral directors.

Funeral homes (or mortuaries) are for-profit businesses that are licensed to provide everything from direct disposition to a complete funeral ceremony, including a casket, procession, and interment. Costs can range anywhere from about $2,000 to $10,000.

Some large cities provide simple burial services for people who have no funds. If you need this service, call your local department of public health and ask about indigent burial services.

Appendix

Wills & Living Trusts

Thinking about things like a will may stir up uncomfortable feelings at first. It will give you more peace of mind once it is done because it puts you in charge. You get to decide what happens to the things that have been important to you.


A will lets people know what you want to do with everything you own at the time of your death. Depending on how much property you own, you may be able to write your own will or you may have to work with a lawyer so that your wishes will be followed exactly.


You can use a will to decide who will receive your possessions, how any cash you leave will be used, who will take care of your pet, who will become your child’s legal guardian, and how your funeral, cremation or memorial service will be done.


If you do not have a will, the courts will step in to decide, according to state laws, who will receive what. If you have a lover or are not legally married, other members of your family may step in to claim things you may have wanted to leave to your lover. Having a will ensures that what you want to have happen will happen.


Every will must be witnessed by at least two people over 18 who can state that you knew what you were doing when you made out your will. The person you leave things to is called a beneficiary. The person you leave in charge of carrying out your will is called an executor. Your local Bar Association can refer you to a lawyer to help you with making out a will or setting up a living trust. You can also check out the self-help books published by Nolo Press at www.nolo.org.

A living trust protects all your assets from probate costs at the time of your death. Probate is a court procedure that all estates worth more than $60,000 must go through. If you do not own a home or a business, or have a great deal of cash or stocks and bonds worth more than $60,000, you probably do not have to worry about probate costs. But if you do own property, or have children whose inheritance you wish to protect from probate costs, you might want to talk to a lawyer about setting up a living trust.

Copyright 2006-2011 Fawn Moran

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