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Final Arrangements
A person with AIDS, like every other adult, should have a will. This can be a difficult subject to discuss, but a will may need to be written before there is any question of the mental competence of the person with AIDS. You may want to be sure the person you are caring for has a will and that you know where it is.
Living wills, which specify what medical care the person with AIDS wants or does not want, also have to be written before their mental competence could be questioned. You, as the caregiver, may be the person asked to see that the doctors follow the wishes of the person with AIDS. This can be a very hard experience to deal with, but is another way of showing respect for a dying person. You may want to be sure the person you are caring for knows that they can control their medical care through living wills.
Often, people who know that they will die soon choose to make their own funeral or memorial arrangements. This helps make sure that the funeral will be done the way they want it done. It also makes things easier for those left behind. They no longer have to guess what their friend or loved one would have wanted. You may be asked to help the person with AIDS plan the funeral, make arrangements with the funeral home, and select a cemetery plot or mausoleum. You may be able to help the person with AIDS decide how they wish to be buried or if they want to be cremated.
After the death, there will still be things to do. Programs that have been providing help, such as Supplemental Security Income, will have to be officially informed of the death. Some money already sent or received may have to be returned. The will may name you, a relative, or another person as the one to handle these tasks.
Dying at Home:
Whether or not to die at home is a big decision, but it may not
have to be made right away. As the health of the person with
AIDS changes, you and they may change your minds several
times. However, it is something you should talk about with the
person with AIDS ahead of time. Plans should be made; legal
papers may need to be signed. What the dying person wants and
needs, the needs and abilities of the caregivers and other loved
ones, the advice of the doctors and other medical professionals,
the advice of clergy or other spiritual leaders, may all need to be
considered in deciding what is best. Consideration must be given
to everyone living in the home. Small children and others may
not be ready to cope with death in their home. Others in the
home may prefer to face the final moments of the person with
AIDS in familiar surroundings. Just be sure the person with AIDS
knows that they will not die alone, that the people they love will
try to be with them, wherever they choose to die. You also
should get help to deal with your own grief after the death.
Help For You:
Taking care of someone who is very sick is hard. It wears you
down physically and emotionally and creates stress. You can get
very angry watching a person you love get sicker and sicker no
matter how hard you work or how much you care. You have to
do something with this anger. Many people can talk out their
anger with other people who have the same problems or with
counselors, ministers, rabbis, friends, family, health workers.
Many AIDS service organizations can help you find people to talk
to.
You should not try to be the only person taking care of someone with AIDS. You need some time for yourself. The sicker the person you are taking care of becomes, the more important this is. If you try to do everything yourself, you will wear yourself out and not be able to go on. You are not alone. Other people have done this before. Learn from them, Call the places listed in the following section for help.
Places to Call for Help:
Call the CDC National AIDS Hotline for answers to questions about
HIV infection or AIDS, materials on sex and AIDS, or referrals to
local organizations in your community. One of the referrals you
should ask for is the telephone number of your local Red Cross
chapter. The telephone number of the Hotline is 1-800-342-AIDS
(1-800-342-2437). If you want to speak in Spanish, call 1-800-
344-7432. If you have hearing problems and have a TTY
machine, call 1-800-243-7889.
The CDC National AIDS Clearinghouse can provide materials about HIV and AIDS. The Clearinghouse can also check computer records for organizations in your area dealing with AIDS or materials about HIV or AIDS from health departments, the American Red Cross, or other community-based organizations. The telephone number is 1-800-458-5231. The international number is 00-301-217-0023. The fax number is 1-301-738- 6616.
The National HIV/AIDS Treatment Service can answer questions about treatments for AIDS and diseases linked to AIDS. The telephone number in the United States and Canada is 1-800- 448-0440. The international number is 00-301-217-0023. To send a fax, dial 1-301-738-666. If you have a hearing problem and have a TTY machine, call 1-800-243-7012.
The AIDS Clinical Trials Information Service can provide information about current trials of new drug for AIDS or diseases linked to AIDS. The telephone number is 1-800-TRIALS-A (1- 800-874-2572).
The National Association of People With AIDS (NAPWA) is an association of people who have HIV infection or AIDS. To contact them, call 1-202-898-0414.
Your local phone book should have listings for the local American Red Cross chapter, nursing homes, hospice organizations, the state and local health departments, local HIV or AIDS service organizations, and local medical organizations or referral agencies.
Your local American Red Cross chapter may have special programs on HIV infection and AIDS for African-Americans, Hispanics, and managers and workers on the job. Some Red Cross chapters may offer other training or help with transportation. Both the CDC National AIDS Clearinghouse and the American Red Cross can provide brochures and other materials about HIV and AIDS intended for women, young people, parents, teachers, and those at high risk for or infected with HIV.
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