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Washington State has a system to link people with HIV infection
and AIDS to care services. Case managers in the HIV/AIDS Programs,
which can usually be found by contacting the local health
department or health district, are the primary contact people
for services. HIV infected, or affected persons can be linked
with
- medical care,
- insurance programs,
- volunteer groups,
- hospice, and
- other types of care that may be needed during the course
of a person, or family's, time of living with HIV.
To find a case manager, contact the HIV/AIDS Program in your
county's health department or district, or call the Washington
State DOH at 1.877.376.9316.
Persons with HIV and their families and friends face a multitude
of difficult realities:
- Even with the advent of antiretroviral drugs, persons
with AIDS still die prematurely.
- Men who have sex with men, and injection drug users, who
may already be stigmatized and subjected to social and job-related
discrimination, may encounter even more societal pressure
and stress with a diagnosis of HIV or AIDS.
- 90% of all adults with AIDS are in the prime of life and
may not be prepared to deal with death and dying.
- The infections and malignancies that accompany AIDS along
with some of the medications, can diminish and disfigure
the body.
- People who are living with HIV face the need to practice
"safer sex" and take medications for the remainder of their
lives.
The emotional response to learning that one is HIV positive
can range from relief to devastation; from acceptance of a
chronic illness, to fear of a death sentence.
One thing that characterizes the grief around AIDS is the
repetition of deaths that one person may experience. Many
people working with or living with AIDS for years have gone
to countless funerals and have seen a succession of their
friends pass away. This is sometimes termed "chronic grief."
Chronic grief intensifies when one realizes that, before the
grieving process for one death is complete, many more people
may have died.
The idea of "cumulative" multiple loss or grief saturation
is not new. The emotions felt by long-term survivors of HIV
and the HIV-negative friends and families are similar to the
emotions of the survivors of the Holocaust, survivors of natural
disasters (earthquakes, tornadoes, etc.), and to battle fatigue
described by soldiers.
HIV often produces many losses:
- Loss of physical strength and abilities
- Loss of mental abilities/confusion
- Loss of income and savings
- Loss of health insurance
- Loss of job/work
- Loss of housing, personal possessions, including pets
- Loss of emotional support from family, friends, co-workers,
religious and social institutions
- Loss of self-sufficiency and privacy
- Loss of social contacts/roles
- Loss of self esteem
People who are experiencing multiple losses may not have
enough time to work through the grief process for each person.
People experiencing multiple losses may feel:
- Guilt
- Grief
- Helplessness
- Rage
- Numbness
The physical weakness and pain can diminish the person's
ability to cope with psychological and social stresses.
Infection with HIV can cause distress for those who have
HIV, for those who are their caregivers, family, lovers and
friends. Grief can manifest itself in physical symptoms, including
clinical depression, hypochondria, anxiety, insomnia, and
the inability to get pleasure from normal daily activities.
Dealing with these issues may lead to self-destructive behaviors,
such as alcohol or drug abuse.
Disbelief, numbness, and inability to face facts occur for
some. The "fear of the unknown," the onset of infections,
swollen lymph nodes, or loss of weight (or unusual weight
gain) can be accompanied by fear of developing AIDS, or of
getting sicker.
Rejection by family, friends, and co-workers is often experienced.
In some cases, guilt develops about the disease, about past
behaviors, or about the possibility of having unwittingly
infected someone else.
People living with HIV may feel as though their "normal"
lives have completely ended, as they must plan detailed medication
schedules and medical appointments. The cost of the medications
for HIV may result in financial hardship, even if the person
has medical coverage. Call the Washington State DOH at 1.877.376.9316
if you or someone you know needs help paying for HIV care
and medications.
Sadness, hopelessness, helplessness, withdrawal, and isolation
are often present. Anger is common: at the virus, at the effects
of the medications, or the failure of some of the medications,
at the prospect of illness or death, and at the discrimination
that can often be encountered.
Some people with HIV consider suicide, some attempt suicide,
and some may kill themselves. Call your local Crisis Line
listed in your phone book, or call the National Suicide hotline
at 1.800.784.2433 or 1.800.273.8255.
Often feelings experienced by the caregiver will mirror those
of the patient, such as a sense of vulnerability and helplessness.
Caregivers may experience the same isolation as the person
with HIV infection. Finding a support system, including a
qualified counselor, can be just as important for the caregiver
as for the person who has HIV disease. Support from co-workers
can be especially important.
Grief has been described in a variety of forms. It may be
best understood as a process that doesn't involve a straight
line. People do not move predictably step-by-step through
the various stages of their grieving, but progress at their
own speed. There seem to be discreet phases of grief, including:
- Shock and numbing
- Yearning and searching
- Disorganization and despair
- Some degree of reorganization
The length of time it takes to move between these stages
is determined by the individual, his or her values and cultural
norms. In uncomplicated grief, an individual is able
to move through these stages and come out of the grieving
process.
Complicated grief is described as an exaggeration
or distortion of the normal process of grieving. People experiencing
multiple losses are more at risk for complications. If an
individual has been impacted by multiple deaths, it may be
difficult for them to reorganize or "move on" with the process.
Caregiver Issues
Caregiving can be a multifaceted positive experience for
the caregiver. However, caregiving requires a great deal of
energy and effort in the face of significant challenges. Caregivers
often benefit from acknowledging their own experiences and
feelings when dealing with all aspects of this infection.
Good self-care for the caregiver is important.
DO meet with a support person, group, or counselor
on a regular basis to discuss your experiences and feelings.
DO set limits in care-giving time and responsibility,
and stick to those limits.
DO allow yourself to have questions. Let "not knowing"
be okay.
DO get the information and support you deserve and
need.
DO discuss with your employer strategies of performing
your job in ways that reduce stress and burnout.
DO remember that UNIVERSAL and STANDARD PRECAUTIONS
are for the patient's health and welfare, as well as your
own.
DON'T isolate yourself.
DON'T try to be all things to all people.
DON'T expect to have all the answers.
DON'T deny your own fears about AIDS or dying.
DON'T continue to work in an area where you "can't
cope."
DON'T dismiss UNIVERSAL AND STANDARD PRECAUTIONS
because you "know" the patient.
There are other issues for people who share a home with,
or provide home care for persons with HIV or AIDS. Please
refer back to the section on Transmission and Infection Control
for more information.
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Case Study
#6
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Mary had a friend who died from AIDS when she was
in college, and decided then that she wanted to work
in that field when she graduated as a nurse. Her first
position was on the HIV ward, a area that had a large
turnover of staff. After several years she decided
to try a new position as a visiting nurse on the HIV
team. She liked the flexibility of her position, but
soon realized that seeing patients several times a
week in their home was much different than caring
for them in the hospital. She met spouses/partners
and families. She thought nothing of stopping to pick
up something she knew George, who was very wasted,
would like at the grocery store, lending a new movie
to John who had recently fallen and fractured his
hip so wasn't able to get around, or making a copy
of relaxing music for Fred, the perpetual insomniac.
When possible, she would take a couple of extra minutes
at the end of her day to read to Josh, a young man
who lost his eye sight to CMV. Everything about the
new position led to a sense of intimacy with her patients.
When each died she attended the funeral.
After several years in the field Mary noticed that
she often felt tired. She did not seem to see many
of her old friends as often, and in the evening went
straight home, had a late supper and spent an hour
flicking through channels on the television without
really watching anything special. She noticed that
she started to dread going to the home of patients
who were getting close to death. Co-workers noticed
the change in her work habits and were concerned that
she was burned out. Her supervisor suggested she attend
a support group for HIV staff, and take some time
off for a vacation. After several months in the group
she realized that she was suffering from "cumulative
loss." She was eventually able to make changes in
her practice that allowed her to still provide good
care for her patients while keeping a safe space between
her job and her personal life. She planned outings
with old friends, and decided to take art classes
at a local community college in the evening. By learning
to take care of herself and set limits for her job,
she was able to remain active in a field that she
loved.
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