You think you've heard it all. Well, you haven't.
Media and most "mainstream" AIDS patient advocacy groups’ attention focus on the HIV positive population--mortality, morbidity, infection rates, vaccines and homosexuality.
But there is another struggling population in bondage to this almost 30-year-long epidemic: a grossly underserved, mostly neglected and often suffering population that is actually larger in numbers and much more diverse than the HIV and AIDS population itself.
We’re talking about the HIV negative at home caregiver; and it is a story that is mostly untold and a population that is almost entirely ignored. But it is a population of men, women and children, families, parents, grandparents, spouses and friends who are living in perpetual secrecy, fear, anxiety and financial chaos.
These are the HIV negative family members, partners and friends who struggle with far more than any other kind of caregiver of any other kind of patient.
Tragically, even though the epidemic has been known for over a quarter century, stigma and fear remain a major hindrance to education, prevention, treatment and care giving--but caregiving is the most burdened.
Like many of the long-term spouses of a gay man or woman just coming out, the AIDS patient caregiver is ill-prepared for the homophobia, the prejudice, the contempt and the cruelty that most AIDS patients come to expect—oftentimes long before infection even becomes known. It goes with the terrritory.
HIV caregiving is unusually challenging and complex for the parent, sibling, friend or even child who has to deal with neighbors, extended families, health care providers, social workers, pharmacy clerks, housekeepers, home health care aides, employers—to name but a few situations.
Beyond the normal challenges of care giving, the stigma of HIV and AIDS contributes to an inordinate incidence of depression and stress among caregivers. And while little has been done to address this problem, it is nonetheless well-document and too often seen among mental health professionals.
In many cases the problem is crippling to the degree of failed care giving, families simply falling apart at the seams and treatment plans falling between the cracks.
Today, many AIDS patients die or end up homeless simply because of a failed home care-giving dynamic. And who can blame the caregiver? Ordinary men and women more abandoned and sidelined by our society and the health care system than the AIDS patients themselves.
It's also worth nothing that New York City's largest (by far) health care organization serving the HIV/AIDS patient population reports that in 2009 over 40% of the organization’s HIV/AIDS population is 55 years and older--over 10% are 65 and older and an increasing number of patients are moving into the 70s and even 80s.
And in this older population, care giving needs become even more complex--demanding and time intensive with the onset of the customary health issues of aging piled on top of the HIV/AIDS issues. And who is caring for the caregiver? Almost no one.
Ironically, the special needs and challenges of HIV/AIDS caregivers is well understood by both mental health professionals and AIDS professionals; and yet there is a tragic paucity of educational materials, support programs and care giving for the caregivers.
Furthermore, ask any informed clinician and he or she will tell you that a failed or dysfunctional home care giving situation for a person living with HIV/AIDS is a major risk factor for failed treatment and statistically significant highest rates of morbidity and mortality--so neglect of this issue leaves yet another gaping hole in effective care for people living with AIDS.
I spoke with several experts and came up with this list of issues that routinely challenge the AIDS caregiver.
- Caregivers are mostly living in secrecy and shame, closeted so-to-speak--this takes an even worse toll among minority families.
- HIV/AIDS care giving requires candid and open discussions of drugs and sexuality--issues that many folks are ill-prepared to tackle in this Evangelical, puritanical and homophobic society.
- Fear of disclosure—telling others outside of the home.
- Misinformation about HIV/AIDS in the elderly fuels fear of contagion and the terminally ill.
- Possible guilt for not preventing child/ partner's homosexuality or drug use.
- Managing anger at the sick person.
- Positive and negative responses to going public--finding a sense of community.
- Living assertively and politically active--not dominant issues for caregivers of other illnesses.
- Caregiver’s serostatus and health needs--they are at greater risk for stress while needing greater psychological resources.
- Seriousness of patients’ illness and the amount of caregiver time and duties required by the patient for activities of daily living.
- The sense of burden on the caregiver, psychological resources required, disruption of life style of caregiver, disruption of family dynamic and relationships.
- Chronic depression
- Periods of extreme distress, grief, despair, hopelessness, and helplessness.
- Anger and anxiety may accompany depression--anger directed against the disease and the stigma.
- Loneliness and social isolation related to the stigma.
- Loneliness also associated with social isolation in giving care and the loss of mutuality and reciprocity because of functional dependence, cognitive decline, general weakness and pain.
- Sleep problems
- Care givers of younger patients may experience more anger and sleep disturbance.
Obviously this is a long and complicated list, but it comes from some of the leading experts on this issue within New York City’s professional caregiving for caregivers community.
I was recently asked what I do outside of blogging. This is one of my personal causes, one which takes much of my time. Caregiving for caregivers is grossly underfunded, mostly ignored and often trivialized.
This past weekend I spent some hours at Bailey-Holt House, established in 1986 as the nation's first congregate care facility for financially vulnerable people living with AIDS--located on Christopher Street overlooking the Christopher Street Pier.
Bailey-Holt occupies a facility that was during the 1970s a luxury hotel and rooftop restaurant called River House. At that time one of the restaurant's allures was that you could watch the shadowy figures of men cruising and having sex on the Christopher Street Pier while you dined on gourmet cuisine.
I recall dining in this restaurant several times. Someone would spot activity and diners would rush to the floor to cieling windows for a peep. No one realized at the time that we were watching the birth of one of history's most horrific public health crises.
I thought of this recently when a local public relations firm was criticized for having underwear-clad and nude models stand in windows of the new Standard Hotel in order to scandlize and shock visitors to the new High Line Park.
Press coverage was through the roof--much as it was when River House used sex on the pier to build its reputation. After three decades, little has changed. The press is still ignoring the real news and the people who so badly need their help. People are still more concerned with glimpses of naked strangers than they are with broken hearts, broken families and thousands of unnecessary deaths.
If you want to provide financial help for organizations that support HIV/AIDS caregivers, send me an email and I will provide you with the necessary information.
You can also use the PayPal link on this page. Include a notation: "Family Care Services" and I will see to it that your contribution is put to good use. I cannot directly link to the organization's website from the PAYOR site because of all those naughty photos that you make me post in order to get you to read the good stuff.
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