I am a 60 year old, gay man who has been aging alongside HIV/AIDS for my entire adult life.
I have the memory of coming out in a small New Hampshire town in the early 1970s, when there was a world without HIV/AIDS, if you can imagine a time such as that. During the 1980s, AIDS became front and center in my world, as dozens of friends from those carefree days of the 1970s, who had previously moved to New York, San Francisco and other metropolitan cities, returned home to our rural New Hampshire town to die; and, sadly, acknowledging that there were countless others who never made it home to die or whose families did not to welcome them back for their final days. 1993 became the defining year that brought AIDS intimately to my door when my partner, Gil, was diagnosed with AIDS and later died in 1996.
This was the turning point in my life when I became an advocate for hospice care, with a focus on addressing the physical, psychosocial, and spiritual domains of folks diagnosed with a terminal illness. Since 1996 and the introduction of life-prolonging HIV medications, I have seen a dramatic change in the face of HIV/AIDS with a decrease in mortalities, but continuing incidences in the disease (despite over three decades of advocacy and prevention education by members of my generation). Now, in the 2010s, we have a cohort of individuals who are living and aging with HIV and who seek support with the additional comorbidities of natural aging: chronic inflammation, memory loss, osteoporosis, cardiac disease, liver disease, cancer, diabetes, high blood pressure, and high cholesterol. Addressing these comorbidities of aging is just one of my roles as the RN Medical Case Manager at AIDS Services of Austin, in addition to supporting adherence with medications and linkage to primary care.
On May 2nd, I will be one of four presenters at the 2014 HIV/AIDS and Aging Symposium, sponsored by HAAC, the HIV/AIDS Aging Coalition. The title of my presentation is Aging Alongside HIV/AIDS: From a Caregiver’s View. I became Gil’s personal caregiver in 1996 out of necessity and love; and I have since become a professional caregiver, out of choice, for those living with HIV and other illnesses. As clinicians or case managers, it is imperative that we have conversations with our HIV clients about Advance Directives and Ethical Wills, as we should be having these difficult conversations with ourselves and with everyone, regardless of the diagnosis. It is so important to document our health care decisions and legacy sharing in advance, prior to a day when we may not be able to voice them for ourselves. My symposium presentation will allow the participants to explore their personal feelings about end of life care issues, so that they then may have meaningful conversations with their clients. Another focus of my presentation is encouraging our clients to document their life stories as a means to normalize HIV disease and reduce its associated stigma. To illustrate this, I will be reading from my memoir/self help book, Reflections of a Loving Partner: Caregiving at the End of Life, as an example of the power of documenting life stories.
I hope that you will join me and the other distinguished presenters at the 2014 HIV/AIDS and Aging Symposium. For more information, go to: http://hivandaging.wordpress.com/