Aging with HIV. I didn't believe I could. Good…
I have already faced two fatal diagnoses. The first to come out of the box was HIV, in those challenging pre-treatment days.
Now, many years later, I need open-heart surgery for something called aortic stenosis, or I will die. Think about replacing the heart valve; the operation is waiting for an appointment. I'm coping well. Wish me luck!
Aging with HIV and Facing the Old Lady
I have lived with HIV since 1993. Almost 30 years later and already in my 70s, I am thinking about what the HIV community has to offer. I cannot be alone in this.
The population at the forefront of the epidemic in those early years is growing in size, along with others. Many of us are not just getting older, we are growing old with all that it entails. Slow, moody and with more and more comorbidities. That describes me, at least.
It is bringing back memories. I remember an early interaction with the community, perhaps my first encounter with a room full of people with HIV. It was a regional conference, a series of workshops and opportunities to live with our relatives. I found a family. The first session on the agenda, however, was on palliative care. Treated with compassion, but in fact. I remember asking if the hospice settings allowed your dog to stay with you when you die. (The answer was yes. I was happy with that.) We went on to talk about proxies and wills in life as well. After all, it seemed like a natural matter. We were all facing death then.
Later, I was a regular speaker at our local hospital, talking to nurses in training about palliative care for people with HIV. Over time, the topic became less relevant, so we talked about caring for people with HIV more generally. So that work has also decreased. People living with HIV most often respond well to treatment and lead normal lives. Nobody talked much about being old, but about dying alone. Conversations were always, always about life.
Now we die - and we are dying in more numbers than ever because our contingent of aging has increased - we do not die as a result of HIV infection, but as a result of other causes, most of the time comorbidities such as diabetes, cardiovascular and respiratory diseases.
We no longer talk about palliative care, not even in the elderly or the sick. The response to HIV is no longer aimed at those approaching the end of their lives. Conversations about HIV and aging are, in fact, often dominated by middle-aged people with totally different concerns for people like me.
Where are our elderly people?
Should our elders be better served? I think so, but there are challenges to assist the elderly. We are practically invisible, except for the general health system, for which we tend to be high-volume users. We retire, we get sick, we no longer visit HIV service providers. The defenders of our cohort are silent. There is no wheel that creaks and few services recognize our precarious existence and our declining quality of life. As for discussions about the end of life, I hardly hear the words “palliative care” murmured for decades.
But here's the problem: the elderly need HIV-related services? If so, what are they?
The questions remain largely unanswered, at least at the local level. Organizations like The World Health Organization says HIV-related palliative care is important.
“Palliative care is an essential component of a comprehensive care package for people living with HIV / AIDS,” they say, “due to the variety of symptoms they may experience - such as pain, diarrhea, cough, shortness of breath, nausea. , weakness, fatigue, fever and confusion. Palliative care is an important means of relieving symptoms that result in undue suffering and frequent visits to the hospital or clinic. The lack of palliative care results in untreated symptoms that hinder the individual's ability to continue their activities of daily living. At the community level, the lack of palliative care unnecessarily stresses the resources of the hospital or clinic. "
So why do International AIDS Conferences largely ignore the issues of aging, but in isolation, the issues of our older people living with HIV?
Talking to our feet
I don't want to focus on palliative care, however. The question is: does the elderly living with HIV have special needs that service providers need to meet, whether they are housing, home visits, food, workshops and various forms of practical assistance peculiar to the elderly? Or are HIV-related service providers irrelevant to the elderly? Have we talked to our feet? I haven't been in the door of my local AIDS care organization in years, for example. But then I am privileged. I am a partner and I am someone who handles adversity very well. Others are none of those things.
The reality is that many elderly people living with HIV are marginalized and live without the kind of domestic and community support that we consider natural. Kate Murzin says Realize, the Canadian agency with an agenda that includes issues of HIV and aging, “Several of my own colleagues and friends who are older people living with HIV have had health crises in the past few months that took them to a hospital, increased their contact with the health system, or simply interrupted their lives.
Fortunately, they had support - emotional, practical or both - from their families or partners, but my latest research project, PANACHE Ontario, confirmed that many older people living with HIV do not have this. These situations remind me that we are reaching a critical point in the HIV community. We have to act now to ensure that formal support is available to older people and those with fewer resources, because they may be needed at any time. "
Prejudice against the Elderly
Kate says the recent events were illustrative. “The COVID-19 pandemic revealed the trend of age prejudice that persists in our society. I like to think that it has also created an opportunity, as more people are talking openly about the problems that plague our care systems for the elderly. From the standpoint of advocacy, more voices are more likely to affect change. "
It is not that some service providers are not responding fully. Realize is exploring Advanced Care Planning. These are the keywords that describe "a time for you to reflect on your values and desires and to let people know what kind of health and personal care you would like to have in the future, if you could not speak for yourself". In addition, a handful of organizations in Canada, such as ACT and others conducted workshops addressing similar needs. But if there is a desire to do more, the elderly living with HIV need to speak up.
So what about the future? As we move towards more holistic standards of care, where HIV services are more integrated with those of other health care providers and community services, HIV agencies likely have a place. We need frank discussions about what this place looks like. Not just a presence at our funerals and life celebrations, but in the months and years that preceded them. After all, we are a family.