There’s no avoiding the fact that we can’t live forever. Although it may be hard to think about having to plan for the end of your life, it’s better to endure the uncomfortable moments way in advance, while these decisions are still yours to make. The reality is, it may not just be about you; when you see it from the perspective of easing some of the stress of the end of your life for both you and your loved ones, it might be easier to talk about your options, and set a plan in motion for when that time does come.
Many people don’t take the time to think about their own deaths. That is often not the case for people living with HIV. For long-term survivors who were diagnosed at the height of the epidemic in the 1980s and early ’90s, death was a reality that was perceived to be imminent.
“When I first tested positive in 1986, I was told that I had only two years left to live,” said Tez Anderson, 57, a champion for long-term survivors. “Soon after getting that news, one of the first things I did was make out a living trust, a will, and a power of attorney, so that I could make the arrangements myself.
“My generation understood the importance of these documents, because for the people left behind, it makes all the difference,” he said. “[We’ve] been preparing for years to die; and although some might be in denial about it, for those of us who saw our friends dying left and right during the crisis, we learned the importance of being prepared.”
Kit Kloeckl, 66, was diagnosed with HIV at age 55; his moment of realization came when he was already in the hospital. “In 2005, I became very ill with pneumocystis pneumonia,” he explained. “I had been with my partner for a year, but had not put any protections in place to take care of him should I pass away.”
At the hospital, Kloeckl attempted to handwrite a will, since his family members were not supportive of his relationship. He was too sick to be able to do so. Fortunately, he recovered; afterward, he consulted with a professional trust attorney to guarantee that his partner would be taken care of if he were to become ill again.
“It’s critical to have something in place to ensure your wishes will be carried out, and not be sabotaged by family,” Kloeckl said.
Meeting with a professional can be a great step in making end-of-life decisions. There are also many things you can do on your own, simply by creating some documents and signing them in front of a witness.
Another step is to gather your thoughts and consider your feelings and options regarding:
Creating a will: What property will you leave behind; who do you want it left to; and who will execute your will so that your wishes are met?
Creating an advance directive: What kind of health care do you want, or not want, when you cannot make your own decisions? Who should you choose as your health care proxy to make sure your desires are respected? What are the guidelines for your state?
Eldercare: Where and how do you want to be taken care of, in the event you are
not able to make those choices when the time comes?
Powers of attorney: Who, if anyone, do you want to empower to make legal, financial, or health care decisions on your behalf if you cannot?
Life insurance policies or establishing trusts: Who will be your beneficiary?
Funeral wishes: Do you want a somber gathering? A joyful party? A low-tech “green burial”? How would you like to be honored—and how will it all be paid for?
Organizations like the American Association of Retired Persons (AARP) and the American Geriatrics Society’s Health in Aging Foundation maintain a wide range of online resources and printable forms to help guide and organize the process of making these important plans. Many HIV and LGBT organizations also provide free legal clinics or can refer you to pro bono or reduced fee services in your area.
Anderson stressed that if you do have all your documents in order, it’s important to review them every few years and make sure they are up to date. “Once you accept that death is a part of life, it makes it all a little bit easier,” he said; “and really, being prepared is an act of love for the people you are leaving behind.”
Although there will come a day when each of us will reach the end of our life, for those living with HIV, that day is likely much farther in the future than they might have expected. There is now time and space to be thoughtful and proactive, instead of anxious and panicked, about these decisions.
Whether you are a person living with HIV or a person just living, making plans for the end of our lives helps ensure that, when our time does come, those we love won’t be additionally burdened—and will know how to give us exactly the send-off we want.
David Durán is an LGBT-focused freelance journalist who contributes to such publications as The Advocate, Instinct, OUT, POSITIVELY AWARE, and The Huffington Post.