I’ve written some posts recently about the impact of losing clients—and even losing one’s therapist—to death, and it strikes me that despite its ubiquity in our lives, death still seems to be as taboo a subject as it ever was—even within clinical conversations.
One of my clients, who had a degenerative disease, passed away last week, and I was reminded of this afresh as I spent time with her preparing for her imminent death.
I can’t say that I’d ever specialized in dealing with death in my practice, but I was plunged right into the deep end, as my first clinical work took place against the backdrop of the AIDS epidemic. With so many of my clients and their friends and partners dying, I received a crash course on dealing with terminal illnesses and helping people prepare for death.
Dealing with a terminal illness
One of the most challenging aspects of serious, long-term illnesses is your self-perception: You’re losing your identity as a healthy person and shifting to perceiving yourself as a person with an illness. This is incredibly tricky to do, and it’s a process, not an event; the grief of accepting and incorporating illness into your identity can take a long time.
Give yourself ample time to feel whatever you’re feeling, to experience a shift in your identity. You may find yourself vacillating between being “fine” and feeling sad and preoccupied. It isn’t a linear process; it’s jumbled and painful, and yet many people come out of it realizing they can function and carry on with life where they might have assumed they couldn’t. Achieving normalcy in the midst of chaos is an important goal.
Preparation is everything
Most of us entertain fantasies, dreams, and ideas about what it will be like to be dying. It isn’t unusual for people to have fixed ideas about what they want or don’t want to prolong their life. Yet, people frequently end up changing during the process, wishing to push the bar: When they reach certain anticipated milestones, it’s not unusual to opt for treatment that includes adaptation and discomfort. That’s not unusual, and there’s nothing wrong with changing your mind.
There’s a new change in identity at this stage as well: You become intensely aware of being a person who will die. This awareness can change your internal perception of yourself, which at moments may be fine and others painful.
The most important thing to remember is this: It’s your life and death, and you get to choose how you want to deal with all the emotional and physical ramifications. Most people who are in relationship with others (be it a partner, family, or friends) can easily get caught up in making decisions for the sake of others. Making these decisions for yourself first is important and healthy; after you’ve decided what you want, you can more easily deal with the needs of others around you.
Saying goodbye
This is the hardest part. Some people are able to talk about their imminent deaths openly and candidly; others avoid discussing it at all costs. If the trajectory of your illness is moving along and you’re planning around dying, everyone around you knows it’s happening. Not talking about saying goodbye can be uncomfortable and even painful. Ideally, being able to address goodbyes in all directions—from you to your loved ones, and from your loved ones to you—will enable you to feel there’s no unfinished emotional business hovering over you.
When you reach the point of saying goodbye, you free yourself up to engage in the process of dying, and the process becomes cleaner and easier. What I call the “faraway” phase involves doing it in advance; the “soon” phase involves actively saying goodbye. It’s more conceptual in the early phase, but it’s also helpful in figuring out what you would want and need to feel complete.
Saying goodbye is profound, sad, beautiful, and relieving. Be aware that often the people around you are waiting for you to initiate the process and communicate your needs, and that isn’t wrong. Yet, others may feel the need to be the first to say it.
Prioritizing
“Setting things in order” is a powerful and satisfying process, as it gives you the opportunity to think about what you’d like to accomplish before you go. We all imagine it in the abstract at different moments in our lives, but when you’re dying, the process takes on a new urgency and immediacy.
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It’s important for all of us to leave the world feeling as though we have a legacy to share. Think about who you’d like to connect with, what you’d like to say to them. But think, also, about your possessions; many people choose to share them before they die. Some people enjoy writing their own funerals and eulogies as an exercise in acceptance—or simply because they want the details to be sorted and shared. Others don’t want to think about it and leave it for friends and family. If you write your will, you have the opportunity to think about where you want your assets distributed; most people enjoy thinking about who they leave things to.
Think about your contributions to the world and how you’d like to be remembered.
What are the life goals you perhaps haven’t yet fulfilled, and how can you, to the best of your current abilities, fulfill them? You may want to include travel, seeing friends and family, finalizing work projects that are important to you. And understand through it all that there’s a very normal internal tension around wanting to do these things and just letting go of them. Whatever you decide will be the right decision for you.
And, finally, you may wish to evaluate your religious/spiritual needs, both historically and in the present. Many people want to go back to the traditions in which they were raised that can be a source of comfort.
Medical and legal decisions
Think about the people you want to have control over your process. Do you want sole power, or include others in your decisions? How will this decision be communicated so others are aware of it?
Who do you want to have around you as you die? Do you prefer to be alone? Who do you want to protect/not have nearby? Do you want hospice care (in-home or at a facility)? Would you like the assistance of a death doula or a spiritual advisor? And, finally, how would you like your body handled—burial, cremation, organ or whole-body donation?
There are many issues to explore and educate yourself around… but do it in the time that feels most comfortable to you.
Letting go
What I can say through my years of experience is that there’s a great satisfaction in being organized around this process. My dying clients have often found tremendous peace in it. It can be a great source of comfort when passing from this world into whatever you imagine your next world will be. And it takes some weight off family members; they are often relieved when the details have been taken care of, and they have room to simply grieve.
There’s no right way or wrong way to approach your death; I just know from experience that it’s easier when you’ve given some thought to the process and realize you don’t need to reinvent the wheel when it comes time. So consider this a crash course on dying—and think about how you want to do it.
