caring for the terminally ill

February 8, 1999

The most difficult time of life or aspect of life is caring for the terminally ill. How many of you are in a situation like that? It’s a lonely, burdensome job. It puts you face to face, on a daily basis, with the fact of your impending loss. And very often, you are taking care of a loved one who is no longer the person that you used to know so well.

It requires such an enormous degree of selflessness. You give all that you can, but there may be no one to give to you. There are, though, some important things that you can do for yourself to make this easier.

The first is to come to terms with the situation. Accept what is going on. There is no suffering quite like the suffering that we experience when we resist reality.

Second, realize that it is okay for you to set boundaries based on what you need. Someone terminally ill can be very demanding. You need to remember to take care of yourself, too. Try to find someone with whom you can honestly talk about what you’re going through. It’s really important to air your feelings and to be heard.

Third, don’t be too embarrassed or fearful to ask for help. Find out what kind of visiting nurse programs are out there that can help relieve you when you need it. It is an absolute necessity that you get some time away to yourself when you can.

Finally, acknowledge what you are feeling. You may have feelings that you think are inappropriate — like anger, irritation and frustration. They are perfectly normal, and having those feelings in no way suggests that you love the person you are caring for any less.

And remember that even during the most difficult of circumstances, there are times of tenderness that can be treasured.

My father died a little more than two years ago. He really just died from old age, but it took him awhile to do it. He was basically an invalid for his final four years. It was like watching a light slowly go out.

But of all my memories of my father, there is one that I am fondest of. During this period I would visit my parents’ house in New York. He and I would watch TV, and he would just hold my hand.
Taking care of my father on a daily basis was a full-time job, and it was very tough on my mother. She never complained, but for years she could barely get any time to herself. It’s not easy. But I reckon that this is the kind of selflessness we commit to when we get married — at least, my mother did.

So often, the caretaker endures more suffering than the person being cared for, and it’s important to take that into account. If you know someone who is caring for another, call them up and offer to take their place for a couple of hours. It is only a couple of hours for you, but it may be a blessed relief for them.

If you do, you may have to face your own fears and anxieties about being with someone you know is going to die — this can be a good thing. Chances are you might be more fearful than they are. They know they are about to move on, and you may have been avoiding that idea your whole life. Take this opportunity to come to grips with your mortality.

I’m actually not afraid of death. I’ve come close to dying a number of times and have helped a number of people through their process of dying. Those times when friends have asked me to be with them through that trip have been the greatest gifts ever given to me.

I’ve been with folks who go through a crisis of faith and then regain it, stronger and more durable than before.

I had a dear friend named Robin die at thirty-five. She had promised her best friend that after she died, she would find a way to tell her friend that she was okay. Well, she died and her friend was crushed — she was inconsolable the rest of that day and into the next day. The following afternoon she was in her kitchen washing dishes and the window was open. A robin lit on the windowsill and started singing. That bird stayed there for two hours. Now, maybe it was just a bird sitting on a sill — but maybe it was more than that. I can tell you that for this woman, it made her friend’s death a little more bearable.

Some people have a belief system that enables them to believe that they know exactly what happens after death. Some of us, like me, don’t really know what happens. But I have faith that it’s going to be okay. After all, isn’t that what faith is? The belief that everything is going to turn out okay?

There have been amazing studies done with people who have “returned from the dead” — you know, people who are clinically dead for a minute or so and then make it back. The psychologist Elizabeth Kubler Ross has been studying these folks — along with death and dying — for more than twenty years. What is remarkable is that they all describe the same experience. You have probably heard the stories.

Many people describe the moment of death as an out-of-body experience. They see themselves and everyone around them from above. Many also describe being in a tunnel that is blue, with a bright light at the end of it and deceased relatives waving to them or waiting for them at the end of the tunnel.

(Personally, one of my worst nightmares is that I’ll die and find myself in the Lincoln Tunnel with the IRS waiting for me at the other end. But then, I can be a real pessimist.)

A long time ago, I smoked weed — that’s marijuana for those of you who don’t know — when I was with a group of friends and we all decided that whenever one of us died, that person would be cremated and then we would roll some of their ashes in some really good weed and smoke them. Inhale them into ourselves. I’ve since lost track of those guys, but I still find the idea kind of interesting.

I love the ocean, so I want my ashes dropped into the Pacific.

I’ll close with a story. When my father was about seventy-five, I was visiting him. We were sitting outside and I looked at him and said, “Pop, you’re an old man.” He then looked at me like I was an idiot — a look that I was very used to. I pressed on and asked what it was like for him, looking back at all those years.

Now, at seventy-five, my old man had lived a life. He lived through the Depression, served five years in the Army during World War II, had a wonderful wife for more than fifty-five years, worked six days a week during most of that time, raised three children and saw three grandchildren born.

So I asked what it was like for him. My old man took off his cap, scratched his head looked at me and said, “You know, I didn’t know it would go by so fast.”

That statement was a gift from him to me. It made me realize that should I live to be a hundred — which given who I am is very unlikely — I’ll look back and it will all seem like it just took a second.

So the real question is, how do I want that second to have been for me and for those I care about?

Think about it.

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