A Gentle Guide to Accompany the Dying

My mom didn’t want to talk about dying. She was diagnosed with cholangiocarcinoma the Thursday after mother’s day 2005 and was dead the Wednesday before father’s day. I was in a whirlwind—just focused on caring for her. We didn’t have the conversations of missing each other, or sharing the sadness of what was happening. I longed to talk with her but I couldn’t. She didn’t want to. She had always been a very private person with her emotions.

We did have 2 brief conversations that acknowledged what was happening. During one, she asked if ‘it’ was going to hurt. It, I understood, was her dying. I told her that it wouldn’t, I would make sure of it. She asked me if she was going to have a hard time breathing. I told her no because I would be there by her side during the whole time. She turned her head and I knew the conversation was over. As painful and shocking to me as this conversation was, it gave me comfort to know she knew what was happening and she trusted me with her dying.

In the next few weeks much happened, alternatives therapies sought, doctor’s visits, people visiting, her fast decline. About 10 days before her death, as we were coming back from an incredibly frustrating doctor’s visit, she said when we got in the car, ‘he’s uncomfortable with dying, isn’t he?’ I told her yes. She asked me if she’d be here in 3 months. I said no. She asked if it’d be 2 months. I told her no, that I’d be surprised if she would still be alive in 2 weeks. She told me then she would start hospice.

I thought my heart was being ripped out of me. Those 2 conversations were the extent of our talking about her dying. There were no beautiful goodbyes like the ones I have seen and heard in other families. There was loving caring for her though. We loved on her, fed her, soothed her, and made her room beautiful with sound and smells and lighting. We were always at her side, lying with her, sitting next to her, making sure she had everything she needed. My goodbye to her was in my caring for her.

I guess my thoughts today are on all the ways we can acknowledge our goodbyes or the expressions of it. It may not look like the wonderful stories we hear. That is OK because there are people who are not able to share in that way. Another thing to remember is most of our communication is nonverbal, especially during this time. My hope is we can accept what goodbyes we do experience and know that it is the best that can be had at the time.



 

When a person is dying, she is retreating from everything outside of her. She has little energy for anything outside of what is going on in her internal world.

She cannot respond the same to conversation. It takes much effort to answer questions. To engage someone in the normal back and forth conversational style can be overwhelming for her. Instead, tell a story. Tell her what you did today or whatever is on your mind. But don’t ask questions. What she has energy to tell, she will. Do not be concerned if she does not respond to you the way she used to or even with a hint of a smile. She cannot.

It is not about you. Just keep talking to her if you want to verbally connect. Otherwise, your presence is enough.

When a person is approaching the end of their life, things outside of them begin to lose appeal. You will start to notice they are not doing some of the things they have enjoyed over the years. They begin to not want to see people. This is not to be confused with depression.

For the rest of this article, put the illness of depression aside. What I am talking about here is the 'going inward' of a person who is dying. The person may be depressed as well, or has fought it their whole life, but this process is outside the realm of depression.

What is happening is their focus is now internal. We believe this is the busiest time of life. They are doing what we call 'life review,' and they are preparing for the ultimate journey from their body. It may appear to you they are depressed when they are refusing guests, activities or watching their favorite show. They are not. The closer they are to their death, the more you will notice the withdrawal.

When you see this, know they are working out their lifetime. They are looking back over their life intensely. What this may look like is a strong need to tell you stories and share pictures. You may start hearing about people and incidents that you have never heard before ... and they will be sleeping more.

When you begin to notice this process is happening, what you do to support them now is to sit down and listen. Don't change their story. If they are telling it with the wrong details, etc. let them. The gifts to give right now are time and your listening ear. Priceless.