Practical and emotional to-dos before the shut-off point

26 December 2018

Psychiatrist Elisabeth Kubler-Ross, in her book On Death and Dying shared the 5 stages of emotional responses to how one deals with death and the knowledge of dying — denial, anger, bargaining, depression and acceptance. These 5 stages do not usually follow any particular order and each can be experienced more than one time. Even after a reluctant acceptance of the situation, the mental and physical condition of the Dying may continue to foster a sense of alienation and withdrawal, to the eventual shut-off point when they totally disengage from “normal” living.

No two persons respond in the same way and many may be woefully unprepared and unsure how to deal with the situation. And we all know it can be horribly awkward to talk to a dying person. As a family member or part of the support network, there are some practical and emotional things which you could do to make the Dying feel a little better.

A few weeks or months before the shut-off

#1 : Engage in meaningful conversations

Instead of just focusing on making sure the Dying won’t die alone, tell the person more on what how he or she means to you. Palliative-care physician Ira Byock, author of The Four Things That Matter Most, said that the Dying wants to hear very specific messages from their love ones: “Please forgive me.” “I forgive you.” “Thank you.” “I love you.” It is even more meaningful to share your everyday life, as the last thing they want is being pitied or hearing only confessions. Maintain normalcy for as long as possible.

Possible conversation starters:

  • “ One of my favorite memories is when we…”
  • “ Can you tell me about the time…”

Not to Dos:

  • Do not say “Everything is going to be ok.” Be honest. It’s okay to let the Dying see your fear and distress, but do it tenderly.
  • There is no shame in dying, it is not a failure. Hence, avoid saying “Hang in there. You must have hope.” It is not as if they are not fighting. On the contrary, this may make the Dying feel even worse.

#2 : Follow the Dying’s lead

The Dying may be in a situation which they are conscious enough to be making their own decisions. But amidst their own fear, physical pain, confusion and other mixed-up emotions, they may have a whole lot of unfulfilled wishes and to-dos. Instead of telling them what needs to be done (which may cause some emotional distress), let them feel that they still have a sense of control and personal power.

Possible conversation starters:

  • “Dad, we can talk about anything. It may be hard, but we can get through it. Can I help you reach out to people you want to meet?”
  • “It matters to me what you are going through. I want to know how you wish to be cared for now, during your final days, and after your death. I love you and it means a lot to me to be able to care for you in the ways you want.”

Once they open up into talking about death, you can engage in a deeper conversation to get them thinking and sharing what they want.

Also read: Making decisions about life support

#3 : Offer specific help

Taking the initiative to help is appreciated but the Dying sometimes find it hard to tell others what to do. The phrase “Let me know if there’s anything I can do” is well meant, but practically challenging (for the Dying) to respond to. They may feel burdened to be in the position thinking of jobs for you to do.

You may be wondering what specific thing you can do. Spend a moment, thinking in their shoes. It may be even simple things like playing a music they want to hear, helping to audio-record or write down their last messages for people they care, and collating photos and videos of memories.

During the shut-off period

#4 : Stay present

During the withdrawal period, there is no point trying to force any conversations. They may avoid any face-to-face, but still open to talk by phone, internet or messages. They may just want to have some personal time alone to reflect. Give them the time they need. Provide an environment where it is safe to cry.

Just be present. Simply be with them in the moment, be it physically or not.

The final hours

#5 : Keep talking what is in your heart

Hearing is the last sense to leave the room. Never assume a person who is unconscious or unresponsive cannot hear you. Gently squeezing their hand or touching their shoulder or head while you speak. They may still sense your presence and hear your voice.

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