When my husband was in the final stages of his terminal illness, my grandson, then nineteen, expressed a desire to be with his grandfather. But I don’t know what to say, he worried. It has always bothered me that I didn’t know what to tell him.
This may be a concern even for those who have had some experience with what the First Nations people refer to as Walking each other home.
In Final Gifts, Understanding the Special Awareness, Needs and Communications of the Dying, Authors Kelley and Callanan offer some advice, based on their careers as hospice nurses.
A dying person will experience a succession of grief emotions: denial, anger, bargaining, depression, and finally acceptance, but not necessarily in a predictable order.
When a patient is in denial, the authors stress that it is not advisable to attempt to make them face the reality of their situation.
It is better to respond to optimistic statements about possible future activities by saying things like, Wouldn’t that be nice for you? Or, I bet you would love that!
We need to respect rather than challenge these expressions of being healthy enough one day to participate in life again as they once knew it.
However, the authors also stress that it’s essential to not collaborate in expressions of denial.
Affirming their denial may leave the person feeling isolated and unable to discuss their situation fully at some later time. They may think that you are unable or unwilling to face the reality of their situation, or to discuss it openly with them when they are ready.
If a patient is angry, remember that anger can grow out of fear, frustration or out of resentment. While it’s not always easy to pinpoint the source of the anger, understanding the cause can help us respond lovingly.
Discovering the source of someone’s anger with gently probing statements like the following may be helpful:
I imagine it’s hard to always be asking for help.
This seems like it might be frustrating for you.
You seem upset. Is it something I can help you with?
Bargaining is often very private and not shared with others. If someone does tell you about a bargain they may have made with God or perhaps with their illness, be respectful. The authors offer phrases like, Wouldn’t that be great! or I’ll help in anyway I can.
Depression comes from loss—for the dying, a loss not only of previous capabilities, but also of any possible future. They are losing their whole lives, and this must be grieved. Be respectful of this loss and of the emotions which accompany the person on this lonely journey.
Acceptance usually comes when the patient is comfortable and has had sufficient time to absorb the reality of their situation.
This may be distressing for a caregiver who is in a personal relationship with the patient, wishing for more time with their loved one than the disease will allow. The need for caregivers to express distress at their own loss is vital, and finding someone who will listen and respect their emotional journey is also desirable at this time.
If you’re wondering what to say to someone who is very ill and unlikely to recover, I highly recommend this book. It is not just the helpful tips that are offered, but also the attitude these nurses espouse that is so very helpful.