Our local support group has a lending library. Llocal support group member Virginia (whose mother-in-law had autopsy-confirmed MSA) donated several books to the support group's lending circle, including "Final Gifts" and "Final Journeys." I highly recommend them both. They are about bringing care and comfort to our loved ones at the end of their lives. Maggie Callanan, a long-time hospice nurse, co-wrote "Final Gifts" and she's the sole author of "Final Journeys." I was fortunate to hear Maggie Callanan speak at a conference in San Jose recently. I heard even more stories that didn't make it into either of the two books.

I read "Final Gifts" several months before my father died. It was a real tear-jerker but I don't know if that was because my father was dying. I recently finished "Final Journeys." (It's not a tear-jerker but is still very powerful.) I've provided below a few excerpts from "Final Journeys" that resonated with me.

Robin



TALKING ABOUT DYING

"Don't Tell Mom She's Dying. It'll Kill Her!"
"If I don't say it, it doesn't exist and I don't have to deal with it." People often feel that the realities of dying don't exist unless they're discussed. Both patients and family members want to know what to expect, but they're afraid to ask for or share information. Their hearts are breaking, but they fear that sharing their feelings will make everyone around them miserable, or that being open and vulnerable will mean 'falling apart.' So in the name of control, they keep everything inside. Burying our thoughts and feelings can seem like protection, but it actually leads to isolation, for both caregivers and patients. Silence begets more silence, loneliness, and depression. The sick person thinks: "This is too hard for the people around me. I'd better take care of their fears and discomforts instead of my own." So the sick person takes over the role of caregiver, avoids talking about anything that will upset the family, and in so doing further isolates him- or herself. Meanwhile, the caregiver thinks: "If I acknowledge what's happening, it will be too overwhelming to handle. ... [The] reality of dying sits right in the middle of the room. Everyone sees it and walks around it, but no one mentions it, pretending it's not there. The atmosphere around the dying person becomes artificial and silent. ... Silence severs the possibility for human connection, the essential support we all need during this difficult time.


DENIAL

[Denial] is a powerful crutch that should not be yanked away unless you have something more powerful and supportive to put in its place. Let it be unless it causes behavior that is dangerous to the patient or to someone else. Denial will be given up if and when the patient (or family member) is able to deal with the truth. On rare occasions it is never given up.


CPR

One of the most difficult choices facing a dying person is whether or not he wants to have cardiopulmonary resuscitation (CPR) if his heart or breathing stops. Some people choose not to deal with this issue, or delay too long making this decision; in either case, it must then be made for them by their spouse or family. This is an upsetting choice at best, but it is even harder if we have to make it for someone else, and in the midst of a crisis. If a do-not-resuscitate form is not signed, or if the doctor does not know the patient's wishes, CPR will be attempted. One of the kindest gifts a terminally ill person can give his or her loved ones is to make this decision early, sign the form, and let everyone know it's been done. This spares the patient's loved ones from being forced to make this frightening and potentially guilt-ridden decision themselves.

Because of cardiopulmonary resuscitation, many people with terminal illnesses today have to experience dying a second or even a third time, often without ever having regained consciousness. This causes undue trauma for the patient and the family. It is a death without comfort, peace, or dignity. And typically the family is excluded from being there with the one they love. ... If ineffective, CPR is stopped and the time of death recorded. If successful, the patient and all the attached life support machines are sent to the intensive care unit for close monitoring, with hopes that at some point the patient may improve, regain consciousness, and be able to sustain life without the respirator. ... In a terminal illness, CPR prolongs the dying, not the living. Many people have a distorted or inaccurate view of what this intervention involves and what the outcomes might be. ... CPR is now the expected intervention in all situations unless a do-not-resuscitate (DNR) order is signed by the patient and a physician.


MYTHS

Dying people don't know they're dying unless somebody tells them.

Don't let the dying see you cry.

Don't talk to the dying about what your life will be like after they're gone.

If someone is uncomfortable with the process of dying, it's okay not to visit the dying person.

We should protect the children and keep them away. We want them to remember granddad the way he was.


HOSPICE

Choosing hospice does not mean 'giving up hope'; it can be about help with living your dreams.

The dying can spend their precious time raging against and fighting their illness, or they can choose to celebrate life while making final and powerful memories.

Understanding what is normal for dying can help prevent fear and alarm in the onlookers and help them focus on what they can do to help the patient.


CAREGIVING

One person should not be sacrificed for the dying of another. Get as much help as you can, as early as you can, for as long as you can.

Caregiving in a wounded relationship deserves extra support and concern from everyone, as providing care is more difficult and the rewards are hard to come by.

The dying ask of us: "Let me know you'll be okay--then please let me go."


THE BOTTOM LINE

Love never dies.

YES!!!

DrP

Excellent!

This really resonates with me. Thank you, Robin,

Nan

I highly recommend both books -- "Final Journeys" and "Final Gifts."