Caregiving During the Dying Process

"While I thought I was learning how to live,

I was learning how to die."

Leonardo Da Vinci.

Table of Contents

Introduction

Recommendations to those with ill friends

Tips on how to talk to a terminally ill friend

INTRODUCTION

The Circle of Friends mission is to support our community’s wellbeing by organizing volunteers and caregivers to respond to issues related to physical and emotional health. In that effort, we help bring people and resources together to support the flow of giving and receiving.

The intention of this document is to help those near a dying friend cope and be better prepared to help make this time as precious as possible.

Jennifer O’Brien, author of ‘The Hospice Doctor’s Widow’ mentions that,

Precious Time is when you say what you need to say and don’t say what you will later regret.

Caring for a friend during their dying process is an act of compassion and love that enriches us deeply.

Learning to work with death and dying makes us a vehicle of comfort and peace to the dying friend and their family in the midst of many unknowns. Nothing soothes the dying and their families like the caring presence of a caregiver that listens, respects and supports the entire process.

By working with the dying, we begin to lose the fear of death and can become more sensitive to others’ experiences.

A bond is formed between the family and the helping friends. We learn that dying is similar to being born -full of light and spiritual transcendence.

Our aim is to provide comfort and support so our friend dies in peace and with dignity.

Remember, this is not only your loved one’s journey, but yours as well…

RECOMMENDATIONS TO THOSE WITH A TERMINALLY ILL FRIEND

When illness is chronic or terminal, the added pressure may lead to ‘care-giving fatigue’.

Here are some thoughts that may be helpful:

This is an opportunity to exercise compassion, to extend our love and to serve those less fortunate.
Consider forming a circle of friends to help the ill friend, thereby sharing the burden of the main caregiver. A point person – someone who is close to the caregiver – can be asked to coordinate support efforts.
Remember, the main caregiver may need as much care giving as the friend cared for. They may need relief from round the clock service to the ill friend.
The circle of friends could:
- Schedule friends to provide one or two hours of relief a couple of times a week to the caregiver (respite care)
- Provide emotional support, an attentive ear, once or twice a week, especially during more intense times (via phone call, in person, even face-time or other virtual means)
- Financial assistance depending on need
- Provide meals, rides, medicine pick-up, errands if appropriate

TIPS ON HOW TO TALK TO A TERMINALLY ILL FRIEND

We are often at a loss for words when wanting to reach out to a terminally ill friend. We would like to help but may not know how, what to say or what to do.

Here are some thoughts:

Don’t ask “how are you?”. Say instead, “It’s nice to see you!”
Call them and offer to visit them. “Hello, I’d like to visit. Is that OK?”
May I straighten out your blankets?
I see your cup is empty. Is it OK to fill it up with water?
See what you can do and ask if it is OK.
Talk about their interests, the things you have in common.
Normalize things – talk about simple things, see what information they volunteer. Allow them to bring up a subject. Let them connect with you.
Tell them they are doing a good job, doing as much as they can.
Thank them for allowing you to be with them.
Working with the family: the caregiver needs to know what the friend’s Advance Health Care Directive says and their desires about what to do with the body are. Very respectfully find out if the immediate family is in agreement. In a very calm way, help them understand that in California the AHCD is final word.
Since talking about dying is difficult, try to talk about it before the time comes. Help them express their fears – it is a natural process and it is better to be prepared.

KINDNESS, PATIENCE AND LOVE ARE LIFE SUSTAINING

A few of the Circle of Friends members took a course with Teaching Transitions and Doing Death Differently Trainer Patty Burguess – below are some thoughts from that course. TeachingTransitions.com – Doing Death Differently – Copyright © 2017

WHAT TO EXPECT WHEN DEATH COMES

Death to many, has become something to fear and avoid at all costs, yet we know it is the inevitable fate of us all, so it makes sense to spend more time understanding and preparing for the very thing that will take us all one day—some sooner, some later.

If it is FEAR that keeps death and all that it has to teach us at bay, we might re-look at that fear. An acronym to remember is “F.E.A.R.” (Feelings and Emotions Appearing Real). The counter-intuitive idea of looking more deeply at our fear, can actually help us move past it. In doing so, we may recognize that much of what we fear might not be real or true – but instead a practiced belief, that has not been given a second look for a very long time. Instead, upon examination, we have the opportunity to reframe death, and embrace the many opportunities and connections that death can bring, if one is willing.

This document is a practical guide for what to expect as your loved one or friend faces death, but it also shares some concepts to explore and master if you choose, that will truly offer some of the most healing and cherished times.

The goal is to have you and other caregivers move from “scared to sacred”. Though it is only the switching of two letters to achieve that—we understand that it might not be as easy as an alphabet shift.

Dying Well

There is such a thing as a “good death”—the kind of death, that if you could choose, you would want for your loved one and certainly yourself. It is a kind of mindful, careful, comfortable and connected death experience that can move anyone from being scared to feeling prepared. Since you know your loved one’s wishes, unique concerns and values better than anyone, YOU have a sacred place in the life and passing of this person. You CAN create that experience to be the best under the circumstances that it can be.

The Needs of the Dying

The need to be treated as a living human being.
The need to maintain a sense of hopefulness, however changing its focus may be.
The need to be cared for by those who can maintain a sense of hopefulness, however changing this may be.
The need to express feelings and emotions about death in one’s own way.
The need to participate in decisions concerning one’s care.
The need to be cared for by compassionate, sensitive, knowledgeable people.
The need to expect continuing medical care, even though the goals may change from “cure” to “comfort” goals.
The need to have all questions answered honestly and fully.
The need to seek spirituality.
The need to be free of physical pain.
The need to express feelings and emotions about pain in one’s own way.
The need to understand the process of death.
The need to die in peace and dignity.
The need not to die alone.
The need to know that the sanctity of the body will be respected after death.

Reprinted from The Needs of the Dying” by David Kessler, Harper Collins Publishers (1997) www.DavidKessler.org

Signs, Symptoms and What to do in the “Pre-Active Phase”

We understand that the person facing the end of life may not always be in a medical setting. For the purposes of this section, we will use the term “patient” when we are referring to the one who is dying.

Sign: Retreating from social interaction.

What to Do: Don’t force conversation or interaction. This is the beginning of the process of letting go. Just be present, quiet and know that that is enough. Don’t avoid being present simply because you will be talking less. Presence is powerful. Send loving thoughts toward the person—some of which may include the permission to let go.

Sign: Lethargic, mentioning how tired they are, increased periods of sleep.

What to Do: Allow sleep to occur when it does. Do not try to keep the person on a sleep schedule. Spend time in quiet presence with the person. Speak quietly and in gentle tones. Assume that they can hear everything you are saying but may not be able or interested in responding. For this reason, it is important that you do not talk about their condition in front of them or within ear shot, except for permission to let them go, and how much you love and care for them. Studies have shown that the dying can hear and do react with change of heart and brain rhythms, skin temperature, and often with an increase in agitation.

Sign: Decreased interest and intake in food or fluid.

What to Do: Do not force food or fluids. This is the natural process of the body shutting down. Forcing foods or fluids can be very uncomfortable or even dangerous for the dying person. The body is conserving energy for the very important task of dying. If the lips are chapped or it makes the patient more comfortable, use glycerin swabs or ice chips to moisten the mouth and lips.

Sign: Not recovering from infections and poor wound healing.

What to do: At this point in time, there is no real need for the patient to recover from wounds or infection. The goal is to make the patient comfortable, especially at the site of the wound by covering loosely and keeping the wound from being accidentally bumped. You may want to prop up pillows or blankets around the wound to keep it protected.

Signs: Edema (swelling of limbs or other parts of the body).

What to Do: Check with the doctor to see what level of medication to treat the edema is required for comfort. Some patients are not able to swallow, so even fluids under the tongue are not an option.

Signs: Increased restlessness, agitation, discomfort or confusion-wishes to change positions frequently.

What to Do: First have the patient assessed for pain. If the patient is not verbal, there are signs to look for such as grimacing, or recoiling that can indicate pain. If the patient is uncomfortable, continue to get assistance in changing their position as often as they request. The patient may make repetitive motions, like grasping at the air, or pulling on bed linens, yet seemingly unaware of these actions. Do not try to restrict these movements – be gentle and speak softly. If you know they are comfortable being touched, do so lightly. Play music or read from a soothing text.

Signs: Exhibiting apnea (pausing between breaths for a long period of time) whether awake or sleeping. Changes in breathing from rapid to slow or rattling/gurgling sounds with each breath.

What to Do: To make the patient more comfortable, elevate the head or turn them on their side. Read the signs of feedback even if non- verbal to assess how comfortable this is. The sounds, although they may be distressing to the caregiver, are from fluids and secretions forming in the back of the throat. They are not dangerous and cause no discomfort to the patients.

Signs: Asks to speak with clergy to “make peace” or to “get right with God”. Wishes to pray or make amends.

What to Do: If there is a family connection with clergy, ask them to come and see the patient. If not, the hospital or hospice has a chaplain on staff for spiritual support. Often, the unresolved issues facing a patient are soothed or relived by talking to one who is deemed to have a direct connection to God. This can be an incredibly healing experience and the conduit for additional healing with family members and other relationships.

Signs: Requests to speak with specific family members-shares past unspoken issues.

What to Do: This is a delicate time for all family members, especially if there are long, ongoing disagreements or feuds. It is hoped that the family members can be gracious and just listen. There is no gain in arguing over past hurts, but the focus should be on giving the patient closure and the emotional relief sought.

Signs: Wants to get personal affects and finances in order.

What to do: Listen to the requests of the patient and let them know that you are following their directions and wishes. Write down everything they are telling you. If the patient wants to meet with an advisor to memorialize their requests, schedule an appointment immediately. This may be the opportunity, if the patient is still alert and oriented to talk about advance directives.

Signs: Asks if it is “OK” to want to die, or states that they are dying.

What to do: Listen lovingly and without judgment. Let them know that you are ready to let them go when they are ready to go, but that you love them and want to them to complete this process in their own time and on their own terms. Let them know that it is important to you that they be comfortable, both physically and emotionally. At this time, it may be appropriate to ask them if they are OK, or scared, or worried. Finding out what their fears or wishes are is very important so you can “meet the patient where they are” emotionally and physically. The goal and the hope is to ease any fear. Finding out what the patient fears and wishes is very important so you can “meet them where they are”, emotionally and physically.

FOR EXAMPLE: My friend Rona was dying of lung cancer. Her big fear was that she would suffocate and gasp for air in a way that she would be conscious and know she was dying in that moment. To ease her fear, we brought in the hospice nurse who explained very clinically and with much assurance that the plan was already in place not to have that happen. The hospice nurse went on to share the use of medications, positioning, and the way her body would respond when it was time in an effort to ease her fear. When this was discussed and Rona felt safe, she could go on with the important business of experiencing the wonderful things at the end of her life without distraction and fear.

Some patients will not want this level of clinical detail, others will. Again, it is about meeting the patient’s desires. If you would not want clinical information about the moment of your death, realize there are others who would feel much more comforted by having that information. We all express our fears differently and should not be in a position to pass judgment on how someone should respond.

By discussing these matters in a gentle and inviting way, it can spark a conversation that gives you huge insight into their needs through their fears. This is also an opportunity to connect in a way that is powerful and meaningful.

Signs: Tells of seeing people who have already died, or are confused about where they are, or what is happening

What to Do: This is a common experience and expression of those who are dying. Some patients see family members, friends, angelic or light- filled beings. Often they report that they are getting messages of preparation for “going home”. Most often, these messages are soothing, hopeful, and calming to the patient. Whatever your beliefs are or whatever the cause (true connections or the brain shutting down), it is important to engage the patient and ask them to share their experience more fully. This IS the time to suspend judgment and show your interest.

If you were to tell a dying patient that they are only having hallucinations, or attempt to deny their reality, you will only frustrate them, make them scared or angry and separate yourself. Accept this as an amazing experience—one to explore further (for you and them). Ask specific details and if the patient wants to talk, let them relay all of the details. By assisting, you are as close to death as you will ever be without crossing over to get an insider’s view. You do not have to accept this reality as your own, because it is their reality. Allow this experience as a new perspective, one that makes you curious and explore your beliefs about what happens when we die.

You are offering the most sacred of actions—that of escorting your loved one to the other side, with peace (which is why you don’t want to argue for your reality), but at the same time, your loved one is escorting you to new vistas. Thank them and love them for it.

If your loved one is confused about where they are or what is happening, you can gently ask them, ”Well what are you experiencing?—Please tell me more—so that I can better help you or understand.” Let them continue to talk and begin to make their own sense of their experience. Often, at this point, they may become sleepy or go on to another subject. If they seem to want answers from you—tell them where they are and, and that you are with them—that you want to make them as comfortable as possible. If they become agitated, let them know that you will help anyway you can, and ask THEM how they think you can help, then follow their lead.

Active Dying Phase

Depending on age, metabolism, readiness and type of disease, the signs and symptoms of the final phase of life will vary from person to person. Clinicians have expressed that cancer patients seem to have the most predictable pre-active and active dying process. Perhaps this is because cancer is the disease that is the most prevalent in our society and therefore more frequently studied. Other illnesses such as Dementia, ALS and others may be less predictable.

You have probably heard the term, “keeping a vigil”, which usually means that there is round-the-clock observation by family and friends because, at this phase, we cannot predict the exact time of death—but we know it is imminent. That could mean days, hours or minutes.

Regarding your own grief, and in an effort to create the best death experience for your loved one, it is not appropriate to be loudly or dramatically grieving or crying in the room or in your loved one’s presence. It is understandable that you would be sad, or grieving—but your expression is in your control while you are with the patient.

Your loved one has a huge task, the task of dying. It is extremely difficult for them to tend to that task while emotionally or spiritually tending to your discomfort. You have the ability to be an amazing presence at the time of death, and to help him or her feel calmer and at peace. If you are not able to control yourself, it is important that you leave the room and compose yourself, so that when you come back you are able to be calm and to lovingly “hold the space” for your loved one to pass. This does not mean that you must hold your tears, or that you cannot weep.

The tears may come naturally even in front of your loved one, but it is possible to be tearful, while being fully present and still in control. Be assured that you will have plenty of support from the living to work through your grief. Please be extremely sensitive to this approach during the active dying phase in order to support your loved one in their transition.

Continue to speak with your loved one in relaxing tones and reassure them that you are there, that you love them, and that you will be fine without them. Even if you don’t feel like you will be fine without them, this gives the dying patient the “permission” to leave. They will be leaving anyway, whether you are comfortable or not, so give them the gift of reassurance that you are okay. This is not lying. When we begin to re-frame death as the amazing passage it is, you may find that not only are you fine, but you are drawn to and excited by this passage, no matter how difficult. It is your opportunity to be a loving presence. Should you get to this point, be assured that you have accepted the passing, even though you may not always sense it. You may even begin to notice how alive and joyous your spirit is and how you are truly transformed by this death experience. You have co-created and participated in a “good death”, a personal passage to be celebrated.

Signs the patient is in the active dying process

Without understanding what is happening, the active dying process for those who are visiting or believing that communication can still take place, can be uncomfortable if not prepared. When others come to visit, you may want to share a bit about what is happening to allay some natural fears.

Sign: Mostly unresponsive or responds only after great effort, but quickly returns to an unresponsive state.

What to Do: Continue to lightly touch, caress, and speak in soft tones being ever mindful of the fragility of the skin, and the rest of the body, so as not to irritate.

Sign: Extreme agitation, verbal calling out phrases or words, visions, talking unintelligibly, other times, very clearly. May express their wish or readiness to die.

What to Do: Speak in soothing tones and do not dismiss the concerns or fears expressed. Ask if there is anything more you can do. Continue to touch and hold unless you sense that the touch is agitating to the patient. Try to plan your visits to be with them when there are the least other visitors, so the environment is calm. Often playing calm music softly can be a great stress-reducer. A luke-warm cloth on the forehead and face can be very soothing too, if the patient has an elevated temperature.

Sign: More pronounced apnea (periods of slow breathing or lack of breath).

What to Do: Prop up pillows or blankets around the back and head to gently elevate for easier breathing.

Sign: Moaning while breathing, or rhythmic breathing with sounds

What to Do: Try to first assess if there is any pain. If the patient can or cannot tell you that there is pain, contact the nurse to have your loved one evaluated. Once pain is addressed, continue to offer comfort measures such as light touch, energy work (if one is trained), and soothing tones and words.

Sign: May have a “rally day”, or a few hours, where your loved one seems to miraculously become alert and is very lucid. This is commonly reported often a day or two before the patient passes.

What to Do: Engage the patient to the extent they want to be. They may want to talk to people, look at pictures or even become mobile. Follow their lead. Accommodate them as much as possible and savor this time. Do not try to get them to sleep or stay calm or not move, fearing that they will hurt themselves. Be sure to monitor, guide and hold on to them if they choose to walk and are fragile.

This often is the patient’s last conscious time of connection and can be very important. Don’t mistake this for some miraculous healing (for that happens only in rare instances). Be sure to stay connected to them emotionally and spend the time with an open and grateful heart.

Sign: Difficulty or inability to swallow, which causes fluid retention in the back of throat. This causes a gurgling sound upon respiration or what is known as the “death rattle”.

What to Do: Ice chips or small amounts of fluids should be stopped if there is difficulty swallowing. Glycerin swabs or Vaseline can be used to keep the lips moist. Secretions from the mouth can be removed with the tip of a washcloth, and by turning the patient on their side so that the secretions flow out of the mouth and are swabbed. A humidifier can also be used to keep the secretions loose.

Sign: Inability to control bowels or urine – decreased urine output.

What to Do: Keep pads beneath the patient that can be changed frequently to keep the patient dry and clean.

Sign: Extremities feel cold to the touch as circulation is slowing down. Blood pools under skin creating a reddish, purple mottling appearance on the skin.

What to Do: Keep patient warm with a series of light blankets. Be careful not to pile on too many making it harder to breathe. Do not use electric heating pads or electric blankets.

Sign: The patient’s mouth is slightly to mostly open and may fall to one side – no more muscle control

What to do: Nothing to do – allow it to happen. This is natural.

Sign: Dramatic drop in blood pressure.

What to do: Nothing to do – allow it to happen. This is natural.

Sign: Eyes are fixed and dilated

What to Do: Nothing to do. If uncomfortable, the eyes can be gently helped to close

Sign: Breathing slows-breaths are wider apart

What to Do: Nothing to do. Death is imminent when last breath is taken. Be sure to watch for an unexpected last breath when the inhale is farther apart from the exhale. This can be surprising, when a patient takes another breath after you thought it was their last. Many seconds can pass, even close to a minute where another breath is taken.

At the Moment of Death

Signs:

Patient’s body no longer moves.
Skin becomes pale and waxen looking.
Eyes are fixed and pupils are dilated. Eyelids may be partially open.
There is no other breath after the last one.

What to do:

Be present or as long as you and your loved ones wish. You and your loved ones may openly grieve or weep, or not exhibit any signs of grief at all. Some may stay, some may leave the room, and some may be very vocal upon death. All is acceptable.

Who to call:

Depending upon the state, locale and whether the patient was on hospice, died at home or in a facility–either a physician, nurse or paramedics will be called to “pronounce” the death. This means that the person is declared legally deceased. Again, this varies by location.

Death in a hospital: The attending physician will be called to pronounce the death.
Death in a personal care, assisted living or retirement community: The patient’s treating physician will be called and notified. If they are not reachable, the on-call physician will be contacted.
Death at home-with hospice: If the hospice staff is not present, the hospice nurse should be contacted by the caregiver—the hospice nurse can pronounce the death.
Death at home – without hospice: Either the treating doctor is called, or if there is no relationship with a doctor, 911 should be contacted.

Funeral Home

Where possible, the funeral home should be decided upon in advance, rather than wondering who to call upon death. When the family is ready the funeral home is called to remove the body.

Emotional Support

If anyone is having emotional difficulty, and hospice has been involved, call on the social worker or spiritual counselor for support—they will be there immediately if not already present.

If hospice is not involved and the death has taken place in a facility, hospital, nursing home or assisted living–the social worker or chaplain there can be called on for support.

If the death has occurred in the home, and hospice is not involved, once the doctor or 911 has been notified– a funeral home can be called. Most funeral homes have ministers on staff or affiliations with non-denominational community chaplains who can be there with you for support.

Remember: All is as it should be.

That is the amazing mystery of death.

Source: TeachingTransitions.com – Doing Death Differently – Copyright © 2017

APPENDIX A

CARING FOR SOMEONE DURING THE DYING PROCESS

These are the instructions we give to friends helping someone during their last days.

Call end of life doulas/transition helpers if you have any questions.

There is a blue hospice book ‘GONE FROM MY SIGHT’ which is useful to read.

Here are some guidelines for while you are in the house:

Assist the spouse with anything they request.
Do not wake our friend:
- Sit with him so he is not alone, maybe at a distance so not to take energy from him.
- If he is awake offer him a sip of water, adjust the covers if he seems hot, offer to put a cool cloth on his forehead, face, offer to put lotion on his hands.

Regarding medicines – Communicate with the main caregiver about this.
- Meds are in the dining area with a recording log sheet.
- There is morphine if he says he is in pain and wants / needs it.
- There are some meds for anxiety, which could manifest as tossing in bed, shortness of breath, or being somewhat disoriented.

DEATH HAS OCCURRED

When the last breath has been taken, do not call 911. It is a sacred time. BE there for a few minutes - there is nothing to do.
Light a candle.

If the friend was on hospice:

The family will call Hospice (530-749-3460). A nurse will come to fill out paperwork and contact the coroner and mortuary.We suggest:Lakeside Colonial Chapel & Crematory: 830 D St, Marysville, CA95901. Tel. 530-749-9277.
Decide if time will be given for friends to come and what time the mortuary is to come.
The caregiver/transition helper will householder the room, put medicines into one place and remove other nursing items and supplies.
When it is a reasonable hour - call Leonid, others on the list of friends and the Elysian Society (Rowena 530 692 2000) to notify the death.
With the consent of the family, after the Hospice nurse has left, help the family destroy all remaining drugs.

If the friend was not on hospice:

Have the family or if they prefer, you can call 911 to report the death. Do not touch anything. A sheriff, ambulance and other officers will come. They will contact the mortuary.

”This is love:

To fly toward a secret sky, to cause a hundred veils to fall each moment.

First to let go of life, finally, to take a step without feet.”

Rumi

APPENDIX B