As told by Elizabeth
I've been a volunteer for the last few years, and have
been around death and dying a fair amount. I hear a lot of stories
from family members of people who are dying or who have died. There is
a common occurrence with some patients receiving palliative care near
the end of their life, called pre-death restlessness. The 'solution'
to this restlessness, is often to administer more drugs. I can't blame
the doctors and nurses. The families get upset if their loved ones
begin doing unusual things; like trying to get up and walk when they
are physically unable to, or thrash about endangering themselves or
others, or when they begin to 'hallucinate'. People are often afraid
of what they do not understand or what they cannot perceive. So to
ease the fear and concern of families, and to facilitate the care
giving of 'challenging' patients, dying people are often given larger
or more frequent doses of Dilaudid (synthetic morphine) or Ativan (an
Our culture has little training in subtle communication during
critical times. The books, Coma: Key to Awakening by Arnold
Mindell, Coma: A Healing Journey by Amy Mindell, and Final
Gifts: Understanding the Special Awareness, Needs, and Communication
of the Dying by Maggie Callihan and Patricia Kelley are some of
the breakthroughs in this area, but more awareness training is needed
on how to communicate with the dying and their altered states of
consciousness. Besides medication, few caregivers know what to do with
challenging altered states of consciousness.
How do we get more family members and caregivers to see, that in the
long run, more awareness might be useful and shorten suffering time,
so patients can finish up their business on this plane of existence
and move through painful places more quickly?
When patients are in coma states, loved ones often think the
communication ends there. They say, "There are still things I want to
say to her and now it's too late." I tell them, "Go ahead and say it;
tell them. Your loved one will get the message one way or the other.
Hearing is the last sense to go."
How to get people interested before the crisis? How do we get people
educated before they need these skills? Same as with natural
childbirth. In the same style as childbirth education classes, why not
regular death education classes where people learn to understand and
work with possible agitation, pre-death, and coma states?
My mother had a heart attack at the age of 70, a major
myocardial infarction. By the time the paramedics got her to the
hospital, they had her on full life support, as she was unconscious
and not breathing on her own. They gave her only a 50% chance of
surviving through the night. If she made it until morning, her chances
could improve. Of course, our whole family was in shock. No one seemed
to want to stay with her in the hospital, except me. I wanted to be
with her if she died in the night, so she wouldn't be alone. The
nurses set me up in the family waiting room with a cot. I could also
sit with Mom in the cardiac room.
Her signals were hard to read, as the equipment was doing her
breathing for her. I could track her eyelid movements, the blood flow
in her neck, and her fingers twitched occasionally. A lot of what I
did that night was simply sit beside her, holding her hand and
Sometimes I would lean in close to her and say, "Its okay if you need
to die, and it's okay if you pull through too. Whatever it is God and
you decide. We'll be okay." When I said I would stay with her, her
eyelids fluttered. I told her that I loved her and reminded her of
what had just happened, so she wouldn't be confused. "You and Dad went
out for lunch; you started to not be able to breathe very well; you
left the restaurant. Dad wanted to take you to emergency, but you
refused, so he rushed you to your doctor's office. Just as you got
into the doctor's office, you had a heart attack. The doctor revived
you and called 9-1-1. Now you are in the hospital, on life support,
and I am here with you. It's late at night, and everyone else is home.
They'll be here in the morning. I'll stay with you."
When I finished telling her this, she squeezed my hand, which startled
me. I knew she understood. I sat and prayed, "Thy will be done."
In the morning she was still comatose. I told my mother again, the
story of what happened and where she was, because I knew she worried a
lot. I told her again that I loved her and her eyelids twitched again.
Then I went to sleep for awhile.
They had given her drugs to keep her from pulling out the tubes, which
in her agitation she had been trying to do fairly frequently. But by
noon that day, she slowly began to come back to consciousness. She was
sleepy and groggy, but nonetheless awake and looking around.
Elizabeth: Mom, I?ve been here all night, but you weren?t really
here. Where were you?? She looked puzzled. She went back
inside and then came out again.
Mom: I was in a long tunnel.
Elizabeth: Oh, you were in a tunnel?
I didn?t want to put words in her mouth, so I just fed back to her
what she told me and asked: What was it like?
Mom: It was really dark at first, but then there was light.
Elizabeth: Did you go towards the light?
Mom: I don't know.
Elizabeth: Was there anything else?
Mom: Yes, I heard music.
Elizabeth: What kind of music?
Mom: Different kinds of music.
Elizabeth: Was it nice?
Mom: Yes, like a bunch of different instruments playing at the same
Then she went back inside. My family came back after lunch; tests were
run; and things got chaotic again.
Three days later I asked her if she remembered telling me about her
near death experience. She said, No, like she hadn't a
clue what I was talking about.
At age 75 Mom was dying at home. She had been diagnosed after the
heart attack, with having advanced melanoma, skin cancer. She was
registered with Hospice, but absolutely refused to go to the Hospice
unit. "That's where people go when they're dying. I'm not dying."
My Dad, one of my sisters and I looked after her at my Mom and Dad's
house, very intensely, for the last six weeks of her life, with
Hospice support. Just before that, Mom had had a fall, and so went to
the hospital briefly. She had bad pain, so they gave her Dilaudid in
the hospital. When she requested breakthrough pain relief, the doctor
decided to prescribe time release Dilaudid, so that she would have a
continuous dose running through her. Dilaudid seems to work better
with a continuous stream running through a person's system, as opposed
to only giving it when pain is apparent.
By the time she was brought home from the hospital, she was having
spasms and intermittent fevers, which were quite alarming. My eldest
sister looked up Dilaudid on the internet and discovered that spasms
and fever can often be signs that someone is on too much Dilaudid. We
talked to the Hospice doctor and nurses about it, and they gradually
lessened her dosage. The tremors and fever abated. After coming off
the heavy pain medication, Mom said to me, "I almost died! Don't give
me those drugs again! I was so scared! That was the worst experience
of my whole life! Why did you do that to me??
I reminded her that she was having a lot of pain, and it seemed like
the Extra Strength Tylenol just wasn't touching it anymore. I
explained to her how it had all happened. I asked, "What should we do
when you have that much pain again?? She didn't know and neither did
any of us, really. We found this very challenging. It's hard to
see someone you love in excruciating pain.
She went back to minimal four hour doses of Dilaudid, and that worked
for a few days. But the pain got worse; pain seems to have a life of
its own. We gave Mom Extra Strength Tylenol in between the Dilaudid
doses, until that didn't work anymore. Eventually, the doctor put her
back on stronger dosage of Dilaudid. She was now inside a lot of the
time, coming in and out of "normal" consciousness.
About two weeks before she died, the nurse put a butterfly patch on
Mom. Meds can then be administered by caregivers directly into the
butterfly, instead of piercing the patient's skin each time.
I came over one day and Dad was upset. He didn't like giving her the
injections every four hours. He had a hard time seeing where to put
the needle into the butterfly and had bent one or two needles trying.
He was afraid of hurting Mom, plus every time he went to give her the
injection, she would say, "What are you giving me now?" And Dad would
say, "It's a pain relief drug. Do you want the pain to come back?" The
pain was severe now without the Dilaudid. My mother would say, "No!"
So she would agree and he'd give her the dose.
One afternoon I was looking after Mom, so Dad could get out and have a
break. I sat with her and held her hand. I watched her signals. Her
mouth moved, she swallowed hard, and got restless. I said, "Just pay
attention to whatever you are seeing. I don't know where you are, but
take a good look at what is there."
She was really groggy, but coming out a bit. The skin cancer had
metastasized (spread) to the brain, brain tumors, so she was on
Decadron (an anti-inflammatory and immunosuppresent) for that. She was
trying to open her eyes. I felt strongly she wanted to communicate
something to me. I felt guilty for assisting in her being so drugged;
she couldn't easily communicate. I often wondered if she really wanted
the drugs. It was a big dilemma for all of us. She hadn't talked much
for quite a few days, when she opened her eyes:
Elizabeth: What's going on?
Mom, similar to five days earlier: I hear the most beautiful music
and I see all these colours.
Elizabeth: Really? Take a look at them Mom.
Mom: There are all these colours and music. It is so
Then she went back inside and I encouraged her to see what she was
seeing and feel what she was feeling and hear what she was hearing.
She went deep inside for quite awhile. She seemed very far away. She
had apnea breathing, which is common; long intervals between breath
intakes. The pattern would change; 40 seconds between breaths, then
shorter intervals, then her breathing slowed way down, 60 seconds
intervals between breaths.
Mom, coming out of the coma state: What am I going to do with you
girls? You are such beautiful girls. You are such good girls.
Elizabeth: I don't know, Mom.? What are you going to do with us?
Mom: I'm just going to have to love you to bits. Then she went
A story about oud oil: Apparently people use it in death rituals in
various places in the world. It's an essential oil; it kind of smells
like death; very earthy, and very ethereal, with low and high notes.
A few days before she died, my sister Lynn and I were doing
energy/bodywork together with Mom. Running our hands over her "energy
body", trying to comfort and soothe her a bit from the ravages of her
disease. We would crack jokes and reminisce in front of Mom. We
thought maybe she was hearing and getting a kick out of us. She was
completely gone from normal consciousness. I opened the vial of oud
oil and wafted it around her body. At the same time, my sister was
stroking it up and down my mother's body, moving it towards her heart.
We sang, prayed and encouraged her on her journey.
Suddenly, Mom came out of her coma state, said, I LOVE that smell!?
What is it? I LOVE that smell. And then she went back inside
My Dad was really sad to be losing Mom. Every night, when he kissed
her he would say, "I love you, Mother." (they called each other Mother
and Dad) and she would come to consciousness and answer, "I love you."
This happened every night, up until the last few nights. Then when she
could no longer speak, her movement signals would get stronger when he
told her this, even on the last night.
Most of my life I remember my mother wanting my father to tell her
that he loved her. He never would. He would only say, "I'm still here
aren't I" It drove her crazy. He really learned how to express
love during the last few years of Mom's life. He began to tell her
daily that he loved her. It was very touching.
This is my belief: I think Mom took 16 days to come down from the
drugs, after she died, for her consciousness to clear - or whatever it
is after we die. I say this because that is when she came to "visit".
She came back to Erica, our daughter. Erica had gone to bed, and was
just on the verge of sleep. I went to bed; my husband Wally was close
to sleep as well. I was aware that I felt odd, like someone else was
in the room with us. There was a lot of "energy" present, that's the
only way I can describe it. Then I felt a weight on my chest, as if
someone was sitting on me. I sat up and began praying.
Elizabeth: Wally, there's something weird going on. Do you feel
the energy in the room?
Wally: Hmm. Go to sleep. He didn't want to wake up.
Elizabeth: No, I'm not kidding. Wake up. There's definitely
something going on.
Wally: What are you talking about?
Elizabeth: I think my mother is here. I was beginning to feel a
little anxious, when suddenly, I heard Erica's door open down the
hall, and she came running to our door, terrified.
Erica: Jumping in bed with us: Nana's in my room!
Wally immediately bolts upright in bed.
Elizabeth: What happened?
Erica: I was lying in bed when I saw something hovering over me!
It's Nana; I know it is. She's come to see me, but it's scary! I'm not
going back in there. I want to sleep with you!
Wally: I'll go check it out. He walked into Erica's room,
but hurries right back out again. The energy there was too strong for
I'm praying the whole time, as the "energy" seems angry, hostile,
confused. Erica is very frightened. Wally says, "Okay, I'm going back
in there, and I'm going to have a talk with her." He goes in Erica's
room and we hear him exclaim something in regard to the intensity of
the experience. He's in there for awhile, praying, communicating with
my Mom. He finally asks her for her forgiveness, if we've done
anything to hurt her. He also tells her we forgive her, too. He tells
her that she has died, that she is no longer in her body the way she
was before. The whole experience lasted about 1 1/2 hours. After she
left, we finally fell asleep. We woke up the next morning,
My mother was "obsessed" with Erica, adored her. Her only grandchild,
and they shared the same birthday. It was hard on Erica sometimes, to
have so much focus and expectation put on her. My mother had a lot of
big issues that she never really worked through, I think. She had a
lot of unexpressed anger, because she hadn't had all of the life she
had hoped for. No one was allowed to talk about the fact she was
dying, and she had a lot of fear around it. Bottom line, she did not
want to die.
I hesitantly told my Dad and sisters about the experience we'd had.
Dad told me that he had also had a "visit" from Mom. He had gotten up
in the middle of the night to go to the bathroom. As he walked down
the hall, he felt someone brush up against his arm. That was the only
time, around the same time as our visitation, and he wished that she
would come again to see him.
I've studied spirituality for years and read tons of books on death
and dying. Some spiritual teachers believe that all we take with us
when we die, is our consciousness. If that's true, and your mind is
heavily subjected to consciousness altering drugs while dying, then is
that helping you in the big picture of life, death, transcendence?
I feel it took my Mom 16 days to get the drugs out of her system after
she died. A part of me wishes she had been more open to working with
her awareness, her symptoms, her relationships with others, herself,
and the reality of her death. I wish I could have done more to help
her. I also think we did the best we could. I feel she did the best
she could. I hope she's content, wherever she is now.
Copyright 2002, 2006 by the author
Used with Permission
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