ELIZABETH'S MOTHER

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 antipsychotic drug).

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?

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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 praying.

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 time.
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.

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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 beautiful.
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 away again.

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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

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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 him, too.

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, exhausted.

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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