Author & Writer
A Story from Edy's Life
My Beloved Sister's Death, part 1
Pat's Melanoma
I have been interested in the subject of death and dying since attending a ten-week class with a group from my church back in 1978. At the end of the class I read a book given to me by a friend who also took the class. The book was titled The Hospice Movement: A Better Way of Caring for the Dying and was written by Sandol Stodard. After that introduction, I took the hospice training, became a volunteer, and have since then sat with dying people with various hospices. Last fall I sat with a friend during the six days of his dying process. It was, as it usually is, a mysterious, loving, peaceful, and amazing experience. Now I am sitting with my sister Pat on her journey towards death! This first blog, the first of five, briefly describes Pat’s medical issues and the progression of her disease of melanoma. Pat is six years older than I and has been challenged by melanoma tumors for the past five years. It started with a malignant mole on her back near the shoulder blade on the left side. This was removed surgically, and a PET scan showed no tumors anywhere else. Soon after she developed a chronic cough, and four months later a PET scan showed a tumor in her left lung. She had surgery to remove this tumor, and when another PET scan showed no other tumors, no radiation or chemotherapy was recommended. At this point, she began to receive PET scans every six months or so. Nearly a year went by before a tumor was discovered on the left side of Pat’s chest near the clavicle. She underwent another surgery. Once again, a subsequent PET scan showed no other abnormalities, but six months after this third surgery a tumor appeared in her brain, on the right side behind her ear. During the operation on her brain, the sac around the tumor was nicked, but the surgeon believed that she was successful in removing the cancerous material. Pat recovered remarkably well after this surgery, went home, and was up eating and drinking normally. She resumed her usual routine which included taking walks around the neighborhood in the morning and evening of each day. When the surgical site was sufficiently healed, she began radiation to her brain to ensure the cancer had been eradicated. All of the surgeries previous to this had not incapacitated her, but following the radiation she went to bed and slept long hours during the day and night. She suffered from incredible itching when her hair fell out and began to grow back. It was curly and dry and very short, and she was very unhappy about it. Depression set in and Pat began to fail physically and mentally. Nine months after the radiation treatment she was diagnosed with “early dementia” and struggled with memory difficulties, especially short-term memory. She would get up to eat meals at the table but went right back to bed. She also seemed increasingly depressed although this was not diagnosed. A year after the brain surgery, a tumor was found in her right buttock. She underwent yet another surgery after which she began having difficulty walking and was given a walker. She complained of pain in her right buttock and hip. As that year progressed she became more and more unsteady and began to fall. In one fall, she bumped her head and that night complained of head pain. Her husband Dave called the doctor who recommended that she be taken to the Emergency Room where she received tests and was admitted to hospital. She was diagnosed with a “brain hematoma” and was treated for that. She stayed in an ICU bed for six days at the end of which time it was determined that she could not return home because she was not strong enough. She was admitted to a nursing home that had a “rehab unit” where physical, occupational, and speech therapies were administered for and additional six days. She was unable to participate in the therapies because of her cognitive disabilities, and the family was told that she needed 24 hour nursing care. At that point they brought her home under hospice care and hired private nurse aide caregivers to attend her fourteen hours each day. When I heard this news I decided to stay with Pat and Dave. I wanted to be with them to help any way I could. I believed that my expertise as a physical therapist in geriatrics and my activities as a volunteer with hospice patients would be of service to them. And my love for my sister Pat would benefit all of us. I moved into their home to be with them during this final incredible journey together. In my next post I will discuss my emotional reactions to Pat’s diagnosis.
My Beloved Sister's Death, part 2
My Emotional Response
In November 2012, I returned to Northern California, where I grew up, for a visit with my four sisters. Pat, the eldest, arranged for us to meet at her friend’s cabin overlooking the Pacific Ocean. It was a beautiful spot, high on a mountain top, looking through tall evergreens to the ocean far below. We had a wonderful time sharing memories: stories of our childhoods, our parents, and our lives, with lots of laughter, tears, and fun. During that time, Pat shared with us that she had had a mole removed from her back, and the biopsy showed it was melanoma. I did not react at the time; my reaction set in four months later when Pat was told she had a tumor in her left lung, also melanoma. I felt shock, despair, and grief. I knew that our mother had died from melanoma when I was seventeen, a senior in high school, and I remembered how horrible that was for me. No one talked to me about her illness nor her dying — not before, not during, not after. Years later I discovered I had never grieved her death. I found a therapist and did the necessary grief work and began to heal that wound. Now, suddenly, I was faced with a similar situation with my sister. Pat was beloved to me. She was my big sister. She cared about me and included me in many wonderful events in my growing-up years. For example, she shared her horse with me even when I was very young, five or six years old. She took me to rodeos with her in the summer all around the northern California town where we lived. When I was in college she sent me money with which to buy small incidental things, such as a new pair of shoes. Her home became my home-away-from-home after our father died. I did not want her to die from melanoma! And I especially did not want it to be in secret; I wanted to know what was going on and to be able to talk with her about it. My despair led me to find a therapist to work out what was going on in my psyche. I discovered that I was once again grieving, and this grief was compounded by incomplete healing of the grief of my mother’s death. We began by talking about my mother’s death and my delayed grief process. In sharing the events following that loss, as well as the events during the subsequent months as I finished high school, I realized there were several significant events that were traumatic for me. I had not understood the overall impact they had on the rest of my life. I told the therapist that I used to play violin. I started learning the violin in third grade when all elementary school children were allowed to choose an instrument. I chose violin because my mother played violin. I became very good at it. I was concert-mistress in the string orchestra in high school most of my four years. My debut during my senior year was to play in the orchestra concert with another violinist; I played the first violin part of JS Bach’s Double Violin Concerto. That year I practiced my violin in my bedroom on the second floor while my mother lay ill in her bed on the first floor. After her death, several people told me how much she enjoyed hearing me play while she lay dying. However, after my mother died, I quit practicing. I was supposed to learn the music for the California State Orchestra where my music teacher had arranged for me to play. I didn’t learn the music, and I performed very badly during the concert. My music teacher, whom I dearly loved and wanted so much to please, was disappointed with me. He stopped giving me private lessons and recommended another teacher whom I didn’t like. He also decided that the other three players in the first violin section of our orchestra needed a chance to be concert master/mistress and I had to move to the back of the section. I was devastated. The unrecognized and unexpressed grief over my mother’s death threw me for a loop; because I didn’t know what to do nor how to ask for help, not even knowing I needed help, I was unable to function properly. My father bought me a violin for a graduation present, and I loved it. I carried it around with me over the next 30 years without playing it much and then, finally, stopped playing altogether. My therapist asked me, “What do you think would happen if you picked up your violin and played it now?” I responded, “I would probably sound horrible!” A few days later, I did get out my violin and music and tried to play my favorite piece, the Double Violin Concerto. I did sound horrible. But I loved playing again, such beautiful music! And I thought, “I wonder if I started playing regularly, would I sound good again?” I decided to give it a try. I took a few lessons; I played almost every day; I joined a small string orchestra; and I began to sound better and better and to enjoy it more and more. The next time I went to California to visit Pat and my other sisters, I took my violin along and played violin-piano or violin-flute duets with them — as we had done when we were young. It was great fun! This whole story of going to a therapist and beginning to play my violin again relates an important healing process for me — healing the grief of my mother’s death once again and at a deeper level, and opening up my heart to my sister who was apparently going to go through the same disease process. I knew that when an emotional wound such as grief is not healed at the time it happens, it lies dormant in the psyche and comes back in force when a new grief occurs. Putting down my violin was a symptom of the unresolved grief of my mother’s death; picking up my violin again, particularly during the month I was with Pat as she lay dying, became an ingredient for the healing of both grief processes. The next time I went to California to visit Pat, I sat with her, and we discussed my concern that her disease might be handled the way mother’s was – in secret. I asked her if she was willing to be totally honest with me about what was going on and what she was doing about it. Pat agreed to share her journey with me. I began to travel to California regularly to be with her and to support her as best I could for the next several years. It has been a bittersweet journey to the end. The path was rough at times, painful for both of us, and sometimes mysterious. It was not as easy to be honest with each other as I had hoped, but we continued to try, and I feel very grateful for that. I give thanks for her presence in my life and am grateful that she allowed me to consciously and intentionally join her often as she moved through the rest of her life.
My Beloved Sister's Death, part 3
The Journey Begins
Week One: I arrive on Wednesday, February 1st. The house is full of people: my sister Pat and her husband, Dave, their younger son, a grandson, a daughter-in-law, Dave’s sister, and me. Pat lies in a hospital bed set up in their bedroom; the king-sized bed is in the storeroom; a single bed for Dave is next to Pat’s. Pat sleeps most of the day and through the night. She has been doing that for the past couple of years, ever since she received radiation of the brain following surgery to remove a melanoma tumor. When she is awake, she is still able to talk a little — some of it coherent, some confused, some not making any sense at all — a condition attributed to “dementia.” We don’t know yet what causes dementia, but it seems safe to say that a brain tumor, surgery, radiation, and recovering from all of those by going to bed for the better part of a year might have contributed to Pat’s dementia. Sometimes she still wants to get up and her son is strong enough to help her into a wheelchair. He has to lift her manually and shift her from bed to chair — hard work and not so good for his back. When he returns to his home a couple of days later, we are unable to do that, so she remains in bed. However, she does not seem upset by this turn of events; she appears to prefer to stay in bed. Since Pat no longer feeds herself, we offer her simple meals a couple of times a day: a bowl of soup, a scrambled egg. We try foods that are nutritious and that she likes. She drinks water and a protein drink between meals. We reposition her in bed several times a day and make sure she stays clean and dry. She wears what is called an “adult diaper” or “brief” and seems embarrassed whenever we need to change it. It is sometimes difficult to make her comfortable no matter what position she is in. She does not move herself in bed and often resists our attempts to move her from side to side, and she doesn’t like lying on her right side. This must frustrate her enormously, as she was always an active person, loving sports such as tennis, swimming, hiking, skiing, bicycling. Horseback-riding was a life-long passion; she always had a horse or two in her life. And the family back-packed into the mountains together for years. Pat complains of pain much of the time from a years-long challenge with what she called “sciatica” in her right buttock. Plus she had a recent surgery to remove a tumor in the same area. She is on a regimen of medication three times a day. I am shown how to prepare the medications she takes, two narcotic pain pills and two stool softeners. These need to be crushed since she can no longer swallow pills. They have a bitter taste so we mix them with chocolate pudding. I take over that role. The oldest daughter, who lives closest, comes once or twice a week. She partners with Dave in planning and making decisions about Pat’s care, always with consultation of her three siblings. She is also the primary contact person with the hospice and home care organizations. Next to Pat’s bed is a music system that we tune to Pandora to play hymns, soft classical music, or cowboy tunes throughout the day. We believe Pat would like this if she were able to express an opinion. She has always loved music — classical, big band, blue grass, cowboy, gospel — you name it, she loved it. She played flute as a young woman and continued to play the grand piano in her living room when she was still mentally able to read the music and to coordinate brain and hands well enough, i.e., before her dementia became a problem. By Saturday everyone else has gone home; only Dave and I remain. We assist the two nurse aides who come each day to care for Pat. They are here fourteen hours a day from 6 am to 8 pm. Dave and I take turns sitting with Pat, holding her hand and talking to her, reminding her of good memories, massaging her feet and hands, making sure she is warm enough or cool enough. She has always been a social person and loves having people around. Her home has continually had the welcome mat out, and she loved cooking and making meals for gatherings of family and friends. Outside, flowers she planted and tended bloom along the front of the house and in pots on the deck. Dave continues to work in the yard whenever he can. However, it has been raining a lot and this keeps him inside most days. He continues to go down to the coffee shop every morning to join his coffee buddies and talk about the latest news: what’s going on politically, sports, fishing, you name it. I get outside daily to walk in the rain or, if it is sunny, to ride a bicycle down to the river and back. It feels good to be here, to be with Pat and her family, and I am grateful for the opportunity to help out. We all love Pat and don’t like to see her in this diminished state, but we also realize that this is the way it is, and we want to keep her feeling as loved and comfortable as we can. Week Two: Most of the caregivers are wonderful, skillful, kind and gentle people. They speak appropriately to Pat, explain what they are going to do with her before doing it, feed her the meals we prepare, and keep her clean, warm, and dry. A hospice nurse comes twice a week to give Pat a bed bath and shampoo; she and the caregiver change the sheets on the bed at the same time. The hospice nurse manager comes once a week and is available more often if we need her. She checks Pat’s vital signs — blood pressure, pulse rate, temperature, and skin. She keeps track of what we are noticing about Pat’s condition and helps us understand what the various changes mean. Most importantly, she sits with Dave and me to discuss how we are doing. Dave in particular seems to appreciate this attention since he is Pat’s husband and the designated primary caregiver. We usually have a friendly and informative time — sharing ideas, thoughts and feelings, as well as personal life stories. She is very good at her job, a kind and loving person. The social worker comes one day this week for a similar meeting. She spends time talking with Dave to get to know him and to find out what he and his family want for Pat. She also explains details about hospice and the dying process so that he understands what is happening and what to expect. Two of our sisters live about a three-hour drive away and have been visiting Pat regularly for the past year or so. One of them comes on Tuesday, and, after she sits with Pat for a while, we make music together, she on her flute and I on my violin. We love playing together, usually duets of Bach and Telemann. We turn the living room into a music hall, and the caregiver tells us that they can hear us in the bedroom. We hope that Pat enjoys the concert. She comes again on Friday, and we play together again, same music, same fun. Another sister comes with her that day; she brings a book to read aloud, stories about horses. Pat loved to read — it was a great disappointment to her when she could no longer do so. She needed cataract surgery but wasn’t able to have it due to her compromised state from the other surgeries. In the past, she read novels and inspiring non-fiction books, and she read the Bible every day. One of the caregivers likes to read to Pat from the Bible, usually from the Old Testament Psalms On Friday, another hospice nurse checks Pat’s bowels and finds that they are impacted, i.e. full of solid feces. One common side effect of pain medication is constipation, and when someone is unable to move around on their own, which stimulates bowel movement, it is easy to progress rather quickly from constipation to impaction. The nurse gives Pat suppositories which causes acute cramping and loosens the bowels. This is extremely painful, but effective. Pat finally eliminates a large, hard stool, and she continues to have bowel movements frequently for a day or two before returning to “normal” evacuation. It is a painful experience for us all! We add prune juice to Pat’s daily diet to try to prevent a reoccurrence of the impaction. Fortunately, Pat likes prune juice. Dave and I take a break one night and go to a movie. As I relax and watch a fictional story, I realize how intense this experience is, being with Pat, providing for her — the constant vigilance needed to care for someone who is so seriously ill and incapacitated. A movie is just the thing to give us some relief from the intensity, if only briefly. I also find it interesting to note that we don’t yet, even now, talk about the fact that Pat is dying. We just do what needs to be done day by day, moment by moment, to keep her comfortable and show her how much we love her. When Pat is awake, she still makes eye contact and tries to express herself. When she does, it feels as though she is the “old” Pat. She talks with her eyes, knows who we are, and sends us gratitude and love. But sometimes as I sit around her with one or more of her children, we quietly wonder where her mind is, where her consciousness has taken her, what her thoughts are. She is here, but not really here. It seems to me to be part of the wonder that leads to the mystery as Stephen Jenkinson states in his book, Die Wise — the mystery that is in and beyond each of us, the mystery of life and death.
My Beloved Sister's Death, part 4
Pat's Melanoma
I have been interested in the subject of death and dying since attending a ten-week class with a group from my church back in 1978. At the end of the class I read a book given to me by a friend who also took the class. The book was titled The Hospice Movement: A Better Way of Caring for the Dying and was written by Sandol Stodard. After that introduction, I took the hospice training, became a volunteer, and have since then sat with dying people with various hospices. Last fall I sat with a friend during the six days of his dying process. It was, as it usually is, a mysterious, loving, peaceful, and amazing experience. Now I am sitting with my sister Pat on her journey towards death! This first blog, the first of five, briefly describes Pat’s medical issues and the progression of her disease of melanoma. Pat is six years older than I and has been challenged by melanoma tumors for the past five years. It started with a malignant mole on her back near the shoulder blade on the left side. This was removed surgically, and a PET scan showed no tumors anywhere else. Soon after she developed a chronic cough, and four months later a PET scan showed a tumor in her left lung. She had surgery to remove this tumor, and when another PET scan showed no other tumors, no radiation or chemotherapy was recommended. At this point, she began to receive PET scans every six months or so. Nearly a year went by before a tumor was discovered on the left side of Pat’s chest near the clavicle. She underwent another surgery. Once again, a subsequent PET scan showed no other abnormalities, but six months after this third surgery a tumor appeared in her brain, on the right side behind her ear. During the operation on her brain, the sac around the tumor was nicked, but the surgeon believed that she was successful in removing the cancerous material. Pat recovered remarkably well after this surgery, went home, and was up eating and drinking normally. She resumed her usual routine which included taking walks around the neighborhood in the morning and evening of each day. When the surgical site was sufficiently healed, she began radiation to her brain to ensure the cancer had been eradicated. All of the surgeries previous to this had not incapacitated her, but following the radiation she went to bed and slept long hours during the day and night. She suffered from incredible itching when her hair fell out and began to grow back. It was curly and dry and very short, and she was very unhappy about it. Depression set in and Pat began to fail physically and mentally. Nine months after the radiation treatment she was diagnosed with “early dementia” and struggled with memory difficulties, especially short-term memory. She would get up to eat meals at the table but went right back to bed. She also seemed increasingly depressed although this was not diagnosed. A year after the brain surgery, a tumor was found in her right buttock. She underwent yet another surgery after which she began having difficulty walking and was given a walker. She complained of pain in her right buttock and hip. As that year progressed she became more and more unsteady and began to fall. In one fall, she bumped her head and that night complained of head pain. Her husband Dave called the doctor who recommended that she be taken to the Emergency Room where she received tests and was admitted to hospital. She was diagnosed with a “brain hematoma” and was treated for that. She stayed in an ICU bed for six days at the end of which time it was determined that she could not return home because she was not strong enough. She was admitted to a nursing home that had a “rehab unit” where physical, occupational, and speech therapies were administered for and additional six days. She was unable to participate in the therapies because of her cognitive disabilities, and the family was told that she needed 24 hour nursing care. At that point they brought her home under hospice care and hired private nurse aide caregivers to attend her fourteen hours each day. When I heard this news I decided to stay with Pat and Dave. I wanted to be with them to help any way I could. I believed that my expertise as a physical therapist in geriatrics and my activities as a volunteer with hospice patients would be of service to them. And my love for my sister Pat would benefit all of us. I moved into their home to be with them during this final incredible journey together. In my next post I will discuss my emotional reactions to Pat’s diagnosis.
My Beloved Sister's Death, part 5
Joining in the Collective Unconscious
As I sit beside Pat’s bedside, I wish I could ask her how it is with her as she is dying. Or rather I wish she could answer that question. Where is her mind in terms of consciousness? How does dementia affect her experience of dying? How can Pat face her death consciously if she is not conscious? Maybe she doesn’t want to face her death consciously. Just because I want that for myself doesn’t mean she wants it for herself. I wonder sometimes if people develop dementia so that they don’t have to consciously face their deaths or even the fear of their own deaths. I don’t know of anyone who has asked that question but me. It seems to me that after Pat’s fourth surgery — this time for a tumor in her brain — and then radiation of the whole brain — she couldn’t face the misery of pain, itchy balding scalp, inertia and fear, so she took to her bed, sleeping through most of the day. In essence she became unconscious for the better part of the last year and a half of her life. During that time, she was diagnosed with “dementia.” I have explored the issues of conscious living and conscious dying for many years. In addition to reading Stephen Levine’s book Who Dies? An Exploration of Conscious Living and Conscious Dying, I also began to study and practice Buddhism, meditating in silence and allowing my conscious mind to move into active awareness of the Unknown. I used different guided meditations as well and have especially enjoyed those from The Monroe Institute (TMI). Those meditations intentionally explore conscious states outside the physical body. Robert Monroe developed an audio technology he called Hemi-Sync®, short for Hemispheric Synchronization®, which assists the brain in shifting from conscious awareness to a deeper state of awareness and altered states of consciousness. (You can learn more about this by going to TheMonroeInstitute.com.) I also contemplate what Jung, among others, means by the statement that there is a collective unconscious, that all minds are joined. Does this mean that I can intentionally join my mind, my consciousness, with Pat’s? If I can, how do I do that? If I do, how does it manifest? One morning, during the third week of being here, I wonder if I can help Pat in her dying process by traveling the path in a TMI guided meditation together. Hemi-Sync is not new to Pat. As part of my study to become an Outreach Trainer for TMI, I made a video to demonstrate my ability to teach this process to others. I asked Pat and Dave to be my subjects in the video. We did a relaxation exercise called “Catnapper,” which takes us through a ninety minute sleep cycle in thirty minutes. Later, Pat listened to six exercises in a TMI album called Surgical Suite, which are used before, during, and after surgery to aid in healing. These meditations include a deep relaxation process as well as verbal guidance towards a positive approach to the surgery. In addition, they benefit the listener, physically, in several ways, such as, decreased blood loss during surgery, quicker recovery from anesthesia, decreased pain following the surgery, and faster healing. Pat used this album during several of her surgeries and found them helpful. Here is what I do this morning. The caregiver arrives at 6 am, as usual. Dave helps her get Pat ready for the day and then goes to his coffee group. I awake at 6 but stay in my bed while I meditate. I wonder if Pat might enjoy an exercise from the TMI Going Home album but feel reluctant to offer it since she can’t tell me if she wants to or not. However, since our minds are supposedly joined I will mentally invite her to join me. She can come along or not. Perhaps she can still choose from her state of questionable consciousness. I select a guided meditation called “Touring the Interstate.” This meditation is one of a series that explores consciousness beyond the physical body using images that Monroe himself experienced during his own explorations. I silently invite Pat to join me. I imagine that we hold hands and move through various altered states of consciousness together. Monroe calls them Focus levels. They are numbered to distinguish one from the next and are hierarchical — the higher the number, the higher (or deeper) the altered state. I enjoy these explorations, and my hope is that Pat, too, will experience being out of her body in a positive way which may alleviate any lingering fears she might have about leaving her body behind when she dies. And so “we” begin. I follow the instructions to move to Focus 10, the first altered state, called “Body Asleep, Mind Awake.” This is a state of deep relaxation or physical sleep, while the mind is still aware of what is happening. I lie on my back, and as I move from Focus 10 to Focus 12, “Expanded Awareness,” I imagine that the space to my right is opening up to infinity, then the space to my left is expanding, then extending from my feet outward and away from my body as well as outward through the top of my head, then in front of me (above the bed, beyond the ceiling and into the sky), and, lastly, the space behind me (below the bed, through the floor, down into the center of the earth and beyond). I am surrounded by and upheld in the vast spaciousness of the universe. I feel that I am part of this space. I invite Pat to experience this with me. The next level we target is Focus 15. I imagine that we climb a circular staircase inside a tower, through 13, 14, and into 15 which appears as a large, round room with various computer-like machines on tables around the walls. Monroe calls this “Edge of Here/Now” — he says we are at the outer-most edge of time in human experience. This seems to be a control tower and a way station on the path to more awareness of who we truly are (according to Monroe), conscious beings on a great adventure into altered states of consciousness. We are then instructed to count from 16 to 21. I learned during a previous experience with this process to imagine moving through the colors of the rainbow: red, orange, yellow, green, blue, indigo, violet, and into bright white light. I use this imagery again this morning. When we reach 21, Monroe tells us that we are at the “edge of time and space.” We are getting ready to move out into consciousness that is beyond day-to-day human experience, and I reassure Pat that it is safe and wonder-filled. From Focus 21, we are guided to continue to move outward again. Focus 22 is a state of human consciousness that is an area of confusion, being out of the body yet still aware enough to question what is happening. Focus 23 is filled with a jumble of thoughts and feelings. Focus 24 holds our belief systems from human experience, usually those of a religious nature. Pat has a strong faith in her Christian God, Jesus, love and goodness. I wonder if she might experience her beloved Christian Beings here and want to stay. Monroe states that some people get “stuck” here in their religious beliefs. I suggest to Pat that she check it out and then come with me all the way to Focus 27 and see what that is like. We move through the next three Focus levels. Focus 25 contains not only religious beliefs but also other human belief systems that we can explore. Focus 26 is called a “Bridge” to take us beyond human thoughts and beliefs into Focus 27, which is called “The Park.” This appears as a beautiful place much like earth with tall trees, green grass, bushes and flowers, and a stream of running water. This is our destination for this exercise. It is a “place” I have visited many times in the past using these tapes, CDs, and at a week-long retreat specifically created to learn about this level of consciousness that I attended at the TMI retreat center. Monroe describes “The Park” as a place where we can rest for awhile after leaving our physical bodies behind, where we can join with loved ones who have died before us, where we can review this life we have just left and begin to look at what lies ahead. He says we have choices as to where we want to go next, what we want to do. We are guided through this process by wise beings who have gone before. In this morning’s meditation, Pat and I stay in the park to experience it, explore it, and see what it has to offer us. I relish the experience once again and love sharing it with her. After a period of “time” we are instructed to return to normal waking consciousness by following Monroe’s voice in counting from 27 down to 1. When we reach number 1, I tell Pat, “Thanks for coming with me, I hope you enjoyed it,” and imagine us back in our respective beds. I thank Robert Monroe for creating this album, and for narrating it, and for all the folks at TMI who helped to create it. Is this helpful to Pat? I have no way of knowing. But I do know it is helpful to me, has been in the past and will continue to be in future. I can let go of the fear of the unknown and actively seek new adventures in the realm of consciousness. This time, I believe that by bringing Pat along with me on this journey, at least in my mind, I am able to help her understand that we truly are more than a physical body. I am able to help her experience that, to know that our spirits move on, live on, seeking new contacts and connections with other realms, other spirits, spiritual leaders and teachers of whatever ilk. Monroe says that experiencing something moves our understanding from believing to knowing. I have found this to be true, and I know that it is good. Consciously knowing is good. It helps me to live more consciously and, hopefully, when it is my turn, to die more consciously. I hope and pray that Pat, too, now knows this and can die less fearfully and more peacefully.
My Beloved Sister's Death, part 6
The Last Day
The last day: Dave knocks on my door at 5:30am. He says Pat is coughing and he doesn’t know what to do to help her. He raises the head of her bed, but this doesn’t help. We lower the bed to half way up and make sure she is lying on her side with her airway as clear of obstruction as possible. I give her morphine. Her lungs and throat sound full of fluid. Does she have pneumonia? She does not have a fever. Should we call hospice? It does not seem like an emergency. I give her more morphine and we reposition her again. In the next hour I give her morphine four times and another one hour later. Gradually her constant coughing subsides and occurs only occasionally throughout the day. Her breathing is rough, sometimes sounding like a rattle, sometimes like a gurgle. The fluid continues to sound like a problem, but there is nothing else we can do. Katie arrives and we sit around Pat’s bed, talking, singing, remembering, praying. Our favorite caregiver stays all day and into the evening. She loves Pat too and wants to be there with us. As evening comes along Pat’s breathing slows into a pattern of 4-5 breaths, 4-5 seconds of silence, and then moves into quieter and quieter breathing. We reposition her gently from one side to more on her back, the head straight, a pillow under her knees or between them and a smaller pillow under her ankles. At 7pm Pat appears to be comfortable and is breathing quietly and regularly. Her breaths get shallower and shallower, quieter and quieter. Katie is sitting next to her head, gently talking to her face, holding her hand, and suddenly she says to me, “Go get Dad.” I find Dave and Bill at the dining table eating from a large salad made by Sandy earlier. I tell them to come. Dave sits beside Katie. The rest of us stand at Pat’s bedside when she takes her last breath. We stand and watch, expecting another breath to come, but it doesn’t. I suggest that someone say a prayer. Bill does: a prayer of gratitude and love; Dave does: a prayer of thanksgiving and love; I do one too: to God the creator of all that is: a prayer of gratitude, thanksgiving and love for a wonderful sister, wife, mother, grandmother and friend. It feels such a fitting thing to do. We call hospice; they send a nurse who notes the time of her death, calls the mortuary to come pick her up, throws out the prescription medications, and helps Katie and Sandy dress her in an outfit that Pat loved — including one of the hats that Dave bought for Pat when her hair fell out from radiation and she was too embarrassed to go out with a bare head or very short very curly hair. She loved the hat too. Believe it or not, she looks quite dashing! We then sit around the bed once again, talking, singing, remembering, laughing, and praying. The mortuary arrives and takes Pat’s body away. We are all exhausted. We go to bed. It is the end of this journey with Pat. She has gone on to whatever is next — she and her family believe that she has gone to be with her beloved Jesus and powerful supportive loving merciful God. Her body is at rest. Her spirit is probably rejoicing. We all know that our journey of grief and mourning will continue for awhile or maybe for a long time, but at this moment we too are at peace, maybe a little relieved that the long sometimes painful, sometimes difficult, sometimes rocky uncertain mysterious travail is done. Next step will a Memorial Service in Pat’s church. But that is for tomorrow…
My Beloved Sister's Death, part 7
After Pat’s death
The day after Pat died, Dave and his children began planning a memorial service for her. She and Dave had previously decided on cremation but that was the only plan thus far. Dave called the minister of their church and was told that it usually took three weeks to get all the details arranged. A couple of days later the family met with the minister to discuss what kind of service they wanted and how they wanted it to be. They chose a ritual that is not often done in our culture any more: a service in the sanctuary of their church, an established liturgy of favorite hymns, readings, prayers, and a sermon. They also chose to include brief eulogies from four family members and one good friend. A lunch reception would follow the service. They discussed flowers and special music. When asked, the family responded that perhaps a hundred people might attend; the minister thought it might be closer to three hundred since Pat and Dave were so well loved in the community and in the congregation. (At the reception, a member of the food staff told me that they served 276 lunches.) Having three weeks to organize things also allowed distant family and friends to arrange to come. The family asked me to deliver one of the eulogies as a representative of Pat’s siblings and birth family. I was honored to be asked and began to work on what I wanted to say. For the next two weeks, I went to visit my sisters who lived in our hometown 200 miles north. When I left Pat and Dave’s home, I felt a twinge of regret and sadness, and I wondered what it would feel like to return and my beloved sister Pat not be there. After arriving at my youngest sister’s home, I felt disoriented and unfocused. I talked about it with my sister (as I was wont to do when feeling out of sorts), analyzing my feelings and behavior. This is a process I have used for many years ― investigating what I was truly feeling, on the surface and in my depths. I realized that I was grieving ― not only Pat’s death and the loss of her presence in my life but also the totally focused intensity of emotions and activity while taking care of Pat during the last month of life of her life. I recognized, once again, that “this is the first day of the rest of my life.” I needed to remember to take it one day at a time, day after day; and to be gentle with myself as I moved through the tangled emotions of grief. This grief was definitely different from other griefs I have experienced. When my friend Bill died, I realized that I would miss him but not so painfully. I would remember him with gratitude for our friendship but not with the excessive yearning that sometimes comes with the death of a loved one. It was different because he had lived a good long life, and it was time for him to leave this earth. When my son Bobby died thirty-two years ago, a suicide, my grief was horribly painful and difficult. It took me years of grief work, study, and realization, to reach a degree of acceptance and equanimity over the loss of my beloved son. Even now, I feel a deep yearning from time to time, wishing that things in the past had been different, that Bobby might somehow be alive and present in my life. (I plan to share this with you in more detail in a future blog.) My grief over Pat’s death was mitigated somewhat, I think, by a couple of factors. For one thing, it was such a joy and honor to be present and able to assist in the process of her living and dying during the last month of her life. It is such an amazing and powerful experience to witness a dying like this ― at home in her own bedroom, surrounded and cared for by her husband and family. This is something we don’t see much of in our current death-phobic culture. For another, I had already faced and accepted that Pat had a diagnosis that was likely to be terminal and that she was failing physically and mentally as a result of the disease and the treatment that she received to eliminate the disease. I had been in a process called “anticipatory grief” ― anticipating the outcome, i.e., death, and letting go a little at a time. Accepting and letting go are part of the grief process, and doing it gradually before the death, sometimes makes it a little easier at the time of death and after. Lastly, it was a privilege to spend so much time with Pat’s husband and family, a family that loved Pat deeply and were able to support her with this kind of death (might I call it a “good death”?); it filled my heart and my life with love as well. I felt loved and honored and appreciated. I took that feeling with me as I went on into the rest of my life. When I returned to Pat and Dave’s house I was, once again, more settled and centered, ready to be of service in any way I could. Jenkinson states that a hundred years ago, depending on where our people lived, the chances were good that through the course of our lives and from a very young age we saw a lot of death. Deaths in the home were the norm a hundred year ago. Since then, three trends have occurred. One is that our medical system has taken the hands-on work of caring for the dying away from family and friends. This has led to the placing of dying people in hospitals or chronic care facilities. At the same time the funeral industry has taken over postmortem arrangements and events. All of this was fueled by our growing inexperience with death in a personal and up-close way and, hence, our fear of the unknown ― the dying process and death itself. As I contemplate the events of those four weeks with Pat and her family, I realize that I witnessed a remarkable dying and ritual for our time and culture. A recent study showed that approximately 80% of Americans would prefer to die at home, if possible. Despite this preference, 60% of Americans die in acute care hospitals, 20% in nursing homes, and only 20% at home. Increasing numbers of dying patients are using hospice care and even those patients often are not referred to hospice until the very end of their lives when they might have benefitted from a longer period of hospice assistance had it been offered earlier. I have been part of this growing hospice movement, and I value being able to assist in this way. Hospice care, an extremely loving and supportive family, and the wonderful caregivers who came daily, provided Pat with the love and personal care needed for her to have a relatively pain-free and seemingly fear-free dying in her own home. I am so fortunate to be part of this remarkable family who are not death-phobic. I feel so grateful for the privilege of being involved with this life-affirming process during my beloved sister’s dying and I recognize that this flow of life-giving energy continues into my grieving. My favorite teachers, Stephen Levine, Elisabeth Kubler-Ross, Ram Dass, Jack Kornfield, Gerald Jampolsky, Susan Trout, and Stephen Jenkinson, to name a few, all advocate facing and knowing our fears, particularly our fears of dying and death. They all teach us ways to do that and this includes rituals, such as a memorial service, that give our lives meaning. The goal is to know that there is nothing to fear. Dying and death are inseparable parts of living and life. If we live our lives wisely and consciously, we will surely die wisely and consciously, and without fear. Stephen Jenkinson states that wisdom comes from learning, experiencing, and knowing truth. Wisdom makes our lives richer, more alive and conscious, more compassionate towards ourselves and others. I believe that Pat’s dying was done in a manner that was wise, loving and compassionate. It was rich in demonstrating to us how to die wise. And her memorial service was meaningful and heart-felt, a ritual of remembrance that brought her life into vivid awareness and gratitude for its goodness and truth. Her family contributed to all of this by facing her dying and death with equanimity and without fear. Being with her and all of them has made my life richer, and wiser; I am better able to live and love and offer assistance to others in their dying process.