The Final Chapter in my Mom’s Life

10882215_10205497374453670_2091843644529081995_nMy sister, KayAnne, and I believe that the care and treatment our mother, Mary Ann, received at Marin General Hospital, in Greenbrae, California, beginning in the Emergency Room on Thursday, July 3rd, 2014, and on the fifth floor after she was admitted that evening, contributed to the hastening of her death after they sent her home on July 9th.

My mother had a very bad experience with Marin General Hospital that time, and we were appalled at the degraded level of care she received that early July, at Marin’s community hospital.

Mary Ann was 77, and had been under treatment for stage 3 lung cancer. She had been diagnosed in March, 2014, after complaining for two years to her long-time primary care doctor, Dr. Patricia Bauman, at her monthly appointments, of pain in her chest, difficulty breathing (she called it, ‘Breathing pain’) and other symptoms. Starting in November of 2013 she lost her appetite, resulting in a drastic drop in weight.

But for two years Dr. Bauman had somehow missed all of these signs for lung cancer, despite knowing that my mom had smoked cigarettes for most of her life, and had finally quit only 13 years previously. The doctor had ordered test after test: a stress test, an upper GI test, a colonscopy, etc., looking for the cause of my mom’s pain and symptoms, except one test which would have shown the problem. That would be a CT scan of her chest, which was finally taken mid-January at Marin General Hospital, a few days after my sister and I took my mom to the ER because of her severe pain, nausea and weight loss.

On January 4th, 2014, my sister and I took my mom to the Emergency Room at Marin General Hospital. Based on my mom’s complaint of chest and abdominal pain, loss of appetite nausea and loss of appetite, the ER doctor ordered a chest Xray. After reviewing the Xray, the ER doctor came back into the exam room and, quite discompassionately, told the three of us that my mom had a very large cancerous tumor in her lung.

My mom, naturally, was shocked, and quite frightened by this news.

The CT scan, taken a few days later, which the ER doctor ordered, confirmed the mass.

Knowing that my moMary Ann at 16m most likely had lung cancer, starting on January 6th I tried to get an appointment for her with Dr. Gullion, a highly recommended oncologist at Marin Specialty Care, so that my mom could get started right away on a treatment path. Because, you know, time was of the essence. However, the good doctor’s front office refused to schedule an appointment until she got a diagnosis from a biopsy.

When I explained to Dr. Bauman that a biopsy was necessary, she referred my mom to a pulmonologist, Dr. Darya Soto, for further testing. We got an appointment with Dr. Soto fairly quickly and Dr. Soto promised us that she would refer my mom within days to a pulmonary specialist at California Pacific Medical Center for a guided ultrasound biopsy procedure.

And again, because you’d think that time was of the essence – as the ER doctor had told us the mass was ‘very large’ – it took over TWO WEEKS and multiple calls to Dr. Soto’s office before she got it together to make the referral.

My mom had had a very difficult, at times tragic, life, and over the years, she had become unable to care for herself in significant ways. She’d lost her husband early when he’d died a violent death at a young age, and then she’d lost her only son years later when he’d died of an incurable illness.  My mom had switched roles with my sister and myself decades before, and we had learned that in order to get her to do certain things for her health or wellbeing it was necessary to encourage her, cajole her, bribe her, plead with her and sometimes lecture her sternly. She was stubborn, though, if she didn’t want to do something, she didn’t do it, and nothing could change her mind.1506602_10152173312979474_1160449367_n

For decades KayAnne and I had to aggressively advocate for her, for example to get her approved for Social Security disability benefits, subsidized housing, In-Home Support Services and other resources.

Beginning on January 4th, 2014, I became an even more fierce advocate for my mom, finding out everything I could that would help her, making appointments, researching doctors and support services, etc. Looking back and reflecting, I know that there were things I missed, or could have done better, or should have realized. But I was also a full-time caregiver for my husband, who was fighting for his life with a mysterious illness that turned out to be chronic neuro-Lyme. I am so grateful that my sister was staying with my mom, she’d arrived in mid-December and with her help, we were able to accomplish a lot.

My mom had lived by herself for many years, she had a nice, cozy one bedroom apartment, and a great relationship with the landlord. My mom also had a long-time In Home Support Services (IHSS) caregiver, a wonderful woman named Shannon. Shannon told KayAnne and I that my mom wouldn’t be able to live by herself anymore, and recommended that Donald and I (we’d been staying at a friend’s house) find a two bedroom apartment. My mom wasn’t so hot on this idea, she preferred to live alone, but I went ahead and started the process to find a new home because it was obvious that she needed us to take care of her.

I asked my mom when she had last showered, and she said, “Oh, I don’t know, honey, it’s been awhile.” After I kept bugging her, she finally admitted that it had been in November (maybe), she just wasn’t up to the laborious process. It took a couple more weeks for me to talk her into helping her shower. I put the stool in the bathtub/shower, put a towel on the stool, and helped her take her clothes off, slowly. She sat on the stool, and I washed her hair, put conditioner on, and soaped up a washcloth for her. After she got dressed in clean, fresh clothes, she admitted that she felt so much better. I vowed to myself to help her shower as often as I could.Pickens Ladies

The ultrasound biopsy, done in late February (!) at California Pacific Medical Center, gave my mom a diagnosis of stage 3 lung cancer, with other hot spots in her body, including her spleen.

Finally, we were able to make an appointment with Dr. Gullion. One of the questions he asked my mother was, “Do you want us to make all of the decisions for treatment for you, or do you want to know all the options and be part of the decision process?” Knowing my mom was in overwhelm, and as her advocate, I asked her, “Do you want to know everything, and make decisions on your treatment?” She said she did.

Dr. Gullion recommended that my mom have six weeks of chemotherapy (once a week), and radiation (five days a week), and then afterward he’d check the other hot spots. Dr. Gullion assured us that a team of doctors would be overseeing her chemo and radiation treatments, she was in the hands of a great team of doctors.

We were all relieved to know that her care would be guided, step by step, by compassionate cancer treatment experts. Dr. Gullion is the founder and Medical Director of Marin General Hospital’s Center for Integrative Health and Wellness, recognized for his “humanistic connection to women with breast cancer and for his leadership in integrative oncology care.”

My mom expressed anger that Dr. Bauman had for a long time missed the signs, and had never thought to check for cancer, based on the symptoms and the chronic pain in her chest.

On Monday, March 10th, my mom began her chemo and radiation treatments. My sister and I sat with her at the Infusion Center at Marin General Hospital. A musician came in, playing a lute. A massage therapist came in and gave her a foot rub. Wow, what a civilized approach to cancer treatment! Later that afternoon I took her over to Marin Specialty Care for her first radiation treatment, managed by Dr. Joseph Poen, radiation oncologist.

We were all filled with hope and certainty that my mom was going to beat this. That afternoon KayAnne left to join her husband, Dennis, on a road trip up to Washington state, and then to head home, across to Colorado.

Tuesday, Wednesday and Thursday I drove my mom to her radiation treatments.

Unfortunately, I found out too late that due to the steroid that was put into the infusion bag to suppress the nausea that can occur from chemotherapy, my mom was not sleeping at night. This is a common side-effect from this steroid, but Dr. Gullion neglected to tell us about this. If he had, we would have told him that my mom could not tolerate not being able to sleep, and please find something else, or leave it out. I had to do my own research to figure out why my mom had such a severe adverse reaction to her treatments.

Thursday late afternoon, my mom called me and was almost incoherent. Donald and I rushed over to her apartment, and found that she was babbling, and disoriented. It was after hours, so when I called Marin Specialty Care, the doctor on call was the radiation oncologist, Dr. Joseph Poen. He called me back, and I described to him what was happening to my mom.

Dr. Poen told me that he had never heard of anything like this, and maybe it was best to get her to the Emergency Room.

We immediately put her into our car and drove to MGH Emergency Room. From the ER, she was admitted into the hospital, and Donald and I prayed for hours. It seemed like she had suddenly developed advanced Alzheimers, she had no memory of anything, she babbled, she repeated herself, she did not know where she was, the room would spin and scare her, and the doctors and nurses did not know what to do. She did know who I was, I kept asking her, but it did not seem to comfort her as much as I needed it to.

Late Friday night, March 14th, after more than 24 hours of my mom being hospitalized, the neurologist on call, Dr. Ilkcan Cogkor, was asked to assess her. The nurse on duty excitedly told me that Dr. Cokgor was brilliant, just brilliant. After Dr. Cogkor examined my mom, asking her questions in a loud voice, she told Donald and I that my mom’s dementia was indeed a side-effect of chemotherapy, radiation and advanced cancer.

Dr. Cokgor also told us that the dementia is usually irreversible.

My mom asked me to have the loud lady please stop shouting and go away. She had no clue what was being said, or why.

Donald and I kept praying, asking God to please help my mother.

From my research later on, I discovered that the steroid in the infusion bag can bring on this kind of dementia. I lost respect for the radiation oncologist, Dr. Poen, because of his assertion that he had never heard of anything like that.

This is when my mom lost her vaunted oncology ‘team’ at Marin Specialty Care. Her oncologist Dr. Gullion may have come to see my mom at the hospital, but I’m not sure. I was there with her as much as I could be, and he didn’t come to see her when I was there. The decision was made, by the supposed ‘team’ without consulting me, her daughter, to discontinue her treatments due to her adverse reaction, as apparently she wasn’t strong enough to endure any more.

When I got to the hospital the next morning, Saturday, March 15th, I found that my mom had slept for a few hours, finally, due to the stronger sleeping medication they had given her. She was somewhat coherent, and asking questions about why she was there, but still confused and repeating herself. I was overjoyed to see that she continued to recover slowly as the day wore on. She slept Saturday night, and was farther along in recovering her sense of herself. A social worker came in on Monday, and helped me find a rehabilitation hospital to transfer my mother to, as she wasn’t strong enough to go home. On Wednesday, March 19th, she was moved to Kindred Healthcare, a post-acute care services provider. She would be there for six weeks.

Kindred was two buildings down from Marin Specialty Care and Marin General Hospital. On Friday, March 21st, I wheeled my mom in a wheelchair along the sidewalk from Kindred to Marin Specialty Care for her follow-up appointment with Dr. Poen. My heart was heavy, as I knew that after her adverse reaction and hospitalization, my mom would not be considered strong enough for further treatments.

Dr. Poen told mom that there would be no more chemotherapy, and, to my surprise and to his credit, he asked mom if she wanted to continue with radiation. My mom had recovered enough of her mind to tell him that she wanted to fight, to do what was necessary to get rid of the ‘thing’ in her chest. I regained my respect for Dr. Poen, he showed himself to be a very compassionate doctor to my mother from that point on.

And thus began a new way of life; I visited her every day, and sometimes twice a day. I wanted her to have a continuity of some normalcy, to feel safe at the rehabilitation hospital, and I wanted to make sure that she received the quality of care she deserved.

Corte Madera CreekOn weekdays I would get her dressed and wheel her in the wheelchair to her radiation appointments, and sometimes, if she felt strong enough, I would push her along the beautiful pathway along Corte Madera Creek after the radiation. She came to enjoy those excursions, they added immeasurably to lifting her spirits. She would always say hello to the joggers as they ran past, and we’d make jokes to each other if the joggers didn’t respond. She’d remark on the flowers, the trees, the water, and sometimes she’d have me stop so she could smell the flowers. In the beginning, we didn’t go very far, she’d ask to turn around and return to Kindred. I’d push her a little bit farther along each time, so that she could be out in nature longer. By the end, our little excursions would last about 20 minutes.

Sometimes she would try to cancel the radiation appointment at the last moment, saying she was tired, she didn’t feel well. Reminding her that she needed to keep fighting the cancer, I would cajole her into going. The fatigue was from the radiation, and also from not sleeping well, because being at Kindred was not at all restful. Fortunately for my mom, her roommate worked hard to cheer her up.

And all the while, I was also taking care of my husband; emergency room visits, arranging doctor visits, numerous blood tests, mri’s, ekg’s, stress tests, a possible diagnoses of Central Pain Syndrome, and then finally, the correct diagnosis, chronic neuro-Lyme, a debilitating, life-threatening illness that is difficult to treat.

While my mom was in Kindred, I pursued finding a home for her, my husband and myself. We were very fortunate that a two bedroom apartment became available in the same complex where my mom lived. It was a large, beautiful apartment, with a skylight that filled the living room with light. Donald and I were happy, because bringing my mom home to a place that would be more or less familiar for her was important, it was in the same complex and the layout was similar, we felt she would be comfortable there.

Donald’s and my move-in date was April 3rd. My mom’s apartment had to be packed up, and since my husband was very sick, I was very fortunate that some of our friends helped me box up my mom’s things, and clean the apartment.

Around March 10th or 11th, Dr. Poen ordered a CT scan for mom, she was now halfway through her radiation treatments, and he was delighted to tell us that the mass in her lung had shrunk by half. My mom was so happy to hear this, and blurted out to Dr. Poen, “I love you!” Later, she admitted to me that she was very embarrassed that she had done that. The next day I brought her a cupcake from Susie’s Cupcakes in Bon Air Center to celebrate.

Her ‘breathing pain’ never really went away, though, and Dr. Poen put her on morphine and fentanyl. This new pain medication made the pain more tolerable for her, but didn’t take it away completely.

On April 3rd, moving day, my childhood friend Paul Sonnabend, owner of Hurricane Hauling, sent some of his workers to move everything from my mom’s old apartment into the new one. An angel friend, Josefina, helped us also. Donald was feeling a bit better, and we spent time setting up the apartment, putting in a small garden on the small deck, and arranging the furniture.

Sometime in mid-April, I got a phone call at 4:00 in the morning from Kindred, my mom had been taken to the hospital because she had had a heart attack. She’d been complaining of more pain in her chest, and they called an ambulance (she had a history of heart disease). I went immediately to the ER. Dr. Kao, the cardiologist on call, said that her EKG was abnormal, and ordered an angiogram. A camera was threaded through a huge incision in her wrist. I paced nervously in the family waiting room.

My mom told me afterwards that she heard the technician exclaim, “She’s got a healthy heart!” My mom was admitted into the hospital, and in her room Dr. Kao told me my mom did not have a heart attack, and that I didn’t have to worry anymore about my mom’s heart, that my mom’s heart was just fine.

My mom was sent back to Kindred, having to be very careful with her bandaged wrist, and she continued her radiation treatments. I began pestering Kindred for a release plan, I told them that she would be coming home to live with Donald and I.

Her last radiation treatment was on April 30th, and I brought her home on May 1st.

She had to have constant oxygen, and a noisy oxygen machine was set up in the hall.

She wandered aphoto(23)round the apartment, dragging her oxygen tubing behind her, getting used to the place. The layout was similar to her one-bedroom, but since it was on the top floor in the back of the apartment complex, it had a taller ceiling, with more light coming in the windows. She had been very nervous about moving in with Donald and I, but after a day or so, it seemed that she relaxed and began enjoying the attention we were giving her.

I let her sleep as much as she wanted for the first couple of weeks. After six weeks of little sleep while in the noisy rehab hospital and the fatigue that radiation treatments bring on, she needed to rest.

I cooked healthy food, and at first I pureed it to make it easier for her to eat.

I tried to get my mom on a routine, waking her around 9:30 am. Every morning, I’d go into her bedroom, and say cheerfully, “Good morning, Mumsy! Time to wake up! Here’s your tea, and your pills!” She’d reply, “Good morning, dear.” Sometimes she’d lay in bed for a while, before she got up. She had always been a late-riser, definitely not a ‘morning person,’ and although at Kindred she had to start her day incredibly early (she complained to me that they woke her at 7:00 am every morning for breakfast!), I felt it was important that she be awake during the day so she could sleep at night.

I’d encourage her to take a shower by saying, “Its shower time, Mom!” If she felt up to it, I’d put the heater in the bathroom, and help her, slowly, take a shower. I counted out her medications weekly, and gave her the pills three times a day.

I stayed as cheerful as possible, and always expected miracles.

She began a series of in-home therapies, with a flaky group of physical, speech and occupational therapists. I say flaky because they kept cancelling appointments at the last minute, or not even showing up. She did get benefit from the physical therapist, though, who gave her the confidence to go up and down the outside stairs.

Dr. Poen wanted to wait six weeks or so from the end of the radiation treatments before he ordered a CT scan to check the tumphoto(24)or. To lift her spirits, I took her to get a haircut, and to get her nails done. She loved it. For her birthday, May 16th, Shannon and I took her on a picnic to Samuel P. Taylor Park, a park in Lagunitas where my sister, brother and I had spent a lot of time camping with her when we were children. Shannon wheeled her in the wheelchair so she could enjoy the beautiful outdoors.

At home, Donald and I were mindful of her need to not feel crowded, by going into our bedroom and hanging out in there. One day she surprised me (and herself) when she told me that she was sitting on her couch in the living room, and noticed that she was lonely because we were in our bedroom! She was enjoying our company, and knowing that we were there was comforting to her.

Mom had a checkup appointment with Dr. Bauman, on June 10th, but Mom neglected to tell her (and me!) that she was experiencing painful urination. She told me the next day, and Dr. Bauman sent my mom for a blood test and urine test at Quest Labs, and prescribed antibiotics. On Thursday the pain was worse, and when I called Dr. Bauman she suggested I take my mom to Urgent Care, rather than the Emergency Room at MGH, as she’d be seen sooner and be more comfortable there. And indeed, there were few people there and my mom was seen pretty quickly. When my mom told the doctor what was going on, the cancer diagnosis, her high pain level and the painful urination, the doctor got a very concerned look on her face, and urged me, strongly, to take my mom to the Emergency Room. I took her there immediately and the ER doctor had an XRAY taken.

The ER doctor asked to speak with me in the hall, and told me that the XRAY showed the tumor in her lung was larger than ever, and there were more, large, tumors in her chest area.

The cancer had metastized, and very aggressively.

Out in the hallway the sympathetic ER nurse gave me a hug, and very sweetly said that if it was her mother, she’d make her last days as comfortable as possible, and take her to her favorite places.

I called my sister, who was back home in Colorado, and we made plans for her to fly back to the Bay Area as soon as possible. She arrived on Tuesday, June 17th.

My mom was in shock, she had been holding in her heart the news Dr. Poen had given us in March: that the tumor had shrunk dramatically.

I called Dr. Poen’s office, and made an appointment to see him. My sister and I took her there. We were beyond angry that her ‘team’ of doctors had disappeared, and I told him so. I said my mom deserved to be treated with dignity and respect, and they had failed her miserably. To his credit, he did not argue or make excuses, he just hung his head. Dr. Poen recommended that since we had lost trust in Dr. Gullion, that my mom might want to see another oncologist, and he recommended a Dr. Smith, in San Francisco.

He called Dr. Gullion’s assistant, and recommended that an appointment be made immediately for my mom to see him. At this appointment, Dr. Gullion listened to me without interruption, as I blasted him. I was so angry that this ‘compassionate, humanistic’ doctor had disappeared, with no follow-up for a patient under his care. I told him also that my mother deserved to be treated with dignity and respect, and asked where did her ‘team’ go? Dr. Gullion didn’t address any of the points I brought up in my rant, but he did suggest that another round of chemotherapy could be tried. An appointment was made for the following week to begin this new round at Marin General Hospital.

KayAnne and I asked Mom if she wanted to continue to fight, and to try another round of chemotherapy. We asked her if she felt strong enough to go through it again. She assured us that she wanted to get rid of the cancer, she said, “I just want to get better.”

We went for a consultation with Dr. Smith, and since my mom liked him and trusted him, and when he told us he was ephoto 1(6)xcited to help my mom, I scheduled her for a round of chemotherapy for her with him. I had explained to him about her reaction to the steroid, and he assured us that the chemotherapy he would use would not cause this problem. He did say that the chemicals might burn her arteries.

My mom, KayAnne and I wished that we’d found Dr. Smith first, for her cancer treatment.

At the next appointment, the chemotherapy was administered in Dr. Smith’s beautiful, restful infusion room that had an exquisite view of the Embarcadero and the Bay Bridge. My mom seemed to tolerate the infusion, there was no burning sensations in her veins.

But then it became even more difficult to get her to eat any food, or to drink enough water, no matter how much I cajoled her. She just wasn’t hungry. A week later, my sister and I took her to the next infusion appointment, but she told them she wasn’t feeling well, and she was greatly relieved when Dr. Smith said it was no problem to skip one.

We took my mophotom back home, and as it turned out she never did go back to Dr. Smith’s Center.

I called Dr. Bauman to give her an update, saying the pain in my mom’s chest was still pretty bad. She said to me, “Well, I wonder if she has pneumonia? Maybe she should be checked for pneumonia.” Clueless.

The Emergency Room of Marin General Hospital, on that awful day, July 3rd, 2014, was filled with many prisoners – with three guards per prisoner – from San Quentin Prison. A health care worker told us, privately, that MGH ER had recently signed a contract to treat the prisoners from San Quentin.

On this day, we saw too many residents of Marin laying on gurneys for hours waiting to be seen by a doctor. We know that prisoners should have access to health care, but what we saw was completely unacceptable for proper care for citizens.

Although I had brought my mother in to MGH’s emergency room because she had not eaten food for several days, and because of dehydration, I was dumbfounded when the ER nurse, after my mom had been there for three hours and had gotten only one bag of saline and a stale sandwich (which she couldn’t eat), asked my mom if she wanted to go home. This was FIVE MINUTES after the ER doctor told us that my mom was going to be admitted. I found the nurse’s behavior bizarre and unprofessional, to say the least.

The hospitalist, Dr. Brindley, came in to see her to admit her into the hospital’s fifth floor, and I explained everything to him, why we brought her in, she hadn’t eaten or had much water to drink for days.

Up on the fifth floor, after she got there late in the evening, my mom was not given any food or (unaccountably) any IV fluids by the nurse assigned to her that night. We did not find this out until late the next morning.

In the morning, Friday, July 4th, when my sister and I visited, she complained of a salty taste, and hadn’t been able to drink any water or eat the breakfast they had served her (later the hospital told me that they meticulously tracked her food intake and they found that she ate most of what they served her. This was not true, as I observed everything my mom did very carefully).

The morning shift nurse assigned to her said that the salty taste was most likely a side effect of chemotherapy.

I immediately googled ‘salty taste’, and learned that it can be a side effect of extreme dehydration. I pointed this out to the nurse, and to the hospitalist who came into the room just then to check on my mom, and when we expressed outrage that my mom was not receiving the care she required, he asked me, “Well, what would you like us to do?”

I was beyond appalled that a doctor would be asking family members what medical treatments should be administered.

My sister and I told him we wanted her to get a nutrition (PIC) line, and IV fluids immediately. Even after this demand, it still took a while for the nurse to administer first the IV fluids and then the PIC line.

The salty taste went away soon after she got the IV fluids, indicating that she had indeed been extremely dehydrated.

That afternoon I started the process to file a complaint with the hospital, for the neglect and substandard care she was receiving.

Early Sunday morning, July 6th, her PIC (nutrition) line failed, but the hospital did not inform me. Her arm swelled up, and although they tried to insert it again, they were unable to do so. They did not try again, on her legs or other arm, and my mom got no more nutrition or even IV fluids for the short time she had left to live.

Over the next couple of days my mother continued to decline, not eating or drinking water, and on Tuesday afternoon, July 8th, Dr. Bobby Head, not her oncologist but the one on call for the hospital, convinced my sister and I it would be in my mother’s best interest to bring her home, with her (now) stage 4 lung cancer, and arranged for a meeting with hospice the next morning.

When we got to the hospital the next morning, Wednesday, July 9th, at 8:30 am, for the meeting with hospice, the floor doctor told us that my mom was having a heart attack, and he was arranging to send her to the cardiac unit, for an operation to place a stent. My mom was shaking, and so frightened she couldn’t speak.

Dr. Bobby Head rushed in, and she cancelled the order for my mom to receive intervention, declaring that my mom was not having a heart attack, and told us, out of earshot of my mom, that intervention could crush her ribs and possibly put her into a vegetative state.

We went back into the room and my mom said to KayAnne and I, “Good news, girls! I don’t have to go down to the cardiac ward!”

KayAnne and I went back to the apartment, to get ready for my mom to come home, for the last time. The Hospice manager came over, and started the process for Hospice care.

My mom was brought home by ambulance, on a stretcher, late that afternoon, July 9th, very frightened and debilitated, with an oxygen mask. There was a lot of commotion as the Hospice manager helped the medics get my mom into her bed.

KayAnne and I made her as comfortable as possible, and encouraged her to try to sip water. She had no interest in food. We fussed over her, and were instructed by Hospice on how to give her the medications, all in liquid form: morphine, atropine, etc.

I don’t know if she knew she was dying, she really didn’t say much of anything.

What I remember as her last words were, as KayAnne and I were standing by her bedroom window hugging each other, “Look at my beautiful daughters!”

That night, KayAnne and I laid down on either side of her, and held her hands. We could feel the pressure of her hand, not quite squeezing, but a gentle holding, and that comforted us, we knew that she was still with us.

At about 2:30 am, Thursday morning, her hands went slack. As my mom’s spirit left her, I saw a small light shoot up towards the ceiling. Her breathing became shallow, and her body began the process of gradually shutting down, slipping toward death.

Thus we began our vigil by her bedside, praying that God receive her soul. We kept her glasses on her face, as we thought if she was able to see, she’d need her glasses. At one point, her skin was very warm to the touch, and I got a wet washcloth to cool her down. As soon as I touched her arm with the washcloth, she got agitated and tried desperately to get off the bed. We had been cautioned by Hospice that the agitation was a normal process of dying, and we soothed her as best we could.

Later that morning the Hospice chaplain called, and asked if he could do anything. In a burst of inspiration, I asked if he could give my mom sacrament, or last rites. He said no, he wasn’t Catholic, but he’d make some calls and promised to find a Catholic priest who could.

My mom had been raised Catholic, but had turned away from the Church as a young adult. We felt it was an important thing to do for my mom, and a comfort for us. The priest from Mission San Rafael Arcángel came over in the late afternoon, and he performed the ceremony. By then, my mom had stopped moving around.

We called my Uncle Paul, my mother’s brother, and I told him I didn’t know how long it would be.

KayAnne and I would wander in and out of my mom’s room, checking her breathing, talking to her, touching her arm or hand to let her know we were there.

I called a friend, Josefina, and asked her to come by for support. We were blessed that she had some free time, and she prepared dinner for us.

Josefina came back early Friday morning, and sat in meditation on the couch. Her presence was so comforting to us, and I am so grateful she knew to come back.

My uncle called, to let us know that he and his wife were driving up from Los Angeles.

KayAnne and I were still wandering in and out of my mom’s room, checking on her breathing. About 10:20 am, I was in my bedroom sitting in front of my computer, just staring at the screen, and suddenly a voice in my head said, “Go check on mom.” I went into her room, and checked her breathing. It seemed to be more shallow, but still steady. I sat down in the chair next to her bed, looked at my cellphone, and then the voice in my head very clearly said, “Put the phone down.” I looked at my mom again, and then hurried to get KayAnne, saying, “It’s time.”

KayAnne and I sat by her bedside, and kept watch with deep sadness and love until our mother took her last breath. It was 10:30 am, Friday, July 11th. Almost two months after her 77th birthday. My father died two months exactly after his 36th birthday, on July 6th, 1973, my brother died two months and nine days after his 36th birthday, on October 19th, 1995.

My sister and I gave our mom a final bath, on the bed; we lovingly cut off her nightgown, we gently and thoroughly washed her face and body, we took off her glasses, we closed her mouth and eyes, we put clean clothes on her, we brushed her hair and then we arranged her body in a restful pose. When the Hospice nurse came over to confirm the death and saw my mom’s body, she exclaimed that she’d never seen a body radiate so much love before.

My uncle and aunt arrived, and they sat with my mom, tearfully saying their goodbyes. They were comforted when we told them we had a priest come over and perform last rites for my mom.

The mortuary owner showed up, and he and his employees respectfully wrapped my mom in a shroud and took her away.

We had her cremated, and bought a beautiful urn, for her remains. photo(22)

We drove down the coast to Los Angeles, and, joined by my uncle and aunt, we interred my mom in the niche alongside my father’s ashes, at Forest Lawn Hollywood Hills. My parents had met in Los Angeles, in 1953, and they drove all over the Hollywood Hills when they were dating.

It is my belief that if, on July 3rd, my mom had been seen by the Emergency Room doctor immediately, and had her condition correctly assessed and had received the PIC line, and IV fluids in the Emergency Room, with the continuation of these treatments after being admitted to the fifth floor, and had better, more observant and intelligent oversight and treatment by all of the doctors and nurses, my mother could have been with us perhaps several weeks longer.

But I’m comforted by my growing belief that perhaps God had called her Home, because it was time for her to be with reunited with her long-departed husband and son.

 

photo(25)

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No More Normal

By Cheryl Lynne Pickens Rubbo

Let me tell you a story. This is a story about a young family, traveling in their car up a one-lane dirt road, at night. It is mid spring, and still cold outside. The car is a station wagon, and the father is driving. The mother is sitting next to him and the three children are sitting in the back seat. The car is crunching over rocks, sticks and leaves as it travels up the road, heading toward a house full of strangers.  

The year is 1969. The young father and mother are both 33.

My grandfather nicknamed my brother Boy, rushing onto the plane after it landed to grab his newborn grandson, his namesake, from my mother’s arms and shouting, “That’s my Boy! That’s my Boy!” My grandparents were from Texas, where family is everything, and the only thing worth value.

In 1969 Boy was the youngest at 9, and he was the only one of us children that my father’s sister tried a couple of years later to rescue.  

Our car is heading away from our home, away from the familiar and the beloved. The house had been packed up, some stuff thrown away, more stuff given away, and what couldn’t be parted with stored in the garages of friends in the valley. There was no way for us to know that night that, over the years that stuff, too, would disappear.

The headlights shine up into the darkness, showing the road and bathing the trunks of the trees lining the road with light. My father is telling jokes, laughing, singing, trying to cheer up his stunned children. Suddenly my mother turns to the back and snaps, “Can’t you see how hard this is on your father?”

Good god, what? Was she kidding? I felt the shock go deep into my body, and bewildered by her anger I waited, but my father went silent.

The car continues climbing up to the top of the ridge, to the unfamiliar house, where my family will stay for a few weeks, before moving on to other strange houses, to stay for awhile, a few weeks, a few months. I had no idea where we were going as we crunched slowly up the road, some vague notion of “staying with friends for a little while.” My father parked the car and we went inside with our small bags, but the otherness of the place and of the people I’d never met before made me hang back.

Our house, our home, nestled in the hills of Lagunitas and perched at the top of a small, winding road, had always been filled with love, with books, and with music, famous musicians were always dropping by to jam with my father. He put his heart and soul into our home: he brought home a gypsy wagon that became my sister’s bedroom, he built a huge bathtub out of redwood and countless coats of resin for waterproofing, the yard was filled with his sculptures (artwork the neighbors considered junk!) the light in his woodshop (his sanctuary) always burned bright long into the night. This was the happiest time of my life, I wandered all over the hills, a tomboy, and my sister and I played among the Manzanita trees, using the lichen growing on them to make houses for our Barbie dolls and troll dolls.

The three of us kids shared a room, my sister lording it over us in her single bed, and my brother and I sharing bunkbeds. I would run from the doorway of the bedroom and leap into my bed, taking care to aim carefully and not crunch my head on the upper bed, knowing beyond a doubt that monsters were hiding in the darkness beneath my bed waiting for me!

Susu, my precious cat, gave birth to her squirming litters of kittens in my bed, my mom wasn’t too happy about that but I was ecstatic.

My family was suddenly homeless, our home, bought for us in 1963 by our beloved grandparents, was lost, forever, and we were to be sheltered by friends, by strangers who became friends, strangers who remained strange, and by friends who turned into strangers. We finally came to an uneasy rest at the scattered homes of Peter Coyote’s commune, a loose tribe of people known as “The Family.”

 The children did not realize, in the darkness of the car, just how their lives had changed. Sitting in the backseat, wedged together among our belongings, we didn’t understand what was happening to us, or why.

 There would be no more normal, everything would be viewed through a prism of “before” and “now.” There would be no more school for the two oldest, the daughters. I would have no more schoolyard friendships, or awkward sleepovers.

 There would be, also, no more dentist visits, no more doctor visits, and the clothes we would wear would come from Free Boxes. We would learn to do without. Uncertainty and change were to be constants. There were times when we didn’t know if we would eat at night. There were times when we didn’t eat.

My father had made some mistakes, and his young family was paying the price for his mistakes. We had no idea what those mistakes were at the time, how could we know that what he had done was wrong? My father was unquestionably right about everything, wasn’t he? Even when Travis, the young sheriff, came to question me, a 9 year old, about whether I would have slashed tires on our road (yeah, right), how was I to know this was harassment of my father? Even when I missed him terribly when he didn’t come home for days, even when the other sheriff waited, parked on the road outside our home until I came home from visiting friends and forced his way in to search an empty house for my father, and I stood trembling and scared with the comforting arms of my friend’s mother around me, and even when we went to visit him in jail, I did not have the capacity to judge him.

My fragile mother paid a price for my father’s mistakes, a price that we could not afford. That night in the car was the beginning of her long, slow descent into the heart of madness. She never fully returned.

My father was not a stupid man. He had such a high IQ test score in high school in the mid-50’s that the school refused to tell him or his family what his score had been; I’ve been told that was because his score was so much higher than the other kids in his school. My father had wanted to create a life of art, beauty, music, poetry and love. A rebel from early on, my father lived on the edges of societal norms, and he truly, deeply, believed that art is life, life is art. He had a restless intellect, he was infinitely curious and not satisfied with the way things were. His friends were musicians, artists, free-thinkers, intellectuals, and radicals. His wife, the mother of his children, wasn’t always comfortable with his radical way of thinking, she was especially alarmed with his interest in the philosophy of Summerhill School, but they both raised us, at least in the early years, with love and pride.

Although folk music was the politically correct music of the day, he and his friend David Meltzer listened deeply, for hours, days and months on end, to all music available on LPs: blues, jazz, gospel, country, bluegrass; and they strove to recombine all the sounds they heard when they played their improvisational sessions. Most folkies disdained their attempts, with the exception of some of the musicians who went on to form the seminal bands of the early psychedelic rock scene of San Francisco: Jim Gurley, Dino Valenti and David Crosby. David Meltzer and my father played their unique music at the Coffee Gallery in North Beach, San Francisco, in the early 1960s, Jim Gurley accompanying them, their music shaping and defining the musical style that would later sweep the nation.

I learned all of this later, from David Meltzer, when it became urgent for me to learn more of the person my father had been, and to try to understand why he made the choices he did, and to try to put my life into perspective. 

Drugs have been used by musicians and artists for decades, and my father and his friends were not exceptions. Marijuana was the most common drug, and smoking it was considered to be a harmless recreational high, shared among friends and strengthening creative bonds.   

Then, in early 1968, a friend betrayed my father, by helping an undercover cop entrap him with a marijuana buy to reduce his own jail time for a prior bust. Jail was a brutalizing experience for my artistic, creative, sensitive father, and it seared his soul. Methedrine offered comfort and escape.

The children’s beloved grandparents came up from San Diego, along with his sister and her attorney husband, to plead with him to enter a mental institution because, to them, his behavior could not be anything other than sheer madness, insanity. He refused.

My father thought he could control the drug, and the drug destroyed him. After we moved from our home in Lagunitas I rarely saw him, he spun off into a world I could not imagine, inhabiting a surreal netherworld of drugs, low-life characters and lost opportunities. I know it was not a world he would have chosen but was his by the twists and turns of fate and fortune. It was not a world that he deserved.

In the end, my father lost so much that was dear to him: first his home; then his cherished parents and sister who could not understand him and shunned him; and then finally, two months and two days after his thirty-sixth birthday, his life.

His only son, named after his father, also died, two months and nine days after his own thirty-sixth birthday.

His daughters, my sister and I, we were the ones who survived, and we have finally learned, although we paid such a high price, to live our lives with joy, strength, dignity and intelligence.

I’d like to ask my father’s sister, the woman formerly known as my aunt, just one question.

Was it you who convinced my grandparents to stop paying the mortgage in late 1968 on the house they bought for their only son and his young family…

…   and not tell my mom?

 

Papa & Mama on Motorcycle - Sonnabend

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The Last Time I Saw my Brother’s Face

By Cheryl Lynne Pickens Rubbo

My brother left me a gift so profound and beautiful that to this day I am still discovering traces of his legacy. They pop up along my path, like flowers blooming long after their seeds were planted. Paul gave me the gift of helping others to heal. Although, at the time of his passing, I would have given my own life to spare his, I am forever grateful for his bequest.

The last time I saw my brother’s face, his spirit had left and death had come at last. He was only thirty-six-years old. His wife called at 5:00 a.m. to tell us he had just died. We rushed back to the hospital to comfort her and say our last goodbyes to him. He was my baby brother; this was not supposed to be happening. He was not supposed to die before me and yet he died with such dignity and courage, he showed me a new way to be in life.

Hospital Vigil

Our vigil at his hospital bedside during the last days of his life was heart-wrenching and painful, but we had to be strong for him and for his wife. After a long illness, Paul knew he was near the end. His body was so ravaged by his disease that his voice had been a whisper for months and on his first day back in the hospital, he whispered to my sister, “I know that I am not going to get out of here alive.”

We sat next to Paul, day after day, feeding him spoonfuls of ice chips and praying for him to be released from his suffering. He was not eating any food, and the hospital had not put in a feeding line. Once, as I helped him get back into bed and put my hand on his shoulder, I was shocked to feel no muscle beneath his skin, the shape of the bone round and hard under my palm.

My mother, an emotionally fragile person, was distraught yet unexpectedly stoic about her youngest child, her only boy, dying. I gently, but reluctantly, told her that she needed to give him permission to leave so that his suffering would not be prolonged by worrying about us. Paul always worried about us; we were the kind of family that seemed to bump through life from difficulty to disaster, trauma to tragedy, just hoping to get by.

Idyllic, Artful Childhood

KayAnne, Paul and I were born to teenage parents in the late fifties and grew up in the turbulent sixties. Both our parents enthusiastically embraced the counterculture philosophies of the beatniks and hippies. My father, J.P. Pickens, a gifted and creative musician and artist, opened our home in Los Angeles and later in San Francisco to beatnik artists and musicians, such as George Herms, Wally Berman, and David Meltzer. My father was an influential figure in the early North Beach, San Francisco music scene. He was slightly older than the other musicians and consequently given respect for his bohemian credentials and experience.  J.P. was one of those figures who helped to define the psychedelic rock genre as an influence for “insiders,” but was somehow invisible to fame.

Our house was a warm, loving bedlam of creativity, music, art, and family. My father deeply believed that “Life is Art, Art is Life.” We lived that tenet to the fullest. This was the happiest period of my childhood, and my memories of this time glow with golden sunlight.

Long, Slow Descent

Then, in 1967, my father was introduced to methedrine (“speed”) by a neighborhood pal. He began a long, spiraling descent that culminated in his death in a horrific accident several years later. Because of the chaos created by his addiction, we lost our family home to foreclosure and were forced to move into an elastic and nearly formless commune, the Digger/Free Family (described in exquisite detail by Peter Coyote in his book, Sleeping Where I Fall). My mother found our new borderless, chaotic life in the commune to be frightening and impossible to cope with. Although I desperately wanted a stable home with my parents, I rarely saw my father, and by the time I was thirteen, my mother suffered a major nervous breakdown.

I dropped out of school in the 6th grade and moved around the different houses the Diggers maintained as communes, from San Francisco to Black Bear Ranch on the California-Oregon border.

I read voraciously. Like my father, I possessed a deep desire for knowledge and a passion for the written word. Not surprisingly, I found myself involved in several unhappy and unfulfilling relationships, and looking back, I can see clearly that I didn’t have a sense of my own worth and value. I knew my parents loved us, but they were too preoccupied with their own problems to notice that my sister, brother and I needed more from them than they were giving. As the poet David Meltzer wrote about my father, “We realize our prison only after we design it and move in.”

Hardest on my Brother

The hardships of our family life seemed to hit my brother Paul the hardest. Apparently he struggled with his demons throughout his entire life. He stayed with a family friend while he finished junior high school, and he was living with my parents in San Francisco when my father died in 1973. I was shocked when I realized this eerie parallel: my father died two months to the day after his 36th birthday, my brother, two months and 10 days after his.

The year my father died was also the year Paul discovered martial arts. For the next ten years, my brother devoted himself enthusiastically to the practice of Shao Lin Chuan. Shao Lin Chuan is an ancient Chinese martial art that builds strength, speed, power, and flexibility, and emphasizes self-defense. This martial art was developed by Buddhist monks in ancient China to cultivate a philosophy of wellness and self-defense. Paul loved Shao Lin Chuan so much, and was so good at it, six months after he started I also was inspired to begin practicing with his teacher, Sifu Kuo Lien Ying. We woke at 4:00 a.m. every morning and rode the city buses to be at our teacher’s studio in Portsmouth Square in Chinatown at 5:00 a.m. My brother and I both excelled at this arduous and demanding practice. We became dedicated, disciplined, and physically strong. I did not know at the time that this was to be the foundation of my life’s work, nor was I aware of how my growing excellence was healing a formerly warped and inaccurate sense of myself. Nor did I realize I would meet my husband at Sifu Kuo’s studio.

Paul graduated from a technical high school and went on to become the captain of the gymnastic team at City College of San Francisco. He experimented with drugs and alcohol as a teenager, but later, in his late 20’s, the latent demons that had plagued him during his turbulent early years once again assumed power. Paul developed an addiction to drugs and alcohol. I discovered this only when he joined AA some years later and called me to “confess” as part of his 12-step commitment. Paul had a long series of short-term relationships with women, and his heart was broken many times, which undoubtedly led him back to the false friendship and comfort of drugs. When my brother eventually married in 1985, having found a woman who was devoted to him and who loved him for himself, it was not enough to quell the demons. Fortunately for him, and for his wife, one year before his death, living with the terminal illness of AIDS, Paul found the strength to quit drugs and alcohol and end his life free of addiction.

My Greatest Inspiration

My brother was charming, loyal, intelligent and honorable to a fault. Whatever horrors were eating at him, he never revealed them in his interactions with others, which were marked by selflessness, good-humor, and a willingness to extend himself far beyond what most people attempt to offer. My brother’s death was devastating to me, I loved him deeply, and I grieved for him for a very long time.

When Paul told us that he was HIV positive, I did not have the skills to cope with his illness. When he would mention the physical problems and pain he was experiencing, the fear of his death would arrive in my voice. He finally had to tell me that phone conversations with me were more and more difficult, he couldn’t handle my fear that he was going to drop dead at any moment. That was a turning point for me. I realized that I had to stop feeling sorry for myself because my brother was dying, and start focusing on my brother’s needs for however long he was to be with us.

My brother never once complained of his pain and fear. He never blamed anyone for his illness. From the moment of his diagnosis, Paul lived one day at a time. He bore the unknowable pain and indignities of a fatal disease with grace, charm, and courage, and gave me, by his unwavering example, the greatest gift anyone could ever have bestowed. Since Paul’s death in 1995, I have dedicated my life to easing the suffering of humanity, one person at a time. I am committed to teaching people how to increase the quality of their lives at whatever stage they happen to be living, whether their afflictions are physical, mental, or spiritual, or a combination of the three. Paul taught me so much about being with people who are suffering. The help I can give them is the gift I offer continuously to my brother’s and my family’s memory.

In the Name of my Brother

For two years following my brother’s death, I looked deeply into myself, examining the ways in which I had allowed fear and grief to control me. I also examined the ways in which my love and compassion helped my brother. Experiencing his dying and his death helped me to find my true voice; it has shaped who I truly am. I realized that I care deeply about relieving the fear and suffering of others; that what really matters in life is how we are able to help each other, and we all need each other if we are to overcome our afflictions.

1997 Donald and I co-founded the Paul D. Pickens II Research Foundation, a 501-(c.) (3) nonprofit organization that provides health and healing information and classes to the public. Our desire was to help people of all ages and in all levels of health achieve greater balance and joy in their lives, and thus to heal the world one person at a time.

Paul D. Pickens II

Paul D. Pickens II

http://www.cultivatechi.com/, http://www.ExtraordinaryBreath.com, http://www.jppickens.com

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