Loving-kindness or metta are meditations on compassion. A common metta meditation includes the script, “May you live with ease. May you be happy. May you be free from pain.”

I was engaged in a nearly perpetual state of metta meditation for Dad. In the last two months of his life, the implication of my meditation, oft-considered a type of prayer, was a prayer for my Dad’s death.

In advocating for my Dad’s admission to hospice care, which meant foregoing continued cancer treatment, I felt that I was fighting for his right to die, to exercise his last wishes over his own life, to ease his suffering on Earth.

The last few months have been difficult for my family. I am thankful for what I have learned in my life about dealing with grief in a healthy way.

Mindfulness is the practice of accepting and experiencing life just as it is. My mindfulness practice has been instrumental in helping me experience the deep pain of grief without adding suffering to it. Perhaps more than that, I have learned a great deal about grief from my mother, when it comes to grief about the loss of parents.

The first thing my mom did was to be a compassionate daughter to her aging parents. She provided them with regular help and emotional support over the years. Mom set limits when she needed to. When her father was dying, she provided him with an opportunity to talk about death. He declined the invitation as was his right to do and Mom respected that.

My mother is a church singer with a beautiful voice. She has sung for hundreds of funerals over her singing career. Mom sang for her dad’s funeral in 1987. She sang for her mother’s funeral in 1993.

Two days ago, Mom not only sang for her husband of 63 years’ funeral but she led the assembly in song, serving as cantor for the mass. It was inspiring. What fortitude! I kept looking over at Mom and thinking, “Mom is a rock star of grief.”

My parents had a really loving marriage and I’m not just saying that because Dad just died. They really did. They were a love match, very lucky to have found each other when they were just kids.

Mom no doubt feels deep pain but music is her ministry, a ministry to spread love, compassion, and to ease suffering. She eased her own suffering, the suffering of her children, and of all who witnessed her example.

 

Life is full of choices but there are some choices we don’t have. We don’t choose to be born. This is something about which those of us who have or have had teenage children have been informed. Most of us also don’t choose how we die but want a peaceful passing without suffering.

My dad enjoyed good health for about 81 years. Then he started showing symptoms of Parkinson’s Disease, which he tried to ignore, all the while becoming increasingly impaired physically and cognitively.

Dad came to Zoey’s 19th birthday last September. He was walking unsteadily with a cane and to our horror, was still driving. By October, he could barely walk with a walker and to our horror, was still using the stairs in the house. His first hospital trip was in November. An enlarged prostate had blocked his urethra. His bladder was drained of 2 liters of urine and he was admitted to the hospital. Dad’s bladder continued to drain with a Foley catheter, something he hated, and as it turned out, would need to keep for the rest of his life. Noting symptoms of untreated Parkinson’s Disease, the P.T. and O.T. department referred Dad for short-term rehab.

The first rehab facility wasn’t home but it was really nice. Dad had periods of confusion accompanied by agitation at home, especially at night. Mom was up with him during those times. Dad felt well cared for there. He was a charming and grateful patient. Dad made good progress in his physical therapy and started taking medication for suspected Parkinson’s. Mom and Dad celebrated Thanksgiving and their 63rd wedding anniversary in that facility. He was discharged shortly before Christmas and enjoyed the family party at his house.

Dad was back in the hospital in March with a gall bladder attack. It was there that stage IV prostate cancer with bone mets was discovered. Dad started treatment immediately, taking an oral hormone blocker. He already hated his frequent urology visits and now oncology visits. Dad hated being in hospitals and medical clinics almost more than the treatments he received.

There was still the issue of his gall bladder. At the urging of an incredibly kind and experienced palliative care physician, he saw a general surgeon to have his gall bladder removed. It was planned as an outpatient procedure. I was dubious and the surgeon was kind and realistic about the chances that Dad would be admitted to the hospital for monitoring, especially for signs of infection. After surgery, Dr. Burke explained that Dad’s gallbladder had been “dead”, something that likely happened after years of dysfunction. He also explained that the surrounding tissue was inflamed. Dad was admitted to the hospital overnight and discharged the next day.

Dad did get an infection but it was due to his Foley catheter. Shortly after leaving the hospital, he was readmitted. Dad was sitting in his favorite chair, was in pain, and couldn’t move. During his 12-day hospital visit, he became septic. I really thought he was going to die during that time. He responded to antibiotics and improved. However, Dad’s mobility was quite limited and not good enough to be discharged to home. He went to another rehab facility for another 30 day stay. Unfortunately, the nice facility was not available. The one he went to had good physical and occupational therapists but the environment was bleak, the nursing staff was inconsistent, and the communication about his progress and treatment plan was poor. Dad hated it there. He refused almost all food while he was there, even when we brought outside food.

During the earlier part of these months, Dad and I had conversations about his wishes for a peaceful death and an end to his suffering. Eventually, the idea of a peaceful death became impossible. How could Dad have a peaceful death with all of the suffering that had already transpired? Dad had been an outdoorsman, a builder, an athletic and vigorous man into his early 80’s. He was a level-headed, methodical thinker. Dad had a mind like an engineer and a sensible person. Dad and Mom had decades of wonderful married life. Dad lost his ability to stand, pee on his own, have sex, and even the ability to consistently know where he was. At times of confusion and agitation, he was mean to Mom. When he remembered that he was mean, he felt guilty. He also asked to die during the night, several times a week. This went on for months. The idea of a peaceful death sounded like a joke.

Nonetheless, we kept trying. It was June. The neurology appointment that we’d waited 7 months for had finally arrived. Mom and I wondered if it was wise to bring him to it given how much sicker he’d gotten and how much he hated going to see doctors. We ultimately decided that it was important for him to have a proper diagnosis and treatment. Dr. Davis was very good. She took her time, confirmed the Parkinson’s Diagnosis and modified Dad’s prescriptions.

Within a week, Dad was actually able to initiate conversations. He was more responsive. He became interested in his P.T. and started practicing getting in and out of bed at the rehab facility, with the help of my brother, Steve, who is a natural P.T. Dad started working to go home. He wasn’t always convinced that he was going home or that the rehab facility was not his home, but his lucid periods were longer and more frequent.

I pressed the facility for a progress update because they hadn’t told us a treatment plan or anything. By the time we had a case conference meeting, Dad was mobile enough for discharge. We planned discharge and got a referral for hospice services. Dad was so excited that he was going to be discharged.

Going into hospice care meant stopping aggressive cancer treatment, Lupron shots, every three months. I explained this to Dad and got as clear of an answer that this was what he wanted, as I could, given that he slipped in and out of orientation. Fortunately, we’d had talks before. He had told the palliative care physician that he wanted me to advocate for his wishes. Fortunately, Mom and I wanted the same for him.

Dad was also getting a bone strengthening injection from oncology to protect him from bone fractures. I asked the hospice nurse, Kim, who did Dad’s initial assessment, whether he would be able to continue to have them. Kim told me that she had to contact the regional medical director for hospice, a physician in Arizona, for authorization.

Kim called back later that day. Upon seeing my dad’s file and noting that he’d only been treated for cancer for two months, the doctor asked, “Why do they want hospice now? If he was treated for the cancer, he could live three more years?”

Kim was really kind. It was a fair question to ask given the information the physician had. I explained that this was not my dad’s prognosis, we were told 1-2 years. I also explained his daily suffering and his almost nightly despair. I noted that doctors kept finding things wrong with him and that I wondered what was “under the floor boards” that hadn’t even been examined. I explained my Dad’s wishes and my commitment to honoring them. Kim was understanding and supportive.

Dad came home on Monday 6/25. He was so happy! My brothers and my husband had built a wheelchair ramp for him over the previous weekend. He loved it! Hospice had delivered all of the durable equipment over the previous weekend and we’d put it in place. Dad loved it! “Hey Dad, look at what Hospice and Medicare have provided for you!” The intake nurse, Helen, was kind. Dad stayed awake for the whole meeting, which was unusual.

My brother, Steve, came to the house daily to provide custodial care so that Mom and Dad did not have to hire people privately. Dad would be cared for by Mom and my brother, by family. What a blessing! Steve planned fix-it projects for the house and took Dad on field trips to the hardware store, in the van he had bought especially to transport Dad.

Dad started eating again. He was awake longer. He was talkative. He had a few really good days. Home had made him so much better. I was thinking about the upcoming months with Dad.

After less than a week at home, Dad had a really agitated night. He and Mom were up all night. He kept saying that he needed to get up out of bed and crying for help. The hospice nurse came over, discovered that his catheter tube was blocked, fixed that, gave him lorazepam for agitation and instructions to keep giving it to him. She instructed Mom and Steve to keep Dad in bed for the day for rest and that he would likely sleep through the next day. Dad went to sleep. It was a Friday. He slept through Saturday.

He was still asleep on Sunday. We figured that he was still sedated and needed to sleep it off but we were also worried. Steve called the desk nurse for hospice. She said that she would have one of the nurses call him but also said, “Prepare for a peaceful death.”

“Prepare for a peaceful death!” What????????!!!!!!!!!! Just the week before, I had been asked if we were starting hospice too soon!

The nurse came to visit, said that she thought the lorazepam was still working through his system. Monday came and he was still mostly asleep. The hospice nurse came over to the house. She said that she smelled ketones in his urine. He was burning fat instead of sugar. She said that she thought he was “in transition.” Steve called in the night nurse, who we particularly trust, for a second opinion. She said the same and estimated that Dad would likely die in a couple of days. She also cautioned us to pace ourselves for the possibility that it could take a couple of weeks.

The next day, Tuesday, Dad was significantly more alert. He asked for ice cream, which Mom and I gave to him. He saw the birds lighting on the tree outside his window. Dad moved his mouth to the Lord’s prayer when Mary, the lay minister from their parish, brought him communion. Father Ed, the parish priest came over a few hours later to give Dad the sacrament, Anointing of the Sick. We as family members were able to participate in giving Dad an individual blessing. It was very moving.

On Wednesday he was mostly unresponsive except for exclamations of “help, help, help” He breathing was labored. We gave him comfort medicine, lorazepam and morphine, at regular intervals. Yesterday was Thursday. I worked in the morning and went over to the house at about noon. Dad’s breathing had become even more shallow. He was struggling.

Steve had called hospice. Kim, the nurse who had originally assessed Dad, came to the house about 45 minutes after I got to the house. Steve had gone home to rest. Kim examined Dad. She said that his breathing pattern was typical for transition. During the evaluation, Dad’s coloring got worse. He was even more pale and ashen. Then there were long periods between his breaths. Kim told me that his death was close. I called Mom into the room.

Kim held Dad’s head and stroked it. I rubbed Dad’s shoulder. Mom held his hand. Mom and I sang, Amazing Grace. Dad took his last breath a few minutes later.

Kim had tears in her eyes. She hugged us both. We thanked her. How grateful we were for her guidance. It helped us be there for Dad.

Peace is not an on-off switch. Dad had moments of peace even in the suffering. He asked for ice cream. He told Mom that she was his “first love”. That was two days before his death. Yes, he was suffering, but to rise above that to ask for a simple summer pleasure and to profess love? That means something. It means a lot.

My Dad was surrounded by love when he died. He had a peaceful death at the very last.

Dad died today. Mom and I were with him along with a beautifully sweet and competent hospice nurse, Kim. I have much to write about what has transpired in the past 2 weeks. Today, my mind is too full.  One thing I will share is that Dad passed surrounded by love and for that I am truly grateful.

As you may know, Donald Trump and Jeff Sessions instituted a “zero tolerance” policy toward immigration seekers. I am not exaggerating in the least when I tell you that this means 1) treating asylum-seekers like criminals and 2) stealing their children away from them and putting them in detention facilities. 1995 children were taken from their parents in the recent span of six weeks.

We have an unfair and messed-up immigration laws. We’ve had them for a long time. But this policy change has been a surreal gut-punch. I was stunned for a bit. This is Nazi-level cruelty. It could be changed today if the administration said so. There is no legislation needed to change the policy and there were no laws requiring this policy. Donald Trump has even admitted that he is doing this to negotiate for increased border security, basically to build a border wall.

As you may also know, my father is dying. I could say, “This is too much for me” and not do anything to change this policy. But I know what is too much for me and further, it is not that hard for me to do something and even harder to know that I could do something and I didn’t. Frankly, I could do a lot more to help my country. I could also do a lot less. We each have to figure out how to run this marathon and how many rest stops are needed.

Yesterday, my husband and I attended a small protest rally in Seattle. One of the speakers told us to turn to someone next to us and hug them like he or she was our child. People turned and hugged a person or two. I saw a woman in my peripheral vision who was walking through the crowd hugging lots of people, individually. She approached me. We There were tears in the eyes that met mine and she said, “Thank you for being here.”

It was not lost on me in the split second before I responded that her “thank you” may have had something to do with her brown skin vs. my white skin and the Spanish accent that identified her as an immigrant. I replied, “Of course. Of course! Thank YOU for being here.”

My response was slightly awkward but heartfelt. What is more fitting than helping our fellow human beings, especially the most vulnerable among us?

 

Last year, I watched, Twin Peaks: The Return. One of the characters, the Log Lady, is an oracle. She spoke prophesy in poems and riddles, with partly shaded facts and abstract associations.

“Something is missing”, implored the Log Lady. The actress, Catherine Coulson, was dying of cancer when she was playing the part. Her character was also dying of cancer.

My father, an 85-year-old man with Parkinson’s Disease, stage IV prostate cancer, and other diseases, reminded me of the Log Lady. He looked at me this morning, while we were waiting in a waiting room for his transport back to his rehab facility and said,

“What are we doing?”
“We are waiting for the cabulance to take you back to Stafford. That is where you are staying to work on getting stronger so you can go home.”
“Why are we  doing that?”
“Remember when you couldn’t stand up? Now you can stand up. You are going back to Stafford so that you can keep getting stronger.”
“Why are we here?”
“Dad, I’m not sure how to answer that. Where do you think we should be?”
“So, the government is taking away my place.”
“No, Dad. That’s not happening. You are going to Stafford. Your house still belongs to you. No one is taking it away.”
“Why isn’t Joe [his son, my brother] here?”
“Joe is at work.”
“He should be done.”
“No Dad, it is still morning and school [Joe is a teacher] is not out yet. Do you want Joe to call you when he is done?”
“Yes. What does that girl [the palliative care nurse practitioner] want?”
“Dad, she is helping us set up nurses and helpers so that you can return home more quickly. This is paid by Medicare.”

He did not seem entirely reassured but he was quiet. I sat in the oncology clinic waiting room chair and took a deep breath. My mom returned to the waiting room after picking up my dad’s prescription from the pharmacy. I said good bye and took the prescriptions to the rehab facility.

Mom called me shortly afterwards. She explained that Dad thought that when my mom signed a paper at the palliative care office that she was signing away their house and property. “All these years. All that I’ve worked for is gone.”

A life can be a lot of years. A life is always a lot of work.

Something is missing. A lot is missing.

Dad is looking for what is missing. He is missing what is missing.

I so wish we could give it to him, the pieces he is searching for.

 

 

 

Chiaroscuro is an art term. It describes the use of light and dark in drawing and painting. Some painters, like Caravaggio, were known for their use of high contrast in painting. In fact, Caravaggio made the exaggerated use of chiaroscuro popular because he used it to such excellent effect. I learned this in college as a double major in art history and psychology. (I ended up dropping the art history pursuit about a quarter from finishing it but that is another story.)

I have always loved art in all of its forms, visual, written, spoken, and performance. I have been fortunate to have natural talents in music and writing, and to have been able to cultivate those skills through formal education. In the visual arts, I have been more of an appreciator and a recognizer. I greatly appreciate painting and drawing and I think my taste is fairly well-developed. I have learned to be a decent photographer, which is often recognizing that what I see through the lens is beautiful in form, color, texture, light, and composition. Interior decoration is similar. It is being able to arrange objects in a pleasing fashion.

Making visual art from scratch has been harder. I started pottery three years ago. I don’t sculpt but I have slowly gotten decent at using the pottery wheel. I am good at following steps. I can check my progress as I throw and see if the form is pleasing. I am learning to be less fearful of the paint brush. I am making highly decorated pieces.

Last month, I started a drawing class. I am not naturally good at drawing and painting. I work with kids. I see what some of them can do with little or no instruction. We introduced ourselves at the first class. I said, “I am a child/adolescent psychologist. My drawing skills are at about the level of a 6-year-old. I know this because I draw with a lot of 6-year-olds.” I was making a joke but I was not kidding.

The instructor was really not very good but in watching him, I learned a few things that my brain was ready to absorb. My line drawings are still terrible. However, the use of shading was a revelation. Simple line drawings are almost all light. Shadow made my drawing come alive. We don’t often think of life lurking in the shadows. We speak of the “specter of death”, not the “specter of life”.

When I visit my dad these days, it is like he is floating away into increasing darkness, like we are losing him bits at a time. On some days, there are more glimpses of the person I recognize as him. There is more light and less shadow. On other days, I sit with he and my mom, in near silence. Sometimes he makes hand gestures without words. Sometimes he says something out-of-the-blue, phrases that are appropriate for social conversations with family members, but nonetheless disconnected from what is going on.

It occurs to me today that until my dad is dead, he is alive. His shadows are his life as much as the light is his life. This is hard to accept, this new, and ever changing reality. But I will keep sitting with it, sitting with him in the specter of life.

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At the end of my visit to my dad in the hospital last Saturday, I said, “Mom and I are going home so I can make her a belated Mothers’ Day dinner.” (We had spent Mothers’ Day with him at the hospital.) He seemed okay when we left but about an hour into cooking, he called Mom with confused and misplaced recriminations. He did not understand why she was not with him at the hospital. Mom is with Dad every day, regardless of his location. She felt badly but we finished dinner.

On the way home, I stopped by the hospital to check on Dad. A staff member was in the room with him, trying to help him use the T.V. remote. He didn’t seem to know what he was supposed to do with it except that it was supposed to do SOMETHING. She left when I entered the room.  I said, “Dad, would you like the t.v. off (turning the t.v. off) or on (turning the t.v. on)? He told me that he wanted it off. I pushed the button and then showed the button to him, giving another off-on demonstration. He seemed satisfied.

“This guy (the nurse) that’s supposed to be helping me is not able to do anything for me.”

“Dad, what would you want him to do for you?” (Expecting an answer such as, “Tell my wife to come to the hospital and not leave me here to die,” or something else related to the diatribe I’d heard him give my mom on the phone only an hour earlier.)

“I’m cold. I want another blanket.”

“Okay, Dad. I will look for a blanket.” Not finding one, I said, “Okay, let’s ring the nurse and find another blanket.”

The nurse brought another blanket. He was cozy. I asked Dad if he wanted some milk, as he has not been eating much. He said that he wanted some so I gave him a carton of milk. I looked away briefly out the window. The cottonwood seeds were falling from the trees like snow. When I looked back at Dad, I saw him attempting to drink the milk but missing his mouth. He couldn’t aim the straw. Parkinson’s! You are so cruel. I helped him do the simple act of drinking milk with a straw. “Thank you, Sweetheart.” Good God, the bitter and the sweet.

The next day, I received an email from Mom informing me that the parish priest, Pastor White had performed Anointing of the Sick for Dad. “Wait a minute”, I thought, “isn’t that the new name for last rites?”

The short answer is that it is and even though one can receive the sacrament earlier than in the past, I was not ready for this. I thought I was ready but I wasn’t.

I tried to make myself ready. I examined whether there were any unresolved issues I needed to address with my dad. I decided that there were not. Dad knows that I love him and vice versa.

The next morning I awoke to the sound of my phone. I didn’t answer in time and no message was left. It rung again about 30 minutes later. It was Dad. “You’re home,” he said. He sounded different. He sounded like Dad, albeit a little prone to confusion. He wanted to see me. Luckily, I was planning to see him that morning. He was not happy with hospital food. I offered to stop at the store to buy snacks. To my surprise (he had not been eating), he thought this was a good idea.

This continued for a couple of days. Dad still needs two people to get him out of bed but he has been able to stand, with the assistance of his walker, at least one time. This is a great improvement.

Today, he was well enough to move to a rehab facility from the hospital. I visited him this evening. The staff were very nice but the room was full of blank wall. A whole new adjustment to a new place. Dad was less oriented and more quiet. He was, however, pleased that I was there.

I am happy for Dad but also full of other emotions. A whiplash of emotions. I want Dad to live but I don’t want him to suffer. What does that mean, precisely? I recently met a lovely woman in pottery class, a retired hospice nurse. As she put it, “It is hard to know what to hope for”.

I hope for the most peaceful passing for my dad. But what would that look like? I looked at the walls of his room. They were clean, but blank. No answers.

What do I hope for? I had hoped for a peaceful passing but there has been suffering and pain already.

What can I hope for? I hope for walls full of memories, of family photos. I reached out to my brother, John, who has a print shop. He is making memories for Dad’s wall.

 

I went to see, Dad at the hospital today. My brother, John and his wife, Kristin, were there along with Mom, of course.

During the visit, a eucharistic minister (a type of lay minister) from my parents’ church came by, offering the sacrament of communion. She offered a nice prayer and my mom, a long time chorister, spontaneously sang one of the parts of the mass. It was rather lovely. During the Lord’s Prayer, my dad, who has been understandably cranky, reached for Mom’s hand, and held it. This was more than lovely and made me cry. The 63-plus year life they have together enveloped in their enduring faith in the Church. An Atheist would have cried. My parents live in the loving places of faith.

On floor 7 of Valley Medical Center, I was in a place I had long feared being with my parents. But at that moment, there was not where else I would have wanted to spend my time on this beautiful, befuddling planet Earth.

Yesterday was a very challenging one for Dad. This morning there were little victories.

He ate part of a pancake this morning. Victory!

The surgeon removed his surgical drain. Victory!

He had enough energy to talk to me on the phone today. Victory!

When I remarked that he sounded much better, acknowledged that I knew that he still felt crappy, but reminded him that yesterday was “horrible”, he quipped, “I am one step above horrible.” Victory!

He told me that he was thirsty and asked Mom for water. Victory!

Sometimes staying present in the moment means measuring victory in bites of pancake.

While my mom and I tried to fill time and stave off worry with chatter, Dad looked off into space, at nothing in particular. He looked off for a fairly long time. He was away but not gone. Not gone but not here.

Dad’s in the hospital again.  He is being treated for a urinary tract infection. He is responding to treatment and having good moments of presence with his family. But he is also really sad and being present with that.

After months of physical therapy, he went from being able to walk as long as 300 feet in his walker to not being able to turn over in bed without assistance. As he said, after gall bladder removal last week, he’s “gone down the tubes.”

I’m not sure why gall bladder removal is still considered an outpatient procedure on an 85-year-old man with Parkinson’s Disease, diabetes, and countless other maladies. He ended up being admitted for a night after the surgery and discharged the next day, to our surprise. As it turned out, he was discharged too soon. I’m not blaming the surgeon. Sometimes you give the ball your best swing and miss. And he didn’t have the infection yet.

I am trying to a be an understanding soundboard for Dad. Someone he does not have to worry so much about burdening with his sadness. I can validate his pain and his experience of decline. After listening and empathizing I said, “Dad, I think you can get better than you are right now but I know that it’s hard knowing that you will never get completely better.”

We have conversations like this at least once a week. They are short and followed by a silence that is still sad but also filled with love and connection. At those times he is here and we are together, joined in time and space.

Heart Sisters

For women living with heart disease

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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