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.

“Hmm. I want to do something relaxing. Hey, I have a gift certificate to the spa!”

Those were my thoughts a couple of weeks ago. I called the spa and asked if they had any openings for a massage the next day. They did, I made the appointment, and the massage was wonderful and almost completely covered by the gift certificate.

This anecdote would mildly pleasant though not very interesting if it weren’t for one thing. I’d been carrying that gift certificate in my purse for about ten years. According to Washington State law, gift certificates never expire. As long as they don’t get destroyed and the business is still operating, one can use a gift certificate at any time.

In many ways, this is a wonderful thing. Human beings, however, have a funny habit. We tend not to do something that is not part of our daily routine if there’s no built in time frame. Even stuff we want to do.

So what made me use that gift certificate?

If I had to guess it is because current stressful events in my life have upped my motivation to take care of myself. I’ve been providing more support to my parents, which takes time and energy.

My mom recently worried aloud that the support that I am giving them is “too much” for me given my work responsibilities and the time I devote to staying healthy. I told her, “Mom, I want to help you and Dad. It is a priority.”

My dad said something similar. I related to him how frustrating and powerless friends of mine feel because they would like to help their ill parents but live too far away to help as much as they like to. I feel lucky to live nearby. I am also lucky that their other five children, my brothers, live relatively near by and help, too.

Every living thing expires, eventually, and time ever moves forward.  Nonetheless,  each day contains almost countless opportunities. I am working to be mindful of these opportunities, opportunities for exercise and meditation, spending time with my family, and making art. Despite the pain and sorrow of this time, there is also balance and most of all, there is love.

I used to work for a not-for-profit organization that developed social emotional learning curricula for schools. Schools bought the program through a federal grant program. They were doing really well. Then there was an election. The new president had different priorities. There was also some accounting problems within the organization. To make a long story short, it was announced one day that one-third of the employees would be laid off and that people would be notified in two weeks.

This was an extremely stressful two weeks in late spring. I dealt with this by toiling in my flower garden daily, labeling nearly of my plants with markers. I must have put out hundreds of markers.

Sounds a little batty, huh? It was actually quite meditative. I hadn’t started formally meditating yet but looking back, that is what I was doing. I was a bit of a mess during that time and as it turns out, I was one of the people laid off, but without my garden work, I think it would have been even worse.

As I’ve mentioned, my dad has been quite ill. My mom is care taking around the clock. I know that they both very much appreciate the support they are getting from my brothers, their spouses, and from myself, not to mention from their neighbors.

My mom told me recently that she was worried that the support I was giving to them was too much for me. I told her, “I’m not going to lie and tell you that I don’t feel it but you and Dad are top priority. I want to help you. I am glad to help you.”

I have days when I am sad. But that is understandable. My dad is suffering. To love deeply means that there is pain when a loved one is hurting. This is a hard but normal part of life.

Self-care is also a top priority. I re-arranged my life six years ago to make room for that and I am very assertive about protecting that space. I meditate, I walk, I do art, and I make Indian food.

Cooking has long been a passion and a meditative activity for me as long as I am not feeling in a rush. I discovered an Indian cook book for my electric pressure cooker. The recipes are delicious. I love Indian food and had not previously made it. It is also well-suited to my dietary restrictions as long as I skip the breads.

My freezer is full of delicious curries, all vacuum-sealed into dinner-sized portions. I started out doing this as a way to help my brother and sister-in-law because my sister-in-law was having foot surgery. I told them that I would make them dinners. So I did. Then I gave them more. Now my freezer is full and theirs is, too. My husband says that our freezer looks like a library. It’s full of stacks of  labeled bags. I also keep my fridge stocked with home-made Greek (strained) yogurt.

Making curries, dals, and biryanis is meditative and delicious.  It is also a blessing to give to others. If my dad could eat spicy food with moderate fat, I would give some to my parents, too.

Curries can be healing to make and to eat.

I wish you a day full of peace, love, and flavor.

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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