Goodbye Part 10: Earthquakes

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Arna Baartz, “You Are Beautiful”

The next few days felt silent. I took things slowly and found comfort in the company of my sisters. We shared memories about our father and continued to ask questions out of confusion. I mean really, what just happened? It was all so fast, so confusing, and so severe. We continued to re-trace our steps, question and doubt out decisions, and remember that my father’s quality of life was at stake. How do we begin to make peace with all of this?

Leaving my father’s home was harder than expected. Each day I was there kept me tethered to the lingering essence of him. As long as I was there, I was still “with” him. But I can’t stay forever (or can I?), and at some point I must re-enter my altered life 3-hours West.

So I wandered into his bedroom, saying goodbye to it, to him, and trying to remember him here. Sitting on the bed’s edge with his pack of chihuahuas surrounding him, making it hard to get close to him.

I said goodbye to the house, and goodbye to “visits to see dad”.

It was Tuesday when I made the drive home. It went surprisingly fast despite feeling my past-life slip away with each mile. No more thinking of my next time back, or what I would bring with me next time I see him. No more calling him to let him know I arrived safely.

As I merged onto the 101 South, I took a deep breath and sighed. I could feel the difference between the dusty flat land, and green rolling coastal landscape.

Luckily my first stop was at my therapists office. I somehow managed to recount my last 2-weeks, and by the end could feel a slight sliver of my life returning. As I stepped out to my car, the warm weather felt intrusive, reminding my it was too soon to be outdoors.

Once home, I lost myself in the distraction of unpacking, vacuuming, having dinner, and laying on the couch watching mindless t.v. I slid into sleep and dreamt about earthquakes.

Saying Goodbye, Part 9: Silent Departure

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Marina Petro, “Phoenix Rising”

Friday morning came and I checked-in on my dad. His breathing was so peaceful and easy. He sounded like he was having the best sleep of his life, like he should be laying in the grass in the park on a late Sunday afternoon. I looked up at my sister who sat next to him and made a “wow, that’s great” face.

Since I was going to be there longer, I decided to mail out my rent check and pick up what I needed for the next few days. before leaving, I helped change my dad, reposition him, and gave him his medication. I hated leaving, but I knew I had to take care of these things if I was going to stay longer. Throughout this time I tried to stay with my dad as much as possible, so on those few occasions where I headed out I was antsy and anxious.

When I arrived home one of my sisters asked if I needed help. “No, I got it.” and I placed the bag of groceries on the kitchen table. I looked up to see my dad alone in the living room. “Why is he alone?” I thought. For the last two weeks someone has been by his side 24/7. Now he was there alone and it was so quiet. Too quiet. I quickly put the few cold items in the refrigerator and went to my dad’s side.

He seemed too still. I placed my hand on his chest, right above where his hands were folded. No movement. His mouth was open as I placed my hand under his nose. Nothing. “Dad. Dad…” I don’t know if it was a question or a statement, but I kept repeating “Dad” as I lightly shook him. No response. I looked down to see his belly sunken and his lips barely changing color.

I ran to my sister’s room to tell her dad wasn’t breathing. We stood next to him checking again to be sure. ” I swear” she said to me, “I checked on him 5 minutes ago, and he was breathing.” I ran to my other sister who was on the phone in another room, “Dad isn’t breathing” I told her. All three of us stood by him, each of us crying and trying to understand what just happened. There wasn’t a moment he was alone, and the one time we all tended to our responsibilities, he left. I felt flashes of guilt, inadequacy, and stupidity at my decision to leave that morning.

“This is what he wanted” one sister said. “He had said that he wanted to die in his sleep and to be found gone.” I had to believe this was true in order to keep my guilt at bay. But most importantly, my dad was gone.

We called his brother and when he arrived, we prayed, gave our words of gratitude, and bathed and oiled my father’s body. My sister played a recording of my father re-telling a story from his childhood. My father was a great storyteller, and hearing his lovely voice brought me to tears. The reality hit hard, that I would never have conversations with him, ask him how to do something, or ask him to tell me about the time when…

I made a final prayer before the cremation service took his body from his home and suddenly, it all felt so void.

Saying Goodbye, Part 8: Hospice Begins

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Jonathan Clark, “Gemini”

Sunday came and dad made it home. The admitting hospice nurse showed us how to care for our dad, and answered any questions we had. When she left I was nervous and anxious. It was up to us now, to make sure our dad was comfortable, safe, and cared for. At this point there were four of us, all sisters, rotating tasks and providing care.We rotated his position every 2-hours during the day, and every 3-hours throughout the night. Before each procedure I would tell him, “Okay dad, we are going to change you/move you/give you medication now. Is that okay?”

By now our father was less verbal. He could respond with head gestures or in the expression of his eyes. He still recognized family members, but couldn’t talk. As each day passed he became thinner and lighter. As his pain became more obvious, we had to decide between him being awake and in pain, or medicating his pain, which caused him to sleep. When you want to have as much time with your dying loved one, these are not great options, however the right decision was obvious.

One of our sisters left on Wednesday, and I felt her absence quite rapidly. She understood me most, and so with her gone, I felt alone to some degree.

On Thursday the nurse visited and helped us with concerns that arose along the way. She checked my dad’s vitals and informed us that his breathing and digestive noises were still good, and that his blood pressure was a little high. We talked about the changes in his breathing being an indicator that he was close to the end of life. It sounded like my dad might be around a bit longer, so we talked about how we could best stretch out our work leave in order to stay with him. We all decided to stay as long as we could and address any gaps in need if that time should come.

We knew that every person’s death was different, and that although there are similarities in process, you just don’t know what to expect. So we were prepared for a longer stay if that was what was needed.

 

Saying Goodbye, Part 7: The Wee Small Hours

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Artist: Vasily Dmitrievich Polenov

I wanted to spend as much time with him as possible, so I decided to stay overnight at the hospital. As you may know, when you stay overnight as a guest, you don’t really sleep. The pull out bed is okay, but the nurse visits every 2-hours and hospital noises prevent sleep from happening. I figured that this discomfort was minor compared to what my dad was gong through, and in truth, it was an easy thing to do.

During those the late nights and early mornings, we had very tender moments together. I would sit by him and telling him I love him, stroke his hair, and hold his hand when he felt pain or was having a procedure done.

Then there were the times when he responded to me. These times were what I held on for. One night, when he fell asleep, I kissed his forehead and whispered “goodnight”. As I got up to walk to my bed, he said “You’re leaving already?” I recognized that tone. It was a tone he used when I would tell him I was going home after a weekend visit with him. “I’m not going anywhere dad. I’m right here. Do you want me to sit with you?” “Yes” he replied so I sat next to him, holding his hand and loving him.

There were a few of these moments, when he would wake in the middle of the night. I could hear the shuffling of his sheets and that usually woke me up. “You okay dad? You want me next to you?” To which he would reply “yes”either verbally or with a head nod.

At other times my father would ask where he was, what happened, or how he got there. I told him he had an infection, but that it was gone, and we were preparing to take him home. I had no idea if he knew he was dying, and didn’t know if I should tell him.He wasn’t speaking much, and was unable to have conversations, much less complex conversations. I decided to trust my father’s intelligence and strong intuition, and stayed in each moment with him.

As he slept I reassured him that he was safe and loved. I asked him to trust his body as his body knew what to do. I let him know that although I would miss him, I would be okay in this world because he taught me well, both in lesson and by example. He was a strong man, and created strong women.

One day, my father asked my sister what he did. “¿Que hice?”. He asked as if to say “What did I do wrong to get me in this situation?” That night I cried and asked for some clarity on how to help my father. Then it hit me.

As a child, my father was loved, but also abused. His mother would hit him, sometimes with force and use of objects. She was angry at his behavior and took it out on him. Then when she was done, she would hold him and cry. “Why do you make me do this?” she pleaded. For years I wondered how this played out in my father life. How did this twisted experience impact him? Did he, like most children, believe the lie that he was wrong and deserved punishment?

I remembered his words “¿Que hice?/What did I do?”, and I leaped out of bed, and rushed to his side. “Dad, you did nothing wrong. You are  child of God and as such, you are perfect, whole, and complete. You did nothing wrong. I don’t care what your mother, your father, or anyone else has said. You did nothing wrong and you are not wrong or bad.”

Saying Goodbye, Part 6: Acceptance (Sort of)

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Thursday came and we told the attending physician about our decision to begin comfort care at the hospital. As the doctor spoke with us, the nurses began removing my father’s off his IVs. I found this to be extremely disrespectful. This was a major decisions, and we didn’t have the change to be with my father as he transitioned from treatment to comfort care.

It was also at this time that the physician told us that my father’s time at the hospital was limited as he was technically “stable”. Stable meaning, anything the hospital was providing, we could be providing at home. This was new to us, so we were faced with immediately having to prepare for home hospice.

As if the last few days weren’t a whirlwind already, things seemed to move in hyper-speed. My heart and mind were struggling to catch up, and my logic was trying to make sure my father was receiving appropriate care.

We continued to care for my father that day by being with him, talking with him, holding his hand, and providing people with one on one time with him. He continued to recognize people, make requests, and answer questions. His personality would appear in flashes, like when he stubbornly replied “Como que no” (similar to “Like hell it won’t”) when he was told his hospital ID bracelet couldn’t tear, as he tried to take it off.  “I want to go to Juarez” or “I want some coffee” were gifts to us. His “awake” times were brief, yet felt very rich.

That night most of us could not sleep. I found myself tossing and turning, and waking frequently throughout the night. “Did we make the right decision?”

For myself, I wrestled with so many questions and doubt in our decision to end treatment. He was slowly getting better, but his inability to swallow meant invasive treatments that we all knew my father wouldn’t want. I just couldn’t accept that there was no other way. I was willing to let my father go if that was where he was headed, but I  I also didn’t want to cause my father any unnecessary harm, and most importantly, I wanted to do right by my father.

It was early Friday morning when one of my sister’s sent us a text from the hospital, “Dad ate some food this morning…”

What the hell??? I stood in my father’s living room with my two other sisters as we scrambled to try and understand what was happening. we all reached out to physicians we knew to get some perspective.

When we arrived at the hospital we met with my father’s health care team to go over my father’s condition and options. The staff was noticeably frustrated with us, but we held firm with having our doubts and concerns addressed.

By the end of our conversation, it was clear that there was not much more that could be done with the health care team in the room. They we not going to understand us, and why it was so incredibly hard to make this decision. It was beyond the “difficult decision” regarding a parent. We just found out 11 days ago that my father had dementia, and now we are faced with end of life. Excuse me, but, it is a lot to take in, and leaves a lot of room for doubt, and denial.

From this point on, we slowly came to terms that my father was dying. Home hospice was arranged, and my nieces and nephews prepared my father’s home for his arrival. He could come home on Sunday, so we had two more hospital nights left before my father could go home. My father was expressing a desire to go home, and his rapid decline left me worried that he wouldn’t make it to Sunday.

Saying Goodbye, Part 4: Difference in Perspective

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Rorschach blot

Monday came with no improvement and my father was taken to the Emergency Room via ambulance. It was a rush of fear that went through me as I followed the ambulance to the hospital.

By this time my father’s condition was pretty bad. He was mostly unresponsive with eyes closed and mouth open. His cough was due to aspirating pneumonia, but after being suctioned at the E.R., the gurgling was mostly gone. The hours were long and cold as we waited, hoping to get some news on what was happening and what could be done.

This is when things really began to get surreal.

The doctors came to us with dire news. “Send him home for comfort care, so he can pass in peace” was the suggested action, although there was “no pressure” in making our decision to treat or not. This decision was not easy to make as the attending physician said that he couldn’t determine what was wrong based on my father’s symptoms, lab work, and scans. You read right, “We don’t know what’s gong on, so send him home to die” was what we heard.

We decided to treat as our belief was that my father was able to get stable with the right care. They gave him IV fluids and antibiotic. Slowly my father began to regain some responsiveness. He began to move a little, folding his hands across his sternum, and touching his mustache in his familiar way.

I stayed with him throughout the night, until he was admitted into a room the next morning.

For the next two days my father’s condition improved. He talked more, recognized people, made requests, and asked questions. His personality began to show again, and his vitals began to improve. He still wasn’t strong enough to get out of bed, or sit up for long on his own, but once again, we were hopeful that things would continue to improve for him.

The only thing that wasn’t improving was his inability to swallow. He didn’t pass a swallow test, but the speech therapist said she would try another test when his strength improved.

Up to this point, the attending physicians inquired on our decision to keep treating or begin comfort care. In the spirit of informed decisions, we decided to meet with the palliative doctor to better understand what this option meant.

The information she provided was grim. Worst case scenario seemed to be all she could give us. Which makes sense since that is her job. But we weren’t ready for death yet. Not with my father’s condition improving by the hour.

Options to treat were also reviewed with the palliative and attending physicians. The treatment options were more invasive, as they included feeding tubes and dialysis.  Then there was the issue of dementia.

Even with my father’s improvement, and even with invasive treatments, my father’s dementia would still be present and progressing. The degree to which he could improve with treatment was unknown, but what was known was that dementia wasn’t going anywhere and would only get worse.

Although there was no rush, we felt pressured. It was an implied pressure in the urgent tone used by nurses and doctor. “He is not going to improve, he will only get worse, let him go” was what I felt.

I became angry and frustrated at the lack of possibility in the hospital staff. They were treating my father as if he came in with a toe tag and death certificate and had no idea of what he was like weeks before being admitted. They met an 84 year old man with a dementia diagnosis, and saw a dead man. I saw my father who was strong and a fighter, and this discrepancy between myself and the doctors felt powerless and infuriating. The doctors would say I was in denial.

 

Saying Goodbye, Part 3: The Danger of Wishful Thinking

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Lines Hold the Memories” by Silvia Pelissero

Sunday morning arrived, and my father was still silent. despite his increased strength the day before, he began to show subtle signs of decline. He needed more time and help moving from the bed. His ate less, and had more difficulty drinking. because of this he was unable to take most of his medications.

A Hospice nurse came by to take my dad’s vitals and give us some suggestions of how to help my father with these new challenges. Now, I was a bit surprised to hear that Hospice was providing services for my father. I know Hospice provides end of life support, but, my father wasn’t at the end of his life. He was just diagnosed with dementia and, and had a UTI which caused delirium. The UTI and delirium are treatable, so what is Hospice doing here?

My sister (who lives with, and cares for, our dad) informed me that my father’s primary care physician connected her with home support services to care for my dad and his growing needs. These support services provided the hospital bed, bedding, bathroom modification supplies, nurse visits, bathing, and 24/7 access to a nurse. This made sense to me because one person can only do so much. Since my father’s primary care physician connected my sister with home support to care fro my dad, and this support showed up as Hospice, I assumed that Hospice also provided support care in addition to support fro end of life. If this sounds confusing and illogical, that’s because it is.

That night my father began to cough. His cough became louder and gurgled as the night went on, so we called the nurse who provided a machine to help suction my father’s phlegm. Although it helped some, the cough continued throughout the night.

Without much food, hydration, or medication, I began to worry and mentioned taking him to the emergency room. After talking with my sister’s we decided to se if he got better in the morning, and if not, then we would take him to the ER. Our hope turned to wishful thinking.

Saying Goodbye, Part 2: Hope

 

 

know hope

artist: Know Hope

I could feel my nervousness as I approached my father’s home. Based on what I was told, I expected to see my father less verbal, but mobile. I arrived with photos I planned on looking at with him, and hoped to listen to music together.

However when I walked into his bedroom, I was surprised to see him sitting up in a hospital bed, and not reacting to the people around him, including myself.

“Hi dad!” Nothing. No look of recognition. No eye contact. In that moment my soul must have slipped out of me because my emotions shut down and my practical self took over. In an instant I thought to myself: “Okay, so this is the situation now. Adjust to it and meet him where he is at.”

If I was sad or scared, I must have shoved it far behind me because I easily sat next to him and tried again, “Hey dad. It’s me.” Still nothing. I looked as his hands, and was shocked to see them so thin and bruised. I put my hand on his shoulder and felt his bones. I ran my hand down his arms, and they were so thin. What happened??

I held his hand, talk with my sisters in the room, and looked into his eyes, which seemed to be staring at nothing. I fed him slowly and he ate slowly. John Wayne’s “The Searchers” played in the background. I stroked his hair and studied his face, wondering if he knew I was there.

It took three people to get him up and out of bed. One to steady the wheelchair, and two to maneuver him. It was a slow process as we gave him time to gather his strength for each move. It was noticeable when his strength was there. I could feel his legs, arms, and hands getting stronger as he used the walker, then eventually getting into his wheelchair.

He was still able to use the toilet as long as we helped him onto it. I sat next to him and talked with him. Telling him it was okay. That I love him. He would look up at me with a questioning expression, and fold his hands across her sternum. This became a common position for him over the next few days, as if he was in deep thought. Then he’d look up at me again with eyes that seemed so lost and sad. As if asking me”why?”

That afternoon he sat in the wheelchair in the kitchen and ate lunch and dinner. The fact that he ate all his meals, and took all his medications, was a good sign. HIs brother was there and I could see the familiar attention my dad set on him as he spoke. My dad’s strength began to show as he held a glass, squeezed a tension ball, and walked two laps around the living room with his walker. We were hopeful that his health would progress.

It was Saturday and I planned to stay until Sunday evening. But now, I just couldn’t leave. Not with him like this. How much better does he have to get before I felt okay enough to go back home? My ignorance believed he would get better, because he always got better when faced with debilitating set-backs. Even with the dementia, he would still get back on his feet right?

Saying Goodbye, Part 1: Assumed Beginning

 

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Eva Maria Toker: Cold Hands

This series of posts is going to cover my recent experience with several topics including: dementia, choosing between treatment and comfort care, hospice, and death. As most of my posts go, I share this experience, not only for my own healing, but for anyone else who is, or has, gone through a similar experience.

When this series of events began in early February, I knew that I wanted to document it, however, I also wanted to spend as much time with my father as possible. So it is now, after his passing, that I am putting words to this experience.

Prelude

This winter brought a cold snap to several California areas. Because of this, my 84 year-old father was spending more time in bed, saying he was too cold to do his normal activities. This worried me as I know that, minimal activity can wreck havoc on the body and mind (especially in the elderly). I live 3 hours away, so my options to help get him out and mobile were very limited. My sister who lives with him, also reported that he was very resistant to getting out of bed, and grudgingly stepped out for doctor appointments.

Assumed Beginning

On Saturday February 6th, I received a call from my sister (who lives with my father). She informed me that our dad was exhibiting strange behavior over the last few days such as: withdrawing, low appetite, not talking, bowel incontinence, and wandering. She thought he was really depressed. I said “Take him to the Emergency Room.” My father had a TIA (mini stroke) almost 10 years ago, and I worried that he was possibly having another stroke.

I spoke to him by phone as he sat in the Emergency Room, and I did not recognize the person on the other line. My father is talkative and a great storyteller, but this time, he only responded with “yes” and “no”. It was as if someone had zapped my father’s personality out of him.

After several hours at the Emergency Room, it turned out that my father had a Urinary Tract Infection that caused delirium.

When I heard this I was confused. A UTI seemed like such a minor thing to have caused such a significant change in my father. When I spoke with  my sisters, I realized we could no longer avoid the “A” or “D” words:  and Dementia.

His Monday morning appointment with his primary care physician confirmed our fears, yet I still wasn’t prepared to hear that my father had Dementia.

A dark ball of fear rolled down into my belly. My father, as I knew him, was gone. In that moment I knew that I would never talk to him like before, that I would never hear his spirited voice recall stories from his past. I thought about his decline and worried about his care. How bad will this get for him? For us?

That week I kept in touch with my dad, my sister, and her sons who were providing round the clock care for him. His wandering resulted in him being found in the back yard at 5 a.m., or sleeping in the spare room he never uses, or standing in random places for prolonged amounts of time. The worry of him walking out the front door, or falling into his backyard pool was very real, so changes were made to help reduce this worry.

As for myself, I was in shock. I went to work as usual, but felt like I was a shell of a person. I worried, and cried, and collected myself just enough to do what I need. I swayed between healthy eating and drowning in junk food; I would “toughen up” and fall apart; I took charge as a grown up and was a  scared little girl.

I decided to visit him on the weekend, and tried to prepared myself to see my father in his new reality. I felt like I couldn’t get there fast enough as I made the 3-hour drive to his home in the early hours of Saturday morning.

Mercy

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Edvard Munch: “Death and the Child”

Most people say “When my time comes, I don’t want to be hooked up to machines! Pull the plug, just let me die!” Oh, but it is not that easy when you, as the family member, have to make the decision for your loved one. In my case, my father.

To treat or not to treat? It is a gut-wrenching, sleep-depriving, desperation grasping, doubt-filled, guilt-ridden nightmare. It’s the Serenity Prayer incarnate.

Sometimes, death doesn’t stare you in the face and take charge. Sometimes death dares you to dig deep down beyond your own existence, beyond everything you thought you knew. Sometimes death calls bullshit on your spiritual capacity to allow, surrender, and trust. Sometimes death turns you into a terrified child lost at the department store, worried she will never-ever go home again or see her parent’s face, or feel their embrace. Sometimes, death just sits back, and watches you writhe, like an earthworm in the dry daylight, as you wrestle with your humanness.

And then there is the one who breathes an inconsistent breath, whose fate is in your hands. And all you can offer is the the most tender mercy that arises from a place beyond the psyche and without words.

2/26/2016

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