Saying Goodbye, Part 7: The Wee Small Hours

shadows

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)

acceptance

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 5: To Treat or Not to Treat

 

crazymaking

artist: unknown

On Wednesday, my sisters, brother, and I, gathered to discuss how to proceed in my dad’s care. Do we continue treatment or begin comfort care in the hospital? As you can imagine, it wasn’t an easy decision to make.

My father had a second swallow test, which he didn’t pass, and we were told that, due to the dementia, his inability to swallow was irreversible. Mind you, the speech therapist didn’t say he had difficulty swallowing but that he was UNABLE to swallow.

What does this mean? Continued treatment would include a long-term feeding tube (with it’s own set of complications). As I said before, continued treatment would also mean that my father would remain incontinent, have difficulty being mobile (most likely involving being bedridden),  and have progressive dementia.

Comfort care would involve removing him from his IV and antibiotics, and allowing him to die in the most comfortable way with pain killers.

This was not what I was expecting when I made the trip to visit my dad last Saturday.

Practically it was an easy decision for us to make. My father, like many men, is a proud man who doesn’t want to be dependent on anything or anyone. Throughout his life, he never was. He is a Texas born, self-made man who was born to Mexican parents and raised in extreme poverty. He worked hard from a young age (he never had a childhood), and managed to not only provide for his family, but his parents, siblings, siblings in-law, and their family’s as well. He bought his parents and sister a home before buying his own. He prided himself on never needing a handout or public assistance. With his conviction, and hard work, he not only survived, but thrived in his lifetime.

We all knew that my father wouldn’t want feeding tubes, being incontinent and being bedridden, and especially, needing his basic needs cared for 24/7. So yes, practically, the decision was an easy one. We would stop treatment and beginning comfort care.

Emotionally the decision was grueling.  “What if…” and “Maybe…” kept fucking with our hearts and minds. “Is there something else that can be done?” “These can’ be the only options!”

As a family, we made the decision to stop treatment, but didn’t say anything to the doctors. Instinctually, I think we knew that we needed to sit with the decision for a while before making anything final.

 

Mercy

munch_das_kind_und_der_tod_kb
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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