The Sweetness of Life

There are some things that so easily serve to bring us joy in life, to make us remember that we are lucky to be wherever we are, to show us perspective if only we are willing to see it:

A ray of sunshine breaking through the clouds after a storm

The sound of shells tinkling that can only be heard in the stillness underneath the ocean

The sweet surprise on a newborn baby's face when his eyes focus on something for the first time

The taste of too-strong kool aid

The sound of a grandparent singing a made-up song to a grandchild

The sound of siblings laughing at something only they recognize as funny

The drop of one's stomach on that first downhill of a roller coaster

The sight of a loved one's face in a photograph

The sound of crickets on a summer night with no curfew

The tears of pride that come from witnessing your child show kindness to another person

The pride felt as the National Anthem is played during an Olympic medal ceremony

Hearing a song on the radio that holds special meaning

Seeing the color of a flower as it's just begun to bloom

Seeing a baby smile in his sleep

Smelling honeysuckle, wisteria, or hyacinths at the start of a new season

Opening a new book, full of anticipation for the words ahead, and

Closing it later with the swell of satisfaction from the read.

Mustering up the courage to set a goal, to try something different and new, 

With a parachute of surrounding support from friends and family.

A Call for Awareness: A New Goal

As I have shared before on this blog, I am very passionate about my work as an occupational therapist, and for many years I have considered myself an advocate for individuals with disabilities.  However, it wasn’t until I became a caregiver of a person with a catastrophic illness that I really “got it.”  It’s a club no one really wants to join, but at some point many of us will, and, through my experience in helping to take care of my dad as he went through treatment for the brain cancer that took his life a short time later, I learned things as a health care provider, as a daughter, and as a person that I likely wouldn’t have otherwise.  

In today’s health care system, the bottom line is so often seen as the dollar: what's stressed is funding and reimbursement instead of quality patient care.  As a medical professional, I know that it’s easy to get caught up in productivity quotas, documentation, and administrative spreadsheets and paperwork.  But very few of those of us, if any, got into this field for those reasons; by and large, we became health care providers to try to help people.  Somewhere along the way, though, in many cases, our priorities are shifted.  Our focus is changed: we go from looking towards the horizon to staring at the road just in front of us as we work to get through the day-to-day procedures of our jobs.

Like a lot of times when dramatic realizations occur, something happened in my life that caused me to rethink my focus, to shift my priorities, to change my perspective.  Through telling the story of the health care that was provided to my dad during his ten-week long battle with brain cancer, I want to challenge the way other health care providers think about their patients, in hopes that that shift in perspective will help them to provide better care to their patients, especially those who are facing life-altering illness or injury.  I have decided to set a goal of writing a book, one that will come from parts of the story as it has already been told through this blog and from added accounts of what happened during the time of my dad's illness.  My goal is to tell the story piece by piece on this blog so that it can be shared in book format with people who are involved in the treatment and care of individuals with life-changing illness or injury.  

Through this project, I want to bring awareness to other health care providers and rehab professionals about the importance of recognizing that every patient has a story.  I hope to encourage those in the medical field to remember to look towards the horizon as they care for each patient, to think outside of the box, to see things through the patient's eyes, to understand that what they think is important for a patient's recovery may not be the same as the priorities of the patient, and to realize that supporting a patient's family is part of every intervention.  I want to urge rehab professional and others in the health care field to do their part to assist families in accessing services for both themselves and for the patient so that adequate support will be available even after discharge.  I want to remind health care providers that they are in a position to share their expertise in ways that have meaning to the patient, regardless of changes in function or of life expectancy.  I want to emphasize the fact that compassion is a part of every good treatment plan.  I want to tell this story with a goal of inciting a shift in perspective by underscoring the importance of patient-centered intervention and care of the patient as a whole, not just in medical professionals but in everyone who may one day be involved in the care of someone with a life-changing illness or injury.

Stay tuned ...

Worrying

For as many things as I like to think that I got from my dad, whether by nature or by nurture, we had one core difference: I am a worrier and, simply put, he wasn’t.

I, like others with tendencies similar to mine, call it planning, organizing, taking care of the details.  I consider it a necessary part of life and, truth be told, I do it pretty often; his philosophy was that whether or not one worries is a personal choice.  He and I had many conversations about this topic over the years, including several during the weeks that he was sick, and he told me many times that from his perspective there were alternatives to worrying, like “just doing it,” or “going with the flow.”  He was a great list-maker, often leaving sticky notes and legal pad pages of reminders for himself around the house, on his desk at work, and even in his car.  That, he said, was a way to get worry off his mind.

That stuff doesn't work for me, though.  I don't feel like it's my choice to worry or not to worry, and making lists (as I do as often as my dad did) lessens the worry but doesn't turn it off. 

This is what a supreme worrier I am: I often read books while thinking about trying not to leave a mark on the book that will affect its condition.  I try my best not to get smudges or water marks or creases on the pages as I read.  My dad, in contrast, concentrated on thoroughly enjoying a book as he read through its pages.  What a joy I have found it to be to look back through the books he read and to see the marks he left behind, the crumpled pages, the sticky notes, the underlined and notated passages, and the dog-eared corners.  What pleasure it brings me to look at those things and to know that my eyes are where his once were and that he so completely basked in the moment when he was there, on that page in that book.  It’s like seeing the scrawled “I was here” written somewhere, and it makes me smile and warms my heart.  It also sometimes makes me think again about the benefits of worrying less, or, as my dad would say, choosing to do something besides worrying. 

Maybe that’s why the anxiety that Dad experienced during his illness, especially during the last two weeks of his life, still haunts me so much.  It was so uncharacteristic of him to be worried, and the rest of my family and I felt so powerless in our ability to quiet his fears and quell his distress.  More than anything during his last days on this earth, I wanted to take away that worry, which I knew would ease his pain. I think back to his last night in the hospital and to the next two nights after that when I took a turn sitting up with him as he struggled to sleep and as we worked to get control of the panic and the pain, and my heart hurts to remember the worry etched in his face.  Sometimes the medicine would help, but more often it was the presence of someone he trusted completely that seemed to help ease his mind.

I remember sitting beside his hospital bed in the semi-darkness of my parents’ den after he’d come home and listening to him worry aloud about things that he could not control.  I tried telling him not to worry, I tried to let him know that we only needed to focus on the really important things, and I tried to convince him that others of us would take care of the things that seemed to be on his mental to-do list, but that just seemed to agitate him more.  Finally, I waited for him to pause to take a breath, and I said, “It’s going to be okay, Dad; I hope you can choose not to worry so much,” and he turned toward the sound of my voice in the darkness as if those words were my arms going around him.  A minute later, the talking stopped and his breathing slowed into the rhythmic pattern of sleep.  I stood up to cover him with an extra blanket and then tucked in beside him, half on the couch and half on his bed, with my head on his shoulder, thinking that maybe I could absorb the burden of the rest of his worries during the remainder of the night.

Not Knowing: Grandmom's Story, Part 3

Continued from Not Knowing, Grandmom's Story Part 2

In reading the book "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying," by Maggie Callanan and Patricia Kelly, I came across many things that spoke to me in regards to what my family and I had experienced during the end of Dad's illness.  I read the book with a goal of gaining some insight and perhaps even some perspective about my dad's death, and, in the process, I began to see that there might be another reason for the recent changes in my grandmother's emotional state besides the cognitive decline associated with her medical condition.

One section of the book is about things that may be needed in order for a person to die peacefully:

"Some people realize a need for reconciliation.  Some request the removal of a barrier standing in the way of a peaceful death. Still others need particular circumstances to die peacefully - perhaps choosing the time of their death or the people who will be there.

Realizing what they need, dying people often become concerned; some communicate a tremendous urgency.  Coherent requests usually bring action.  But requests that are vague or indirect may be missed or ignored, leading to frustration, anxiety, and sometimes agitation.  If the awareness of an important need comes late - when death seems to be imminent - the person may delay or prolong the process of dying in an attempt to settle an issue or effect a final reconciliatory meeting.

A person's anxiety, agitation, or prolonged dying can be upsetting for everyone ... Often, the response to agitation is to sedate the patient ... Sedatives may help relieve agitation, but medicines alone are not the answer."

Reading these passages caused me to see some things in a new light, not just about my dad's passing but about Grandmom in her terminal condition, including the fact that our decision not to tell her about Dad's illness or his death might not be the best choice.  According to the authors, "Sometimes a family decides to withhold info about the death of someone the dying person knows.  While this is typically done out of kindness and concern, the truth often brings peace instead of discomfort or upset to the dying person."

I shared that insight with my mom and my sisters, and we decided that Grandmom needed to be told about Dad.  None of us wanted to do it, but we believed it was in her best interest and we hoped the information would help to ease her mind.  As my sister Jennifer recounts, "We were so worried that she would get the idea that he abandoned her, that he didn't want to visit her again, or maybe even that he didn't love her anymore, and of course we wanted to do anything we could to prevent her from those thoughts, which of course were absolutely untrue."  We resolved to tell her the next time one of us could go with Mom to visit her. 

Shortly after that, on the Tuesday before Dad's burial was scheduled on Saturday, Jennifer arrived at our parents' house, and she and Mom went together to see Grandmom.  Here is Jennifer's recollection of what happened when they got to the nursing home:

We rounded the corner and saw that Grandmom was sitting up in her wheelchair, which was parked just outside her bedroom door.  We greeted her, and then I kneeled down right in front of her and held both of her fragile hands in mine.  I said something like this:

"Grandmom, I want to tell you something that might make you sad, but I feel like you need to know, and  I don't want you to worry.  Bill was sick and had cancer.  He went to the best doctors and the best hospitals, but, even as strong as he was, he was not able to fight off the cancer.  He passed away and is in heaven now with God and with Roy [our grandfather, Grandmom's late husband].  He is not in any pain.  You should not worry.  Vicki and Stephanie and Nancy and I were all with him while he was sick, and we took good care of him.  He always asked about you and tried so hard to come back to see you again, but he was too sick.  You were so important to him, and he loved you so much.  We promised him that we will take care of you no matter what. Then, when God decides it is your time, you will get to go to heaven and be with Bill and Roy again."

Somehow I did it without crying -- I just felt really focused on giving Grandmom some relief and definitely did not want to cause her any additional sadness or worry about why I was sad, and so I just talked clearly and slowly and looked right into her eyes and told her.  She wasn't really able to talk much, but she definitely seemed to be listening to me, and I truly think had a look of relief and understanding on her face after she heard the news.  She did not cry.  A little while later, when we left, I hugged her again and told her I loved her and that Dad loved her and that we did not want her to worry. 

In the days that followed and over the course of the next two months, the nurses reported that she was sleeping better and was much less anxious.  She required fewer medications and wasn't crying anymore.  We like to think it was because she understood that her son loved her until he took his last breath and that, given the information about what had happened to Dad, she was able to hold onto the belief that he had gone on ahead but was waiting for her in heaven. 

To Be Continued - Part 4 of Grandmom's Story, Coming Soon