“Let me know if there is anything I can do”

“Let me know if I can do anything.” How many times have we uttered that sentence when a friend, distant relative or a colleague has informed us they have suffered a loss of a loved one? Don’t get me wrong, I’m sure most of us mean it and it seems like the right thing to say along with “I’m so sorry.” When I look back through my life, I can easily count how many times people have taken me up on my offer. As you’ve guessed, and I’m sure you can relate, it’s 0 number of times. In a time of loss and pain, people don’t want to ask others to go out of their way to help. They aren’t going to tell you they have no energy to cook, need help watching children, money to pay the bills or buy groceries. They won’t tell you they just need a hug and your gentle presence. We are afraid of impinging on people’s privacy and space. We don’t know what words to share or how to behave and in that uncertainty of what to do or say is where the subsequent isolation occurs for the one grieving. The isolation then leads to a sense of loneliness despite the rich number of friends and family willing to help but not knowing how.

Now that I’ve been through losing a close family member to cancer and experiencing the pain of grief, our family was grateful for people’s thoughts and prayers, however, we very much appreciated those friends who did simple things such as bring us a meal, watch our children (so we could have some quiet time) and checked in on us to see how we were doing. It was those who walked in our shoes through their own similar experiences who didn’t shy away, knew the right words to say and were insistent on being there for us in a tangible way. So what can you do if you haven’t walked in our shoes but want to be there for your friend, colleague or relative who’s lost a loved one? Here are few suggestions which really helped our family.

1. Ask “How are you doing?” The question is open-ended enough that it allowed me to elaborate on the days I felt like talking or cut the conversation short on the days I didn’t. There were days I didn’t want to talk about my feelings, however, I felt more alienated by those who never asked. The common mistake most people make is to assume they will make the person more depressed by asking, hence, reminding them of their pain.

2. Bring a meal. Sounds simple enough, however, this was much appreciated on several occasions when there was no time or energy to feed my family. Close friends didn’t ask if they could bring us a meal, they just asked what time they should drop it off.

3. If there are small children in the family offer to watch them or pick them up from school. We were so grateful for those families who took our children for play dates or out to meals with their children. It gave us some down time to let us be present with each other and our feelings.

4. Consider gift cards. This is helpful whether there are financial constraints or not. If there are financial constraints, I think it’s harder for people to accept cash, therefore, a gift card to a local grocery store or department store will be appreciated. On the other hand, we were given gift cards to local restaurants, which as stated above, allowed us to spend more time with family than worrying about cooking and cleaning.

5. As a follow-up to #1. We noticed immense support initially, however, it began to dwindle as the months went on which is understandable, however, those that have walked in the same shoes have continued to check in with us and see how we are doing. Nothing too intrusive but that great open ended question of “How are you doing?”

This is a short list but nevertheless a few suggestions that pulled me through some of the darkest times during the grieving process. For those that have gone through losing a loved one, what to do for a friend feels more natural, however, I hope this blog post will help others who genuinely want to help but don’t know how. It would be great to hear more suggestions from those who have experienced support from others so that I can expand this list.

-Hospice Physician

 

 

 

Killing Cancer

I’m an assistant clinical faculty member at a local university which trains nurse practitioner (NP) students. For me, the next greatest thing to providing patients with Palliative Care, is to teach it. I enjoy teaching immensely and when the NP students rotate with me it’s great to see their growth over a 10 week period. As part of their grade to pass, they must do a reflection project. Although “project” may seem involved, I leave it up to the student to decide what they are going to do. I give them some examples of students who did it during my fellowship, which included poems, photography, water painting, playing an instrument, interpretive dance etc. The only criteria is that it reflects or ties in to what they have learned through the rotation. The following essay was written by one of my students and she gave me permission to post it here.

Killing Cancer

I think “end of life” first registered when I was 9 years old.. I found a copy of Kubler Ross’s On death and Dying in my home. Probably present because of my father’s exposure to his own father’s untimely death at 50 years old. and I preceded to weep on the front porch where my parents found me. “No, Darla, no one is dying.”

The youngest of four. I was really a “Daddy’s Little Girl”. And I think as my parent’s lives and marriage got better, I became their love child that got to explore a better time with them. But shortly after my 12th birthday, in January, 1985, a weekend get-away with my parents was cancelled. Something about dad having headaches and having to go to the hospital.   When my father called from the hospital to tell me the news that our trip was cancelled, I am pretty sure I was enraged and no idea what was in store.

My brother came home that night and said “Don’t worry, Darla, he just has headaches.” The next morning was different. My mother sat me on her lap and told me that “Dad was going to die; he has a brain tumor.” If it wasn’t so sad it would be hysterical. There was no hope, no prayers. Just that. He is going to die. Period.

I got every stuffed animal and poster off my wall to bring to his “bright eyes” at the Mass General Hospital. My mother said his eyes were bright because of the high doses of steroids given to relieve pressure on his brain. They did the craniotomy on January 13: his glial blastoma was too entwined in his brain they told me. It was too twisted together. It was like two hands wrapped together. This tumor resembled his namesake, his own father’s brain cancer. Just a different area of the brain and more aggressive.

They told us he had 9 months to live. Did he and my mother discuss ‘goals of care’? I guess. They made the decision for him to Die at home. This apparently not well-supported by my father’s family. His children, us, watching his last hours and days of life.

At month 8, I went to a friend’s house for a sleepover during which time he declined so rapidly that when I returned that weekend, he was in a wheelchair and was nonverbal.

Once confined to bed, I used to lie in his adjustable bed with him, much like my own children lie with me. And I remember how he smiled when the around-the-clock private duty nurse said, “Look Barney your daughter Darla is here. She is helping to turn you…” I remember those bright eyes shining when he would see Redd Foxx on the TV. It was so innocent and beautiful.

Family came and went. Hurricane Gloria blew into town late September, 1985 and I danced and danced and danced in the wind.

I remember his breathing became shallow and slow. And looked like it might stop. And then it would just start again.   My mother says now that he died Christ-like, saintly. She said he died free from sin. He was just skin and bone.

And at 9 months on October 1st, just as the doctors told us, he died. In our dining room, in an adjustable bed. Holding the precious hands of his namesake, my brother. the only one that was his by his side. He took his final breath.

I awoke to my mother crying and she told me he was gone and I jumped on his adjustable bed and hugged his lifeless body.

My mother, a nurse, said she didn’t sleep for a year. Having to sleep in a day bed close to his adjustable bed for fear that he might get up and fall.

Ironically, hospice, wasn’t popular my mother said. My father missed the Hospice Medicare benefit by one year.

And he also missed Duke University killing Brain Cancer with Polio by 31 years.

I know why it is so important I tell you this story. Because nobody talked about him after he died. I mean nobody. It was too painful for my mother and my older siblings were kind of tuned out. My family kind of fractured after he died. And we have been trying to put it back together ever since.

My siblings and I, we became survivors. In a unique club.

Why is it important that I tell you this? Because life has supported my healing and I have found purpose. I guess a 12-year old doesn’t understand the finality of life. Adults might. There are no videos, no tape recordings of him. Few pictures.

And it shaped me, it led me to be here.

But I found that just like someone who has breast cancer gets involved in the fight. I am getting involved in the fight to support people who are dying that happen to be living. Because maybe if we just start talking about dying, we really won’t miss living.

My dad missed a lot. He missed his son-in-law’s. And you know he really got cheated. He told me he really only had children to have grand-children. And he really missed out on that. But now I get to see his “bright eyes” in my children’s eyes. And I do. And I am so happy that happened. And I am really happy that this happened (rotation in Palliative Care). And I got to be here. Because it is very important. And I tell my children that all the time.

-NP Student

 

Trapped In A Nightmare

In this post from the blog Team Jonny, it’s been a week since Jonny died and Jonny’s girlfriend (JGF) writes about her grief. I highly recommend this blog to everyone, especially to those who may be experiencing grief. She’s written several entries after Jonny’s death and she is an open book expressing her raw emotions and feelings. I think most people don’t know how they’re supposed to feel after the passing of a loved one, however, I think learning about the feelings of others in the same situation can help them through the process. By reblogging her entry I hope this will touch and help at least one person who is grieving. Thank you JGF for continuing to share such an intimate piece of your life with us.

Team Jonny

It’s been a week now.
I genuinely don’t know how I’ve done it.
It still feels as raw as it did on the day and, if it’s possible, I miss Jonny more each morning I wake up without him.

I am completely uninterested in a life that doesn’t include Jonny Walker.

Don’t worry, I’m not suicidal! If anything I want to live more than ever before; why would I take my own life when there are people like Jonny who don’t have a choice?

There are people out there who are literally dying to be alive.

No one should ever abuse the gift of existence; it’s a cliché but it’s never been more prevalent to live everyday like it’s you’re last.
Especially for me; I’m going to travel the world. I’m going to work hard. I’m going to follow my dreams and jump into a career that brings me happiness. I’m going…

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Love Locked

Team Jonny

I’m going to write about the past. 
Jonny is very near the end and today is not the day to delve into how that makes me feel. He has not woken up for over 15 hours and when the time comes, he will go. And it will be right. And we’ll be okay. I think.

At the beginning of this year Jonny took me to Paris because I’d never been abroad. After a tricky few months of singledom it was an attempt on his part to win me back. It took me a very long time to decide to go; I thought at the very least I owed him closure on such an intense chapter of our lives.

The whole day was beautiful, we took the Eurostar there and back, running from tourist attraction to tourist attraction in a bid to do ALL OF PARIS in a 10 hour period.

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Healing the Healer

By: HPMFellow

I’ve had the honor of serving many fascinating individuals with life-limiting illnesses. I’ve considered them some of the best teachers I’ve ever had in the nuances of medicine and life. Treating patients who come from the medical community is a particularly unique experience for me.

I’ve tried to pinpoint why it feels different – it could be the mild anxiety that someone well-versed in my field may detect my deficits. Or – conversely – maybe it’s that I’ll make too many assumptions about what another medical professional may understand about their illness, and miss an opportunity to educate. Mostly I think it’s the recognition that those who heal succumb to the very same illnesses they attempt to heal in others.

Recently, I treated a former mentor in our hospital’s palliative ambulatory clinic. I reviewed her medical data first – “Recurrent metastatic intestinal cancer, declines further chemotherapy. Please assess for symptom management.” I studied the regimens she had previously been on, her recent scans, tried to guess which symptoms exactly I’d be assessing. Then I reviewed her demographics to get a feel for educational level, and felt that chill that comes with familiarity. She was an employee at my health center. Finally I looked at the place where I should have started – her name. A familiar one. This woman was responsible for most everything I know about the delivery of obstetric health – both in my training and personal experience. I felt crushed. I let my supervising attending know I felt this way. I still wanted to participate in her care if she didn’t feel uncomfortable with the dynamics of our new roles. I knew from prior experience that she’s a humble woman, but perhaps she may feel the need to protect the privacy of her condition. He went to ask her permission first.

My mentor graciously allowed me to assist in her palliative management. To my pleasant surprise – I felt like her doctor. I know I am. But I felt like I was. I had assumed I’d still feel like her student or patient. But that role faded away, and it felt very natural to speak openly to her about her care in an empathetic and professional manner. Could this be the developing confidence and competence I’ve been working all year on?

Later that evening, however, as if some higher part of my brain knew that it was safe to let my guard down – I did. And I was crushed again – though years had separated us from our former roles, I knew I’d be losing a teacher soon, and that still affected me.

I reflected on my past experience losing a mentor of mine from medical school. We had assumed she was unsinkable because she was in her field – a self-proclaimed “Trauma Mama” of the ER. Even when she had told us her cancer had metastasized, she hadn’t slowed down – continuing to mentor students, and in fact dabbling in her own palliative medicine training. Burning brighter and brighter until her eventual end on earth.

A passage from one of my favorite books – an Arthurian metaphor for life – brought me comfort when I lost this former teacher. It reads:

“I wanted to give you a parting gift, and I could think of nothing better than this.” He pointed to the road beneath their feet…“Roads are the sign of the wizard. Or did you know that?”

“No.”

“Then remember what I say. A wizard is one who teaches by walking away, and when you can walk away yourself, you will be a wizard…. I see you don’t quite believe me,” Merlin said. “But walking away from me really is the greatest gift I can bestow upon you.”

…The very image of Merlin faded from his mind, until only a lingering voice remained, saying, “I have led you to the secret places of your soul, now you must find them again, this time by yourself.” In a moment this voice too faded away. The boy passed the bend, kicked up a puff of dust, and smiled. He suddenly knew that every time he saw a road he would think of Merlin.

My patient and current teacher emailed me later to say “It was comforting to see a familiar face.”

It was comforting for me as well.

Chaos, cancer, family, and love: The value in just showing up

Great article by blogger Ann Brasco (Twitter @annbrasco). A powerful paragraph in her entry which stood out to me reads, “Maybe its about less doing and more just being present. In a world that pushes us to fix, cure, act and immediately alleviate, the value of just being present is often overlooked.” Early in my Family Medicine career and while contemplating doing a fellowship in Hospice and Pallative Medicine a chaplain took me on a visit and taught me the value of just being “present.” Sometimes two souls sharing the same space, the same air, the same warmth is more meaningful than we’ll ever know.

Chaos, cancer, family, and love: The value in just showing up

The Ugly

Written by: HPMFellow

The good and the bad. I had seen both sides of death before considering a career in helping people live and die better. The love of a family that comes together to make their loved one’s passage a smooth journey. The unfortunate wedge of unresolved transgressions that can tear another family apart when emotions are running high. But the good and the opportunity to do good has always outshone the bad for me in this field as I like to think it has in life.

But sometimes I forget that even when everything is done right in a situation made to ease one’s passage surrounded by love and goodness, a natural death can still be ugly.  It’s the exception to the rule, but it doesn’t make picking up the pieces any easier.

He had just turned 39 years old. The week before he had been considering further chemotherapy for an aggressive neuroendocrine tumor that had just been discovered 6 months prior. He decided along with his oncologist that he first needed some time to recover his energy and optimize his symptoms before undergoing more aggressive therapy, and it was then that he had enrolled into our home palliative program. Within a day his wife had called his oncologist to discuss his rapid decline. They decided hospice may be the best option now.

I met this man four days ago after a weekend of accelerated physical decline. As I entered his modest apartment with my attending the first thing I noticed was his gaunt 39-year old body shifting back and forth uncomfortably from a sitting position to lying down on the mattress in his living room. The next thing I noticed was an open door down the hallway – decorated cheerfully in green and purple for what I assumed was a young girl.

“Turn it off, now,”  I thought to myself, tucking away any thoughts of my own daughter. “Turn that off, and turn on what he needs.”

I crouched down and had a conversation with the man and his family. He was experiencing terminal agitation, and had increasing pain. We gave him some more Ativan, some more morphine, and some ice chips to wet his lips. He was lucid despite it all. Joked, “I’ve seen better days” in response to the worn, “how are you feeling?” I knew I had to be careful with my words – not just because these would likely be his last hours, but also because I knew his wife would probably replay the day in her mind for weeks, and maybe even years to come.

I glanced at the man’s bright pink POLST form  – “full code,” selected across the top, signed just three days prior. I waited until his breathing became a little more regular, and he paused to open his eyes again. At a loss for words I tried the truth. “I want to ask you an important question. I understand it was your hope to become stronger to get more chemotherapy, but unfortunately your body has become too weak.“

“Is this the end?”

His wife turned her head in an attempt to hide her tears.

“It’s the beginning of the end, yes. You’re dying. You have told nurses and doctors before that should your heart stop beating, and you die that you’d like us to try to bring you back to life even if that means there’s no guarantee that it would work, and understanding that we might hurt you. Your body has changed so quickly, and I know it’s impossible to think about, but it’s more vital now than ever. I must ask – is this still what you want?”

He closed his eyes again, “Yes. Do it.” This time his wife didn’t hide her face. She asked, “Honey. Are you sure you want to die like that? In the hospital? Away from me?”

He closed his eyes again. Then slowly, “No. I don’t want that. Just let me go. Just make me comfortable.”

His wife nodded and sobbed again.

“What – besides comfort – is the most important thing to you right now?” I attempted.

“Just my family. And my friends.”

I excused myself to the next room over to give them some time together. I heard her call a couple of close friends. His parents were on their way from Arizona. We spoke to his mother-in-law who had been there to support her daughter. She told us how she had lost her spouse as well. She relayed that her daughter had just quit nursing school to be with her son-in-law during his illness. She told us the man’s daughter – just three years old – was staying with her the past few days. “How do you tell a three-year-old her father has died?”

Before I could manage a humble response her shouts filled the silence – “Is this normal? Doctor!”

The ugly. He had turned on his side and vomited profuse amounts of old blood. The life was leaving his eyes. My attending comforted his wife, and I held him steady as he took several last agonal breaths.

“Is he gone? My love! I love you. I love you.”

He died. We offered to clean the body of the man. His mother-in-law provided towels while she continued to comfort her daughter. One of the towels I used to sop up the coffee-ground blood was a toddler’s hooded towel – pink and cat-shaped. I placed it in a trash bag with the rest of the soiled bedding. Part of me wanted to try to get the marks out of the child’s towel, knowing she’d ask for it later. But I thought if the stain couldn’t lift it would be painful for both daughter and widow. It was too late to erase this memory for her. But maybe I could eliminate some reminders.

After leaving his residence I didn’t cry – atypical for me. Just reflected for a long time before driving off in my car. The breeze felt softer when I rolled down my window.  The sun’s warmth retained on my driving wheel felt kind. I watched a kid walking with his father across the street – cheerful and seemingly untroubled. An almost cruel juxtaposition to the events I had just beheld in another’s life.

At the least – I hoped that not being alone at the end gave this man and his family some degree of comfort. And I reflected on how precious is life. And how beautiful. And how ugly. And good. And unfair. All at once.