“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 12^th 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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Shine On, My Boy

Very poetic and real entry about the passing of Jonny. I appreciate the author sharing such an intimate part of her and Jonny’s journey with the world. I’m sorry that I have just now discovered this blog. To Jonny’s girlfriend; please know that you and Jonny have helped and will help others who come across your blog to know they are not alone along their journey. To Jonny; Rest in Peace.

Team Jonny

And so the inevitable has come.

At around 10 o’clock last night my gorgeous boyfriend of 3 years slipped away and lost his battle with cancer. He was heavily sedated and the nurses assured us he would’ve felt and known nothing. 

But we felt and saw everything. And it was scary. And painful.

As he got closer to the end his body warmed up, his hands became clammy, his pulse started racing in a last bid attempt to fight. His breathing became shallow and laboured, there was fluid in his chest that bubbled through each inhalation. He struggled to breathe for a few minutes and then he was gone.

They say then when someone dies there is a sense of peace, maybe relief, an overwhelming knowing that the person is no longer there. This is true, from the first sharp intake of breath before the struggle, there was no…

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Palliative Care? But I am not dying!

Great post by Karen Mulvihill DNP, APRN, ACHPN, FNP,ACHPN, Director of Palliative Care Services at Danbury Hospital in Connecticut. Although some patients may have misconceptions about palliative care, while practicing inpatient palliative care, I found that most patients hadn’t heard of palliative care. To help ease their mind about our teams involvement, I used to reassure them by letting them know they would still be cared for by their physicians and hospital staff. Our team was there to provide additional support (physical/psychological/social/spiritual) during their hospitalization. I would use the analogy of an Ice Cream Sundae. The hospital, the physicians and ancillary staff were the Sundae and we were the cherry on top. Whether the cherry is added or not, the sundae is the same. Adding the cherry makes the sundae that much sweeter.

Engaging The Patient

Karen Mulvihill

Guest Contributor: Karen Mulvihill DNP, APRN, ACHPN, FNP,ACHPN – Director of Palliative Care Services, Danbury Hospital

Palliative care has a bad rap and is often underutilized because of the lack of understanding of what it is. Patients panic when they hear “palliative care” and think it means they are dying. But palliative isn’t only for people who are terminally ill, and it is not the same as hospice care. This is a daily discussion I have with patients and families dealing with a chronic life-limiting illness. The first discussion usually centers around why palliative care is not hospice. Palliative care should be part of the treatment plan from the time of diagnosis of an illness through end of life and hospice care. That may be years in some cases!

Palliative care is for ANY patient with a chronic illness who is experiencing a decreased quality of life because…

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At The Bedside

Team Jonny

I feel such an overwhelming sense of love when I look at my baby boy asleep in the hospice bed.
He’s thinner, his bones stick out, his face is sallow, his eyes heavy and black, but my gosh is that boy still gorgeous to me.

He’s still the most handsome man I’ve laid eyes on. His strength, bravery and positivity still radiate from him in a glow of warmth that fills the room.

A warmth I know will soon be gone. The flame of hope extinguished by the storms of death and replaced by a bitter cold that will consume everything.

They added a 3rd syringe driver yesterday. A permanent tube into his arms and leg, via a stat line, where a syringe can pump a constant measured amount of drugs into his body. This one will pump constant sedation and keep him asleep until he slips away.

At least that’s…

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Change

This is the last post from HPMFellow as a Hospice and Palliative Medicine Fellow. I’m proud to now call her a colleague and I look forward to working with her in the field. I hope she will continue to share her experiences, thoughts and insights. Thank you HPMFellow and good luck!
-Hospice Physician

By: HPMFellow

I graduate “24^th grade” tomorrow.

I’d like to use this reflection to come to terms with the “end” of my formal professional training – more specifically the most recent part. This past year as a palliative medicine fellow, and the past several years as a mother have done a great deal for my personal growth. My daughter and my patients have taught me – simply by living the first and last days of their lives – that without an element of change to every day time tends to stand still. I’ve learned that the passage of time and the preciousness of life is truly something worth celebrating.

I used to call my daughter my personal barometer for professional growth as we both started medical residency together – she a rent-free occupant of my uterus, and me a nine-months pregnant deer-in-headlights intern. She was a helpless infant when I took my first overnight call in the hospital. She started talking (and hasn’t stopped,) about the time I started teaching other residents. She learned to walk about the same time I placed my first central line unsupervised. And when I started my palliative medicine fellowship she started throwing tantrums. I began to notice how very similar she was to some of my patients and their families. The similarities didn’t stop at the tantrums thrown in resistance to change, but also in the wonder of life that comes with youth and being forced to slow down.

A month ago my daughter began to learn what death means. She had used the word before, but usually in respect to a character in a movie, or great-grandparents she hadn’t had the opportunity to meet. But last month our beloved dog died. When we came home from the vet, my husband and I struggled to find the words to explain something so permanent, and how to ease the acceptance of a change so big in her life.

We decided to tell her “Zoe” had turned into a star. Not a lie in our minds – she was physically now reduced to a lifeless carbon –based dust. The stuff that the late astrophysicist, Carl Sagan, often referred to as “starstuff.” This idea resonates strongly with our beliefs, and we felt that giving our daughter a star in the sky to look up at and think of her dog would also be kind.

So we told her Zoe had died and become a star.

“Why?” her current favorite word.

“Because she was very, very sick and very old.”

“But where is she?”

I pointed to a bright star in the sky, “There.”

She looked up at the star and began to cry, “I want her to come down from there.”

“I’m so sorry sweetie. I miss her, too. But that’s where she’ll stay from now on. But she loves you, and she’s not sick anymore.”

She composed herself surprisingly quickly. Then she looked back at the stars.

“When I die will I become a star?”

I wasn’t prepared for that. But she was right. My daughter is mortal, too. “Yes,” was all I could offer.

Then in true magical-thinking she decided, “When I die I want to be the moon.”

And just like that my learner became my teacher. Like I’ve learned this year to allow my daughter to teach me, I’ve allowed myself growth from my patients. In general I’ve found that those closer to the hour of their life’s end often have significant lessons to share if those around them are listening and observing.

If I could again see the faces of those I’ve cared for this past year who have since returned to starstuff, I’d like to give them another heartfelt “thank-you.” For the profound appreciation of change you’ve taught me and the philosophy of whole-person medicine I hope to carry moving forward.

Compassion Fatigue

By: HPMFellow

“I’m happy to see that he’s stabilized for now, but it’s also a good time to revisit your family’s goals for Brian for when another episode like this happens again.”
Brian’s father’s eyes widen, he whispers, and he motions for me and his wife to join him in the adjoining living room.

Here we go again.

I lean in to speak to Brian, my 21 year old patient who’s been living – some may call it anyway – with advanced Lou Gehrig’s Disease for the better part of his adolescence. I let him know that I’d be back to examine him shortly. I’m certain he’s been “locked in” for quite some time, but I have no idea how much he actually hears me. I’ve tried to speak openly in front of him before, but out of respect for those who’ve known him all his life the serious conversations are always deferred to the living room space as they feel heavy topics may upset him. The patient’s corner is solely reserved for speaking about urine, ventilator settings, and g-tube residuals.

What every 21 year old wants to hear about. Poor guy.

I sit down with Brian’s parents. “We’ve been thinking about the code status again, and talking it over. We definitely don’t want him to have his ribs broken – we know he’s broken bones just moving before. I know we said change it to ‘DNR’ last time, but I think we’re going to leave him ‘full code’ for now.”

Dig deep for that patience. It’s not necessarily two steps back. They’re not the most difficult family on your census – cut them some slack.

“What made you change your mind?”

The father begins, “Brian’s mother asked him …”

Is she kidding herself? He doesn’t move, he doesn’t even blink his eyes! They may be agreeable, but they’re certainly some of the worst cases of denial I’ve ever seen.

“… and he expressed wanting to try. Maybe it’s not what we want for him, but we want to respect his wishes .”

Sincere. Delusional, but sincere.

“I know it’s a difficult decision. I don’t want to push you one way or the other. If you feel Brian and your family is not ready to make a change in his long-term plans, we can revisit that at a later time-“

The vibrator on my work phone goes off. I lean over to silence the ringer.

It’s probably not an emergency.

“I’m sorry. I just want to stress to you the importance of what I’m sure we’ve spoken about already. Though we’re not sure if X would survive a cardiac arrest, we do know that he would more than likely not be the same neurologically should he survive. His body has been through too much.”

“We know.”

The vibrator on my phone goes off again. I quickly silence it.

If this nurse doesn’t stop calling me I’ll never get through this!

I start again, “If you believe he knows then I would agree with your choice to respect his wishes, but if you’re not certain that he knows that, or think that he wouldn’t want that, then I would encourage you to make a decision about change sooner than later.”

Brian’s father speaks to his spouse in Japanese. There’s a heavy silence. She responds back in Japanese. Some more silence.

I sneak a peek down at my watch when they’ve looked away. I’ve already spent more time than I had planned here, but I don’t want to look like I have.

Am I giving too much of myself to my patients? Will there be any leftover for my kid?

Am I a good wife?

“I’m so sorry your family is going through this difficult process,” I add.
The parents nod. Then more discussion in Japanese. More silence.

I hope my Mom is okay. I should call her.

I don’t speak Japanese, but I notice the parents’ tone changes. Even the silence changes. The mother is nodding, holding the father’s hand.

They’re tired.

I look over at Brian – lying motionless in his hospital bed, eyes fixed ahead at the ceiling. His silence is heavy, too.

He must be tired, too.

Or is it projection? When was my last vacation?

The silence breaks. Brian’s father speaks –

“We think that Brian would still want to remain full code even if he knew he wouldn’t be the same.”

I’m tired.

Congrats HPMFellow

I just wanted to congratulate HPMFellow who, as of 7/1/14, is no longer a fellow but now a full fledged hospice and palliative care attending. As I mentioned in the past, I had the honor and privilege of being her hospice and palliative care mentor for 6 weeks while she was still a medical student. It was amazing to see her growth in our field within the 6 week rotation and at that time she was sure hospice and palliative medicine was for her. She’s an amazing person and showed me that she could be a great physician. I’m very proud and again just want to congratulate her. She has 4 more journal entries that I will be publishing under HPMFellow, however, if she continues to contribute, maybe she’ll change it to HPMattending or something :-).

 

The Beauty Bus

I wanted to write this post to highlight a great organization I have partnered with to enhance the quality of life of those I’ve cared for with chronic or terminal illnesses. When I was doing hospice full time, not by chance, one of our social workers found out about the Beauty Bus. Because of the great work the caring women of the Beauty Bus provide, we would receive great feed back from our patients. It became humorous when during our interdisciplinary team meetings, it would come time to have the social worker’s input as to possible interventions, we’d all say in unison, “we know, The Beauty Bus!” I personally want to thank The Beauty Bus Foundation for the great work they do. I personally have witnessed how they truly increase the quality of life of every person they touch. Please read more about them below and support them by donating your money or time, sharing their information with others or becoming inspired to do the same in your community. 

About

The Beauty Bus Foundation was founded in loving memory of Melissa Marantz Nealy who passed away the age of 28 from a degenerative neuromuscular disease. Melissa loved a good day at the spa. When her ability to leave the home became compromised, Co-Founder Alicia Marantz Liotta, Melissa’s cousin, was able to schedule in-home beauty services through her connections within the beauty industry. Witnessing the hope, happiness and respite these services brought to Melissa, Alicia and Co-Founder Wend y Marantz Levine, Melissa’s sister, were inspired to launch Beauty Bus Foundation. 

Mission

Beauty Bus Foundation delivers dignity, hope and respite to chronically or terminally ill men, women and children and their caregivers through beauty and grooming services and pampering products.

Beauty Bus accomplishes our mission through:

• In-Home Beauty and Grooming Services:  Beauty Bus’ core program provides in-home beauty and grooming services, free of charge, to patients whose illness or condition prevents them from accessing a salon or spa and their caregivers.
• Pop-Up Salons:  Beauty Bus creates Pop-Up Salons where patients and caregivers receive a variety of complimentary beauty and grooming services in a setting that promotes support and serenity.
• Bag of Beauty Program: Beauty Bus gives complimentary Bags of Beauty filled with pampering products to remind patients and caregivers that they deserve to look and feel beautiful.

 Here is an experience of a Beauty Bus volunteer:

“I wish you could have been with me on my Beauty Bus visit yesterday. Then you would understand why I volunteer for this organization and how it always touches my heart.

The client is fairly young to have to experience the health issues she is dealing with. She’s had a stroke, has extremely limited motor functions, and during our visit she was unable to talk. But talking for her was unnecessary. Her face said it all.

She is beautiful! But after her facial, her face glowed and she looked so radiant. I offered her my little pocket mirror so she could see herself and how beautiful she was. We held the mirror together as she smiled and just stared. She continued to stare for a good 5 to 10 minutes until we had to take it away so she could get into bed. As she looked at her reflection, I could see the joy radiating from her eyes and her smile never left her. She smiled through the entire visit. It warmed my heart and touched my soul.

When the professional and I went to say good-bye, surprisingly, she reached for the professional’s hand (which was not easy for her), grabbed it and held it for several minutes as if she didn’t want to let Lynette go. And that smile never faded. I’m wondering if she is still smiling. This touched me so deeply that even now I sit here typing this with tears threatening to cloud my vision.

This is why I volunteer for this amazing organization. To experience the simple pleasures we so often take for granted, and watch in another’s face the precious gift just given. Beauty Bus brings dignity, beauty, joy, some pampering and the gift of knowing they are special.

I love my volunteer work!”

 

The Beauty Bus Foundation Information:

2716 Ocean Park Blvd., Suite 1062

Santa Monica, CA 90405

Phone: (310) 392-0900

Fax: (310) 392-0907

Website: http://beautybus.org

Email: beauty@beautybus.org

Twitter: @beautybus

Facebook: http://www.facebook.com/beautybus