Tag Archives: grief and loss

Teams, gratitude, and goodbyes

We had a lot of fun in our hours together in the Labor and Delivery Suite at Virginia Mason Hospital, Seattle, from 1983 until 1989, when I left to take my practice to the University. “We” would be the nurses, midwives, support staff, and doctors from the hospital and two community health center practice groups. There’s a lot of talk these days about teams, as if it is a new concept. It’s a great concept; it’s not new, and algorithms,mnemonics, and organizational protocols telling us to communicate or how to communicate do not make the concept come alive. Relationships are the bricks and the mortar comes from commitment to our patients and to the relationships within the team.

This spring a new patient appeared on my schedule. I recognized the name and I recognized her: big eyes, easy laugh, and organized notebook with items for us to discuss as catch up—items she felt I would need to know if I was to become her primary care doc (PCP) and we were again to be a team. It had been 25 years since we had worked together as nurse and doctor in Labor and Delivery (L&D is what we call it), yet it could have been yesterday.

…Only this time we would not be working together with a laboring and birthing woman and her family. It was to hopefully keep her healthy, now in remission after chemotherapy for lymphoma. Her cancer care was in our institution and she and they felt a PCP in our system would add to her team that included her husband, daughter, oncologists and nurses; they hoped my joining the team might make her care coordination easier.

After she had completed chemotherapy, her first scan was negative and she and her husband and daughter were optimistic and ready to celebrate. I felt like an old friend had walked back into my life. I shared her optimism and thought, “how lucky am I? Piece of cake: reconnect with an old friend, work on her health goals now that chemo is over…”

That is what teams do if they work: they breed strong ties and create a choreography that could translate to different settings even though we don’t make those translations often. In this case, we settled in, started to work on some of her non-cancer concerns, caught up on her life and hoped for the best. I found out she had left L&D nursing and was a respected nursing educator in a local program. She and her husband had one daughter and she shared how proud they were of her. She told me how, as their daughter grew, they took frequent outings to various parts of the state and usually could be found in the summer crabbing in Puget Sound from their boat. I remember their wedding and could picture the next installments as she relayed the details. Did I go to the wedding? Or were her descriptions so vivid I feel in my memories like I was there? That is the thing about teams. We all own part of the other’s story with a connection that weaves in and out and in an out.

During these conversations I could easily transport myself back to L&D, day or night, someone in labor, sitting around with whoever was there– nurses, the midwives from the hospital midwifery group, maybe one of the family med docs from the other community health center group, maybe the obstetrician on call. If one of us needed help, there were always hands to help. If a woman came in and her on call person was not there, we would help. If my patient came in and I was not there yet, others would help.

What I remember about Linda, the name of my colleague now patient, is her voice. She could tell one of us exactly what she thought and what she thought we should do about it, always with this cadenced softness that did not hide the direct and clear opinion. She could (and would) manage a complex patient in the midst of chaos with the calm of a neurosurgeon and she could coach a reluctant woman when to breathe and how to push when I needed to take a take a deep breath break myself. And laugh…oh I can hear her laughter. She could laugh at herself and funny things she would share. Laugh a lot and laugh loudly, easily tickled by life and our work, easily finding what was important, never disrespectful, just keenly insightful to the meaning, the amusement and the delight—all of it.

Teams…they do create memories. I don’t remember a mnemonic. I do remember the people who touch me and allow me into their lives. Though I am not sure, as I remember the flurry of the nursery filled with the L&D and pediatric nurses and my absolute excitement and disbelief at the show of support, to say nothing of the import of the moment, I believe Linda was right there when my son was legally handed to me at our hospital and again at the shower the nurses had for my son and me a couple of weeks later. I know she celebrated my becoming a parent, and we all shared her meeting her Larry and her wedding a short while later. And then we lost touch.

This spring of remission was short. Her lymphoma was found again, not even hiding very far from her oncologist’s detection. Her remission had not been real. She had more chemo and prepared for stem cell transplant. During that time our biggest conversations were about how to get ready, would she have to live closer to the hospital during this treatment. And she began to accept these realities and in her usual very organized way, she set about making all the arrangements.

Just a couple of weeks ago, with her port in place for the transplant, she was admitted with a fever. We hoped it was an infection, maybe the line that had been placed. Her doctors tried to hope and did cultures and started antibiotics. Within a couple of days, it was clear. No infection. Her cancer was running wild. Her oncologist gave her the news and we expedited her return home with her daughter and husband and Hospice, her new team member.

Her bucket list got much shorter. She had a couple of good days and her family was at her side pretty much the whole time. Before her discharge she told me she worried about the strain on her husband and daughter and I told her they were strong and would be fine. She said, “but I have things to do.” I asked her where she would tell me to put my energy if I knew I was going to die the next day. She laughed. Oh how I loved her musical laugh. She said, “You give me perspective. And also, I really want my daughter to go on her trip.” I said, “That is not your choice.” She laughed. We both knew she would have said the same to me.

I thought she would live a week or three. And I hoped to visit her and maybe have the courage to say a proper good bye and to thank her for the days and nights we passed together in L&D and for trusting me with her care at this momentous time. She died quietly, 5 days after going home, with her family at her side. When there is a good team, maybe there is no good way and no need to say goodbye.

Hearing Loss—Take Two

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In my last blog on hearing and hearing loss, I mentioned how a lot of what most of us actually “hear” is with our eyes. We unconsciously add to our sound hearing with context and even lip reading and intonation. I would quote proportions and give a reference if I could find it again. Oh well, I csan’t. Tonight I went to see The Lego Movie at the advice of my son, Nicholas. Lego characters do not really move their lips, right? During the first few minutes, until the story line was established, I thought it might turn out to be a worthless venture with my comprehension being about 70%. Once we were about 5 minutes into the movie, I could much more clearly “hear” the characters’ lines–because I had characters and story line. It was a very interesting verification of what I had read, tonight experienced first hand.

That brings me to the –drum roll and trumpet blasts–hearing aids. I opted for the ones recommended, that sit in the ear and supposedly do a great job of not magnifying surrounding sounds and would work for work, which for me means 1) hearing soft spoken people in meetings, 2) being in group sessions and hearing various people, and 3) using the tools of my trade: the stethoscope. Of course I also hoped that the car radio could be at a lower volume and that dining in loud noisy restaurants would be easier.

They get a grade of D+ -maybe- except in one crucial area they get an F and therefore will not work. I feel like the princess and the pea.

1. In the car: Wow, I can hear all the other cars and my car’s quirky noises. Cool. But I cannot turn down the radio volume. If anything I need it louder to hear over all the “new” noises I can hear.

2. Small groups at work: not yet tested.

3. Restaurants: I used to love eavesdropping on tables near me. I am happy to report that capacity might be back with the aids! Hearing my dinner companions however is not improved at all. Like the car radio, the indiscriminate pick up of the microphones does not make the near and dear clearer. Do I want to eavesdrop or do I want to be part of the dinner conversation at my table?

4. And the final: I can hear NOTHING of the heart with my stethoscope and lung sounds are 90% blunted. So this aid will not work and will be returned.

I know there are some that apparently filter better and they had downsides that left them not recommended (I cannot remember why).

We would think that the technology that is out there would have this figured out. I am back to the drawing board, trying to do my part to do my share of the conversations in my life. It is not so simple as just go get a hearing aid.

What?

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During the last years of my dad’s life, we all knew his hearing was not great. I’m not sure why he did not get hearing aids. We knew that large noisy groups made it hard for him to socialize and that he shied away from those. He could hear us in small groups or one on one conversation, mostly. I don’t remember feeling annoyed with him or him getting short with us when he could not hear. He was career navy and served in WWII, Korea, and Viet Nam so I know he had noise exposure as one culprit in his hearing loss. And there was age.

I do remember feeling I wish we did not have to plan events so that he could be comfortable.

This brings up the question of who is responsible for what when there is a change in physical ability? How much of the burden is on the person whose health and ability status changes? What about those in that person’s life?

Next week I will have molds made for hearing aids. Some of my hearing loss is just family and age, I am sure. I also sing in a group and in a concert two years ago, the tenors to my left were magnificently loud in several pieces and I heard immediately the tell tale ringing that did not stop when I left the concert and for days later. Actually I still have the tinnitus, more in my left than right ear. Luckily for me it does not drive me batty, either because I am already batty or because I just have enough going on that it is not on the radar of my life. But I knew after that event my left ear in particular was in deep trouble for hearing.

I say “what?” a lot. I struggle in my groups with students if the quiet students do not speak up. My kids are frustrated at having to repeat themselves. Maybe my students are too. My friends tease me. I say “wait til you have these shoes on…see how it is.” I laugh with them because I am good at laughing at myself. Some people seem irritated when I ask for them to repeat themselves. I feel “less than” even though I did not make this happen other than to sing next to loud people.

Soon after that concert a very close friend and I were at her family’s cabin. I was saying “what?” a lot. And she would then yell her next response, well not yell loudly, but much louder than it needed to be. I got irritated and suggested that if she did not mumble I could hear her, that it was articulation not loudness that was the issue. She retorted that I was going deaf and she did not mumble. I told her I had an audiology appointment already made and that I still believed she mumbled. Within the week I found out the degree of my hearing loss and mutual friends acknowledged that she does “mumble” a bit.

Loud places are hard. It turns out that with sensorineural hearing loss, part of what happens is not only can a person hear less well, they also have a shift in the noise comfort level. A normal hearing person will say “it is bothering me” when the noise level is at a certain decibel level. A sensorineural hearing loss person will say it is bothering them at a much lower decibel level. And that is independent of what they can hear in language at a given level. I have had three hearing tests. The first two my results demonstrated this. In the third I “cheated,” because I knew of this concept. I weathered the noise far beyond what was really tolerable…and I passed. Yay me! Not.

It turns out that a lot of our communication is not from hearing. It can be body language, lip reading that we don’t know we are doing, etc. The context helps. Some people are better at accommodating, figuring out context and filling in the blanks.

And in some settings it is hard to ask people to speak up, or say it again. I can understand why my dad and others with hearing loss tend to withdraw. I have wondered if I should stop my working in the work I do. Is that wondering because I question my skill or because I am embarrassed or because I am just tired advocating for myself? I honestly don’t know. I just feel like it is hard, my problem, and well…I guess I just don’t know what should/could be a reasonable expectation in differnt relationships. Many have trouble hearing our department chairman. Is that my problem and should I just pretend I hear and be quiet?

Last week I felt like a sitcom. My younger son yelled down to me from upstairs. “Mom, can you get me some paper?” I yelled back, “what do you need paper for?”
“Mom can you just get me some paper, now?” I answered, “Nick, just get it from the printer, which is right up there with you. Won’t that work?” He then came down stairs looking crosseyed. “What is wrong with you?” “What do you mean,” I retorted. “You want paper. There is tons upstairs.” “Mom, I said, will you do me a favor!?” We both collapsed in laughter to his words, “get that hearing aid.”

I found a website that talks honestly about what others can do. I know what I need to do. Of course I hope the aids help. The ones I tried before did nothing.

Here are tips if you are a normally hearing person with someone in your life who is hearing impaired from the Hearing Loss Association of America:

Tips for Hearing Person to Communicate with Person who has a Hearing Loss

Set Your Stage

Face person directly.
Spotlight your face (no backlighting).
Avoid noisy backgrounds.
Get attention first.
Ask how you can facilitate communication.
When audio and acoustics are poor, emphasize the visual.

Get the Point Across

Don’t shout.
Speak clearly, at moderate pace, not over-emphasizing words.
Don’t hide your mouth, chew food, gum, or smoke while talking.
Re-phrase if you are not understood.
Use facial expressions, gestures.
Give clues when changing subjects or say “new subject.”

Establish Empathy with Your Audience

Be patient if response seems slow.
Talk to a hard of hearing person, not about him or her to another person.
Show respect to help build confidence and have a constructive conversation.
Maintain a sense of humor, stay positive and relax

Tips for the Person with Hearing Loss to Communicate with Hearing People

Set Your Stage

Tell others how best to talk to you.
Pick your best spot (light, quiet area, close to speaker).
Anticipate difficult situations, plan how to minimize them.Do Your Part
Pay attention.
Concentrate on speaker.
Look for visual clues.
Ask for written cues if needed.
Don’t interrupt. Let conversation flow to fill in the blanks and gain more meaning.
Maintain a sense of humor, stay positive and relaxed.

Establish Empathy with Audience

React. Let the speaker know how well he or she is conveying the information.
Don’t bluff. Admit it when you don’t understand.
If too tired to concentrate, ask for discussion later.
Thank the speaker for trying

I return to the question. Who has responsibility for what? What is your role?

On Keep On Keepin’ On

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While swimming this morning, I was thinking about these recent weeks. They mark the anniversaries I mentioned earlier in the week and my father died this week 17 years ago. My brother-in-law died last month and a friend (the dad, grandpa, father-in-law, and husband to close friends) died this month. Swimming is a good place to be with myself, quiet and undistracted. From reflecting on the lives of those on my mind, I moved to questions about how we live. How is it that we keep on keeping on? that we get up and keep going? I alluded to it in yesterday’s post. It is more central on my mind today.

Two strangers suffered a similar loss. Armen’s son Alex and a few years later Nancy’s daughter Rachel died. A mutual friend introduced them and Armen became a guide and mentor with Nancy after Rachel’s death. As they wrote and exchanged thoughts and feelings, each was drawn deeper into this land we call grief. They became close friends and their writings became a book I recommend you buy: Griefland: An Intimate Portrait of Love, Loss and Unlikely Friendship.

Nancy and I had corresponded in a web-based support group over the few years before Rachel’s death. In 2009, I showed her a picture of a doll I made in a workshop based on the work of Marita Dingus.

I did not have knowledge of some cultures’ beliefs about dragonflies when I put one on my doll, but I liked it even more when I learned the symbolism. Nancy asked me to make a doll for Armen as a thank you for her presence in Nancy’s life. She mentioned she would like one too. They each sent me a few items that were meaningful artifacts in their families. Nancy wanted each to have a dragonfly.

When the dolls were complete, I explained them to both women:

Armen, I have never met you. Your friend Nancy describes you as passionate, a gypsy at heart, deep, powerful. She asked me to make you a dragonfly doll and yours is my second in a series of three. Thank you for shepherding and sharing this journey with Nancy. Having held the artifacts you gave to Nancy, there are ways I feel I know you. When I look at the photo of earlier days, I see the connection among the four of you. Your traveling cross and your passport express other components of your spirit.

I imagined a wild gypsy for you at first and the picture that I had in my mind was actually the doll that I made. When I look at your veiled dancer now however, she looks more subtle and gentle. She is the gypsy, the carrier or holder of your story, as much as another could represent it. She is clothed in layers that can swirl or hide. She is complex. If she is a carefree gypsy, she is also a tender soul who can hold much in her softness for those whom she loves. Your dragonfly is made from Swarovski crystals. Crystals should refract light to show a rainbow: many colors, many symbols in many cultures. Your doll would embrace the variety, which for me mean life and hope and beauty. When you look at the inside of the cape, it becomes obvious that the story is yours. The cape is held down, weighted, grounded by the two beads that are bone, raising your friend’s question of where do the bones go?

The lizard on your shoulder is for Alex, who loved lizards. The mother and two children: Danielle and her two and of course, you and your two, all linked to each other. The ring is for your many years with your husband. The weights at the edge of the cape are also for your connection to writing, to Setrakian and Sorayan. The key, from Rachel, is what keys are, both the means to open and move through, and also the reminder that we do not have to do these walks alone. You are the living demonstration of this in your friendship with Nancy.

The heart is within the key; no key functions outside of our hearts. There are two word notations, “peace” and “&”. You live in words; may they bring you peace. The “&” is an inclusive word. Your cross is of course for your travels, and for my wish that many jeweled adventures lay ahead. For this walk, you need boots; Nancy felt shoes were a key symbol for you both. That they are boots is my touch: they do work, they touch dirt, they kick when necessary. There is a bit of imaginary cowgirl in me. We also share the material in your doll’s veil; my doll has the same fabric as a cape. Both yours and Nancy’s dolls have the same fabric in their capes, reversed.

Nancy, your doll is the Lady in Red. This was your stretch, and for us, always remembering to stretch will help keep us sane. That we have never met is really rather amazing when I think about our connection. Making these dolls was a treat for me. Because of your request, I could know you better. Your dragonfly is like an amulet, a shield, beaded with the colors of earth and fire, the counterpoints for this insect that lives between air and water. It is fastened with the button from your youth, because those years are the template from which you have grown. It emerges from your paisley fabric, linking you further to your past. It is fringed to represent a talis for whatever form your spirituality takes.

As with Armen’s doll, the inside of the cape is where your family tree lives, showing that the doll is the keeper of your story. I picked a quote from Saroyan’s book Where the Bones Go, because really, this project came to be in large part because of Rachel bringing you to Armen.

Your dragonfly doll is regal and proud and unbound. She strikes me as a protector who can stand tall, feel everything, living in her domain, not constrained by tradition or dictum. Jessica’s cameo is on your skirt. Do you and Jessica know that cameos are seen as a vow of love, sometimes given to travelers? Josh’s Aztec cross can be another talisman, protecting you from evil. Rachel’s Mama Bear icon became part of Rachel’s key, because how she saw you and your heart will be part of your discovery as you use your key. The beads then encircle you and thread connects the three siblings to your heart. The heart on your doll is one from a pair of earrings; the other one is on my doll, as our hearts are linked. And of course, there are two keys; you have one and Armen has one. Your word is grace. You also live in words and your journey is rich with grace. The “&” is inclusive; do you remember in seminar hearing how “but” negates and “and” expands? You told me shoes were very important. The boots are my touch. Boots do work, they walk through shit, and they kick when necessary.