I woke up today thinking about my dad, born on this date in 1916. He died in 1999, but I still learn from him.
He faced his death the way he lived his life: as a practical thinker with a curious mind, who was quietly stubborn with a huge generous heart.
Dad was diagnosed with multiple myeloma on his 80th birthday. During the next three years he paved the way for others to talk with him about living with a terminal disease as he went through a range of treatments, hospitalizations and kidney dialysis.
He kept detailed records of doctor visits, lab results and weight/appetite changes. Education and compliance were as important to him as chemotherapy. The more he understood his condition, the more empowered he felt to make informed decisions and suggest additional treatments to his health care team. He was determined to live as long as possible, but didn't deny his own mortality.
"Death is a natural part of life", he told me one evening as we reviewed his most recent physical changes. He was hospitalized for kidney failure, which necessitated starting dialysis. The day I had feared had come. My heart was broken.
"I've had such a good life" he said, as he listed the things most important to him: his family, his home, his friends.
I asked him how we could help him now.
"I want to be home, to be comfortable, to be with my family."
We hoped he would tolerate dialysis well. From home, he went three days a week to a clinic where he endured a four hour procedure in order to survive. Due to his advanced cancer the treatments quickly became more than he could handle.
When the decision was made to stop dialysis we knew he would die within a few days. The night before he died a steady stream of family, friends, neighbors came. He extended his thin, frail hand to all, smiled and thanked everyone for visiting him.
I watched in awe. In his own quiet way he had maintained control over the end of his life. He knew what he wanted from the time he was diagnosed three years prior to his death. He must have spent a lot of time imagining the end, preparing himself emotionally and spiritually. His willingness to talk with others helped prepare us too.
The next morning he was no longer conscious. It was clear that death was close.
In his own bed at home, surrounded by family, he peacefully took his final breath. He died the way he had hoped he would.
Happy Birthday Dad....Your wisdom and grace taught me how important it is to live fully, live honestly, live facing death instead of fearing it.
Wednesday, January 6, 2010
Wednesday, December 16, 2009
Pregnancy/ Newborn Loss
My wise and wonderful niece reminded me yesterday of the need to recognize the loss that is felt when a pregnancy ends in fetal/newborn death. Her sensitivity comes from personal experiences several years ago. Today she has two beautiful, healthy children and there is no doubt she cherishes those little darlings. She and her husband remember and acknowledge the losses they experienced, as part of the fabric of their lives.
As a young, single, idealistic nursing student I expressed an interest in writing about pregnancy loss to my obstetrics clinical instructor. Peering over her bifocals she suggested I choose a more positive topic, perhaps "Bonding with your newborn" or "The Health Benefits of Breastfeeding"
I persisted.
She reluctantly agreed.
I was allowed to informally talk with women who were hospitalized following delivery of a healthy infant, but who also had a history of fetal/newborn loss.
During the time I taught tips on newborn care I managed to ask some version of the following questions: How were you supported when you experienced an earlier loss? What was your grieving like? Did others acknowledge your loss/grieving? How did your health care provider meet your needs?
The responses ranged from dismissing the loss as a legitimate reason to grieve, to profound sadness, feeling alone, isolated and misunderstood. Many reported that family, friends and even husbands/partners, did not view the loss as a significant one. Often they were encouraged to move on emotionally and begin planning for the next pregnancy.
The women were eager to talk, surprised they were being listened to and have the loss acknowledged. They often expressed shock at their tears as we talked, sometimes saying "I shouldn't be feeling this way, after all I have a new healthy baby now".
As health care providers, family, friends, partners, we need to be sensitive to parents who experience fetal/newborn death.
If you have personal experience with this type of loss, I send you my condolences.
The resources for coping with fetal/newborn death are plentiful, and at your fingertips. Please consider exploring websites (try searching fetal death/grieving/support or other related terms), local support groups, talking with health care providers, sharing your feelings with a trusted friend, meeting with clergy, journaling, creating music...or whatever moves you along in your recovery process. If you meet with resistance or denial, please don't let that stop you from trying another avenue. Please feel free to write to me.
If you know someone who has experienced a fetal/newborn loss (perhaps even a long time ago), gently acknowledge it and listen closely to the response. Be available and let her take the lead.
We can't fix it. But we can be part of the healing that comes through healthy grieving for any loss.
Many years after my nursing school experience, when I was a young mother, a friend experienced a first trimester loss.
When I asked her about it, she described the private ceremony she and her partner had--she wrote a poem, he sang a song, by a fire on a beach. They decided it was too early in the pregnancy to name the baby, but felt a strong need to acknowledge it and it's death.
We both cried as she related the story. She said I was the first to ask what it felt like, and she appreciated an opportunity to talk.
In this season (just a few days before Christmas) the miracle of birth and the joy of children shapes the actions of many of us.
Please remember those who are mourning for children whose lives were so short that they are often not acknowledged.
Take a chance: let someone know about your loss, be ready to share your feelings.
Or, ask a question, hold a hand, lend an ear.
Make this Christmas special in a new way.
As a young, single, idealistic nursing student I expressed an interest in writing about pregnancy loss to my obstetrics clinical instructor. Peering over her bifocals she suggested I choose a more positive topic, perhaps "Bonding with your newborn" or "The Health Benefits of Breastfeeding"
I persisted.
She reluctantly agreed.
I was allowed to informally talk with women who were hospitalized following delivery of a healthy infant, but who also had a history of fetal/newborn loss.
During the time I taught tips on newborn care I managed to ask some version of the following questions: How were you supported when you experienced an earlier loss? What was your grieving like? Did others acknowledge your loss/grieving? How did your health care provider meet your needs?
The responses ranged from dismissing the loss as a legitimate reason to grieve, to profound sadness, feeling alone, isolated and misunderstood. Many reported that family, friends and even husbands/partners, did not view the loss as a significant one. Often they were encouraged to move on emotionally and begin planning for the next pregnancy.
The women were eager to talk, surprised they were being listened to and have the loss acknowledged. They often expressed shock at their tears as we talked, sometimes saying "I shouldn't be feeling this way, after all I have a new healthy baby now".
As health care providers, family, friends, partners, we need to be sensitive to parents who experience fetal/newborn death.
If you have personal experience with this type of loss, I send you my condolences.
The resources for coping with fetal/newborn death are plentiful, and at your fingertips. Please consider exploring websites (try searching fetal death/grieving/support or other related terms), local support groups, talking with health care providers, sharing your feelings with a trusted friend, meeting with clergy, journaling, creating music...or whatever moves you along in your recovery process. If you meet with resistance or denial, please don't let that stop you from trying another avenue. Please feel free to write to me.
If you know someone who has experienced a fetal/newborn loss (perhaps even a long time ago), gently acknowledge it and listen closely to the response. Be available and let her take the lead.
We can't fix it. But we can be part of the healing that comes through healthy grieving for any loss.
Many years after my nursing school experience, when I was a young mother, a friend experienced a first trimester loss.
When I asked her about it, she described the private ceremony she and her partner had--she wrote a poem, he sang a song, by a fire on a beach. They decided it was too early in the pregnancy to name the baby, but felt a strong need to acknowledge it and it's death.
We both cried as she related the story. She said I was the first to ask what it felt like, and she appreciated an opportunity to talk.
In this season (just a few days before Christmas) the miracle of birth and the joy of children shapes the actions of many of us.
Please remember those who are mourning for children whose lives were so short that they are often not acknowledged.
Take a chance: let someone know about your loss, be ready to share your feelings.
Or, ask a question, hold a hand, lend an ear.
Make this Christmas special in a new way.
Saturday, November 21, 2009
Tears
Before moving from my hometown, Columbia, Missouri, I worked as a psychiatric nurse in a small private hospital. I was young and inexperienced, but fascinated by the power of the mind, body, spirit connection to health.
I called Dr. Anderson one evening because I was concerned about his new patient--a young woman with three small children. Her family had visited her. When they left she fell on her bed and dissolved into tears--crying longer and harder than anyone I had ever encountered.
I asked him is there was something I could give her to ease her sadness.
He explained she was overwhelmed by feelings of loss--her family was experiencing unwanted/unplanned changes.
She was grieving.
"We don't want to take away her tears. She needs them in order to heal. " he said calmly. We talked about the difference between healthy sadness (grieving) and clinical depression.
"Just be near to let her know she is not alone, but allow her to feel the pain and don't mask it. That gives her a chance to move through the grief and be whole again."
Dr. Anderson's lesson that evening has stayed with me for more than thirty years. Sometimes guiding my nursing practice, sometimes comforting me in the midst of my own grief.
Today is Dr. Anderson's funeral. His death was a shock and tragic loss to his family, friends and community.
I believe he would remind everyone to feel the pain, be near each other and let the tears flow.
Grief is personal, intense and a necessary part of healing.
Don't let anyone take your tears away.
I called Dr. Anderson one evening because I was concerned about his new patient--a young woman with three small children. Her family had visited her. When they left she fell on her bed and dissolved into tears--crying longer and harder than anyone I had ever encountered.
I asked him is there was something I could give her to ease her sadness.
He explained she was overwhelmed by feelings of loss--her family was experiencing unwanted/unplanned changes.
She was grieving.
"We don't want to take away her tears. She needs them in order to heal. " he said calmly. We talked about the difference between healthy sadness (grieving) and clinical depression.
"Just be near to let her know she is not alone, but allow her to feel the pain and don't mask it. That gives her a chance to move through the grief and be whole again."
Dr. Anderson's lesson that evening has stayed with me for more than thirty years. Sometimes guiding my nursing practice, sometimes comforting me in the midst of my own grief.
Today is Dr. Anderson's funeral. His death was a shock and tragic loss to his family, friends and community.
I believe he would remind everyone to feel the pain, be near each other and let the tears flow.
Grief is personal, intense and a necessary part of healing.
Don't let anyone take your tears away.
Thursday, October 22, 2009
When is a person dead?
"A person is dead only when you stop thinking about them", a friend recently said as we discussed death and dying issues.
I am accustomed to rituals that reinforce the absence created by death: open caskets, funeral/memorial services, graveside ceremonies and holidays to honor them.
I immediately thought of deceased loved ones who continue to live in my life.
Several years ago friend died on her 31st birthday. Her death rocked the community who loved her deeply: shocked by the death of someone so young, talented, compassionate and courageous. Her hope was to conquer her disease, devote her life work to comforting others who were suffering, continue traveling with her husband, have children and grow old surrounded by family and friends. Without a doubt, she would have maintained being the nurturing, loving person we all adored.
She battled her illness long and hard, wanting nothing more than the chance to live her dreams.
Near the end of her life, with grace and honesty, she delved into life and death issues. She asked questions about my sister Kathe's death. As she looked at photos of Kathe taken shortly before her death, she wanted to know what it was like for her and for me at the end of her life. Her curiosity and openness allowed others to go on the journey with her.
Her husband gave me her beloved denim jacket. She had worn it as they traveled--often on their motorcycle--to countless places around the globe.
It hung silently, reminding me of her death, during the year of mourning observed by her faith.
At first it felt strange to wear it. Then she visited me in a powerful dream and it was clear she wished to be remembered as fun loving, adventurous and at peace.
I wear the jacket often now. My daughter gave me a large dragonfly pin when my grandmother died (she loved dragonflies!). It sits on the right shoulder of the jacket. On the collar is a carved wooden dove, with an olive branch. Sometimes I add Kathe's favorite scarf.
Since her death, the jacket has been to a refugee camp in Africa, weddings, an ancient cathedral in Puerto Rico (where she once visited), writing groups, women's retreats, the birth of my first grand-daughter, my high school reunion, motorcycle trips, funerals, a cross-country road trip with my childhood friend, camping, hiking, church picnics, volunteering after Hurricane Katrina.
When I wear the jacket I imagine how she might experience the event. I recall the lessons she taught me as she prepared for her death.
My connection to her, through a physical object which represents her life, has helped move me from mourning to celebration of her life.
Is she still alive?
It brings me pleasure to plan the next place I will wear her jacket.
I think she would chuckle about that.
And I enjoy hearing her laughter.
I am accustomed to rituals that reinforce the absence created by death: open caskets, funeral/memorial services, graveside ceremonies and holidays to honor them.
I immediately thought of deceased loved ones who continue to live in my life.
Several years ago friend died on her 31st birthday. Her death rocked the community who loved her deeply: shocked by the death of someone so young, talented, compassionate and courageous. Her hope was to conquer her disease, devote her life work to comforting others who were suffering, continue traveling with her husband, have children and grow old surrounded by family and friends. Without a doubt, she would have maintained being the nurturing, loving person we all adored.
She battled her illness long and hard, wanting nothing more than the chance to live her dreams.
Near the end of her life, with grace and honesty, she delved into life and death issues. She asked questions about my sister Kathe's death. As she looked at photos of Kathe taken shortly before her death, she wanted to know what it was like for her and for me at the end of her life. Her curiosity and openness allowed others to go on the journey with her.
Her husband gave me her beloved denim jacket. She had worn it as they traveled--often on their motorcycle--to countless places around the globe.
It hung silently, reminding me of her death, during the year of mourning observed by her faith.
At first it felt strange to wear it. Then she visited me in a powerful dream and it was clear she wished to be remembered as fun loving, adventurous and at peace.
I wear the jacket often now. My daughter gave me a large dragonfly pin when my grandmother died (she loved dragonflies!). It sits on the right shoulder of the jacket. On the collar is a carved wooden dove, with an olive branch. Sometimes I add Kathe's favorite scarf.
Since her death, the jacket has been to a refugee camp in Africa, weddings, an ancient cathedral in Puerto Rico (where she once visited), writing groups, women's retreats, the birth of my first grand-daughter, my high school reunion, motorcycle trips, funerals, a cross-country road trip with my childhood friend, camping, hiking, church picnics, volunteering after Hurricane Katrina.
When I wear the jacket I imagine how she might experience the event. I recall the lessons she taught me as she prepared for her death.
My connection to her, through a physical object which represents her life, has helped move me from mourning to celebration of her life.
Is she still alive?
It brings me pleasure to plan the next place I will wear her jacket.
I think she would chuckle about that.
And I enjoy hearing her laughter.
Saturday, August 15, 2009
Saying Good-bye: A Natural Death
A couple of years ago the husband of a dear friend of mine suddenly became seriously ill. A few days later it was clear he would die soon. He was being treated in the ICU of a small hospital--complete with all of the typical bells and whistles that make up that landscape: vital signs monitors, IV fluids, EKGs, bright lights, loud noises....
That is the exact scenario that can be devastating for the dying person and the loved ones: a frantic time to try to figure out the best decisions for all.
What happened next, the day he died, still amazes me.
He decided he wanted no further treatment. His condition was too serious for him to be transported home. Instead, he stayed in the ICU and the focus of care became hospice/palliative in nature.
When I arrived his favorite quilt warmed him, his dog snuggled beside him, and his family-- three generations, including some former in-laws-and a few friends, surrounded him. Nursing staff remained available, but kept a distance to allow closeness without distractions. Soft lights and quiet voices helped the ICU to become sacred space.
The end of his life was free of frantic measures to save him, replaced by honoring his wish to be allowed a natural death. His death mirrored the way he lived his life: peaceful, surrounded by loved ones.
In the 1960s (when the use of defibrillators became common practice) the term, "Do Not Resuscitate" became a commonly used physician's order to denote a decision not perform CPR as a life-saving measure.
Since the advent of hospice/palliative care, a newer term "Allow Natural Death" (AND) is now used by some health care providers.
I will soon write more about the differences in these two approaches to end-of-life.
It is possible to have your final wishes honored. Knowing what they are makes all of the difference.
Thoughtful preparation and communication helps make sure that happens.
What have you got to lose?
We have everything to gain for ourselves, and in the process we can give a powerful gift of less complicated grief for our loved ones by reducing some of the trauma.
That is the exact scenario that can be devastating for the dying person and the loved ones: a frantic time to try to figure out the best decisions for all.
What happened next, the day he died, still amazes me.
He decided he wanted no further treatment. His condition was too serious for him to be transported home. Instead, he stayed in the ICU and the focus of care became hospice/palliative in nature.
When I arrived his favorite quilt warmed him, his dog snuggled beside him, and his family-- three generations, including some former in-laws-and a few friends, surrounded him. Nursing staff remained available, but kept a distance to allow closeness without distractions. Soft lights and quiet voices helped the ICU to become sacred space.
The end of his life was free of frantic measures to save him, replaced by honoring his wish to be allowed a natural death. His death mirrored the way he lived his life: peaceful, surrounded by loved ones.
In the 1960s (when the use of defibrillators became common practice) the term, "Do Not Resuscitate" became a commonly used physician's order to denote a decision not perform CPR as a life-saving measure.
Since the advent of hospice/palliative care, a newer term "Allow Natural Death" (AND) is now used by some health care providers.
I will soon write more about the differences in these two approaches to end-of-life.
It is possible to have your final wishes honored. Knowing what they are makes all of the difference.
Thoughtful preparation and communication helps make sure that happens.
What have you got to lose?
We have everything to gain for ourselves, and in the process we can give a powerful gift of less complicated grief for our loved ones by reducing some of the trauma.
Sunday, August 9, 2009
Senses Wish List
I received a note from a reader who shared a wonderful story about being with her grandmother during her final months, as she faded away from Alzheimer's. She responded tenderly and appropriately to her grand-daughter's touch. It became a way they communicated, when other means of connecting vanished.
Several years ago an old friend called to say his mother was dying. She was alert, but weak and frail, being cared for by family and hospice staff. I had not known her well, but he asked if I would visit her. I took Gardenia scented hand lotion. To my surprise she asked if I would massage her hands as we talked.
"Is that gardenia?" she asked.
She smiled and told me about her senior prom, sixty years before. Her date gave her a gardenia corsage. It was her first time to receive flowers from a beau. The scent held a special place in her heart. She had not told that story before.
She gave me permission to touch her, which deepened the meaning of the time we spent together.
We relate to the world around us through our senses.
Sight...Hearing....Taste....Smell....Touch....
Why not create a Senses Wish List?
Picture yourself with a magic wand.
Whatever your senses desire is at your command.
What/who do you want to see?
What brings joy to your ears?
What taste lingers on your tongue?
Do you want to be touched? If so, how?
What do you want to smell?
Go deeper.....
Are you in a familiar bed covered with a wool blanket or a favorite quilt?
Do you want a bedside lamp or overhead light?
Is the TV on?
Are others talking? Are you included in the conversation, even if you aren't verbal?
What does your skin feel like?
What is the temperature of the room?
Here are some things I have shared with my family/friends, in the event I am not able to communicate to them:
Several years ago an old friend called to say his mother was dying. She was alert, but weak and frail, being cared for by family and hospice staff. I had not known her well, but he asked if I would visit her. I took Gardenia scented hand lotion. To my surprise she asked if I would massage her hands as we talked.
"Is that gardenia?" she asked.
She smiled and told me about her senior prom, sixty years before. Her date gave her a gardenia corsage. It was her first time to receive flowers from a beau. The scent held a special place in her heart. She had not told that story before.
She gave me permission to touch her, which deepened the meaning of the time we spent together.
We relate to the world around us through our senses.
Sight...Hearing....Taste....Smell....Touch....
Why not create a Senses Wish List?
Picture yourself with a magic wand.
Whatever your senses desire is at your command.
What/who do you want to see?
What brings joy to your ears?
What taste lingers on your tongue?
Do you want to be touched? If so, how?
What do you want to smell?
Go deeper.....
Are you in a familiar bed covered with a wool blanket or a favorite quilt?
Do you want a bedside lamp or overhead light?
Is the TV on?
Are others talking? Are you included in the conversation, even if you aren't verbal?
What does your skin feel like?
What is the temperature of the room?
Here are some things I have shared with my family/friends, in the event I am not able to communicate to them:
- I do NOT want a TV on!! (So many times in hospitals the TV is on for distraction or to give something to talk about...that is fine for those who want it, but it would drive me nuts!)
- I hate overhead lights--especially fluorescent ones! Please, please just a small bedside lamp, which is turned off when I need to rest. Sunlight and moonlight please me tremendously!
- Music....please, lots of it! Some old rock and roll, a little Mozart, some Celtic, a bit of bluegrass, anything by Simon and Garfunkel. But the best would be live: anything my daughter Sara plays on viola, friends/family singing hymns, my grand-daughters singing anything they want, campfire songs, some guitar, ukulele or flute....it all sounds wonderful to me today as I imagine it.
- Flannel sheets--even in summer--would be lovely.
- Please moisten my lips with lip gloss. Feed me water, unsweetened drinks...especially Jasmine green tea.
- Hold my hand.
- Talk to me. Believe I can hear you.
- Know that I love you and appreciate all you are doing for me.
The task at hand is for us to understand what we want, then communicate that and give our loved ones permission to respond to our senses.
As a nurse I have been at the bedside of many dying persons--in hospitals, at home, in hospice care, with family members. The angst of family members at that time can be relieved by knowing some of these things before the final days.
It is a gift we are all capable of giving.
Find a quiet spot. Spend a few moments thinking about each of your senses. Write down preferences.
Share your discovery with your loved ones. Listen to their responses. Answer questions.
Celebrate your courage by pleasing at least one of your senses right now! See how that feels...savor the idea that you are sharing that important information with the ones who love you.
I found by doing that I am more likely to create an environment NOW that pleases me. And that makes me a nicer person to be around!
Friday, August 7, 2009
Ruthie Foster - "Travelin' Shoes"
A few years ago I was interviewed on a radio program. Between segments the host played "Travelin' Shoes" by Ruthie Foster. I had not heard it before and was immediately taken with it.
Some of you wrote and asked me about choosing music for my funeral--which, of course, I hope is years from now--so I thought I would pass along this link to "my" song. Or at least one of them. I want lots of music!!
The lyrics grab me. The music thrills me.
Gonna shout, Hallelujah, done, done my duty.
That is what I hope for at the end of my life...to go out feeling like I have done my duty.
And, since the only real known part of living is that we die, preparing for it seems to be my duty.
Here is the link to the song....
Ruthie Foster - "Travelin' Shoes"
Yes...shout Hallelujah!
Some of you wrote and asked me about choosing music for my funeral--which, of course, I hope is years from now--so I thought I would pass along this link to "my" song. Or at least one of them. I want lots of music!!
The lyrics grab me. The music thrills me.
Gonna shout, Hallelujah, done, done my duty.
That is what I hope for at the end of my life...to go out feeling like I have done my duty.
And, since the only real known part of living is that we die, preparing for it seems to be my duty.
Here is the link to the song....
Ruthie Foster - "Travelin' Shoes"
Yes...shout Hallelujah!
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