Sunday, February 27, 2011

Dying Alone

I introduced Larry in my last post, "A Day in the Life." He'd come to the hospital saying that he couldn't breathe. He'd lost his appetite and a lot of weight. After a week of tests, the bad news came back: stage 4 lung cancer, already spread outside the lung to the liver and the bones. He agreed to chemotherapy and then stopped after one treatment, saying it hadn't helped. His record has several notes from oncologists along the lines of "I explained that it's wrong to say the treatment is not working after just one dose," but Larry was determined. All he wanted was to be comfortable, he said. That's when my team and I made Larry's acquaintance. He moved to our inpatient unit and passed away a few days later, pain-free and breathing easily.

Larry had no real medical record. On admission he proudly told everyone that he hadn't seen a doctor in 50 years or more. He lived alone. No family members were listed in his chart. There was rumored to be a distant relative in another state, but calls to that number didn't connect to a person or to voicemail. Larry did have a friend of sorts, someone who lived in his building and took care of his cat. But there was no one to call when Larry entered hospice, and no one to notify that he'd died.

Our instinct is that it's sad for anyone to die alone. Deep in our collective consciousness, I think, is the Hollywood death-bed scene -- the dying person surrounded by loved ones, perhaps dispensing final words of wisdom before taking one last breath and slipping away. I've had dozens of conversations that begin something like, "Doctor, how long? His daughter/grandson/best friend wants to be here at the end, and that person needs to know when to come." I've had family members literally refuse to step out of a patient's room for fear of missing the moment of death. Not long ago, a rabbi told me that he was organizing a prayer group to be present at a patient's dying moment, so he needed as much precision as I could supply. I used to work for a hospice that took pride in its "vigil program," a group of volunteers who'd sit by the bedside so that no one had to be alone during the final hours and minutes.

I've had many private conversations over the years with dying people in which they've shared their fears. Often they're afraid of suffering. They fear for their families' well-being, and sometimes they worry that they've left some piece of interpersonal work undone. But they never tell me they fear dying alone. On the contrary, some have said they were afraid of dying in front of their families. They wanted to spare them the pain of witnessing that final breath.

All hospice veterans have seen this: a family sits in vigil with a loved one who seems endlessly suspended between life and death. The family leaves en masse, perhaps to get a bite to eat. And moments after the loved ones exit, the dying person completes the work and the soul detaches from the body. When families express amazement, we tend to offer an interpretation. "She was waiting for you all to leave," we say, "probably because she wanted to protect you from seeing the very end." And this explanation, in my experience, is comforting to families.

So we say that no one should die alone, yet we seem to accept with equanimity when someone we love -- and I hesitate to use this word -- chooses to die alone. It's an odd paradox. Perhaps the dying don't fear dying alone. Perhaps on some level they embrace it. And so perhaps what we ought to say is not that no one should die alone, but that no one should have to because of circumstance or fate.


19 comments:

  1. What you described is precisely how my father died. In the week that his death was clearly imminent, we slept in his hospice room, we stayed with him and with each other round the clock. I said what I knew must be my last goodbye to him and left about 30 minutes before my sister was scheduled to come back. This was his first time entirely by himself in many days. He took his last breath during that time alone.

    We got the standard speech, and took whatever comfort was to be had in it. He seemed to be totally comatose by the end, but hopefully it was somehow his will to pass the way he did.

    Thank you for this great post. I only discovered your blog today, but will become a follower.

    ReplyDelete
  2. I thank you for your kind words and hope that your father's passing was a gentle one.

    ReplyDelete
  3. Mom died alone. When I found her she seemed rested, her eyes were closed and seemed as if she was sleeping. I thought to myself how come I didn't hear a strugge as I was nearby, sleeping, for it was the middle of the night and she would typically call out if she was uncomfortable. Perhaps your reasoning makes sense but as she was suffering from dementia I doubt she decided to allow me to sleep through her last moments. It is comforting to think she left quietly by design to save me the hurt of watching her die. It could have been her way or god's way to protect me. Thanks for giving me an uplifting way to deal with my sorrow.

    ReplyDelete
  4. Nice to meet you, doctor.

    Amazing that you even stated "no one should have to (die alone) because of circumstance or fate."

    I am getting things in order so I can die at home alone.

    Have owned my mountain-wilderness home for 20 years, and 6 months ago now the Neighbors wimax routers brought onset of constant migraine, tinnitis nausea, hives, weight loss, arhythmia, nightmares, etc===and all of these are brand new tortures I never had before.

    Whenever the wifi is turned off , these symptoms cease. But there are increasing residual damages. And I have NEVER used a cell phone.

    Friends say try cannabis, which I want to do. But I may not tolerate it. And no other natural remedies help the unbearable tortures from wimax is unbearable.

    Research prooves that wifi splinters DNA, wipes out mitochondria, caused diabetes type 3 --a whole new type of diabetes created by wifi , cancer, alzheimers, parkinsons, ETC.

    WiFi routers, towers, antennas are destroying trees, bees, all of biological life.

    And do folks realize that warfare is wireless now ? HAARP and other scalar weapons leave electronic trails every time they are deployed. By tracking HAARP trails, scientist friends are predicting ahead of time all the recent earthquakes, tornadoes, volcanic eruptions . Fukushima was a HAARP job.

    So in fact, I am a casualty of the undeclared secret wireless- warfare. Cell phones, wifi, etc are all microwave radiation weapons of mass destruction. A slow Hiroshima.

    Cold blooded creatures with no souls nor affinity for Nature are ruling Earth.

    And if we don't proclaim the truths, we are accomplices.

    Eternal Thanks doctor.

    Maimonides is proud of you.

    ReplyDelete
  5. My 78 year old father died last week in very similar circumstances. He was in a "coma like" state for about 30 hours, my Mom, and siblings and I had all spent those 30 hours with him. He was in a hospital setting and we had just "flipped" him over to hospice. They came and assessed his condition, he had all the symptoms of impending death. They suggested we all tell him goodbye (we had done this many times) and maybe tell him we were going to give him a little time alone. We spent 15 minutes outside of his hospital room, and when we went back in he was gone. I was tormented by the fact that we left him to die alone, but the hospice nurse said sometimes patients don't want their family to witness their final moments. Thank you for helping me with this, my Dad was so loved and I am sure he knew that. We laughed later that it was his final way to "control" things, something he enjoyed doing. Rest in peace Dad!

    ReplyDelete
  6. As a hospice caregiver to my best friend, I've tried to explain to her family that her alone time is precious to her. Still, they insisted on coming and we now have 5 people living in a 2 bedroom home. I paid for a hotel room for them, but this was seen as a "red flag".

    As a caregiver who sleeps on the couch in the living room, this has been most disruptive. More importantly, it has also put my friend on overwhelm. Her son keeps wanting to do something. I try to explain that his mother feels someone is always doing something TO HER and that he can help by giving her quiet and space. This is interpreted as my trying to keep him from his dying mother.

    As a caregiver, I can tell you the patient is not the hard part. The family of the patient is the hard part. Her son is much like the people you describe. He does not want "to miss it". I can only hope he will give her the time and space to leave privately if she chooses.

    ReplyDelete
  7. My father was a hard, cold man in life and I longed for him to acknowledge me. At his imminent death he impatiently asked me to leave and I must say I felt rejected as in life. I acknowledge this was his right as it was HIS death however I feel hurt when I think of this rejection.For his own reasons he asked me to leave but this is now my grief to bear after he has gone.

    ReplyDelete
    Replies
    1. I feel badly for you. Perhaps, in his own way, he was trying to protect you from the pain of watching him die. Easy to say, hard to know. It's been my experience that people tend to die in the same way that they live. I hope you can find your way to peace about this.

      Delete
  8. This is exactly what happened with my father just two days ago. He was being kept alive by machines. He could not talk to us, but could communicate through facial movement and eye movement. We, as a family, knew he did not want to live this way. So, after agonizing over carrying out his wishes of no life support, we did not want him to die alone. The doctor informed us it is not like in the movies when removing life support...it could take minutes, hours, or days. Once my mom and us said our final last good byes, the breathing tube was removed and extra pain medicine was given at our request(wanted to make sure he was in NO pain at all!!!). We circled around him and cried and prayed for daddy to go quickly and peacefully...but his heart and breathing kept going. It looked like he was sleeping in his recliner. An hour later of crying and sadness, we started to lighten up a little. At the three hour mark, my brother and I had to quickly run back to the hotel and walk my parent's dog and check on my daughter. I told my sisters to call me as soon as something changes. While we were gone, my mother asked the nurses to change my dad's sheets due toxins leaking out of his skin. My mom didn't want him to be uncomfortable. The nurses asked my mom and my sisters to step out of the room while they did this. My sisters somehow talked my mom into eating something and walked her down to the cafe while the nurses changed his sheets and cleaned him. They were in the cafe when the ICU alerted our family back. No one was there except the nurses when my dad took his last breath. He was cleaned and shaven when he passed. I realized, we were pulling on my dad's heart strings while surrounding him at his bedside. He could not leave us when we were physically there, and he did not want us to witness his passing. He protected us all the way to the end. I truly feel he could finally let go once his wife and children left his bedside. The nurse and chaplin confirmed that they see this happen all the time...for the soul to pass once the family has left their side.

    ReplyDelete
  9. My mother also waited till she was alone....The hospice nurse told us that the hearing is the last thing to go too.....Well Momma wasn't alone at all for days...even once i told her we were all going to go out to lunch and she could have some alone time with her God.....well i sat with her and didn't make 1 move for about 2 1/2 hours...someone told me she knew i was there,that i wouldn't leave her and that she probably could smell me.....On the night that she did pass,my sister and her husband were staying the night with her...it was about midnight when i decided to leave... at this time Momma was down to about 3-4 breathes a minute,anyhow about 1am my sister said to her husband "I'm stepping out for a cigeratte" he said "Ok when u get back i'll go out for one"...then my sister said to him "Mom will probably be ok why don't we go together we'll be back in 10 minutes"...so together they went and about 10 minutes later they returned,and found that Momma had passed.Momma must have heard them and said
    "finally i'm alone,ok God i'm ready"...Our Mother died with such grace and dignity and she reached out for me while on her deathbed and barely concious and gave me the best gift she ever could...she gave me the last hug she ever gave...So i share our story and also that sister didn't want to be in the room when Momma did take her last breath,that was my sister gift...Thank you all for ready..God Bless

    ReplyDelete
  10. My mother passed away today approx 5:30 p.m. at Hospice she had lung cancer and was 90 I took her home from rehab last Friday doing quite well walked to the car and was very sprite over the weekend she would not eat and her breathing became labored she was admitted to a Hospice facility on Monday on Tuesday ate a meal for the first time in 3 days spoke and was alert with her 2 young great grandsons age 2/4 went into a coma status Wednesday no response ..on Thursday had eye hand movement when my son and I were with her this morning she had a high fever and rapid breathing and no response through all these past days I spoke to her about everything telling her that it was ok to go on as of this morning all family had been in to say their final goodbys the circle was now complete I told her that I had to leave to let the dog out and take care of the grandkids for a short time I know that I saw her raise her eyebrow maybe saying ok..when I returned she had passed she was very warm eyes closed very peaceful I went for the nurse they did not know and said it had occured within the last 30 minutes I believe that my mother passed before I arrived so that I would see her lifelike... no phone call and a cold body to witness I stayed with her for the duration until the funeral home arrived. If people do die like they lived then this is true because my Mom was always very happy living alone. God Bless to all struggling with the questions and guilt of a loved one passing without them present.

    ReplyDelete
  11. Both my parents died without me being there when I could have been. I failed them and carry that. I am unmarried, no children and will likely die alone. I'm not sure I'm looking forward to this.

    ReplyDelete
    Replies
    1. I hope you can forgive yourself. I also hope you have a support system -- friends, colleagues, maybe co-religionists -- who can be there for you when you need them.

      Delete
  12. I've been living in the U.S. since 1997. I'm now married with a 2 year old daughter. I was born and raised in Germany. My mom was diagnosed with lung cancer 2 1/2 years ago and we were told she had approx. 6 months to live. Cancer had spread to spine and brain. I immediately went there to be with her during her first chemo. During the past 2 years I went back 3 more times each time I was being told she was about to die. The past two times I said my goodbyes to her thinking I would never see her again - last time in May '13. I got the call this week that she is now in palliative care and will most likely not return home. I am torn apart not knowing if I should go to Germany to visit her again - I asked her today and she does not want me to come. I know she nor my dad want to burden me. I'm afraid of seeing her even more weakened and marked by her illness than the last time.... I just don't know what to do. Will I regret if I don't go, or will I regret if I do go. Part of me wants to remember the beautiful strong mother she once was....

    ReplyDelete
    Replies
    1. She'll always be your beautiful, strong mother. Your situation is like the little boy who cried wolf. I don't know how things are organized in Germany, but in the U.S. you're not "in" palliative care; you can receive the many supportive benefits of palliative care while choosing disease-modifying therapy simultaneously if you like. Still, you make it sound as if the end of her remarkable life is now quite close. Perhaps you can visit again without making the physical trip. Technologies like Skype and FaceTime on the iPhone have made it possible for many families to visit across the globe.

      Delete
  13. We all live alone, die alone. The feeling of not being alone is nothing but an illusion, a mirage.

    I'm a cancer patient just had my 40th birthday and I am lucky enough survived 4 years for now, if one day my cancer comes back and is my time to go, I will choose to die alone. I don't want my kids and my wife bear the sight of my suffering they will never forget for their life time. We all live, we all die, alone.

    ReplyDelete
  14. Replies
    1. My biography is posted on the site, and my very first post explains why I choose to remain anonymous.

      Delete
  15. My mother died at the hospital last night. All week family members and friends had been visiting her and my father would spend every day and night staying in her room. On the last day of her life my sister and I left around 8 PM. My dad left at around 10 because he was having trouble sleeping in the room and thought he'd get more rest in his own bed at home, and planned to come back in the morning.

    At 1:30 AM we got a call from the hospital that she had passed away. I felt horrible that nobody was there for her when it happened, but reading this blog has helped give me some comfort that maybe she was just waiting for us to leave.

    ReplyDelete