Terminal Agitation
Months have passed since I posted here. Now I have something to share.
Two weeks ago my father died. He was a professional violinist, an avid sports fan, a strong man and a strong personality. He put down his worn tuxedo at 90, after playing professionally for78 years. Congestive heart failure eroded him till he could not walk ten steps without stopping to catch his breath. He declined aggressive treatment, deciding instead on hospice care.
He was chipper on the morning of his last day on Earth. The about Noon he took a turn for the worse. His passing would be brief, but not easy. He started groaning and gasping for air, complaining that he could not get comfortable as the nurse and I rolled him onto one side, then another. I held his hand and recited a couple of prayers with him. I looked into his eyes, my face a foot away from his, and told him that I loved him. I talked about the good old days and how he had performed for Presidents and played with Frank Sinatra, Tony Bennet, Sammy Davis Jr., and other stars. He listened and spoke occasionally, but he was still uncomfortable. He looked at me with anxiety in his eyes and grabbed my arm with a strength he had not shown in years.
The nurses gave him a combination of Ativan, Morphine, and Haldol. His speech started to slur, but he restlessness and discomfort continued. He cried out for Jesus. At times he was unintelligible. At one point, after about four hours, he lifted his arms towards the ceiling, gazed upwards, and in a breathy voice, he whispered, “I’m dying, I’m dying,” as if it had just occurred to him. The nurses gave him more Ativan. At five hours, a new pattern appeared. He started to doze, not breathing for about 30 or 40 seconds, then he suddenly awoke with a start and with a wild look in his eyes, he started gasping for breath. This lasted for about two minutes, then he stopped breathing and appeared to doze again for another 30 or 40 seconds, followed by more gasping. (I have since looked it up and learned that this has a name. It is “Cheyne-Stokes” breathing. The literature claims the dying look more uncomfortable that they are, but who knows?) I just held him and talked to him. At six hours he wasn’t saying much, but he gestured and said he had pain in his throat. I looked at the nurse and said, “Isn’t there anything you can do to make him comfortable?” She gave him more morphine. Finally, a few minutes later he fell asleep and began to snore. I stepped out of the room and asked for a drink of water. I returned two or three minutes later, and he had stopped breathing.
Some of you may have been present through a “hard passing” death. I had never been with someone in the hour of death before. It was harrowing and disturbing. It left me spent and a bit numb. The nurse told me it was quite common. If you Google “death – agitation” you will see that this is how many people die. I had no idea. The movies portray the dying as very collected, saying things like asking Knute Rockne to tell the team to “win one for the Gipper” some day, or trying to give a cop a description of a criminal. That may be true for a few, but not for most of us. We are never quite in harmony with this world. Rudely shoved out, we enter this world, and many of us will be rudely shoved into eternity.
PS There was one funny moment. After switching my dad every few minutes onto one side or the other, at one point he was on his back, with his head elevated. He mumbled that he wanted to be moved again. I said, “Dad, which way do you want to go?” He just pointed up.
Ambiance 
lh said,
February 26, 2012 at 5:35 am
Rudely shoved out, we enter this world, and many of us will be rudely shoved into eternity.
Ain’t that the truth.
But, rodjean? You stayed there, by his side. You stayed *with* him. You were truly with him. Please don’t doubt that this matters. He wasn’t all alone in birth, the process of passing into this life, after all (his mother was there). That’s a profound thing. And he wasn’t all alone in the process of passing out of it (you were there). That’s another profound thing.
Bless your heart, rodjean, and peace be with you. Also, RIP, your dad.
amba (Annie Gottlieb) said,
February 26, 2012 at 9:52 am
Rod, you can see that WordPress seems to have posted your post twice. If you would like us to delete the duplication for you, just say the word.
It’s important to share these things and I am (not alone, I’m sure) honored that you did so here. If people talked more openly about death, as the major part of life that it is, maybe we would be, no less shaken, but a little more prepared — for anything. Because even if you’ve been present at one death, it doesn’t tell you much about the next one.
Hospice will give you the impression that the mercies of morphine have all but eliminated the “hard passing.” Obviously not. Strangely enough, I’ve had probably more than two dozen cats I was with when they died, some of them naturally (not by euthanasia), and of those, two in particular had very hard deaths in which they gave the impression they were frightened. Both struggled to get up and run away, as if death were a predator attacking them. Curiously, I think both were blind at the time they died, one from kidney failure and one from a brain tumor. I don’t know whether being unable to see was part of what made it so frightening. I thought at the time, “If some cats die like this, then it’s a safe bet some of us do too.”
Jacques and I made it to Romania in time to spend his mother’s last few days with her, and we were holding her hands when she died. That was good preparation for me to dare to be alone at home with him when he died (it was a Friday night, and our usual hospice team was off duty; the best they could’ve sent me was a stranger). Jacques’ mother’s death, from pneumonia, had not been a struggle like your father’s, but there was one frightening moment at the very end when she (this is how it looked) expelled her soul, or perhaps her body tried to restart itself, with a terrible cough that nearly propelled her out of the bed and distorted and darkened her face. So I was braced for something like that with Jacques, but it never came. He died patiently, steadily, and stoically, just breathing about twice as fast as normal for a long time, his fingernails gray. Then he just stopped. Started again. Stopped. Started again. Looked down, and with an air of “Well, okay then,” a seeming to decide, closed his eyes and WHOOSH! visibly left his body, which instantly changed totally, empty and abandoned.
lh is right. You accompanied your father as far as you could and held him so he was not alone. “It is meet and right so to do.”
It wasn’t that long ago that your mother died. I’m sorry for all your loss.
mockturtle said,
February 26, 2012 at 10:44 am
I weep with you for your loss. It makes me remember my father’s death. He had been in a kind of coma for several days and then just stopped breathing in the middle of the night. A life-long agnostic, he had come to believe in Christ the Savior at the end–the ‘eleventh hour’–of his life and, like your father, had confidence in his eternal destiny. Thank you so much for sharing your poignant experience. Your father is in now glory where there is ‘no more death, neither sorrow, nor crying, neither shall there be any more pain’ [Rev. 21:4].
rodjean said,
February 26, 2012 at 1:42 pm
Amba: Please remove the double posting. Thanks to each of you who have commented and expressed sympathy.
Melinda said,
February 26, 2012 at 3:24 pm
Rod:
I’m sorry for your loss.
We do need to talk more about what happens when somebody’s dying. I was fortunate to have this great hospice, St. Rose’s, when my husband was on his deathbed from cancer five years ago. They moved their hospice facilities upstate the next year.
Not only did they take great care of him during that “having to be moved every few minutes” stage, but they were patient and informative with me when I kept asking, “What’s going to happen next?” and “What can I expect?”
That agonal breathing you describe kicked in the day before the end, and I’d never seen it before. Jim was breathing hard enough to lift him off the bed…more movement than I’d seen him be capable of in weeks. This was followed by a day of coma.
I said to the nursing sister, “Is he hanging on because I’m not telling him to go towards the light enough? Cause I read this book,” thereby establishing myself as the Bridget Jones of Grieving.
The sister answered, “Honey, what’s going on now is between him and God.”
Lem said,
February 26, 2012 at 6:52 pm
Sorry for your loss.
Dave Schuler (@tsidjs) said,
February 26, 2012 at 8:21 pm
Eternal rest grant unto him, O Lord, and may perpetual light shine upon him.
My mom struggled quite a bit at the end. I took her hand and, addressing her by her first name for the first time in my life, spoke sternly to her, telling her not to worry and that taking care of the family was my job from now on. Shortly thereafter she just stopped breathing.
Icepick said,
February 26, 2012 at 8:45 pm
I remember my mother struggling in the darkness of the early morning last June. She first called for my sister, who was staying in the room with her. Then she called for my sister’s husband, and then my sister’s son. Finally, she called for me and my wife. We were all called in dutifully to attend what seemed certain to be her last moments. She was clearly in pain. She kept whispering “I want to go.” Everyone kept telling her it was okay to go.
She kept repeating it and repeating it: “I want to go.” I finally leaned in close and asked, “Mom, do you want to go … to the bathroom?” “Yes.” And with that, we helped her up to go to the bathroom, she started asking about her doctor’s appointment, and she put on a remarkable rally. She lasted another three months after that.
So much for my sister’s attentiveness.
Everyone was certain she was about to die. Those so inclined were in tears. And no doubt she was in bad shape. In fact, I didn’t see her in such poor condition until a couple of days before she died. But the whole time she had just wanted to go to the bathroom. Dyin’ ain’t easy, and it isn’t necessarily obvious either.
amba (Annie Gottlieb) said,
February 27, 2012 at 1:08 am
Good for you for figuring it out!
Hospice, who you’d think should know, told me J was dying one evening in early October. When he didn’t, they rolled their eyes and sighed, “Patients with dementia can go on for months and months like this.” (Medicare was giving them a hard time.) They were wrong on both counts. He lasted till November 19.
amba (Annie Gottlieb) said,
February 27, 2012 at 1:14 am
After first confusing the two, I realized they made an ironic pair: like in the joke where the reverends advertise their services “from the cradle to the grave,” “from the womb to the tomb,” and “from the erection to the resurrection,” you could say that our little life is bracketed by Braxton-Hicks and Cheyne-Stokes.
Icepick said,
February 27, 2012 at 1:35 am
Good for you for figuring it out!
Given how things have shaken out I find it funny. But then I’ve always had a bleak sense of humor.
kngfish said,
February 27, 2012 at 1:36 am
and if you were artificially conceived…”from the lab to the slab”
mockturtle said,
February 27, 2012 at 1:43 am
you could say that our little life is bracketed by Braxton-Hicks and Cheyne-Stokes. Good one!
and if you were artificially conceived…”from the lab to the slab” :-D!!!
karen said,
February 27, 2012 at 12:53 pm
Rod, i am so sorry for your loss(es). Of everyone’s losses. I guess these stories are a lot like birthing stories, too. Each painful and individual– the exception being hello and goodbye.
As amba has been w/cats– i have been w/cows… watching them go down. If the end seems so definite– then we can put them down. Not so, ourselves. In a society of trying to get all the answers& favoured results by swallowing multi-couloured pills– i am so in awe of the process you and amba and all who have shared a loss– have does so w/the patience of Job. God giveth and God taketh away.
We used to know these things by instinct– home births and deaths and what to expect. As difficult as it is- i hope i have what it takes to be brave and point upward w/longing when my own time comes.
… and may perpetual Light shine upon him.
ps– “from the lab… slab”… have i told you all lately how much i love this blog? A smile in a sad time is a lot like a knot at the end of a rope, eh?
Maxwell James said,
March 1, 2012 at 3:59 pm
A very moving post. Thank you for sharing it.
The fourth anniversary of my father’s death was a month ago. I couldn’t be with him when he died and often feel a little bitter about it. From what I understand, his passing was more like Jacques’ – though he certainly had physical discomfort, he was calm. I had been at a farmers’ market, thousands of miles away, and at my request my uncle texted me a photo of how he looked afterwards. It was strangely comforting and devastating at the same time.
karen said,
March 1, 2012 at 8:55 pm
Maxwell- my MinLaw takes photos of relatives in their final resting places. I think it’s some kind of French Canadian tradition.
Or, maybe it’s just her. It must make it seem real- and give her comfort, 2.
ang said,
April 27, 2012 at 12:13 pm
“Dad, which way do you want to go?” He just pointed up.
Hehe your dad and my mum share the same sense of humour it seems. Mum is on her first night home from hospital (again) for chf. She almost died this time (from the stages of death – not from an acute anything). I was at her bedside the whole time and what you wrote was exactly what we went through. I felt I had to keep quiet when her breathing stopped, as I didn’t want to interrupt her passing if she could. But after 40 seconds her heart which had slowed almost to a stop, would bounce around and snap her back to breathing, and repeat. Her agitation when not heavily sedated was heartwrenching. I just wanted peace for her. She very shockingly came ‘good’. Nobody understands why or obviously knows how long it will last. Her kidney and liver function had crashed and her eyes were spongy and not working, we were on a 24 hour vigil for 2 weeks and every hour felt like she could not last another. But she did. Its wonderful to have this extra borrowed time but I know exactly what is in store when her time comes. If it is any consolation – my mum remembers nothing of the whole time she was dying – even the agitated unmedicated times.
jenniferdanner said,
January 2, 2015 at 7:41 am
My mom just passed yesterday at home as I sat and watched her. We did all we could to make her comfortable. Still, as much as I Googled, and spoke to the Hospice nurse, about the process, I found myself mortified by what I saw, especially the breathing at the end. It was like she was drowning for a few minutes. That’s why I’m online now, trying to make sure I did all I could for her during this, to see if anyone else experienced death like this. I’m so sorry for your loss and painful experience, but I also appreciate your honesty and your writing about it. So many of your thoughts, even the analogy of birth/death were so familiar to me and I just wanted to say thank you for writing about it so vividly and in such a real manner. It comforts me somehow.
brunobaby said,
January 2, 2015 at 11:05 am
Yes, my husband did when he was dying from cancer. It’s like he was being sucked under by a riptide. I was assured by the nursing sister that this was completely normal. It’s called agonal breathing.
Samantha Chapman said,
April 13, 2015 at 2:36 pm
Hi thank you all for sharing your loss of loved ones, I found my Mum at hospital breathing her last breaths. They never phoned us (the lady in next bay said she had been like that nearly all night), that hurt so much. I walked into her bay and saw how she was struggling and alone!!! I held her hand and whispered to her ‘I am here and my brother was on his way’ she heard me this I am sure off. Myself and brother stayed with her till the end and then were joined by out kids and my husband. We spent time around her bed sharing memories for her to take to heaven and until we felt ready to leave. I find this bitter sweet because if they had given my Mum the medication that may help I may have not got them few moments and certainly my brother wouldn’t have got opportunity to tell her how much she was loved. I have read up so much on this subject and I have chosen to believe that yes they may be aware and may be feeling it but also the bodies way of preparation however I also saw with my own eyes that when I entered that bay she knew I was there and knew when my brother arrived and this gave her comfort and of course us. Most of all I knew my Mum so well and them last breaths would be her way of staying with us for as long as possible. Sam
Lori said,
April 14, 2015 at 1:51 am
Samantha, I can only offer you a virtual hug. It’s not just that it’s hard when people die, it’s that it’s hard in different ways: so, no easy template, no easy way to go or cope. That’s why, in my opinion, death is so very much such a both universal and entirely personal experience, and, unfortunately so, at the very same time.
Some of the people here at this blog–Amba, Brunobaby, Icepick, for examples–have so gone through it, being there as so beloved ones passed from one place to another and then the next. I think it’s great that you found this place that made you feel free to express what you are feeling about your mum’s passing. It’s a good place to do that, a place where people will notice what you’re going through and care about it.
Take care, and regards,
L
bev said,
November 12, 2017 at 10:37 pm
My experience with Hospice was devastating. They euthanised my Precious Mom without a thought of compassion or caring. literally put her. Down as a stray dog or cat at a shelter. Mom was not in any pain and did not even meet the criteria for hospice admission . Unfortunately. My uncaring sister held Mom’s power of attorney and not I . my sister knowingly signed for Mom to be administered the lethal Dilaudid , Ativan and Haldol. Prayers my sister and hospice employees receive their harsh and righteous hell fire Judgement. I have been advised , and spoken to ,the GBI in the State I reside , as they have a special unit/ dept , which deals specifically with elder abuse