Monday, January 2, 2012

The Truth Ain't Always Comforting

My mom died early in the morning on December 21st. Everybody wants to die peacefully in their sleep. Everyone wants to hear that someone they love died easily. I've been lying pretty steadily to my mother's friends and relatives. If you want that, stop reading now. Read my lie and stop: Yes, it was easy and peaceful. I miss her very much.



The truth is: My mother's death was the most horrific thing I have ever witnessed.  I have never seen suffering that intense (and I've been a part of 11 drug-free births). Listening to her take her last couple of breaths may well have been the most beautiful sound I've ever heard. I miss her immensely, but no one in their right mind would wish even one more second of life upon my mother.

Her pain control had never been great. On average, I'd say the last two weeks of her life were spent at an 8 on that infernal pain scale. (See here and here for irreverent explanations of the pain scale. Language warning on the second link.) The hospice team took us slowly through a gamut of meds. We started with Norco (a codeine and acetaminophen mix), moved to long-acting morphine pills, then to liquid morphine, Fentanyl patches and finally a Dilaudid IV pump. Each time Vlas, the hospice nurse, visited he would call the doctor and increase the meds. (He advocated for my mom compassionately and aggressively. God bless him.) And none of it worked until we got to the Dilaudid pump. It, combined with six Fentanyl patches, knocked her out and allowed her to rest peacefully. We had the pump for two days.

They give you a booklet that explains the signs of death. Several books actually. And the yvil sister and I read them and read them. A week prior to her death my mother was doing everything that indicated that she could die any minute. (Except the mottling of hands and feet—that woman died with pretty pink hands and feet.) The waiting was excruciating. (I am not a good wait-er under the best of circumstances.) The hardest was the death rattle that went on for days. She would stop breathing for 15-20 seconds several times an hour. I found myself holding my breath with her, hoping there would be no more. Hoping she'd die peacefully in her sleep.

At about 2 am, the death rattle changed. I could tell death was near. I prayed my sister would be able to sleep through it. Not likely. Mom began moaning, and that moan turned into a noise that was as loud as a scream, but not as shrill. After about forty minutes, Y came in.

The Dilaudid pump allowed four extra doses an hour at the press of a button. I have never been so precise before in my life. Fifteen minutes, press. Fifteen minutes, press. I slapped our last Fentanyl patch on her (for a grand total of  seven 100 µg per hour patches).

My mom had bought a book, years ago, about how to kill yourself in a dignified manner in the event of an incurable disease. She'd had me read it and asked if I would be very angry if she chose that route. She never got to that point while she was lucid. (Very disturbing, that book.) I pulled that out now. Not to kill her. (I'd already had to reassure Y that Mom would never have wanted her to go to jail for any reason, ever. Even though she'd said "kill me" days before.) I pulled the book out to figure out how much liquid morphine is lethal, so that I could give her as much as I could without actually hastening her death. I quickly determined that liquid morphine was hard to get to a lethal dosage once you've been taking it for a while and that the lethal dosage was quite high, well beyond any amount we could get into her. I began giving the dose that had been prescribed for breakthrough pain, slowly because she couldn't swallow and it had to be absorbed under her tongue. All the while: fifteen minutes, press; fifteen minutes, press; fifteen minutes, press.

Three and a half hours later, the moaning/screaming/death rattling subsided into mere moaning/death rattling. A half an hour after that it stopped altogether.

When she came to confirm death, the hospice nurse asked why we hadn't called for help. They could have increase the dosage of Dilaudid the pump was giving her. In hindsight, we'd had time, but at the time we didn't know.We thought we were minutes away. Additionally, the night hospice team sucked. And the night dispatch nurse sucked even more. (Had a couple of prior attempts at nighttime advice to confirm that one.) It would be an hour before they could get there. And the pump took more than an hour to set up originally. Additionally, we were too busy giving her the pain meds we had and holding her hand.

I felt betrayed by the hospice literature. By all the people who had had sweet peaceful deaths. By everyone who had ever touched my mother medically. I'd never heard of anything like this. I felt like my sister and I were dumped into the middle of a complicated surgery, handed a bunch of scalpels and sutures and told to figure it out. I still am in shock. It's been two weeks and I am still in shock. My mother-in-law hadn't died like that. My aunt hadn't. My uncle hadn't. They all died of similar diseases. If I had some sort of way to forget, I'd take it. But I don't. I get to be sucked back into the memory at random moments. To dream about it.

Finally, I just decided to write it. To get it the heck out of my head.  To save innocent bystanders who are politely wondering how I am doing. (The answer to that is just fine, most of the time.) To provide a cautionary tale to others. (Ponder long and hard about dying away from medical personnel. Weigh the risks of heinous medical interventions against the risks of dying with a sudden increase in the need for pain meds with all help at least an hour away.)

Don't worry about me. I have an amazing group of friends who have been there for me this whole journey. I will heal. I don't know how many times I will have to tell this story before it loses it's power, but I know that it will. Eventually it will become a memory, instead of a reality. Thank you to those of you who made it this far—thank you for holding my virtual hand while I've told my story.



25 comments:

Jo said...

I am so sorry. Sorry for your loss, and sorry for the betrayal. I am hoping perhaps you writing and telling the truth will inspire others to do so also. Praying the time passes quickly for you.

Ellen said...

Oh Jamie! I just want to pull you up into my lap and let you stay there to cry, scream and kick your feet, writhe around....whatever it takes to move through this. I am so sorry you had to go through that. I am glad you are able to write. I truly believe that writing gives emotional trauma a body, so it can die. Peace to your soul my friend.

VW Family said...

Jami, I found your post on Facebook. I'm so sorry for the loss of your mother and for the difficult circumstances of her passing. My mom passed away this year too, and it was similarly difficult. I only made it to her bedside (in Washington state) for the last hour of her life, but it was a horrible time for her and for all of us to witness, and it was a blessing when she finally passed. It sounds like your mother was so blessed to have you care for her so well and you'll be blessed for your sacrifice. My prayers will be with you as you heal and move forward.
Love, Heidi VW

Ardis said...

Standing next to you in spirit, Jami. God bless.

Debbie said...

Jami, I am happy that I read your story of your mom today. When my mom died of cancer when I was 20, pain management wasn't even close to what it is now. I remember the moaning, the groaning, and the crying and my mom begging for more meds. And, I remember telling Heavenly Father that I am so sorry I begged to keep her with us and could He please take her anytime he wanted so she wouldn't be in pain. Death was a blessing to us then, not a curse. Most normal people do not want to hold onto their loved ones when they see them suffer a painful Cancer death. God bless you!

Murasaki Shikibu said...

I am glad you wrote this. I too like your mom have looked into the suicide option in case things got bad for me. I do not believe in prolonging life for the sake of prolonging it. If the individual is in pain - what is the prolonging for (to rack up a hospital bill that isn't appreciated by the person in pain)? The problem with the suicide option is that by the time you know you need to do this, you usually can't do it yourself and you can't incriminate anyone because they helped put you of misery.
At the university I went to, there was an ethics class that discussed 'life and death' and many students shunned this course, but I now think that it's an important course to take because whatever the case, everyone dies one day - poor or rich, beautiful or ugly, no matter what race, religion or creed.
Like child birth, which is also candy coated and has shocked many a young girl giving birth for the first time, death too is like that. It's not a clean fluffy process and nobody should be subjected to having to pretend that death is clean and easy...or just like going to sleep. I guess it's one of the taboos in society to discuss painful deaths and this to me is not a good thing as it only desensitizes us to the deaths of strangers as well as to the pain our friends are feeling when they have had to look death in the face when a family member or spouse has died.
Take care, Jami - and thank you for sharing this with us.

Wendy said...

I don't know the right words to use here....I love you and hope the memories of those last few hours fade soon. I guess each person's death is as different as their lives.

mindyluwho said...

I've written and deleted a dozen things because nothing sounds adequate. I'm sorry that you had to go through all of that. I'm glad your mom is out of pain. I love you.

Thora said...

I'm sorry that your Mom's death wasn't what you'd been led to believe it would be. I am grateful that you posted about it - I've never been around death, but I know someday I will be, and it is helpful to know that people slipping peacefully away is not the only (not the usual?) way. I don't know exactly what to say, but I hope that writing about it did help you, and I am glad that although your mother didn't know it at the time, she had you and your sister helping her at the time, rather than unhelpful night hospice. God bless you, and your family.

Melanie Jacobson said...

I'm sorry. We had a really different experience with hospice. I'm glad that you have friends holding you up and helping you through.

Papa D said...

I don't know what to say, Jami -but thank you for writing it all down.

God bless you as you go forward, friend.

The Crash Test Dummy said...

It's like you're experiencing post traumatic stress. HUGS! I'm so sorry. I don't know why it had to be like that and I've never heard that before. I'm so glad you wrote it so I can be aware.

How awful!!! What a blessed release from pain for your mother. I can't imagine witnessing that kind of agony.

You will have a whole new capacity for compassion, and no doubt you will never ever hold even the slightest hint of resentment against your mother again.

LY

M.M.H said...

I'm sorry for your loss and hope that time will heal your wounds and help you cope with what you have experienced. I lost my mother under similar circumstances. Her moaning lasted for 4 days, the doctors offered to operate on her in a heroic attempt to prolong her life. I refused after seeing the suffering she had already been through. She died a few hours after that decision. It's been 6 month and I can see and hear her image vividly. I try and refocus my thoughts to happier times, but it's hard for me to do. I know she is with God and I pray she is in a better place. My condolences once again.

Jami said...

Thank you for your kind comments, MMH. It's been a year and a half and I have healed quite a bit. I miss my mother immensely, but the bitterness of her death has faded. I hope that you too will heal from your mother's difficult death. Writing about it was very helpful for me. Perhaps it would be for you as well.

Blessings,
J

Barbara said...

Thank you for sharing your real story of your mother's dying. As I write this, my mum is in the other room--dying--in a state that is so hard to witness. Her moaning reminds me of a small animal cry and it is almost ceaseless--has been this whole day. Days and weeks before the sound was a more robust--not as prolonged, but very distressing. Now it is just like a continues cry, but not like tears. She cannot express whatever it is though she is conscious. She has lost the ability to initiate communication, but I can get a somewhat garbled yes or no if I try very hard. So I understand the feeling of wanting the last breath to be close and I can imagine your agony as you were left to deal with it all. Because you shared your story, tonight I feel less alone with my mother's struggle. For that I am every grateful, Jami. I pray that your memory will heal and know that in sharing your real story, you are helping many others--at very least, you have helped one.
God's blessings to you now and always.
Barbara

Barbara said...

Thank you for sharing your real story of your mother's dying. As I write this, my mum is in the other room--dying--in a state that is so hard to witness. Her moaning reminds me of a small animal cry and it is almost ceaseless--has been this whole day. Days and weeks before the sound was a more robust--not as prolonged, but very distressing. Now it is just like a continues cry, but not like tears. She cannot express whatever it is though she is conscious. She has lost the ability to initiate communication, but I can get a somewhat garbled yes or no if I try very hard. So I understand the feeling of wanting the last breath to be close and I can imagine your agony as you were left to deal with it all. Because you shared your story, tonight I feel less alone with my mother's struggle. For that I am every grateful, Jami. I pray that your memory will heal and know that in sharing your real story, you are helping many others--at very least, you have helped one.
God's blessings to you now and always.
Barbara

Jami said...

Barbara, I'm so sorry you are going through this right now. I'm glad you've found some comfort in my experience. I have healed so much. At the time, it felt like it never would, but the human spirit is remarkable. We heal again and again. I pray your mother's passing will become more peaceful and that you will be surrounded by love.

ahab's dark shadow said...

It has been over two years since you wrote this, and I'm sorry you had to go through it. It was very visceral to read, and I want to thank you for sharing something that is not much talked about, only haunting the memories of those who have gone through such an experience.

Barbara Dale said...

i was so glad to have found this. i have my mom at home with me now on Hospice. All the literature is this sweet sappy wonderful stuff. I wanna read something REAL, good or bad, so i can deal with anything that happens. I am a wound specialist nurse working in home care and see hospice patients as well. This entire last month has given me a new perspective and a new outlook that i plan to put into practice immediately. Hugs to you for what you have been through. I hope your pain has somewhat softened and that each day is easier for you. Barbara

Melissa Schneller said...

It's been 3 years since my mother passed away from colon cancer.She was at hospice for about 4 hours before passing.The hospice nurse said her moaning came from the ride from the hospital to hospice.My mother moaned with what appeared to be pain and scared.My brother and his wife were there.I had to leave,I could not handle seeing my mother moaning and making painful noises.My father passed away in the same hospice peacefully,his was lung cancer.My mother Sept.26,2013 and my dad Sept 25,2012.Not a day goes by that I don't miss them both.

Rona said...

I am so sorry for your loss.
I am sitting at the hospital with my dying mother - the worst week of my life and it is not over yet.
In this day surely they can make this process more peaceful, legally of course.
It is so cruel to put everyone through this.
I don't know if I can watch and listen to this much longer.
Your blog has warned me what to expect.
❤️❤️

Unknown said...

So sorry. I am going through this right now with my mother. She is asleep after moaning for a full hour. This is really tough.

Jami said...

Unknown, I'm so sorry that you are going through this right now. It's been five years and I still remember the experience as if it were yesterday. Wishing you both peace in her passing.
<3

Roseanna Smith said...

Thank you so much for this honest post, and for the comments from people who've gone through similar horrors. My mother is dying, right now, and it's been going on for days. It's also the most horrific thing I've ever witnessed. We don't treat our animals like this. I'm seriously reconsidering euthanasia as the moral choice. She was a wonderful woman, and does not deserve this agony. (I also don't believe the literature when it reassures us the patient is in no pain. Her grimacing face and awful cries are telling the truth, I think.)

I'm so sorry for your loss, and for the experience that will haunt you, as I know it will haunt me. I'm grateful for your honesty. I felt alone, and I don't so much now.

DixxieBelle said...

I too am going through this now. I cannot believe it, never, ever thought I'd witness such, talk about naivety. This is supposed to be the "humane" way to do things? Let them die "peacefully" at home? There is nothing peaceful about this process. My mother does not deserve this either, she has been devoted to God for just about her entire life. I do not understand it. I'm not supposed to question it though, but I do. I have watched her go backwards, as you watch a child go forward. You all know it, obviously, I don't need to tell you. I am sorry for you all, I really am. You truly do not understand it until you are an active participant in it, my sister lives out of the Country, so I am doing this by myself, other than caretakers I have hired while I work. I appreciate prayers, but I am so tired of lip service. Maybe I am wrong for feeling that way, but I do. The Hospice nurse has been doing it so long she just doesn't really give a you know what. I asked for two weeks to get mom's cath changed out due to the crap in the tube. Once she did, can you believe it's been clear??? Ridiculous. I am sorry Roseanna, I have thought about that too, a lot. I would never want to go through what my mom is.