Dying Thread

[concernedrelative]

Thanks so much for this thread Ashlee. I am grateful. As a DH and primary caregiver to a beautiful woman who doesn't want to know anything until the big hits come, it is often hard and a guilt-ridden experience to want/try to be prepared. And her time is coming in the next few months. I just know it from spending years culling this site and watching her body deteriorate however incrementally. Thankfully we both have advance care plans as she filled one out before surgery in 2012 and I signed up last week with my provider under the guise of making sure I had *some* ducks in a row for my wife. I want to be so prepared to do the right thing for her near the end and yet I know for certain we will both be lost trying to grasp on to final days/hours.

Let's keep this community contributed effort going on this thread. I derive tremendous comfort from it esp. the folks who are generous with their prior direct experiences.

[alphagam]

I so appreciate this thread. Death may not come from CRC, but death is still coming. My dad, 88, died about 6 weeks ago. He died from radiation damage incurred 25 years ago for prostate cancer. He died because his bladder was thin and when he was catheritized (sp) for a heart valve replacement, very successful, it caused bleeding. The on call urologist didn't listen, the bladder ruptured and sepsis set in. No advanced directive, no talk about end of life, nothing settled. Not only did he suffer needlessly, but the mess he left behind in unbearable at times. We are all going to die, thanks, Ashlee for giving all a place to discuss these issues.

Kathy

[Candyys03]

Dying/Death- seems to be a taboo word for some people.
My issues-
*I lost my bucket list.Can only remember 2 of the 4 on my list. Did my first one in March-went to Disney Land with my grand daughter.#2 Is to go to Mexico one last time.
*My son and his girlfriend announced that they are getting married 9/2014.That is a long way away to me.
*I don't want to die in the hospital but at home with my family.If I go on Hospice I don't want to live months or years more I want to go quickly.
*I need to clean out my house(clean it too especially the floors and carpet but that's a different issue),get rid of things,give things away,give the things that are my kids(3 adult children-2 daughters,1 son) back to them.I have slowly started.They don't want anything,don't want to help me and I really don't want to do it but if I don't my husband and daughter(middle child that lives close to me and helps me) will have a mess on their hands.
*I have my memorial planned out,my wishes,where,who,what-written down but no one wants to discuss it with me or hear about it.My husband and daughter- "don't worry we'll take care of things".

Thanks Ashley for this post!
(I hope it doesn't scare the newbies but it is the truth.)

Candy

[surfingon]

For all you new Colon Clubbers who do not know me: as a way of dedicating my husband's suffering during his 4 years of living with metastatic colon cancer to the benefit of all the countless others who are and will follow in his footsteps, here is a link to the blog I started for colon cancer patients and their families in which I describe the really remarkable hope-filled last 4 months of his life:
http://sheddinglightonthecancerjourney.wordpress.com/2010/09/29/healing-into-death/

With my background as a 27-year volunteer for one of the most progressive, spiritually-oriented hospice in the country, a teacher of new hospice volunteers and a wife who pretty much single-handedly and ferociously managed her husband's case while actually managing to positively change some of the dysfunctional ways our HMO dealt with cancer patients, my perspective on this whole journey is informed by hands-on personal experience and a lifelong quest to learn more.

This post on Living Wills is based on a lecture I attended by the lawyer who defended Karen Ann Quinlan's right to die case:
http://sheddinglightonthecancerjourney.wordpress.com/2010/12/30/living-wills-just-a-starting-point/

There's lots more: the difference between hospice and palliative care, how to choose a really good hospice (with information that only a seasoned hospice staff person working at a truly enlightened hospice would be privy to), pain control-- basically everything that I thought could possibly be helpful to others-- it's all in there, and more.

With my sincere hope that at least some of you may gain some benefit from our experience,
Rachel

[skypup]

Thank you, Rachel. It will be my reading for tomorrow. Even though it's a bit hard to make all the plans in advance, hey, we only die once and better to do it well, IMO.

[Lisahopes]

Rachel, I am confused. If your dear husband was confused in hospital due to his compromised liver, how could he be clear headed for 5 months thereafter? From what I have seen, once the liver is riddled by cancer, it loses its ability to function and the toxins cause confusion, that does not clear up unless the cancer is somehow removed from the organ.

It seems to me that your husband was also an unusual case in that he did not deteriorate as is typical.

[surfingon]

In response to Lisa, I'm posting this publicly so that anyone else with liver issues might possibly benefit. The simple answer to her question about clarity with a compromised liver is a simple sugar called Lactulose. Taken orally as needed, it helps to control the build-up of ammonia that causes confusion by binding the ammonia to the patient's poops so that it can be excreted.

None of John's doctors thought to offer it to him in the hospital. It was only when he returned home and my dear hospice nurse friend (on another island, without even seeing John-- just from my description) suggested it as a possible solution.

It doesn't work in severe liver failure, but it can have dramatic effects very quickly when the liver is compromised but not yet failing. The most common side effect is diarrhea-- but it seemed a small price to pay for the huge improvement in clarity.

Yes, John's deathing process did not follow the usual downward spiral-- but it isn't totally uncommon, as we have seen more than a few of our hospice patients improve significantly after being given a very short term prognosis. Bearing witness to the deathing process is a step into the greatest unknown of our lives and I think it's critical to remember this. Anything and everything is possible at this time-- if we, the witnesses, are able to assume what I call "mental spaciousness". Which was the inspiration for this post.

May all benefit. May all live and die in peace.

[Lisahopes]

Thanks Surfington. I knew about that option and we tried it but by then consuming relatively large quantities of Lactuolose was impossible for my mom. She was even having a hard time swallowing her tablets and food. The lactulose was also needed in relatively large amounts.

[BrownBagger]

Thanks for this thread, Ashlee.

Lately I've been telling people: "I know how this ends--I just don't know when."

[CRguy]

Just to add onto surfingon and Lisahopes comments concerning lactulose use with liver failures :

it actually enhances gut bacteria's ability to detoxify the ammonia, keep it in the gut, and speeds its removal from the body so it lessens the severity of any mental issues ( hepatic encephalopathy.) It can cause diarrhea ( dose dependent ) and if needed in severe situations, can also be given by enema if a patient is unable to take large amounts orally. ( Other medications are also suitably dosed via enema or suppository if they are not active via injection. )

Just wanted to add that info, as this topic will likely become one of our reference threads for collecting information from our experiences.
Thanks Ashlee.

Harmony to All
CRguy

[surfingon]

I certainly do not want to hijack this thread, but think that CR Guy's contribution to the Lactulose topic is invaluable for all colon cancer patients and their loved ones.

Lactulose enema-- OMG! First 2 Google hits (from Annals of Internal Medicine and a monograph for medical professionals) both state that Lactulose via enema can reverse a hepatic coma within 2 hours-- and that rectal route is useful for patients who are unable to swallow. Totally amazing. A huge mahalo to CR Guy for this one...

[CRguy]

Aloha my friend. Thank you for continuing to support us here with your knowledge, understanding and compassion.

I agree, don't want to hijack and not sure Ashlee wanted more of the technical nuts and bolts type stuff ??? .... but as a vet, I have had extensive "hands on" dealing with critical care and end of life issues so there will be some parallels I think with my own patients and their humans. Vets will probably do a lot of what may seem more compassionate or "common sense" things because we are one step removed from the intensity of human medicolegal constraints. I have certainly seen that recently with the passing of MIL and won't bring up those conversations here (...I've already vented elsewhere.) End of life MUST be centered on the patient because that is exactly what it is about, and everything else which gets done or not done has to flow into that dynamic. That is exactly why these conversations are so important and must be entered into by the patient before situations make them necessary. JMO.

CRguy

[live2jett]

Ashlee..to scroll down and see this post...at first it made me smile..because this is why i love you so much. You always speak your truth. I'm grateful that your friends are helping you with the details. I think your amazing..and just love you pal xo

[SMR]

My husband just figured out yesterday (after a doctors appt that ended up being 13 hours in hospital in all), after two years (DX will be two years exactly on Monday) that his death is going to be soon, perhaps very very soon. He is an emotional wreck. As many of you know he has been resistant to the idea of talking with anyone, be it professional or fellow patients on this wonderful board. Perhaps he will choose to engage now that he has accepted (or at least acknowledged) his reality.

We have a will, health care proxy, and POA set up as we did that before his HIPEC surgery. Would those of you going through similar situations care to share what else we should try to accomplish (other than loving each other and trying to spend our days in happiness rather than fear and anxiety...) If this is not appropriate for this thread, I'm happy to repost elsewhere. My mind is a blur after the horrible day we endured yesterday...

[Felicia]

SMR, My husband's 2nd cancerversary is tomorrow on the 27th. We are in the hospital and slowly figuring out that hospice is likely next if he gets to go home. So, similar time lines.

One thing he is trying to feel good enough to do is some videos for our girls. He has so much he wants to say to them. He has a will, POA, advance directives also -- did that right after diagnosis. He has since come up with more specific things that he wants done with his things (certain bikes to certain people, etc) and I'm just writing them all down. I hope that he can feel up to doing the videos. SO wish we had done them sooner. We were warned to do them earlier, but you just never think you are as close to the end until you are face to face with it.

Felicia