End of life question about bilirubin

[Nik Colon]

Sending much love and (((hugs)))

[pukalania]

sending love sweet Julia

[WifeOfMike]

My dearest Julia,

I am sorry you are walking through this difficult time with your loving husband. My heart is beside you both
What I learned through our other friends journeys here with their loved ones.... and my journey with my beloved Mike.... all of them have similarities & differences.

My husband worked 6-7 days/ week and was doing perfectly fine, including riding a stationary bike 9 miles- 4 days/ week. He drove himself to & from treatments/ clinical trials & work/ home. He was getting ready for radiation treatment & crashed the day before he was scheduled to start- ending up in the ER & released the next day (October 17th) to home hospice under my care. The tumors had grown near a major airway & his breathing got noticeably worse. Radiation & any further treatments were off the table. They had prescribed Dexamethasone in readiness for radiation & told me to keep the course, to aid with his breathing.

He walked the entire bottom floor of our home for several weeks on his own two feet, without assistance. He rarely used the morphine/ Lorzapam combo prescribed & sitting in my fridge, only used the oxygen if he was sitting in his hospice bed, & I sometimes had to remind him to do so. After Thanksgiving he used a wheelchair as he meandered the entire bottom floor of our home- still under his own steam for food, bathroom visits & entertainment because it was quicker & less taxing. I would however catch him meandering on his own two tootsies- usually in the dead of night & I was upstairs sleeping. We managed many chatting visits, holiday festivities, a handful of outings with portable oxygen tanks. I monitored his visit lengths by his energy level, and naps when ever he was tired. Everything- sleep, awake times, visits, food intake were varied by the minute & tailored exactly to his immediate needs/ situation. They changed on a dime either way & we both went with the flow.

His health deteriorated slowly, an inch at a time, allowing him to enjoy the holidays with his family- awake/ cognizant of his surroundings with full mental capacity. I do remember as his breathing difficulties progressed, the hospice nurse got more aggressive in his prescription schedule- 1 tab of morphne & 1 tab lorzapam every 4 hours- telling us the combo would help with his breathing. However, the every 4 hour schedule made Mike start withdrawing, sleeping continuously, was groggy, slurred speech & slipping mentally. The week our hospice nurse went on vacation, the substitute nurse (many years on the job) and I had the discussion as to how fast this fogginess came onto the picture. She told me to ease back on the combo. to use lorzapam 1/2 tabs alone during day time, and to add morphine at night time to help him relax & sleep. It worked like a miracle & he popped back to his regular mental capacity- more refreshed & stronger during the day time (I chalked up to more restful sleep). Only during the last few days of his life, did I up the dosages- slowly to match how he felt.

He enjoyed everything he typically ate during Thanksgiving & Christmas, although tiny portions. He ate a lot of yogurts, cheese, hard boiled eggs & chocolate boost energy drinks. Somewhere along the way, the DEX pushed him into full blown diabetes, and another situation of delirious talking. I had to push like a banshee to insist they take a blood test and low & behold my hunches were dead on. He had gone from normal to full flown diabetic. Hospice stayed 24 hours, steadied his health, taught me to give blood finger prick tests & give insulin- both pill form twice daily & insulin shots f his blood sugar level raised. His mental capacity stayed right up to the day he passed away. He had only several days of full bedridden capacity, at the end. His final last day only, of aggressive breathing difficulties & I had called to have a catheter inserted. Hospice left after insertion & stabilizing him for two hours. They had prescribed 1 tab morphine, 1 tab lorzapam every two hours. After his third dosage, he drifted peacefully off to sleep in our home & my dear man joined the angels on January 1st, 2015 at 8 PM, surrounded by me, and our three sons.

Any details as of timelines can be found in my long post "In the Blink of an Eye"
viewtopic.php?f=1&t=48794&hilit=in+the+blink+of+an+eye

Many friends here gave me the encouragement I sorely needed during the last lap of our journey together.
If not for those folks, I dare say I may have been a mental basket case myself. My time spent HERE saved ME.
Wishing you both strength, courage & Many hugs. I am a PM away, if you need me.
Vicki

[hart2hart]

Julia,

We are sending you lots and lots of hugs and love in this most difficult time.
Please let Chris know how much you both have helped and guided us through our journey.
WE LOVE you both dearly.



Julie and Pete
Stamford, CT

[Icesk8tr]

Julia, you and Chris are in my thoughts and prayers.

Christine

[rkolo]

Julia,

I know what your going through as the liver starts to fail, I remember seeing my dad on a Monday early April his eyes mildly jaundiced when I seen him again 5 days later his entire body was extensively jaundiced, he hated that colour but was accepting of his fate.


In a nutshell we knew the outcome had seen this before, dad would become more tired as the days passed, I found this so hard, the change from an independent energetic man to a man barely able to stay awake long enough to acknowledge your presence, this was so hard, the only issue with jaundice dad had was itchy skin, creams and relaxant meds helped this.


Looking back if there is a nice death even though I can't subjectively comment I feel objectively it was a comfortable death, in that dad lapsed into a coma on a Sunday morning and died 8 hours later, he passed about 3,5 weeks after jaundiced originally became noticeable.

I wish you well, prayers and thoughts.

It's not easy.

Rkolo

[pfCml73183]

Keeping you both in my prayers.
Celeste

[Lee]

Sending you both love and prayers for some good days ahead.

Gentle (((HUGS)))

Lee