End of life journey

From the book WHEN BREATH BECOMES AIR by author Paul Kalanithi:

"I didn't know. But if I didn't know what I wanted, I had learned SOMETHING ... the physician's duty is not to stave off death or return patients to their old lives, but to TAKE INTO OUR ARMS a patient and family ... until they can stand back up and face, and make sense of, their own existence."

kukukajoo,
It's not a very long book, but you will want to have some time to digest it. As you have seen from cyclone's quotes, the author is masterful at coveying great meaning through written word, and his thought process as he succumbs to cancer is so profound and thought provoking I'm planning on re reading this book several times.

July 14: I have been feeling a lot better today about Gary's comfort level. He seems to FINALLY be getting a good deal of peaceful rest. He occasionally is getting the urethral pain from the irritation, even thougt he has had the catheter for a week now.
I ordered a bed rail to keep him from "wandering" at night if he forgets he has a catheter or wants to sit in his recliner. He was really opposed to feeling trapped in bed, so I gave it up for now.
I was also supposed to get some shower assistance for Gary today, but he begged me to spare him some level of dignity, so I quickly agreed to call that off and let he and I "sweat it out" through the transfer from chair to wheel chair to undressing, shower chair back to wheelchair, back to recliner and then get clean clothes on. And now all while working around catheter and bag. He is able to lift his arms, raise his hips, stand and turn around and walk a short distance. But everything is an effort and takes a toll. So one can imagine if standing up and walking a short distance leaves you gasping and winded, what the PROCESS of showering has become. We are down to once every four or five days. Soon it will have to be sponge baths, and with assistance, but as long as Gary is coherent and willing to go through the effort, I will gladly do that for him. Jury's still out on the bed rail. He is sleeping for a longer duration, but I can't let him wander around without me at night any longer. He's too disoriented and unsteady.

I have spent a good deal of time today thinking about and trying to find words of comfort to those other HW family members who have lost those they loved, too many as of late. It seems we lose our family members here in waves. As Teamchris notes in an email to me (and I hope she would not mind my sharing) that she has indeed lost the man who is her husband, even though his person is still surviving in a body that has betrayed him. I had that same thought a few days ago, when it was apparent that Gary was becoming more confused and was losing that quick witt and wag in his tail. He is no longer the man I recognize as the guy I married and have shared almost 25 years of my life. I am happy that I am here with him for almost every minute now, and that he has been cognizant enough to tell me that he has no regrets about the life he lived, and he often recounts many of his favorite memories of childhood. The present and what is happening now is becoming less and less important to him. I am comforted by those things. He is preparing for and accepting that the time to leave this earth is near. He even told me a very detailed and descriptive vision of the afterlife and the spiritual encounters he envisions and then the return to another existence on another level. He assures me that he "sees" others seeking their soulmates, and while we have not shared religious beliefs fully, he and I both feel we will find one another in the spirit world. Love is the most powerful magnet in the universe and beyond!!
Beth

Post Edited (celebrate life) : 7/14/2017 11:47:38 PM (GMT-6)

Just wishing you and your husband as much peace and comfort as is possible during difficult time.

From the book THE FAULT IN OUR STARS by author John Green, in a conversation between the main characters Augustus "Gus" and his girlfriend, Hazel Grace:

"We sat out there in silence for a minute and then Gus said, 'I wish we had that swing set sometimes.'

'The one from my backyard?'

'Yeah. My nostalgia is so extreme ...'

'Nostalgia IS a side effect of cancer,' I told him.

'Nah, nostalgia is a side effect of dying,' he answered.

Above us, the wind blew and the branching shadows rearranged themselves on our skin.

Gus squeezed my hand.

'It is a GOOD LIFE, Hazel Grace.' "

Dear Beth (& Kukukajoo),

I have been waiting to respond to both of you. I have been trying to find the words to say how amazing you are, how strong and loving. What incredible examples you are for those of us that will will surely follow in your footsteps sooner or later. Gary and Paul are truly blessed to have you in their lives, to be loved by you. And we have been blessed with the precious gift you have given us, allowing us to witness your extraordinary love. I wish there was something I could do to ease your pain. Our thoughts and prayers are with you all. Hugs from me to you- Suzanne

@ Suzanne,
Thank you for such sweet and heartfelt words! I'm not feeling very strong tonight. Gary is back to being restless and up and down all night long. I guess it wasn't the morphine. In addition, he is coughing incessantly, and the mucous in his bronchial never seems to fully clear. As Charles says, it's like caring for a newborn at times throughout the night. You wants to scream in frustration, but he can't help what he's experiencing right now. He did agree to raise his fentanyl patch from 12 to 25 mg.
@kukukajoo, Don't give up hope!! Zytiga was an amazing drug for Gary, and it may be a great tx for Paul, too. The prednisone might help his appetite and the dose is so small, that there will likely be few SEs. I have a suggestion for your hot flashes and inability to make decisions. It was Gary's MO that suggested it to me. It's a drug called venlafaxin. It didn't relieve my hot flashes totally, but it lessened them, and since it's also an antidepressant, it helps me deal so much with that "out of control and can't focus feeling". The other thing that helps me when I have a gargantuan amount of things on my "to do" list is to recall what Gary's step mom told me about how to eat an elephant. One bite at a time. I've attempted to "eat" many "elephants" over the years and the other thing I've found is that I don't like most of the meal and can leave a great deal "uneaten" and no one cares.
@Charles...I will do my best, but I fear my singing will cause more discomfort than otherwise!
Beth

Post Edited (celebrate life) : 7/15/2017 11:57:50 PM (GMT-6)

The thoughts about being coherent to the end, and about 'grieving started months ago...' are both so real. There is so much truth in these posts, it's amazing.

I think, for many of us who have or are dealing with the slow decline and extended final illness situations, that the grieving process is also extended and somehow muted. We can see the path, and we know the end point, but we don't know when. So, in a way, the acts of caring we wind up doing, whether they are sponge baths, or making their favorite soup, or searching out a rhubarb pie (that was one of the things my dad wanted) are all part of the grieving process. The return to helpless infancy--and dealing with the anger and frustration from our oh-so competent and active loved ones as they experience it and can't do a d*** thing about it is it also.

Then we see the dawning of acceptance in them, and the relaxation into waiting for the final steps, and that helps us also. We know they are as comfortable as we can make them, and we become a participant in the oldest tradition of humankind, the death watch. Even in our days of hospitals and bright lights, the same traditions that have always been there (are they imprinted in us?). The friends and loved ones gather around the deathbed, a holy man or woman comes to pronounce the blessings, the dying are told they can go in peace, all debts are paid, all scores settled. And then, we get on with the business of living. It's ok to take a break from living to deal with this, we all need it. Things get forgotten, the lists get ignored. It's just how it is.

Beth, I wish I had something more profound to say, but I'm thinking about you and Gary. Sending you hugs across the miles and wishing you both peace. Our thoughts and prayers are always with you. Sue

Beth,
It's been a few days and I'm hoping and praying that everything is okay. Hope you have been able to find some quiet time and the opportunity to rest when possible! I know how wearing that can be to not get a good night's sleep, but it seems when we feel we can't do it any longer, we get that little boost to carry on.
Just wanted you to know you've been on my mind!
Sue

We have a lot of experience with yellow spots both from our (intellectually disabled) son and four (sequential) dogs. Our go-to is Nature's Miracle, have someone pick you up a big container from any pet store, works great on sources human and otherwise, it's not stinky. I don't know about medicinally stained though.

It's been a comfort to us over the years 😀 Seriously, once you know you can clean up easily, that particular unpleasantness isn't quite so bad anymore.

There is something about adult pee on the feet though, especially in the middle of the night when you're trying to help somebody, that is genuinely indescribably..... indescribable. Perhaps we should form a secret society (The Order of the Midnight Micturatees).

You are a champion, get some sleep.

Love
-- Carolyn

Beth,
Nature's Miracle is a great product...sorry you need it. Dog sitting our grand dogs--a new puppy and and old timer, we're believers in the product. It amazes me that you can keep your sense of humor, but it helps to get through lots of situations. Know that we are holding you both close.
Beth

Halbert,

You got that wrong. Sodium bisulfite is a very mild reducer, it is not nearly as strong a reducing agent as sodium metabisulfite. It is actually the SO2 created in aqueous solution that does the reducing. Even better would be sodium dithionite, but it is not commonly available. It is the sulfur in the SO2 form that has the free electrons available for reduction. All of these sulfur compounds release SO2 in water - in fact sodium bisulfite is used for that very purpose in winemaking. You can easily see their relative reducing power if you look at their formulas:

Dithionite: -O2-S-S-O2-
Metabisulfite: -O2-S-S-O3-
Bisulfite: -S-O3H

Sodium metabisulfite is an FDA-approved food additive, used to retard spoilage because of its antioxidant properties.

Most common stain removers, like Borax, sodium tetraborate, peroxide, and chlorine bleach, are oxidizers, and are useless as a reducing agent. It's the opposite of what has to be achieved here. Azo dyes have delocalized nitrogen double bonds - those bonds must be reduced to be rendered colorless.