End of life journey

June 25: Today was shower day again. In a very short time Gary has become quite weak. It is an effort to push himself from prone to sitting and it appears he will soon be too weak to get to a standing position from sitting without help. He can no longer undress himself or stand long enough to shower. He was able to sit on the shower chair and wash his hair and body himself. I convinced him to allow me to wheel him from the bathroom to his recliner after the shower.

I have noticed that his stomach seems more distended, and it has a mottled purple colored patch. His entire arms, wrists and hands are purple with bruising. He has tic/twitch in his leg and eye constantly now and he also coughs mucous a lot, even on mucinex twice daily.
If I had to venture a guess at what scans would show, I would say
Gary has new mets in his lung and brain and additional liver involvement. We will never know and that's okay. It would do no good to know. His PSA has risen from under 1000 to 1500 since last test.

He is still able to eat a couple of very small meals and drinks plenty of herbal ice tea throughout the day and evening.
I believe hospice will be back to pay us a visit this week. For now I hope to utilize them to just be at our house with Gary while I get my shopping done and go work out. So far Gary has not had much pain or nausea.
Beth

Hello Beth. Thanks again for your intimate update. That's a really good idea to use the next hospice visit as a respite time to get out of the house for some shopping, exercise, etc. Get some sun. Breathe the air. Maybe walk by the river, the ocean, or some redwoods.

The hospice folks have probably already given you some information about common bodily signs that appear as death is nearing. Mottled skin is one of them, as general circulation slows down.
Here's one of many similar links that describes other things that might develop:

jameslau88.com/symptoms_at_the_end_of_life.htm

Do you think Gary is nearing the day when he essentially stops eating, and, perhaps very shortly afterwards, you will stop trying to actively give him fluids by mouth, and will transition to keeping him comfortable using mouth swabs and ice chips, instead?

It might help to talk about that specific subject with the hospice folks next time you see them, ... and then talk about it some more,... as much as you may need to do so, ... and as often as you may need to do so, ... until you come to a sense of knowing acceptance of what you will do when that time comes, and who you want to perhaps be prepared to assist you in calling for anybody else you wish to be with or near you and Gary in the days afterward.

Meanwhile, Gary's body and spirit will give the best answers, of how long to stay, and when to go.
Living beyond the death of loved ones, and eventually dying, ourselves, are all part of the Human Experience. THANK YOU, Beth, for your compassion and the sharing of your experiences.

Charles

Thinking about you and Gary all day today.

Hospice gave a small booklet to my mom when they came to care for my dad and everything happened so quickly I didn't even get to read it until after he was gone. It was full of so much info I wished I'd known beforehand. I am so glad that they are available for you. I am sure they will be a big help.

Thank you once again for your posts. They are and will be a great help to all who follow down the same path.

Be sure to get some rest. Remember that so many of the things we think we need to get done can wait until later!

Sue

Beth,

As things progress, I'd encourage you to look into having an aide in the house, at least overnight soon. He will need someone to be up through the night with him and give you a chance to sleep. Having just been through this a few weeks ago with my mother, it's all very fresh for me.

Good for you for leaving long enough to take care of your physical needs.

Keep it up, don't be afraid to feel what you need to feel.

Dearest Gary and Beth. I continue to follow this Journey although it mostly breaks my heart. My thoughts and prayers will continue to be with both of you. I realize the death is part of life and I know the time will come for us all. I am not ready to lose another Warrior. I'm not ready to lose another friend. I am inspired by Your grace. I wish I had met Gary. Blessing to you both.... tears. Todd

Beth, I know there is nothing I can say that will make things easier for you, but ironically, you are providing many of us here with great comfort.

I am not yet anywhere near Gary's situation, but one day I will be and you have made me realise that when that time comes I am lucky enough to have my own Beth - my lovely wife Carole, who like you is a wonderful loving and caring person. I know Carole will be willing to clean me up if needed and having been a nurse in the past will do so with love and compassion. Thank you for making me realise that.

I am also a very strong believer in dying with dignity, but regrettably that is not a legal option in Australia, but we may work around that.

I really hope that Gary remains comfortable and peaceful and bless you for the wonderful care you are providing.

Thinking of you

Chas

Beth,

You're doing great. I think I understand where Gary is coming from on the dignity question. I look at it as posing the question, is there a difference between giving up and surrendering to the inevitable? I think back to my Dad, in 2004, when he died from advanced PC (spinal mets). Right after diagnosis, he said he really wanted a piece of rhubarb pie. And we ran all over town trying to find it for him (with success). He was able to take broth right up to the end, but just a spoonful or two.

Is he still able to get up and move around on his own, with support?

I do think, also, about the phrase 'death with dignity'--and I think it's about much more than the ability to wipe oneself. It's about choosing how we do it. At home surrounded by family and friends (and a few loving volunteers or paid aides) is way better than plugged into a bunch of machines in a hospital room or alone in a nursing home.

Beth, there is so much more I'd like to say..but it would veer into the personal for me, and this thread is about you, and your needs. Keep us posted.

Hi Beth and Gary! I hope your tail is still wagging. I've actually looked into death with dignity for myself for the future if my autoimmune stuff gets real bad. Having a friend bedridden and paralyzed at 50 is a possible reality for me. Interestingly Paul is not for that and still a full code. I think his strict Catholic upbringing is responsible. I respect whatever he wants but dread he's going to make me be responsible for some very hard choices in the future. I may not think it fair but will do whatever he wants.

There are rolling machines you know. And bowls. Want me to send you one? A pretty blue one of the same color as the pca ribbon? Those rolling machines are great too.

I'll post another thread to update on Paul as to not hijack this thread. He got to visit with an old friend from NH today who was here on business so pretty happy. He's not had much contact with people at all since we moved here and was diagnosed right after.

I think I may be in your shoes sooner rather than later.

School is good taking an easy class I need to graduate to fulfill a religion course... women of the bible. It's super easy compared to the other classes I've been taking and interesting. Work is good but some drama lately that I hope is over soon. I don't need more stress.

This weekend we may go to a place that makes moonshine to get out of the house.

Happy 4th!

Sending love your way as always.

Beth, You and Gary are constantly in my thoughts. Sending you love and peace. Sue and John

Wanted to bring this back to the top so it doesn't get lost.

Just wanted you to know I'm thinking about and praying for you guys!

Sue

July 3: Yesterday I was going back through some of Rockyford's journey, and was really struck by one about courage. I think Gary and I may be the profile for the tin man and the lion making our way down the yellow brick road. I'm trying to keep my RA flares and squeaky joints under control, while Gary keeps finding the courage to live another day and make the most out of whatever he is handed for stamina to get through the day.
I will give a forewarning about full disclosure on this post. I thought about not sharing some details, but I want those with liver mets to know what may happen. It seems that Gary has been able to survive with a lot of liver involvement for quite awhile longer than others we've sadly lost here, so his experience may be abnormal. I

I'll begin with what has been positive this week. Appetite. That's always a good thing for me because I like to bake and usually get stuck eating what I make. And I have gained weight as a result. Also his stamina has been much better and he has been able to visit with family and friends from his recliner for the entire day and into the evenings sometimes. He's lost interest in watching tv. That's not necessarily a bad thing. He has wanted to spend more time just talking to me and living in the moment when no one else is around. I don't want to leave him alone due to his unsteadiness, so I'm almost always with him. He also wants to be with the grandkids more. He has not been opposed to using his walker to get to and from the shower, but so far he gets up to pee, but he needs to way more often than he'd like.
That is the lead in to the tough stuff this week.

It hurts him pee at the very tip of his penis, although there is no visible reason why, and the remedies suggested don't seem to help. He has also been very short of breath and sounds pretty raspy when he coughs, with congestion in the bronchial. For past two nights he has gotten up and was having difficulty getting in air. I borrowed my grandson 's asthma nebulizer and gave him a breathing treatment tonight that seems to be helping with that.
The more distressing symptom is the accumulation of fluid everywhere it seems. Gary has a standing order with radiology to have ascites fluid drained (paracentisis), but having to subject oneself to a needle into the abdominal cavity takes a whole lot of that courage. He once passed out while in a sitting position for the procedure, convulsed and vomited heavily when he finally "came to". Since then he's had it done lying down twice more, but he's in no hurry to go again. The fluid not only has accumulated in his abdomen (also making breathing difficult), but has made its way to his groin, scrotum (like a water ballon!) penile skin, legs and feet. We know from experience that once the abdomen is drained the rest will eventually dissipate.

Last night, to add to our anxiety, our son called to say our oldest granddaughter, Isabella, had suffered a seizure and was in the ER. She is visiting her Dad three hours away from us, so we had to just wait for test results to come in throughout the night and today. Fortunately, all blood work and scans were normal, so we pray it won't happen again.

This coming weekend sister Donna is going to come and give me some respite. My friend, her daughter, my granddaughter, and I are going to a baseball game and six flags. Perhaps I'm just trading one roller coaster for another.

Post Edited (celebrate life) : 7/3/2017 11:16:02 PM (GMT-6)

Oh Beth-
You are so strong. You are love in action and presence. Gary is special, as are you.. You guys give me comfort and faith that the special will be there regardless. What you share I carry with me. I will recall your story when I need strength down the road.

Thank you so much.
Rf