End of life journey

Sue,

We are only allowed two "stickies", and try to use those for quick initial information.

You can save the link to this thread in your browser to pick it up more quickly. This will pick up at this page, but remember that I will have to close this and open a new one lest it disappear.

www.healingwell.com/community/default.aspx?f=35&m=3854899&p=9

Dear Beth,

Like so many others, I worry when we don't hear from you. It's just like you to be concerned about the "newbies" at this most difficult time for you. I have to say thank you for the laughs - I don't know which was funnier, the "macaroni salad" or the candy- striper story. Even though you didn't choose nursing as a profession, don't fool yourself - we know you are an angel here on earth. This blasted disease and treatment steals the loves of our lives piece by piece. Our friends and family really can't understand the changes that we wives experience on a daily basis. It doesn't make me feel better to know that so many others are going through the same feelings because heaven knows, i wouldn't wish this on anyone. I hope you know that your sharing of this experience gives us guidance and a feeling of empowerment that we will somehow get through. Thank you Beth. I hope you will have a peaceful night - sending hugs from me to you - Suzanne

@ Christine...thank you so much for your kind words and for posting!! I was surprised to see you, when I was expecting a post from John. Now get outta here! You're on the right track sweetheart. There are far too many other wonderful ways to occupy your thoughts and time to spend more than a few fleeting moments on PCa right now. John is getting good results from tx and you've both got a life to live and cherish. Go do it to it darlin'.
@ Angie...my heart goes out to you. It is so unfair that your DH is so young and has not been responding to tx. I pray the clinical trial is the magic bullet. When we ran out of absolutely everything to try, our MO went to mitoxantrone. It's been put on the shelf long ago, but it worked well for Gary for about a year against all odds.

July 25: Just because I have been going through the most hellish nightmare I could ever imagine right now doesn't preclude other stressful things from occurring. I'm awake because my daughter just called me to say Isabella had another seizure and her motor skills and language was slow to recover. Having had two now, it looks like she will need epilepsy meds. I didn't let her know her kitten that she got for her birthday seems to be getting sick and I'm keeping an eye on it too. A trip to the veterinarian is not on my agenda tomorrow.
On the subject of granddaughter and dealing with death, I decided over the weekend it was time for her to no longer be witness to this. So I told her that until her P-paw passes away she needed to be at the babysitter when her mom was working nights. "Why???" She demanded. I told her that I wanted her lasting memories of her grandpa to be of the wonderful and happy days we shared, not of this sickness and suffering. I also told her that death for many comes more easily and with less pain. So she tells me that she hopes when she dies that it's easy, and that she wants to be with us when her Mom is working. She assures me that she is perfectly capable of remembering the times when P-paw was strong and the good times we shared (with examples), and besides, she can still sit next to him in the recliner, even if he doesn't know she is there and he isn't making sense. Children are amazingly resilient. More than we realize, I think. Makes me wonder if we don't lose our coping mechanisms as we age, rather than develop them. This sensible child is going to be the reason I will survive the death of my soul mate.

I talked to home health nurse again today about getting a hospital bed. It's just not as easy as I thought it would be in our small town. But they are doing their best. Meanwhile, I picked up a large pillow with "arms" like a chair to prop Gary up in bed to drink water and take meds, or if he wakes up enough tomorrow to sit up for a bit. My mail order bed rail is not that sturdy either, and he does seem to work his way off the side.
Hollywood's depiction of a pretty person sleeping peacefully in their final days is bull pucky. Even with opiates and anti anxiety meds given regularly, Gary is fitful, vocal and, I think, uncomfortable.
I hope he does not have to endure this state very much longer.

There are a couple of Garyisms running through my brain today.
First, and said rather recently: "It takes a lot to kill a person. The body was built to survive."
Second, (heard this one many times) " When it's your time to go, don't leave a pretty corpse". PCa has definitely helped him achieve that goal.
And last, his favorite line delivered by Jack Nicholson in the movie The Bucket List: "Some lucky guy is having a heart attack right now."

I wish he'd been that lucky and didn't have to go through this.
Beth

From the Pulitzer Prize winning book ... CANCER: THE EMPEROR OF ALL MALADIES by author Siddhartha Mukherjee:

"In Lewis Carroll's THROUGH THE LOOKING GLASS, the Red Queen tells Alice that the world keeps shifting so quickly under her feet that she has to keep running just to keep her position.

This is our predicament with cancer: we are forced to KEEP RUNNING merely to keep still."

Hello Beth

I wish you didn't have to go through all this too.

Remember to breathe in the middle of all the chaos. And that things will change (and not always for the worse, though that's what you're living through).

The kitten is sick?!? You know, if this were a play, the author would be accused of laying it on too thick. Honestly. But somehow this is the way things are.

If having Isabella there gives you strength, great and wonderful. But don't let her talk you into anything. If a significant part of your stress is from worrying about taking care of her, then don't hesitate to kick her out. You should be brutal about protecting yourself at this time. Whatever that means to you.

And just possibly there is somebody else who can take care of that kitten for you......

Beth, I can do little more than offer my greatest respect and long distance love and hope that these final few days, or hours, continue as peacefully as they are now. It is great to know that Gary is in a peaceful frame of mind.

I am sure that at the end you will be both heartbroken and relieved. Obviously heartbroken at the loss of your great love, but also releived to know that Gary is beyond suffering and you are released from the burden of watching all this happen.

With tears in my eyes, I wish you peace and love.

Chas

Beth, Good on you for standing firm with the visitors. This is something that none of us are taught: that visits to critically ill people need to be SHORT--10-15 minutes at most. It's good that he had an amazing good and clear day. Cherish it.

We're standing with you in these last days.

Beth,
Your description of what is going on with Gary sounds so much like what happened with my dad. Maybe it is common, but I was so close with my dad that I saw it for the first time(?) He had about a week of the same thing, not being present with us at all, then all of a sudden, he had a day where he was clear as a bell, and then he slipped away from us again. His last 4 days he went between being totally present one day, gone the next, then back again. The day before he passed away, he knew us all and was very talkative. Death is an amazing journey!
I've recently read where you should only give fluids if the person can absolutely swallow, so when I look back at how we tried to force my dad to eat and drink, we were doing him a disservice as he could have choked. I had never thought about that aspect. I know you are being a great nurse and isn't it wonderful to have such great hospice people! They are amazing angels, aren't they? So much knowledge and support!
I hope you have a day with little stress!
As always, you are both in my thoughts and prayers.
Sue

He is loved by you and many others.

You are a strong and loving woman to support your husband so, and also think to include all of us in this journey. I'm moved to tears and read every post. So much respect for you. Peace.

@Kukukajoo...what a frustrating and hard week! I'm sure am glad you and Paul have a little vacation coming up. You both need a GFMPH!!
I think it's inevitable that our guys will experience feelings of defeat and hopelessness at times, especially when the PSA and scans are showing progression. I do hope and pray that the Zytiga or another therapy can show a significant reduction in tumor growth to bring back Paul's optimism and hope for a measure of life beyond mere months.
It doesn't help that all the trial results show life extension in a measure of months too. But I do think that there is a very good chance that Paul could continue to live a quality life for possibly years with treatments he hasn't had as of yet.
As far as your being prepared for this journey goes, I can honestly say that all my life's experiences has not prepared me for what I've been going through this month, and I honestly don't think you can be "steeled" to face it. I have just taken it as it's come and done what I think is best and relied on hospice and home health advice (and my HW family, of course). I don't have a huge support system friend wise, but I have had Gary's sister here a lot, so I think it's not a bad idea to begin to think about someone to lean on. Aside from hospice, I have one very close and long time friend that I long ago asked permission for her shoulder to cry, knowing she would be able to do that and not be bogged down herself by my sadness. I have had to try to keep other acquaintances and Gary's friends at arms length since his decline from actively able to converse, because I want my focus to be on Gary and his comfort right now. I've also had to learn to ignore the phone too. I had a similar experience with a friend of Gary's offering (more like pushing) unsolicited advice for how I should be caring for Gary, and so I've had to be protective of myself right now too.
Gary is finally in a hospital bed. It arrived yesterday afternoon. My son and I transferred him into it, and although it was just moving him over a foot or so, he cried out quite a bit at being moved around and has been moaning pretty much nonstop since we moved him. I increased the opiates quite a bit and he told me he wasn't in pain, so maybe he's pissed off that he isn't in our bed with me. I've got our bed pushed right next to his, though.
The fluid in his cath had has decreased significantly, so maybe it's like Sue's dad, and he is slipping away after a short rally.
Be well this weekend!
Beth

Post Edited (celebrate life) : 7/29/2017 9:59:50 AM (GMT-6)

Prayers for comfort & peace.