End of life journey

May 29th: Today was another good day, with Gary up, eating and engaged. He even invited a friend over to visit. Yesterday he slept all day, and I finally spoon fed him a few bites of dinner just to get some calories and night meds in him. So unpredictable!
Tomorrow we meet with hospice for first visit and Gary gets a blood draw. He sees the MO on Wed. I wonder if this will be the last visit with the Dr that Gary trusts and respects, and the guy I have fostered a love/hate relationship. I love it that he has kept Gary alive for longer than any of us could have imagined. I hate it that he is often arrogant and condescending to me, and he really hates it that I do research on my own. He takes it kinda personally. But we've learned to respect one another, we've shared a lot of laughs and jokes along the way, and if all else fails, we communicate through his PA. Joe. He's the guy with the always sunny disposition and good bedside manner. We've developed relationships with hospital and office staff, and even keep in touch with staff that have moved on to other jobs or retired. Our town is small. We see each other in the supermarket. The man I will call upon in Gary's final day on earth to take him from our home to his final resting place has a boy that attends my after school program. We are often entertwined here in our coastal community.
A couple of years back Gary and I picked out an hourglass that will house his ashes and eventually mine as well. It is the kind normally used for mixing sand in a wedding ceremony. We decided to mix ashes in a ceremony for eternal life. In fact, the inscription reads "we travel together through the eternities" That's a loose quote from Robert DuVall in "Broken Trails", one of Gary's favourite movies and one he's watched at least ten times that I'm aware of. Granddaughter, Isabella, will eventually take us to our final resting place and scatter a bit of us in the Sangre de Cristo mountains of Colorado where we honeymooned at a high mountain lake and trout fished over twenty years ago. We were married in a barn, by the way, but that's a whole nother story.
That's all I can write this evening about the inevitability of where this is going. There are days of this life left to live, and I refuse to squander many moments dwelling on where this will end.
Beth

Post Edited (celebrate life) : 5/30/2017 12:34:24 AM (GMT-6)

My thoughts and prayers are with you.

Though my PCA journey seems behind me now, I instead get angry or frustrated at life's more common issues (work, kids, whatever). Reading this thread just flung me back into reality of what's truly important in life.

-Gedman

"I refuse to squander many moments dwelling on where this will end".
Beth

Beth,
You are so right. Make each moment count.

I applaud you for your courage.

Mr. Bill

Beth

Just wanted to say thank you for your bravery and courage. Hoping today is a good day for you all xxxx

Beth, thank you for sharing your journal with us. How wonderful that you have this support from Hospice. Having good people in your lives does make the journey a bit easier.

A couple of years back Gary and I picked out an hourglass that will house his ashes and eventually mine as well.

Is this hourglass something we can buy on line or at a certain store? Such a nice plan.

I wish you the best and hope Gary keeps his sense of humor. My brother passed on in 2014. He was in Hospice at the hospital. The nurses were so surprised to hear laughter from his room as he was telling stories from his life. What a blessing to have your lovely Granddaughters. Prayers for you and Gary as you complete this journey together.

@Aimzee: Yes, we ordered it on line. We originally planned to have a local glass blower do it, but it never came together. You have to Google search wedding hourglass. They are kinda spendy.

I started a new thread about Keytruda tx for Gary that we are currently holding our breath regarding diagnostics and approval. I will post most updates there for a couple of weeks unless Gary's condition deteriorates rapidly or if he is denied that tx sooner. Thoughts and prayers very much appreciated and returned to my brothers and sisters here, as well.
Beth

Beth -

When I was a soldier in Vietnam ages ago, I could always tell who the really brave guys around me were. They were the ones who always had some kind of joke or wisecrack ready, and said it, when the situation was getting pretty dire.

"She asks Gary what he knows about hospice. He replies "Not much, but I hear people are dying to get into it."

"The nurses were so surprised to hear laughter from his room as he was telling stories from his life."

The mark of a truly courageous man! Literally laughing in the face of what may come!

And I rather suspect that his courage is wonderfully bolstered by the splendid support that you give him!

Some say we tell jokes just to mask fear. Well, it still takes courage just to do that!

And for a genuinely deep thought, as Gary has noticed:

/www.youtube.com/watch?v=0nC_3kJGURQ

Dear Beth,

You don't know me, but in a way, I know you. Six years ago my dearly beloved wife of 41 years died. You will never be the same, but you are strong and you will thrive. You will. In fact, you will find happiness. It won't be the same, but it will be there.

Many thanks for the hospice information. It is really important. I have taken classes about it and convinced my daughter that it's what I want when it's my time.

I admire your love for your husband and your courage.

Bill

Beth,

Selling the Big Red hog motorcycle is a really huge, symbolic thing in your lives. So many memories of who Gary and you were on that bike in the years before. And to finally feel that sense of LOSS of his physical capabilities to do something so central to his sense of freedom and fun. That's really tough.

Cherish those memories of the open road and the wind in your faces.

Charles

Beth –

Jetguy said:

"… Six years ago my dearly beloved wife of 41 years died. You will never be the same, but you are strong and you will thrive. You will. In fact, you will find happiness. It won't be the same, but it will be there."

Speaking as a widower myself who lost his own dear, dear wife of thirty-nine years about six years ago, I can say that jetguy nailed it. At that time, when my own wife died, a whole lot of people offered verbal condolences to me. Many just said the "right" things ("I'm so sorry for your loss" etc.) but many did indeed seem sincere in expressing their thoughts. But of all that was said to me then, the one I remember most is the condolence that my pastor said to me:

You never get over it but it does get better.

Such a simple sentiment. And it may not even seem possible at this point, but it's true. Trust me, it is.

Also, if I may, we had a thread a while back that I started that was about dealing with the early days of living following the passing of one's spouse. It seemed to get a good response and generated a good discussion, and I would like to offer it now for whatever it's worth:

"Some advice for future widows and widowers: when the time comes"
www.healingwell.com/community/default.aspx?f=35&m=3487901

(I do invite you to take a look at it, Beth. In the several years I have been posting here, I think it is one of my better contributions to the forum. And it certainly did come from my heart, I can tell you that).

In any case, please accept my heartfelt thoughts and prayers for you and Gary at this time, and the deep hope that, when the time comes, the memories you will have of the years you had with Gary will be cherished ones indeed.

keep moving on...tho memories have as much substance and evidence as the flesh...more so...but fleshed out a bit different for better communication...yesterday...today...tommorow... much like
Gary know this...at this point...knows it very well...which is why he can watch the same movie...it oportunes many a new view point every time.... EDIT...{tho Im sure he has always seen the dimensions of dimensional shifts}
We all do but fear our own spirituality... more than our own mortality...


I also do that...Grease is on my hospice list...if I am afforded that privledge....

Please lord{nudge nudge wink wink} don't throw me in the briar patch....and brer fox...he laid low

Off to the gym to get this body in shape again...good lawd...Now I know why hernia repair...lidat...can be more difficult a recovery than prostate surgery...Of course 66 and 74 do make difference...I I would rather not admit to...

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

"Part of the cruelty of cancer, though, is not only that it limits your TIME; it also limits your energy, vastly reducing the amount you can squeeze into a day.

It is a tired hare who now races.

And even if I had the energy, I prefer a more tortoiselike approach.

I plod.

I ponder.

Some days, I simply PERSIST."