Her New Way

It is with both sadness and peace that we share with you that Nan has transitioned to her new way.  She was excited to "go home" to her "Father's Heavenly Home"

...and so she has, she has gone Home.  

Nan Elizabeth Stewart

December 2, 1940 - July 9, 2014

It was a bit of a whirlwind of a journey and adventure to getting there these past few weeks, here are a few highlights.

When she was first diagnosed, or at least it was strongly suspected mom was facing cancer, the three of us kids talked extensively and were able to come together as a family team for her.  We all talked openly with her, too, and we know she felt our support.  Frankly, I think there was a bit of reveling in the different kind of focused attention she got from all three of us too. :)

Her last couple of weeks have been the longest and most difficult, incredibly so.  But we as a family are glad that we were not only able to fulfill mom's bucket list wishes, but that we came together as a team and were also able to respect and fulfill her desire to die at home.  We had some tremendous support from her wonderful and cherished neighbor, Katie Sterling, who has been a friend and help to mom in countless ways over many years.  Mom's Pastor Brian from Spirit of Joy was of great comfort to her as well as her friends Mary, Lana and Bev who visited and prayed with her here at home...and those in her congregation who prayed with and for her all the time. We are each also grateful for our own friends and circles of support who have helped each of us move through this journey with her.  We are glad that we have been able to be there for her to the end...and now we, too, will be able to find our own peace and carry on in life with no regrets.

Her wish was to be cremated and to not have any formal funeral service, but she did wish for a simple celebration of life with her Spirit of Joy family.  That date will be determined later, likely in late August, but we'll let you know through the church and here on this blog.  We will receive her back and scatter her ashes in a couple of sentimental places she desired.

Thank you for following, reading and sharing your comments regarding this blog both here and on Facebook.  I did read all your comments to her when she was unable to read them herself.  She got a kick out of this thing and it has provided me a form of a journal through a difficult time.  There may be a few future posts, but until that time...may you all remember Nan fondly and/or wish her well in her New Way and her New Home.  Thank you & peace to you all.

Vigil

Not the human sort of yet, but all day by her constant companion, Jezebel.

That is all for today.

Choice and Dignity

Today.

Tomorrow.

Two days from now.

Two weeks from now.

Pain.

Discomfort.

Stress.

Humiliation.

Agitation.

Loss of autonomy.

Loss of control.

Loss of choice.

Loss of dignity.

Suffering is not noble.  

It is not courageous.  

It is not virtuous.  

It is not brave, gallant, gutsy or heroic.

Not for those who are the family caregivers of the dying, but most especially, 

Not for those who are dying.

Most of us choose to provide our pets a peaceful ending because we don't want to see them suffer. Why then, just why can't we as humans have the right to make the same decision for ourselves?

This entry is a different one than the others I've posted here before...it's a bit more hard-core real. This is a personal perspective on an experience many have had to live through, and now it's our family's turn. I'd like to share this with you to consider and think about. If you've not been in this kind of situation before, imagine yourself in our shoes...and the shoes of many others before us. Imagine...what kind of death would you want for your loved one. Or better yet, what would you want for yourself when you've been told and *know* you're going to die soon anyway?  

I know there are those of you that will disagree, primarily based on your religious beliefs. However, in my family, both my brother and sister agree with me whole-heartedly on this same thought and I know my mother would have wished to been offered a choice to make her own decision. In fact, she tried to make that decision for herself even when it wasn't offered. Unfortunately? She didn't succeed.

I do not believe and most emphatically concur that "any government or religious leader has the right to tell *me how long *I have to suffer." I am inserting *myself into this quote from Nancy Niedzielski from her husband Randy, who at the time living in Washington State and didn't have the choice. Before he died, he asked Nancy to help change that law. And as her last promise to him, she did.

Today, I watched How to Die in Oregon (Trailer), which beautifully presented the choice one could make to end their own lives when living was no longer bearable. When they knew they would be nothing but an emotional and financial burden upon others to care for them through the suffering that was to come. To offer the dying and their family and friends a positive and peaceful ending to cherish rather than the hell they would all have to endure otherwise. I would strongly encourage others to watch this amazingly personal and poignant documentary, available on Netflix.

The choices the subjects in the film were allowed to make for themselves is the same choice I wish my mother had available to her. For the past three days alone - and my sister and brother the two weeks before I - I have watched my mother's condition deteriorate rapidly. From our joking and teasing Wednesday afternoon when I arrived and she was happy to see me and craved a pastrami sandwich - to this morning when she cries in pain, is extremely agitated, doesn't want to be touched, wants no help with anything, demands water, and yells at me to shut up and leave her alone...all while I'm trying to assist with basic bodily functions, an action humiliating enough for her in and of itself. I really do know it's not mom saying all that, it's the disease...but you know what, it's still emotionally hard as hell to deal with sometimes. We've changed meds to try and help to more quickly alleviate the pain and help her sleep comfortably, and we will increase those with the pain reflected...because this the only palliative care we really have to offer at this point. We wish there had been another choice.

Death is a given...we will all die at some point.

However, because of various religious and political decisions that are all too often forced upon us regardless of our own personal beliefs, there is this taboo of talking openly about planning for death or about accepting that we might have any choice on how we would like to die with dignity. Therefore, there are only three states in this country that have Death with Dignity laws Oregon, Washington, and Vermont; and only 5 countries that have laws authorizing euthanasia or physician-assisted suicide Belgium, Netherlands, Luxembourg, Albania & Switzerland. This testimony by Michael H. White, JD to the California Assembly Committee on Aging and Long Term Care made in February 2013 speaks the truth and I would wholly support any effort in California...or nationwide...to authorize a Death with Dignity law. If you would like to learn more about these laws or how you might be able to make a difference, please visit Death with Dignity

I would like to again encourage you to watch that movie.  Try to walk in our shoes, in Nan's shoes. Offering her the ability to make a choice for herself would not impede on anyone else's life.
Choice and dignity...that's what we all deserve.

Counting Down

It's been a while since the last post...sorry about that.  Lots going on, of course...and I was kind of waiting to get down here to get a personal feeling for where things are instead of writing from a third person perspective.  The bottom line, frankly, is we're counting down the days.  The real trick to that is, how do you know what number to start with before being able to get to zero?

Margaret and Dale got mom home, connected with Hope Hospice, and with the generous help of a couple of friends, have been doing the bulk of the caregiving here for mom.  I arrived yesterday afternoon for a planned week of much needed respite for them, as well as my chance to help and be with mom.  My first hour here at the house was a bit keystone cop-like that included apparently locking myself out of the house (whew, back door was open!) in my attempt to get the social worker to and into the house. It all worked out, but certainly was a bit crazy!  She was happy to see me and have me here, as I knew she would be.  We had a good evening and some good talk before bed.

Mom's condition varies from day to day.  Life gets a little bit harder with each day...for her and us.  Here's how she spends a good part of it...when she lets the kitty sleep with her, which isn't always.  She was awake for the photo, obviously, but quickly went back to sleep...that was yesterday afternoon.

Today, fewer smiles.

Mom is ready and more than willing to move into her next "new way", but she is very frustrated that her body hasn't - nor have we - helped her get there with the speed with which she'd like.  Her vital signs still are all pretty strong and sometimes she's alert and can have a conversation with you.  Other times, she's very confused and can't remember much...and she is getting weaker.  Her legs don't always cooperate they way they should or the way she'd like...and today, we had a moment when they failed at an inopportune moment, *just* missing her being able to sit back down on her bed.  I was holding her, so it wasn't a fall...more like a melt.  Gratefully, the hospice nurse was due to be at the house within a half an hour so, I positioned her on the floor and made her comfortable there and waited for assistance.  With some coaching from Margaret and remembering the technique from the hospital, I got a sheet under her that would later allow the nurse's non-emergency requested assistance from a much stronger team of firefighters to just pick her up and put her back into bed.  The nurse assessed and assisted with other tasks and left mom with a nice hug.  It takes a special type of person to do be able to do this work and we appreciate their kindness.

To mom's friends...know that you're always welcome, but "successful" visiting is pretty much a bit of a hit and miss opportunity right now.  Please let me know if you are interested in visiting and we'll go from there.  I am here at the house full-time through next Tue and am scheduled to head back to the Bay Area on Wed morning.  So, until then, it would be easiest to contact me directly.  Many of you who read this are connect via Facebook in some way, so commenting or private messaging me would be the preferred option, then I can provide my phone number to give a call.  

Dying is a different and unique journey for each of us.  The end comes quick for some and slowly for others.  And we, both the experienced and inexperienced observers, can't always know what that looks like as we watch and wait.  Yes, there helpful booklets and other sources that describe the physical and emotional conditions and behaviors we may observe in the dying process.  However, knowing where one is in that collection of conditions isn't always easy for anyone to determine.

I have just been introduced to this poem by Henry Van Dyke that, as an avid sailor, I find I appreciate this imagery:

Gone From My Sight

I am standing upon the seashore.

A ship at my side spreads her white

sails to the morning breeze and starts

for the blue ocean. 

She is an object of beauty and strength. 

I stand and watch her until at length 

she hangs like a speck of white cloud 

just where the sea and sky come 

to mingle with each other.

Then, someone at my side says;

"There, she is gone!"

"Gone where?"

Gone from my sight. That is all. 

She is just as large in mast and hull 

and spar as she was when she left my side 

and she is just as able to bear her 

load of living freight to her destined port.

Her diminished size is in me, not in her.

And just at the moment when someone

at my side says, "There, she is gone!"

There are other eyes watching her coming,

and other voices ready to take up the glad

shout;

"Here she comes!"

And that is dying.

by Henry Van Dyke, a 19th Century clergyman, educator, poet, and religious writer

So, today the truth is that we don't yet know how close to that horizon mom has sailed, but she has definitely raised all of her sails and is working them all to the best of her ability.

Home & Hospice

So it's been a bit of a whirlwind week...and gosh, it's only Wednesday!

I last updated you with mom with mom having gone to the hospital via 911 on Monday.  I can now say that as of today, she is home and resting in bed...in the living room!

See this?  A wee bit of a grin from both her and her cat, or at least the picture of her cat I drew for her that's hanging over her head. ;)  The real Jezebel is around there somewhere, maybe still hiding a bit instead of laying in bed with mom (but that's not her bed!).  No doubt all of this has been a bit of a trauma for her as well, to be sure...but I'm sure she'll be up on the bed with mom soon enough.  We know our furry family have special 'powers' that can sense far more about us that we may realize, as I believe it is with Jezebel.  I believe her "new" lap cat behavior that started a few months ago indicated she knew mom was sick before mom knew herself.  Pretty amazing when you think about it.

Now, to recap...her trip to the ER did indeed include a pretty powerful infection in her tummy that was making her feel pretty darned horrible.  On top of that, it was such that her incision from the recent surgery was effected by the infection fluids, fluids that had to be better contained while reducing the infection and hopefully allow some actual healing.  Her couple of days in the hospital included mega doses of antibiotics and she left today feeling and looking a lot better than she went in...I mean, look, you can actually tell the difference between the sheets and mom's face! ;)

Before her discharge from the hospital, there were a couple of family conferences and other discussions.  One of those was with the representative from Hope Hospice.  With mom's participation and approval, she is now officially in hospice care and there will be no chemo.  That's where that fancy bed came from, part of the hospice service.  Hospice basically provides oversight and assistance with mom's medical needs.  Nurses will be available, meds attended to, assistance from a CNA for body care, etc, but they will not be staying to provide any daily living assistive needs...such as trips to the bathroom, food, laundry, etc.

The current hope is that with the infection gone, mom will recover some elements of her ability to do for herself, which she was pretty able to do prior to this latest event.  Allowing "helper" visits as much as possible versus 24/7 care giving.  Hospice assistance is covered by her insurance, care giving is not, so we are trying to plan as strategically as possible.  This will be the time when assistance from her community will be most helpful to us all.  I will be heading down next week for a few days around the 4th of July weekend.  I'll be able to provide some respite for my brother and sister who have quite ably managed this current transition.  We will also be making further assessments as to what kind of assistance we may need and reach out to those able to help us in a bit more organized fashion...so as I've previously mentioned, stay tuned!

Reflecting on this latest and Nan's New Way, I know there are many of you who read this blog who have dealt with similar struggles in your own family.  We know you can empathize with the effects and challenges that are forced upon all involved with this terrible disease that is cancer.  As mom has stated several times, she's not afraid to die because she has her faith, believes strongly and looks forward to returning to her Father's heavenly home.  The reality is we don't really know when that time will come...it won't be tomorrow, but then again, who knows?  Part of that is up to mom.  But until it does, whenever it does, what we hope for is that mom's time in pain is as little as possible and she runs enthusiastically toward the light when it shines down upon her.

Change of Focus

Over the last month - as you've seen on this blog - our family has put a priority on focusing on helping mom realize some good family times, grandson's graduation, and the recent trek & adventures to Mount Rushmore and home.  From this time forward, the family time will be focused differently.

With some help from friends, she was able to make it to church yesterday, something I know is very important to her.  But the difficulty of today included her having to be transported to the hospital via a 911 call.  She was having some extreme difficulty with her ability to get up out of bed and her internal GI systems having minds of their own right now and not behaving normally.  Between my brother and sister and myself, we all had various phone calls including ones with mom, mom's doctors, mom's neighbor and numerous texts amongst the three of us confirming the necessity for 911 and hospitalization.

Both Margaret and Dale were with her at the hospital today, and at this moment, Margaret is still in ER with mom at Loma Linda Hospital in Murrieta awaiting an admitting bed...it's been busy there...hopefully just as a hold before getting her near her surgeon up in Loma Linda Hospital in Loma Linda as soon as possible.  Dale headed to the house to help take care and prepare for her return, along with some wonderful help from mom's great neighbor Katie who has "been there" for mom in so many different ways for many years.

There are still some conversations to be had between the doctors with regards to diagnosis, treatment details or processes moving forward.  However, the preliminary information regarding her struggle at this point looks like it might be an abscess, an internal infection causing the current problems, but not sure yet.  Also don't know if related to her recent surgery, advancing cancer or what the cause is exactly.  However, her white blood cell count is quite low and the hospital has her on strong antibiotics and pain medication.

We were already prepared to start work today toward getting some home health care for her sooner than later, but this situation certainly expedited and increased the attention needed.  Getting mom admitted right now is a big relief for her...and us, frankly...assuring she'll get better and professional care at this moment.  It also will hopefully allow us some more time and medical assistance to arrange whatever comes next.  All this is happening even before her scheduled initiation of chemo treatment on June 30.  Of course, all of this could have an impact on the decision to begin chemo...delayed? when? or if?

Now, here's where the "community of mom" comes in.

With these more challenging times - which will continue - your continued positive thoughts and prayers for strength, comfort, and peace for Nan and all of her caregivers will remain welcomed and most appreciated.  However, both of my siblings are firefighters and have 24-hour shifts for work and I live and work up here in the San Francisco Bay Area.  It's important for us all to continue to be able to work to our maximum ability, which will help us to continue to be able to provide what time and resources we can for mom's care.  That also means we cannot be by mom's side 100% of the time.

So there will be a time in the near future that the call for direct assistance will be at hand for those who are closer and able.  What that might be, we're not quite sure yet - maybe rides to doctor appointments, visits at home - but once we have a better idea out of this immediate crisis, we'll be letting you know. Pastor Brian is visiting mom tonight, we appreciate his time.  I know the Spirit of Joy community loves my mom and will do what they can...and we as a family welcome and are most appreciative of the assistance. Please stay tuned, we'll update you with more as we have the information.

Mount Rushmore Realized!

See that smile...and all the others?  "It was all worth it", she said.

So the adventure to Mount Rushmore achieved it's primary goal, she got to see some beautiful American countryside previously unseen, and she got to check her bucket list desire of seeing Mount Rushmore in person.  It has certainly been no easy achievement to be sure, with stories beyond the blog, but hats off to Margaret for organizing and making it happen!

Here are a couple of shots of the getting started parts.  Driving to the RV and getting settled and ready to go...with Margaret's pups, of course!

Here are some shots from the road somewhere in Utah, I think.

This was the view from the road greeting them into Wyoming, on the back side of some big storms!

And a pretty shot of the "other" travelers on the road! :)

Then this morning was breakfast in Custer and onto Mount Rushmore National Memorial.

This will be as far as mom goes on the road trip as they are heading to the airport right now to have mom fly home tonight.  Unfortunately, the road was a bit tougher for her than anticipated and the mountain elevations and sitting for long drives didn't help the edema in her legs.  She really would be pushing it too hard to continue on for another 4 days and jeopardizing the need for medical care too far from home.  So the wiser alternative was to get her back home sooner than later.  But, the important thing was...mission accomplished...and she's got her hat - and some memories - to take home!

Margaret will continue on with the RV and some dog training that was scheduled in Salt Lake City before she gets home on Monday.  My brother, Dale, will be picking mom up from San Diego airport tonight and spending the night with her to make sure she's settled back home okay...and we'll all breathe a sigh of relief at that.  We've talked with Pastor Brian asking for some assistance in check ins over the weekend as well. We as a family will regroup next week and figure out what's next in Nan's New Way...and ours. :)