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Palliative is not a state of being...

Lately, I feel like the grim reaper with death and dying being a prominent feature of many of my conversations online and off. When you are caring for someone who is sick or has a life limiting, life threatening illness death definitely pokes its head in your window. And being part of a palliative hospice death basically sits on your stoop waiting to come in.

What I am learning is that death is not linear. It doesn’t start at one spot and end at another. I guess some people would argue it begins at birth and ends at our last breathe. But when you have a life limiting illness or a diagnosis that is life threatening, like Duchennes Muscular Dystropy, AIDS, certain stages of cancer, or like in my daughter’s case, a rare complex disease, the process of ‘dying’ doesn’t seem to follow any one course. I’d even argue there is no discernible beginning and end.

I bring this up because the last few weeks I have been traversing a slippery slope with Sophia. Her disease process, as complex as it is, seems to have become even more complex. Sophia is suffering from pain, severe pain and while the amazing professionals in our life bind their knowledge and experiences, sophia and I have to traverse lightly through her suffering on a different level. As a mom, I grapple with questions like, “what stage are we at?”, “where is this leading?”, thinking that those answers will ensure the best possible care and support is in place for Sophia medically and physically, spiritually.

The thing is, no one can know the answers. Sophia is in extreme pain and we have been trying a few different techniques and medications to help her. I had the expectations that if we find the right cocktail she would perk up and we would regain a sense of our live moving.

The word ‘palliative’ began its rounds at the same time we had to put Sophia on a drug called Nozinan. Both grabbed me by the ankles like a vice and I couldn’t move.

Palliative…when I hear palliative I think of end of life. I think, here we go, call everyone, death is imminent. Up until now, that has been my experience with palliative. When. Y dad was palliative, he died shortly there after.

So when the word palliative started showing up in conversations regarding Sophia I was knocked into shock. Sophia’s not palliative, she couldn’t be. Sophia still has moments where she can go swimming, or we take her out for sushi. She giggles and there are times when she still belts out those teen karaoke songs! Sophia can’t possibly 'be’ palliative!!

But one of our Advance Nurse Practitioners began to explain that those who are 'dying’, for lack of a better word, start to instinctively make their world smaller. Sophia stopped going to school a while ago, she is reluctant to leave the house, some days even her bed. She stopped eating food or wanting to eat. Sophia began to withdraw and tuck into herself physically, emotionally and probably spiritually.

Her world has indeed become small…and the only way we have been able to ebb her pain and suffering is to put her on this medication, Nozinan, and have her fall into a deep sleep. I can’t breathe.

In true mom therapeutic form, I started doing research on the word 'palliative’ and began to have open discussions on what this word meant for other people. Most were like me, the word palliative evoked strong feelings around death and dying and the sense of imminence.

The Canadian Hospice Palliative Care Association just celebrated National Hospice Palliative Care Week. CHPCA’s definition of palliative “aims to relieve suffering and improve quality of living and dying.” Wikipedia indicates palliative is a “multi disciplinary approach to specialized medical care for people with serious illnesses.” The origin of the word itself is “under cloak, covert”, “relieving or soothing the symptoms of a disease or disorder without effecting a cure.”

As I wondered aimlessly around the World Wide Web defining palliative it struck me that the word didn’t stand alone. Palliative is always complemented with the word 'care’. And when I had a heart to heart with our own hospice counsellor, she looked at me and softly said, “Bev, you’ve been providing Sophia palliative care for quite some time. Palliative is not a diagnosis, it is a model of compassionate care.”

Palliative is not a state of being…it is a model of compassionate care. In living grief I’m learning to accept that care happens to include supporting Sophia’s rest, her choice not to eat, her desire to hunker down in her room, all comfy under the covers and to use medication like Nozinan to help abate her suffering.

It isn’t easy, palliative is never easy. But our goal is to ease Sophia’s suffering on her journey..

Living Grief is like a burpee, you have to get back up...eventually

Lately, I seem to be experiencing a myriad of grief…some in its most traditional sense, others within relationships and the most surprising, in expectations.

I got the call eight weeks ago now, from my sister, that our mum had been taken to emergency and that her death was imminent. I jumped in the car without hesitation and drove the twenty minutes to the hospital.

She had passed moments before I got there. I immediately asked to see her. I hadn’t seen my mum in close to eight years…our reunion was at her bedside with barely a hint of life left in her. She looked peaceful, she looked like our grandma.

I was comforted being with my mum even in her death. I cried for her; I wished her peace, I wished her joy and I wished her resolve on her next journey full of love and light.

Being with dying definitely seems to be my theme. And I’m surrounded with a sense of grief daily.

But my Mum’s passing, in many ways, was a letting go for me. You see, she was the black sheep in our family and growing up, it went without saying we were the offspring of the black sheep at every family gathering, wedding, funeral, occasion. Looking back, it was uncomfortable, we were made to feel terribly uncomfortable. I’m not sure to this day if anyone in our extended family really understood the impact on all of us.

I turn 45 in five weeks…ugh, 45. Both my parents have passed and psychologically I, apparently, now have my ‘death age’. My dad passed at 83, my mum short of 87. So my death age could conceivably be between 83-87 years of age.

I’m half way…

Grief facilitates an opportunity to reset. I’ve recently attempted to do the WholeLife Fitness Manifesto with dai @daimanuel #WLFM and failed miserably. Dai compared resetting to a burpee…you get down and get yourself back up, over and over again. Well, shit, I hate burpees at the best of times! But I get it. It’s ok to reset, we are going to have a life full of burpees…

The past three years have been a challenge. I have gotten smacked down relentlessly and there were moments where I lay on the mat soaked in my own sweat feeling like I couldn’t possibly get up for one more burpee.

My expectations of my best friend, my relationship, my expectations of my colleagues, peers, my family and even expectations of my body all seemingly failed. We grief from unmet expectations, too. We all do. I always felt there would be a sense of disappointment with unmet expectations but I’ve since learned it’s another form of living grief.

And it’s another opportunity to reset…I’m committing to stage 2 of The WholeLife Fitness Manifesto and bringing my spouse along for the sweaty ride. It’s time for a reset and how lucky are we to still be full of life to have that privilege.

And grief, in its many forms…both literally as I’ve experienced this past few months with my mum dying, to this piece around living grief as I traverse my daughter’s arduous journey with a life limiting disease, to relationships is an opportunity to reset, restart, re learn, re commit and ultimately, to rejoice.

See you on the mat…I’ll be the one face down struggling to get back up, but I’ll get back up, you can count on that!

Hoorah…(crossfit talk)

Killing her softly...

Very rarely do I loose my mind in the face of a medical crisis or intervention in regards to my daughter and her long term seemingly progressive disease.

Today was one of those days where I lost it.  I mean, I completely utterly lost ‘it’.

I was in a meeting to discuss where we are at, what support my daughter needed and what we may need moving forward to ensure she could be her 'best self’.  Best self being happy, pain free, active, social, and full of curiosity and joy (a staple in Sophia’s personality). 

We have been in ICU for over a week for what was diagnosed as the onset of respiratory failure.  Yes, respiratory failure…Sophia now requires non invasive ventilation (bipap) which will breathe for her by pushing positive air into her lungs using a machine.

It was and still is disconcerting.  Despite the best of theories and an MRI, no one can really identify why Sophia’s brain decides to stop sending the signal to breathe…and on top of that, she has presented with some physical changes and what looks like issues with swallowing.  Sophia has barely eaten since last week and when she does she has this little throat clearing cough that is apparently the bodies way of moving the food through her throat into the right area.  The risk is choking or aspirating (food entering her lungs), something we haven’t experienced, yet, knock on wood.

Yes, it’s a lot…

Thus the importance of the meeting to really discuss where we are at and how we would like to move through this next stage.  Or at least, that is what I anticipated.

Instead, I was met with professional opinions that not only came across priggish but worse…they completely trivialized the horrendous journey that Sophia has been on for the better part of a year and a half never mind the life long fourteen years.  The specialists contradicted their own observations and initial conversations with us and I felt bullied down an opinion that I still, fervently, disagree with.

It is moments like this that I feel overwhelmed.  It isn’t from caring for a daughter with a life threatening, life limiting disease.  It isn’t the sleepless nights, or days of organizing a plethora of medical equipment, medication, appointments, therapies.  It isn’t the worry.

I am overwhelmed with disappointment in those we trusted, I am overwhelmed with emotions that waffle between anger and utter helplessness.  I am overwhelmed in the lack of acknowledgement of my daughter’s suffering and overwhelmed with the abysmal lack of compassion that exists towards children like mine by professionals like these on a regular basis.

I have been a good advocate for my daughter.  There is not one person in this world that would disagree that I have done nothing but provided Sophia with the best care, the best resources for support, the best environment to be her best self.

Continuing this ignorant pretense is killing her softly…and unless someone in the realm of this professional medical environment starts to stand next to us, self effacing and help carry Sophia through this vortex of a disease she has, that is exactly what will happen.  I have no doubt…

And I know, there is a long line up of parents and children with rare, complex disease process behind us who share in my frustrations.  And who like me, are tired…

So yea, I lost it today…big surprise.

Finding Purpose in Living Grief...being the Great Prestidigitator

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” 

Thich Nhat Hanh

We are ten days into Sophia’s Joy List and while the joy list was meant to help Sophia cope and manage her pain, there has been a secondary impact.  And that has been on me…

For close to fourteen years I have been Sophia’s primary care giver, I have been the one who snuggles with her when she is uncomfortable, the one she reaches out to when in pain and discomfort, the one who makes the tough decisions sometimes grappling well past midnight.

I don’t always feel I get it right but I know I am doing right.  Being Sophia’s mum is one of the most difficult and yet, rewarding aspects of my life.

However, the past six to seven months I have felt helpless, hopeless.  With the increase in Sophia’s pain and central breathing issues and the inability to use medical interventions to its fullest to abate her pain, both Sophia and I have been left to conjure up our own methods or combination of such to get through the moments.  And the moments have increased…what was once every few months, turned to every few weeks, has now turned to every few days.

I feel like a prestidigitator and with slight of hand can mask Sophia’s discomfort through distraction or manipulation.  It isn’t a part of Living Grief we expect and when we are taught to face our challenges we don’t ever get taught that becoming a legerdemain is a good thing!

What I have learned in the past ten days is that slight of hand, that gentle manipulation this way or that in living grief especially in pain and symptom management is a healthy way to manage.

This past week we had the opportunity to spend an afternoon learning to draw Olaf, from Frozen, with the amazingly talented and wonderful Kat Thorsen.

And Kat was a master prestidigitator not only with a pencil…but throughout the experience in the park with Sophia.

The joy Sophia experienced and the delight she had drawing Olaf with Kat gave me a sense of purpose.  That while we created this joy list for Sophia as a distraction of her pain, it has also distracted me from living grief and allowed me the freedom to just sit in the sun and watch my daughter draw, laugh, feel joy…deep joy.

Watch the video here…and delight for yourself in the simplicity of Sophia’s Joy List on a sunny day in the park.

Pain and Symptom Management, the mind and body way: Sophia's Joy List...

Hey everyone…

As you know, Sophia has been in and out of Canuck Place Children’s Hospice a lot for the last six months for pain and symptom management.  It has come to the point that with the complexity of her disease, we have to be mindful of the medicinal support Sophia is on.  Unfortunately, most of the pain medications she requires suppress her respiratory system and put her at risk (she stops breathing).  So we are left in a precarious position of balancing and managing Sophia’s pain…
With the amazing support of the counseling team at Canuck Place and through lots of dialogue, we have decided to help Sophia through mind and body means in conjunction to medicinal measures.  We ALL know Sophia is resilient and has a tenacity for life that far exceeds the norm.  However, the pain is getting such that she is not wanting to go to school or do much.

As a way of encouraging Sophia to continue seeking her joy, we asked her to create a joy list…and we videotaped it.
Please join us in participating in the many activities, share with your networks or even help support her journey.  Feel free to even toss some new ideas out there for Sophia to try.

Our goal is to create adventure and activities for Sophia to look forward to…despite the enormity of what she endures each day!
Will you join us?   You can check out the video on any three links below:

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Who is the Backyard Philanthropist?

Beverley Claire Pomeroy is the Backyard Philanthropist with a vision of redistributing wealth at a grassroots level through Speaking, Consultation and innovative Social Entrepreneurial initiatives.

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