Did you know that TODAY is Advance Care Planning Day in Canada?

Did you know that some of the best conversations that we will have in our lives will be about what matters to each of us as individuals, what we value, what we hope for, what we live for…. what  we want, what we do not want, what we fear, what helps us face struggles, and who we would like to speak on our behalf if and when we are not able to speak for ourselves?

Canada has a fabulous website, www.Advancecareplanning.ca . The campaign helping Canadians to talk with one another about future health and personal care preferences is called the “Speak Up Campaign”.

Easter weekend is coming up, Time to go huntin’ for Easter Eggs, consider the idea of life after death, and it is also a great time to consider life before death…

This may be a time to talk openly with kids and with parents about “what would you want if….” and get to know one another better.

According to the most current research, we are all going to die.  10% of us will die suddenly.  20% of us will have a clear terminal diagnosis and perhaps a relatively clear prognosis…. but 70% of us will die with one or more chronic diseases. Of those 70% at least half of them will not know a week before they die that this will be their last week.

Based on these numbers, approximately 55% of people will not know a week before they die that this will be their last week.

If you wait to talk about dying until you KNOW you are dying, you may not be doing much talking!

Have a look at the Advance Care Planning website.

Early morning conversation about "what I want when I am dying".

Early morning conversation about “what I want when I am dying”.

FYI, This photo of my mum, Yetta Lees Strasdine and myself, was taken by my sister Barb Lees, early one morning about seven weeks after my mum was diagnosed with a terminal cancer.  Yetta, true to her style, wanted to talk about what was important to her.  You can be sure that she did not want us making decisions for her that she did not want! Interesting, at that point, the surgeon had told her that she had six to 12 months to live. She did not know that she only had a few weeks. It sure helped us when we cared for her in the coming weeks to know what was important to her.

If you look closely at this photo, you will notice the collage of activities, books, computer, projects, quilt, printer, people and photos … just a few of the things that this 82 year old was engaged in.

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Have a look at this excellent three minute video with Brene Brown talking about the difference between empathy and sympathy.

I love the animation and the message about empathy.  Some lovely comments on what empathy is and what it is not, and illustrates a few ways to support someone in an empathetic way. Beautiful.

In defense of the many people who have not been part of the discussions about the difference between sympathy and empathy I want to add a thought to this discussion.

Over the past 20+ years people have participated in this discussion of the difference between empathy and sympathy. Most of the time people describe what they define as sympathy, and describe the less than helpful behaviours that apparently go with sympathy “I know just how you feel…” “It could have been worse”etc…  In these discussions, sympathy is portrayed as being less than wonderful, less than empathy, and less than kind.

Meanwhile, for the last 20 years, I have heard people who do not know this discussion, do not share in the academic study of words, use the term sympathy in a way that is more than good, more than kind, and more than an attempt to fix and gloss over a problem.

The dictionary.com defines sympathy as “the fact or power of sharing the feelings of another, especially in sorrow or trouble; fellow feeling, compassion, or commiseration.”

So, all this to say…let us learn to be empathetic as Brene Brown describes, and let’s also remember that there are people in the world who use the word sympathy to describe what Brene describes as empathy.

And in my own life, as I rub shoulders with those who demonstrate incredible kindness and support and warmth and humanity… and whether they call it sympathy or empathy… I hope I can learn from them!

Have a wonderful sunny day!

Kathdaffodil

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We are thrilled to announce this new award honoring a PSW committed to Hospice Palliative Care in Ontario. The award is titled: The Frances Montgomery Personal Support Worker award! The award is valued at $1,500 and includes a full registration to the annual Hospice Palliative Care Ontario Conference, a stipend for travel and accommodation, and a one year membership in HPCO.

This scholarship award is given annually to a Personal Support Worker nominated for excellence in hospice palliative care.

The award celebrates Frances Montgomery and her commitment to caring for the dying within her family and extended community.

This award acknowledges the invaluable contribution of Personal Support Workers in providing excellent care for the dying, support for families and loved ones, and helping to move quality hospice palliative care forward in Ontario.

For more information go to the Hospice Palliative Care Ontario award website.

Download the award nomination guide. Nominations for this scholarship close April 11, 2014.

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Personal Support Workers (Also Known As Health Care Assistants, Health Care Workers) often care for people who require medication or comfort measures to help control their symptoms.

I was asked to explain the principles of symptom management…
Here are a few ideas (not in order of priority!)

Symptom management requires good care planning! The Canadian Hospice Palliative Care Association suggests that assessment, information sharing (with person and family), and decision making (goal setting) should happen BEFORE care planning.
o If you are caring for someone and symptoms are not managed and patient and family express concern about medications or plan of care, it might be because they did not understand the information shared with them when the plans were developed. It could also be that the Health Care Team developed a care plan that was not consistent with what the patient and family wanted. If you hear concerns from patient and family, if person or family are worried about medications or how they are being given, communicate this to the health care team.
• Prevent what is possible to prevent,
o When someone is started on Opioids, they should also be started on laxatives. Monitor bowel movements, and report if constipation occurs.
• Respond to symptoms before they escalate (report pain before it becomes a crisis)
o If pain occurs, do not wait for it to become severe before you record and report it. The same is true with other symptoms, for example, if someone is restless at noon, up and down and up and down… and will not settle, it is very likely that they will be restless and unable to sleep at midnight.
• Medication is one tool to help manage symptoms
o People are often hesitant to take medications. If you hear people express concerns about medications, encourage them to talk with the nurse or physician to discuss their questions, concerns.
• Non-medication comfort measures can decrease discomfort, and can help the medications work more effectively. Consider using items from your “Comfort Basket”

Do you have any suggestions regarding basic principles of symptom management?
Ideas?

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I am writing “Essentials in Hospice Palliative Care: A Guide for Personal Support Workers”  (PSWs are also known as Health Care Assistants, Community Health Workers etc.)

As many of you who read this blog know… The PSW is often the eyes and ears of the health care team. It is often the PSW who observes a problem, reports to the nurse or supervisor in order to get the needed supports to help address the problem.

In the section on Physical Comfort, I discuss common symptoms experienced by the dying, what the PSW might see and hear, what they might report, and comfort measures that they can provide.

When a PSW is in the home setting or in a busy long term care facility, the PSW needs to provide the nurse with enough relevant information so that the nurse will understand the needs and be able to respond in a timely way. In these cases it is helpful to report more than the basics “I think Mr, H is in pain, can you see him”.  A more thorough report is needed.

I like the OPQRSTUV acronym used by many health care professionals to prompt them to complete a more thorough assessment.  ”O=Onset P=Palliating or Provoking… etc… but these more complex questions are not really in the scope of the PSW practice…. So, I have taken the basic concepts and developed this list of questions that the PSW could apply to any symptom…

I would appreciate your critique, comments, feedback… what do you think of the questions?
Are they too much for a PSW to consider?
Does the flow of the questions make sense to you?
Are they helpful?

When you respond, please indicate your background, are you a PSW, an instructor, a supervisor, a family caregiver etc…

Here you go:

“Consider these questions when you observe the person. You may be able to ask the person or the family these questions, or you may be alone with a non responsive person, and you may need to use the information you have gathered by observation to answer these questions.

What is happening?
When did it start?
Where do you feel it?
What does it feel like?
What makes it better?
What makes it worse
Can you rate the symptom on a scale of 0-10 (no symptom, or the worse you can imagine) or small medium or large?
What can I do to help?

Use the information you have gathered to report to the nurse/supervisor.”

I would appreciate your input. If you are not comfortable replying in the public blog, you are welcome to email me directly.

Warm regards,
Kath

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When I come to the end of the road,
And the sun has set for me,
I want no rites in a gloom filled room
Why cry for a soul set free?
Miss me a little – but not for long.
And not with your head bowed low.
Remember the love that once we shared.
Miss me, but let me go.
For this is a journey we must all take,
And each must go alone.
It’s all part of the master plan,
A step on the road to home.
When you are lonely and sick at heart,
Go to the friends we know,
Laugh at all the things we used to do.
Miss me, but let me go.
Anonymous

 

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Last Christmas as my mother was dying, her dear friend and West Coast musician Shari Ulrich was experiencing the deaths of several friends.  Shari wrote this incredible song, “Making Friends with Gone” which she sang at my mothers memorial in January. To listen.

Making friends with Gone (Yetta) from Shari Ulrich

(Most) all the food’s been put away
A little soup left on the stove
I hear the last car leaving
Down the driveway and up the road
It’s so sweet of Jim and Joan
To make a trip so long
I guess now I’ll be making friends with gone.
The flowers they were beautiful
And everyone so kind
I thought how you’d have loved to see
so many dear friends at one time
After all the stories
and the toasts till nearly dawn
I guess now I’ll be making friends with gone
I’m so glad we had those last days
laughing and crying and the jokes you made.
Like every time you drove away
you said I love you
We called out we love you too
Just a little longer now
I don’t want to go to bed
Maybe just another walk
Down Cooper Road instead.
If anybody asks you just how I’m getting on
Tell them I’m still making friends with gone, now
Forever making friends with gone.

Thanks Shari for letting us listen to this now, before it is available for sale in January

Kath.

 

 

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True confessions… I can enjoy a good sappy movie (AKA tear jerkers, chick flicks… by any name I am alright with them.)

Leanne McKinzey, a PSW instructor at Centennial College recommends Christmas in Conway.

This Hallmark special tells the story about someone who is ill, a cranky caregiving husband who decides what the best medicine is for his sick wife and there is even a home care nurse who visits!

Maybe this is even a teaching/learning tool about living/dying, family caregiving, home care…. (Let me know what you think!)

(One of my favorite movies of the last few years, (have I already written about this?) was “The Bucket List” with Jack Nicholson and Morgan Freeman.  There is nothing better that Jack Nicholson, after he had vomited in the toilet, standing up, taking the bathroom sink in his hands, facing the mirror and saying “Somewhere some lucky bugger is dying of a heart attack”. 

Christmas in Conway, a teaching/learning tool???

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Davindra, a PSW student in Ajax, Ontario, inspired me to write these words to the tune “A few of my favorite things”

“People who care give with love in their hearts,
Caring for others who soon will depart,…
Warm hands and kind hearts just make me sing,
These are a few of my favorite things!”

Kath and Davindra, Ajax, CDI College, October 2013

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To celebrate and launch our new journal – Journaling for Self Care – we invited you to share tips on journaling.

Bonnie and Evelyn, thank you very much for sharing your experience on the value of journaling in caregiving, and for your ideas on how to journal.

“Journaling helps me be more present in my journey with my husband – it helps me to notice what’s going on in my life and what I want to process further. Then the process of writing helps me clarify the issue and to determine thoughtfully how I wish to move forward.”  Bonnie Thiessen (Winnipeg)

“I have been journaling since I was 15 (I’m almost 60 now) and have found it to be my release, meditation, inspiration, solace and comfort. I have been helping my mother take care of dad in his last months of life and journaling has been an every day relief to delve into grief, exhaustion, frustration, compassion – and love.

For me, it just takes sitting down with my – usually beautiful – journal and pen and start writing. Any thought, anything – as Pema Chodron would say: start where you are. Just keep at it, whatever comes to mind. Usually there is a moment when the subconscious (soul, spirit) kicks in and takes over – and the writing truly writes itself. Deep feelings and thoughts surface causing a release and bringing peace. It works for me.               Evelyn Kaltenbach (Marsh Lake, Yukon)

Outside Evelyn's front door in Marsh Lake, Yukon

 

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