Word Whispering

“Dreams are today’s answers to tomorrows questions” – Edgar Cayce

I spend a good part of the past week data mining the information sources for my last article, time to kick back…put the feet up by the fireplace…oh damn the cable fireplace is down for the season…oh well.

On a dark, rainy and windy evening in Nanaimo I was suppose to be at Maude Barlow‘s water crisis presentation.  As I said on a DARK, RAINY and WINDY night looks like it’s the Page 1,2 of the World’s Mens Curling Championship.

hobbiesincludeIn between ends I keep flipping over to my PVR to catch up on The Originals with Sleepy Hollow in the queue.  It’s raining with trees rattling (I check for that because my car is parked uncovered except by this heavy tree) from the wind but I can still hear the sound of the curling rocks on the ice well enough to turn and look.

Meanwhile in the rumblings of my numbed mind I started to percolate one of those things like an epiphany moments but haven’t quite got there.  Wow Brad Gushue just throw a beautiful shot and now they are heading for the 5th end break.  The demographics of my entertainment viewing is really diverse but so is the community.  I just see it in different ways. Continue reading “Word Whispering”

I’m Coming Back…

“As you remove toxic people from your life, you free up space and emotional energy for positive, healthy relationships” – John Mark Green

I thought I was done and was packing up the keyboard.  I was just going to shut the site down, rearrange my life and keep my opinions to myself.  I was feeling increasingly like “white noise” and I thought it would be easier just to shut down.  Two months of biting my tongue has shown me it is to difficult to blindly accept the level of societal negativity going on around me and be quiet about it.  It is increasingly difficult to maintain a stiff upper lip while the chasm between right and left ideology continued to deepen.  I am not so sure now is the time to shut down.

I have reread my last article a number of times now and have had time to reflect on where that anger was coming from.  I don’t like anger if for no other reason than it fucks with my feng shui.  During this period of reflection I came to the realization that I owned some of the responsibility for this anger.  I had started personalizing issues and that traditionally leads to lost of control.

I usually pride myself on my ability not to personalize issues, comments or give up control of my emotions but I slipped.  It wasn’t any one event, it was information overload, too much negative news and complicated by social isolation.  And as a political junkie, it’s difficult not to be a little negative these days so it just seemed easier to shut her down.  When you don’t golf, hike, cycle or take long walks on the beach you don’t have a lot of venting space so shutting it all down seemed like the path of least resistance.

ThoughtsThe last two month has been spend reflecting going through my year end activities.  Things like shredding old pay/staff records.  Seven years and this is the last year of records I have to shred.  Getting my own taxes done, working some policy issues through with the local health authority, trying to stay on top of access problems in my own town and the list goes on.  All of this has given me time to reflect on a wide variety of issues and things keep coming back to government policies.  It’s not that they are not there, it’s just that they are not policed.  We defend rights by speaking up for them, not adjusting them on the fly.

Reflection also gives you time to recharge and I did need that.  During this period of reflection I kept receiving my news alerts and they were screaming for a comment.  When someone can lecture a young lady who has been on crutches all of her life about the dangers of using stairs people have to speak out.  Up until the late 70’s persons with disabilities could be refused rent on anything above the second floor and I do not want to go back to those days.  The bigger issue here is why that particular night spot didn’t have an accessible bathroom…  Continue reading “I’m Coming Back…”

The Decomposition of Healthcare – Part 4 Discharge

My experience in the NRGH just re-enforces my resolve to push the federal Minister of Health’s position that “transformational change” is needed.  Our current system is broken beyond repair.  One has to question, at what point do you stop using body filler to keep your battered and beaten automobile looking good?  Healthcare is no different.

I grew up in a system that was more akin to the Cider House Rules kind of facility.  It was community and not tax dollar focused.  Today people expect at least a St. Elsewhere or better a Chicago Med type of institute.  People see these wonderful institutes on the weekly episode of their favourite show slowly letting the lines between entertainment and reality get closer together.  If we really want that level of health care run solely on tax dollars, that transformational change has to start happening quickly.  Anyway onward and upward…

Day six I made my first transfer into my wheelchair.  I was still getting IV antibiotics every six hours but each of those were over in fifteen minutes so by day six my leg had improved immensely.  It was still tender, rosy but not as red as when I was admitted and the swelling was down considerably (skin starting to scale and itch).  It was time to start planning for discharge and that meant initially building some endurance back in my wheelchair.  See how having the leg hanging would affect it.  My doctor agreed but also insisted on transfer supervision for the first while.  Fine with me.

Now here’s we get a little bit into the understanding of functional ability.  Like everything else I do momentum is an important factor but, I am learning, most people don’t noticed that, they just see the motion, not so much the action.  So for my first transfer I had the care aid lower the bed so it was even with the seat of my wheelchair and she would need to keep my leg from falling when I transferred.  I knew the momentum of the transfer would jump my leg off the bed at which point the care aid would grab the leg and let it down gently.  After all I don’t have the muscle to do that, part of the nature of someone with lower limb muscle control so we adjust our “functional ability” to accommodate.

So, to borrow a line from the Rocky Horror Picture Show, it was a “quick step to the left and jump to the right” would put me in my chair easily.  Apparently the care aid had thought I would tell her when to grab my leg while I had assumed she would know following my momentum shift from the bed, which left my leg flying through the air like a cowboy on a bronco at the Calgary Stampede, would be a hint as to that was the time to grab the leg.

Anyway it worked out and after exploring my freedom I realized right away I had to get home.  This was re-enforced when I saw the bathroom and realized I was still stuck on that bedpan (speaking of the Stampede above also shaped like a horseshoe).  I was able to go from 30 minutes in the morning to almost two hours that evening being in the chair so improvement was happening.  I had given up on transfer assistance after transfer three.  I could do it on my own, the staff was busy and the reality was there would be no one once I was home.  So it was time to put my big-boy pants back on and head home. Continue reading “The Decomposition of Healthcare – Part 4 Discharge”

The Decomposition of Healthcare – Part 3

The food you eat can be either the safest and most powerful form of medicine or the slowest form of poison.” – Ann Wigmore

Shortly after having published Part 2 of this series I did receive a very apologetic note from Island Health suggesting I contact the Patient Care Quality Office.  I did respond highlighting one of the reasons I became involved with the Patient Care Network was at the suggestion of the Care Office.  However, in a twisted way, this re-enforces my belief that administration gets a better budget to handle PR than health care receives to manage bedside care.

One of the first things you should quickly adjust to when an in-patient is the hospital “minute”.  I had nine days of staring at a ceiling with an IV running and hearing “I’ll be back in a minute”.  Often that “minute” turned into an hour and sometimes just disappeared all together.  By the time I reached my “permanent” hospital bed there was little nursing care I required with the exception of medication and assistance for those functional things associated with polio so usually the hospital minute had little impact on me.  When it was important I had the capability to make my case, other patients didn’t.  I also understand how that “minute” comes about due to inadequate staffing, an administrative activity.

I don’t check into a hospital for a five star hotel experience or an epicurean adventure but I do have an expectation of care and nutrition.  In nine days I was given six basins of water and a wash cloth.  On five occasions I was given a disposable (again disposable cardboard equipment) kidney basin with a couple of plastic cups with water along with a towel.  I had my son bring up my toiletries so I was able to brush my teeth and cover my burgeoning body odour with Old Spice deodorant.  Direct care was aimed at those needing it the most with the limited staffing admin allows.

On the priority list I was very low and should have been.  I was a medical patient taking up a surgical bed.  The level of healthcare I required meant staying in bed and letting the antibiotics do there work.  With that said I did have some expectations around the nature of rehabbing, 1. being knowledgeable and 2. being nutrition.  My first suspicion about knowledge level was a young care aid who asked me what polio was.  After explaining it her response was that she thought it was one of “those diseases you hear about in Islamic countries”.  I’m sorry but in my mind that’s not only ill-informed but it borders on racism.

hosiptalnutritionAs far as nutrition, while I don’t expect five star quality food I do have some expectations on nutritional value.   That is a slice of “Moroccan meatloaf” (and yes it exists I Googled it when I got home), next to that is a beef “ragout” with steamed to death carrots and some slice peach.  This was one of the better presented meals but I’m pretty sure there is very little real nutritional value there. Continue reading “The Decomposition of Healthcare – Part 3”

The Decomposition of Healthcare…Ripped Apart

“When wealth is lost, nothing is lost; when health is lost, something is lost; when character is lost, all is lost“… Billy Graham

I started discussing our crumbling health care system in my last post and promised some follow up.  I am basing this on my own personal experience however I can present hundreds of examples of poor medical decisions without searching to far.  I just came across this one while doing some research on the level of homelessness affecting the aging population plus it has a personal overtone to one of my own situations.

This was a story of an 82 year old women who was discharged from a hospital in North Vancouver following cancer treatment for breast cancer.  She was discharged to a homeless shelter, in part, because her apartment was bed bug infested.  That’s an issue that can partly avoided through proper home care.  Having a house keeper come by at least once a week can be a big help but apparently cleanliness and housekeeping are not considered a homecare service.

My own discharge was delayed due to concerns over my ability to live alone.  While in hospital, with a major infection, I was approached by discharged services to see what I could use to make home a little better.  I asked about house cleaning, not an easy task from a wheelchair.  Whenever I wash my floors I have to go back over them with a dry mop to clean up the tire marks left due to wet wheels so house cleaning can be a challenge.  However, based on the current thinking of health “administrators” house cleaning is not really seen as a health “care” issue.  Unfortunately this administrative type thinking is pushed upon the care side of the program…case in point.

In my last post I spoke of my time in emergency waiting to be transferred to an in-patient medical bed.  What I failed to mention was the introduction of the “hospitalist“, a concept I was aware of but have had limited experience with.  Mine (and for protection of his privacy I can’t use his name even though he deserves praise) was a very nice genuine fellow.  I was pretty please since he took time every day to touch base with me in emerg and eventually was able to obtain a bed for me on a surgical unit.  So after three days in emerg I was moved to a four bed unit on a surgical unit.  Hooray I now have a home of sorts.  In a twisted way (my 20% jaded side coming out here) I went from the homelessness of emerg to the temporary social housing on the surgical unit.  Process is process, fill in your own content (I’m suppose to wink here)…

So here I was in a unit with two gentleman awaiting nursing home placement.  I believe they were both victims to dementia but I was the diagnosing person.  After watching for almost four days I must say I am a little concerned about that the future holds for me as far as health-care is concerned.  Some people just are not cut out to work with people and there were certainly a couple that are probably in the wrong field but you get what you pay for and health administrators put budget ahead of quality.  They have been doing that since the mid 80’s with the advent of credentialism which puts a lot of lower paid workers in positions of trust they really are not capable of but it fits the budget.

When you know your history you start to realize just how wide the door was opened for hospital “administrators” following the Susan Nelles case.  Nursing care was put behind administrative accountability, at least that’s the way it has been twisted over the last 30 years.  We now confuse health administration with health care while throwing countless tax dollars at administration.  Anyway back to my point..

cardboardurinalWhen you read countless news stories from across Canada about huge wages and severance packages being paid to health administrator’s you have to question why hospitals are stuck with a budget for cardboard urinals.  I can understand the preference for a health facility to want something like hospitalist, there can be some financial benefit but not as a tool for administration to control bed flow.  The idea of re-using cardboard urinals just pushes the boundaries of the envelope to overfill. Continue reading “The Decomposition of Healthcare…Ripped Apart”

The Decomposition of Healthcare…

Today is Canada’s Thanksgiving which is a little different from the American equivalent, still six weeks away.  It’s a time for families to get together, enjoy each others company for maybe that one time a year, stuff themselves with turkey and other good foods while giving thanks for various aspects of their lives.  One big difference between Canada and the US is that every turkey is under threat here since we don’t have a President to “pardon” any given turkey.  Regardless what country you are in being thankful is the major part of this holiday.

For the last number of years I have had a difficult time recognizing aspects of my life I should be thankful for.  I know, deep down, that I have many things to be thankful (grateful) for however as access dries up social isolation tears you down.  With decreasing access, even among people who know you well, it’s hard to feel thankful when social isolation makes you just wish you were dead at times.  This year was a little different and it took a health emergency to wake me up.

I recently became involved with the Island Health Patient Voices Network as a way to be active with health delivery in this area.  I’ve spend the better part of my life involved with health-care so why stop now.  With a new federal health agreement somewhere on the horizon, the changing community demographics and the technological changes that require a different approach to health-care this activity caught my attention.  All the hype about “engaging citizens” and encouraging patients to be “active” members of the treatment team made me think this would be a good volunteer involvement for me.

Plus it would provide me with some community activity and not worry about physical access.  A lot of it is done through conference calls or online.  Another side of me (the jaded side) was busily hoping this would be substance based and not just optics for the community.  I think I found my answer…

I unexpectedly wound up in the Nanaimo hospital for the nine days leading up to Thanksgiving.  It was unexpected and the first dealings I have had with this hospital as an in-patient.  Let me start by saying so much for the patient being part of the treatment plan unless I was prepared to shake my head in agreement with whatever hospital “administrators” (very different from the bedside care-givers) were saying.

So over the next few posts I will be discussing “health-care” from the perspective of a non-traditional patient.  So much of health-care is based on traditional health and body function.  It requires some thinking outside the norm when dealing with a life time of adaptive behaviours.  Anyone who has grown up with some form of life long disability have usually found adaptive techniques that work for them but it’s a very individual process.  Put five polio survivors around a table and you will probably find five different approaches to problem solving a physical condition.  What I discovered in the hospital was that health administrators are failing on this concept.  I was very much left with the impression that administration was running a production line service rather than an individualized treatment approach.  So let me begin…

I’ve reached a point where after 8 to 10 hours in my wheelchair I need to get out of to relax.  On September 26 around 7pm I was feeling fine but it was time to settled into my recliner to catch a bit of evening TV.  My leg was very itchy and starting to swell but I didn’t give it much thought.  Over the years I have developed a bit of a Edema in my feet but I have been told it’s part of circulatory issues related to the polio.  The blood flow is a little weaker and it’s only by using momentum that it maintains some form of control.

I must have dozed off watching the National news but when I woke up at 3:30am my leg was the size of a small tree trunk.  It felt like my leg was on fire and was the colour of a big red apple.  Between a lot of lip biting and grimacing I managed to get back in my wheelchair, get to my phone (which was charging) and called an ambulance.  I also had the good sense to grab my electronics (iPhone and iPad plus chargers) waiting for the ambulance. Continue reading “The Decomposition of Healthcare…”

Pissed Me Off, Again

“A right must exist independently of its exercise,” – Rory O’Shea Was Here (2004)

I usually try to be polite and mature in my writings.  I try to be as factual as I can and hopefully eliminate as much of my own bias as possible.  Then there are days like today where I run across a story that just really pisses me off and I need to RANT.  These types of stories are showing up with increasing frequency and they all have a related theme.

12042646_10156796145460571_1826686942731217207_nOver the years I have watched as “words” have been redefined simply by being used out of context.  The context the word usage derived from may have changed altering the understanding of that word.   Definitions from thirty years ago may no longer be valid and yet we continue to build a legislative framework on those words.  I contributed fifty + years of my life to build an inclusive society and I know what the intent of all that work was.  I can no longer sit here like a “politically correct puppy dog” simply because I may benefit from some of these programs while my history is erased.

RANT – A story came to me today about a mother in Smith Falls, Ontario.  She has been tied up in the Human Rights process fighting for the rights of her son with Down Syndrome.  I have included the link to the story but here’s the long and short of it.  Her son is a 52 year old individual who has lived in the community most of his life.  He receives a certain level of support in the community to sustain his independence.

I am guessing mom is in her seventies so not really the stress she needs in her “retirement years” (for the record for some parents of children with disabilities there is no such thing as retirement).  Plus she was absorbing (and she admits a good bit of financial support from friends) that $1500/month additional cost that the government wouldn’t cover.  The governments own standards stated the son could have a home visit from a nurse four (4) times a day but not the fifth time.

To screw around a family for something as simple as the difference of one visit pisses the hell out of me.  A standard needs to be balanced with intent before being denied.  Behind every standard is a “legislative intent“, people tend to forget that.  A standard is simply a way to provide measurement or activity but intent is a way to adjust for circumstances.  Over the years I have watched as “intent” slowly disappears from decision making.  The intent behind home care for independent living is to allow people to stay in their community and that intent should hold some weight when determining needed hours of support. Continue reading “Pissed Me Off, Again”