Crappy Way to End the Week

“If you don’t know history, then you don’t know anything.  You are a leaf that doesn’t know it is part of a tree.” – Michael Crichton

Happy Easter or whatever celebration you celebrate at this time of the year.  My Easter morning experience involved extricating myself from between the wall and the toilet in my bathroom.  Using the potty can be a delicate discussion and usually involves just as delicate an action but I’m going to throw this out there.

Made a poor judgement on momentum this morning so between the landing and a very lose screw (one of two that hold the seat steady) I overshot the landing zone taking time for a face to face with my toilet plunger.

It seemed like a good time for a mental distraction as I wiggled physically to regain a vertical rather than horizontal perspective of the room.  That distraction turned into an epiphany involving physics.

I’ve broken my fair share of toilets in my life but baste on what I hear (or don’t hear) I don’t think it is an occurrence for most people. Getting myself dislodged gave me some time to reflect on it.

toiletThis is the bathroom in my “wheelchair” apartment.  There is no way a wheelchair is getting in beside that but whatever code interpreter was issuing the permit seemed to think this would work.  What the hell, I’ve been here almost three years and made it work.  So please don’t start on me about accommodation.  I’ve done my fair share.

I’ll bet you have never thought of this but the next time you go to sit on the toilet pay attention to how important knee motion is to lightly sit on the commode.  That knee movement allows for a much more controlled PSI landing.  It’s nice equal weight distribution which is what a good toilet is designed for. Continue reading “Crappy Way to End the Week”

After the Poster Child…

Two things have come together in the past week which has encouraged me to write a bit more.  Steven Bertrand, a younger advocate acquaintance of mine in Victoria, send me a note telling me he has been asked to write an operational manual for a service the City of Victoria provides.  That speaks well to his ability as a writer and his profile within the disabled community.  Here’s a kudos to him and it is good to see his generation becoming active.  I hope to discuss that further with him (historical perspective) but well done Steve.

Poster child

The second thing was a very good article from the The Star.  It spoke to an issue I have argued to all of my life, that of the cute inspirational poster child needing everybody’s help.  As a teenager with an attitude fuelled, in part by society’s attitude to disabled children, I spoke through my actions.  Acting out became my early form of activism.  I wanted to be seen as a person (even if that meant being a juvenile delinquent) rather than a cute disabled poster child.

As I aged, and matured, I discovered the power of words.  I began joining committees, getting involved in causes (this was all pre-Charter time), take part in protests, work for non-profits, started becoming a more verbal activists with techniques learnt through the anti-Vietnam protest days.  These were all transferable skills and I used them.  According to some, very well.  According to many others it just became “white-noise“!

However the article isn’t white noise and is well presented by Doctor Barbara Gibson.  Having a disability isn’t necessarily tragic.  You know what is tragic, the thousands being killed in Aleppo.  That’s tragic so lets get our priorities straight.  Every time you tell a child with a disability how “tragic” it is (and it gets whispered to parents more than one likes to believe, I’m in a wheelchair, not deaf) you lay seeds that can later sprout into a lot of self-doubt. Continue reading “After the Poster Child…”

Reframing the Senate

“Democracy cannot succeed unless those who express their choice are prepared to chose wisely.  The real safeguard of democracy, therefore, is education.”  – Franklin D. Roosevelt

I was just catching a snippet on the news regarding the newly appointed Senators.  Of course some are already up in arms over it but there are more knowledgeable individuals/groups out there on that subject than myself.  So I will sit back on the periphery and catch the snippets that may impact me.  After all a Senator does have a very high level of authority when it comes to affecting the direction of the nation.

On a micro level I was reminded of a meeting I participated in yesterday.  I had a very good discussion with two of the Patient Voices Network for Island Health staff.  We discussed many of the issues in healthcare including some of those I had raised in previous posts.  Now I have met both of these individuals once before but very briefly.  This was our first chance to really exchange thoughts on our healthcare system from a very grassroots level.

Grassroot advocacy is something I understand very well.  I have been part of that process from every level imaginable and a wide range of topic particularly health/disability.  I was involved in advocacy well before either of them were born (I’m guessing they are both 30+. hope I’m not embarrassing anyone) but there had to be a 30 year difference between us.  However as the discussion progressed all of the similarities started coming out.

I felt we had a very engaged and genuine conversation.  What I found particularly interesting was the level of advocacy that was actually being done without using the term.  For some reason that term threatens a lot of people.  In the 70’s I spend a few years as a provincial patient advocate for the Canadian Mental Health Association and for whatever reason any notice of my visit would throw the institute into panic mode.  I wasn’t a bad guy but the term advocate was getting a bum rap.  By the mid 90’s any mention of advocacy could cost community organizations grant money.  Silence was created by tightening the purse strings.  However many of the concepts we discussed were definitely of the advocacy nature.

In the meeting (I’m even hesitant to refer to it as a meeting since it was really a comfortable lets get to know each other discussion and our roles in healthcare) we discussed change and how it can appear to be so slow.  The truth is systemic change is a slow process.  As an example it took us well over ten years to really see how effective seat belt legislation was but at the time there was all kinds of outrage and screaming from segments of society.  That was almost thirty years ago.

Supposedly we have advanced our societal beliefs to be a more inclusive, compassionate and caring society, it only took us to get from what Susan Rodriguez was requesting to where we are today with Bill C-14.  Change can take time but as long as we are moving forward I can live with the rate of progress.  However when I look at the current election campaign happening south of the border it makes me realize that some have moved further than others at which point I weep for the days of Fred McMurray.  However I have little control over that outcome so it’s low on my list of priorities even though the outcome could have an affect on every Canadian.   Continue reading “Reframing the Senate”

Body Filling Healthcare

For those of you who followed the last four posts know how I was going on about healthcare, or maybe I should say health “administration”.  Apparently Island Health was reading as well.  I did receive a pleasant note from Island Health suggesting I contact the Patient Care Quality Office which I have declined to do.  I have dealt with that office before as well as the one in Alberta five years ago.  I am sure they mean well but that meaning well and $2 may get you on public transportation.

CONFESSION – A person has a lot of time to think when you’re lying in a hospital bed especially without WiFi.  It is becoming increasingly harder to reconcile a young thinking active mind with a failing body.  Sixty-five years of living with a chronic condition takes its tole on a body.  It’s like spending a lifetime keeping that Chrysler 426 Hemi finally tuned but maintaining the body with the occasional car wash and some inexpensive body filler.

I also realize it is pretty well the norm for many of the baby-boomers to live in denial of aging, I am one of them.  However baby-boomers are really the first large demographic with parents still alive.  To baby-boomers 90 is old but to the millennial their parents are old, us!  We now live in a system that has been designed for 85 year olds, no disrespect meant.

The Assisted Living Federation of America reports that the average age of assisted living residents is 86.9 years (female average age, 87.3; male average age, 85.7). Female residents (73.6%) outnumber male residents by almost 3 to 1. The majority (76.6%) of assisted living residents are widowed, and just over 12% are still married or have a significant other.

While I’m lying in that hospital bed attempting to square the circle of this body/mind disconnect I’m also observing my two roommates.  Both elderly gentleman awaiting a placement bed somewhere due to what I believe was dementia.  Where these beds will be is uncertain but does raise some interesting question regarding my future needs. Continue reading “Body Filling Healthcare”

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”