Fear and Loathing…

“Fear is the mind killer…” Frank Herbert (Dune)

I came into the new year feeling a bit more rejuvenated having made the decision to look at the opportunities of “assisted living“.  It wasn’t an easy decision but the reality is I will be 67 this year and, like it or not, I’m a senior.  Accepting my age while recognizing the speed with which decrepitude is lapping over my body means I may have to give up a bit of independence but hell life is a trade off right.

That decrepitude I can handle but the slow erosion of confidence was harder to deal with.  That transfer into my car or the jump momentum from the ground to my wheelchair is becoming more difficult and that erodes the confidence level.  Those same issues are the high risk times for falls.  In my desire to think proactively and avoid potential hospitalization moments I would feel safer knowing there were some supports close by.  I am probably even more tuned into this at this particular moment having watched an ambulance just haul one of my neighbours off to the hospital.

thoughtsI spend last week putting some deep thought (and research) into assisted living apartments.  I quickly discovered that the private sector was out of my price range.  At the risk of repeating myself, $3000 a month seemed to be the average cost out there but that covered almost everything, meals, house cleaning, close emergency medical backup, some laundry service for my bedding plus the suite.  The suite has a kitchenette but not a full oven, no big deal to me but again $3000 is beyond my budget.  That appears to be the starting point for private services.

The buildings with subsidize suites directed any interested parties to the Island Health “Assisted Living” website.  As a life-time “professional patient” I know some of these things take time so I had to set some wheels in motion.  It took me 54 weeks to access the promised government assistance to cover half the cost of a $6500 wheelchair so I understand the need for perseverance.

I met all of the criteria (I thought), had identified a potential facility in Duncan and made the call to the 1-877 line.  I received an amazingly quick response from caller number one who took some basic information from me before telling me she would put caller 2 in touch with me.  Three days later I received a call from the Occupational Therapist (caller number 2) who wanted to book some time for a home assessment.  Fine, moving much faster than I thought it would.  She came by that afternoon.

Pleasant enough lady.  Semi-retired Occupational Therapist who does the occasional assessment for Island Health.  After a quick assessment, pretty straight forward.  I gave her a quick demonstration of how I transfer in and out of my chair.  Showed her I get in and out of the shower, again explaining how all of these things contribute to a “falling” risk and part of my rational for assisted living was risk mitigation.

O.T. = “What homecare services are you currently receiving?”

Me = “None.  When I was discharged from hospital two months I was told there were no services I qualified for.”

O.T. = “Well you have to be in receipt of 30 hours a month of homecare services.  What are your needs. Do you need help in and out of bed?  Can you prepare your won foods?  Do need help with medications?”

Me =  (Shortened version) “No, yes and no.  So basically you are telling me I can’t qualify for one program, assisted living, because I am not in receipt of services I don’t qualify for?”

The drift of the conversation went on to where, if I want to go over to the bath program once a week that would count as an hour of service and it went on.  When I mentioned the safety of having someone close in case I miss a transfer to my wheelchair, answer, “call an ambulance, they’ll help you get back in your chair.”  She wasn’t explaining this rudely or with any apparent malice, just sort of a matter of factly.

Poster child
The journey begins

You stop being cute poster child when you become independent and control your own life.  You live your life based on the expectations you developed from childhood.  You moved forward based on a set of philosophies and the expectations around you.  Today they call those “developmental milestones” but in the 50’s it was just called life.

One of those expectations were promises made by the government of the day, that no child who contracted polio during the Salk trials from 1953 on would have to absorb any polio related medical costs.  So we lived accordingly and assimilated into the mainstream in mass.  We “aged out” in huge groups and poof polio kids disappeared.

Many polio survivors grew up thinking they would be dead in thirty years, that was the general thinking of the medical community of the day.  Healthcare, at the time was young, 25 to 30 years was the average life expectancy post trauma and they backed those numbers up based on the mortality rate of wounded WW2 vets.  Well guess what, society has far exceeded itself in the medical/technology aspect of healthcare and here we are.

Do those promises made to us when we were “cute poster kids” still have value as the polio survivors reach retirement?  Don’t get me wrong I am not asking for special treatment but I don’t think you should be using criteria measurements that most polio’s have spend their life developing an almost unconscious adaptation to a process.

There appears to be no room in this assessment process that allows for a life time of wheelchair wear and tear on the body.  The fact that on some days you can’t push your wheelchair because the arthritis in your hands is to bad to get a good grip on your wheel.  They fail to recognize the difficulties in sweeping snow off your car from a seated position.  They don’t acknowledge that on some days my knees can be to stiff to reach my foot and put on a sock.  They can’t understand how I burned my elbow on an oven burner that is at eye level with me.  These are just a few of the day to day issues people in chairs face so how can a healthcare system not see the need for relaxed criteria that is a little less subjective but actually acknowledges the difference in needs.

So you might say I am a little pissed over the lack of supports that exist for these same polio survivors at the other end of their life.

I am fearful over how little there is really left to follow through on commitments and I loathe that I actually helped design a system that has become a systemic barrier.   If you are a polio survivor and experiencing some of what I am describing then leave a comment but definitely contact your MP.  Ask your government representative to stand up for you…

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