A Day in the LIfe - Rehab by the Numbers - Part twelve

Finishes.....!!

I pondered the differences between the two facilities.  The regimented ward operated for several patients as a hospice.  It was surprising how many people had dire illnesses.  Physio treatment allayed their mobility restrictions while they struggled to hold on to life’s spark. At least one person died while we were there.  For some the rehabilitation on offer merely opened a window of opportunity to go home before their condition worsened.   

This was no place for people with terminal illness – they needed hospice care or the comfort of their own home.  It suggested that existing facilities did not have the capacity to manage the numbers of people requiring intensive hospice care.  As the numbers of ageing people with chronic conditions are set to rise exponentially over future decades, it is glaringly obvious that public resources are inadequate.  Survivors of severe stroke and various devastating tumours, some of whom had lost the capacity to fend for themselves, were a discernible component of the ward population.  Several did not appear to have family support, either because of geographical displacement or other circumstance.  

These public facilities were fully occupied with continuous waiting lists.  It did not take much imagination to figure hospice facilities were similarly stretched.  ‘Future proofing’ did not appear on the horizon.  A rather dystopian outcome looms if the paradigm does not shift substantially to counter the coming tidal wave.  Hopefully, our citizenry will not only demand increased public health resources but cultural change to make the labyrinth better respond to individual need.

As with so many turns along the journey, we were pleasantly surprised when informed the consensus among the specialists was that Carolie need not go to RILU but could go home as soon as practicable.  Her physical recovery had accelerated and the required home modifications completed.  She had lost a lot of weight, had trouble eating and dealing with bouts of nausea.  The left side palsy left her weakened, lacking coordination and struggling for balance.  Her speech was affected and she had experienced a degree of cognitive damage that affected her overall capacity in areas like decision making, information and complex task management, and general motivation.  The degree of damage and her capacity to find new pathways was unknown.  It was daunting but our overall sense was elation at surviving a horrible ordeal.  

We knew the next phase would bring difficult challenges.  Little did we know at this stage how these would eventuate, involving more major surgery and the extraordinary arenas of orthotics, 3D imaging, cranial implant construction and cranioplasty.  Carolie’s outpatient experience for the next year or so was a complex rehabilitation regime, including physio, speech, occupational and vocational therapies.  We had both changed and our relationship had evolved, but then we all change and evolve all the time.  

A Day in the Life - Rehab by the Numbers - part eleven

Continues...

Initially we were restricted to day leave on Saturday or Sunday but eventually we were afforded an opportunity for weekend leave.  This required a house assessment by occupational therapists.  During the visit we agreed strategies for managing Carolie around the house.   

Longer term modifications were necessary, including rails for a bathroom, the front porch stairs and internal staircase.  Our toilets had to be fitted with a unit that raised the seat and provided built in security rails.  These became permanent fixtures.  In the short term a shower chair and an adjustable toilet module was provided by ACT Health.  Some stroke victims have a high risk of falls and most strategies revolve around fall mitigation.  It was agreed that Carolie would sleep in a downstairs bedroom with easy access to a toilet.  

Weekend leave tested my caring abilities to the hilt.  I purchased a baby monitor to alert me to any issues during the night.  It provided a visual and audio signal that helped me monitor Carolie's sleep periods, which were extensive.  She continued to tire easily and nausea bouts were frequent.  She had weak bladder and bowel control, which required regular attention.  On a few occasions I was changing sheets in the middle of the night.  Her drug regime was intense, including stomach injections at night and a plethora of drugs. 

Carolie at home on leave

I made a few mistakes but nothing that seemed to cause major concern.  A drug schedule was provided on taking leave of the ward, which was acquitted on return.  It would be easy to disregard the schedule and mishandle drugs – assumed responsibility and common sense combine to ensure the relaxed protocol around drugs issued to carers is effective.  This aspect of patient management was empowering, in stark contrast to much of what we had experienced.

Another scenario emerged we had first become aware of from other patients at mealtime.  The Rehabilitation Department had another unit, which was available to patients who displayed a degree of self-reliance.  It was aptly named the Rehabilitation Independent Living Unit or RILU.  I was encouraged to visit the unit, which is in a far corner of the TCH domain – a labyrinth way station for those looking to take their leave.  It had an inviting ‘holiday camp’ feel about it.   

The relatively compact building had a rustic, welcoming facade surrounded by bits of tended garden, in stark contrast with the architectural behemoth of the main hospital building.  The holiday camp theme continued inside. There was a homely lounge room and open kitchen/dining area.  Each patient was allocated their own bedroom that could best be described as ‘Spartan’.  Inmates had ready access to the kitchen and an adjacent gym/workshop facility.  They could come and go as they liked within the confines of the unit.   

On the surface it seemed preferable to the stifling ward regime.  Why did this facility have such a different operational culture?  This was low security incarceration with perks and a degree of self-management, held out as an aspiration for those subject to the strict discipline of the ward.  My worry was that a transfer would mean too much adjustment for Carolie.  Our best result was going home.

To be continued...