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...

A day in the LIfe - Rehab by the Numbers - Part ten

Continues...

With more discernible improvements the opportunity arose for ‘day leave’ and, eventually, ‘weekend leave’.  This was an exciting if somewhat daunting prospect.  We had to pass a ‘car management’ exercise to gain approval for leave.  I was reminded to an extent of boarding school strictures around personal leave.  All in all, it was worth a sense of disempowerment around leave protocols to get Carolie out of the place.   

I was reminded of limited release afforded prisoners as they approach the end of a jail sentence.  We took advantage of this immediately it was offered.  After demonstrating to a ward physiotherapist the correct technique for managing a wheelchair transfer via car we were able to have our first outing at a lunch with some old friends visiting from Sydney.  The sense of freedom for Carolie was palpable.  She coped remarkably well with her new chariot, and greatly enjoyed a lunch with friends.  The little things of life become hugely significant when your are denied them.

Carolie:  

Gradually I was becoming more and more confident and adept at using my upper limbs.  Soon I discovered that some of my fellow patients were visiting the hospital’s cafeteria, called “The ‘Hoz’” I mentioned this to Mark and we discussed the possibility of going so that I could have a more varied diet.  One day Mark came with a wonderful surprise, we were going out for lunch to “’The Hoz’”. What pure joy to have fish and chips to eat, at last!  It was so delicious. I enjoyed being surrounded by normal people in the cafeteria setting.   

During this time Mark was given lessons by the occupational therapists in dismantling the wheel chair so that it could be put into the car. I went with them out to the side walk outside the hospital, not far from the ward.  I had to stand and then slide into the car seat by putting my right leg out first. I managed this successfully, the first time I tried.  

Once we had achieved success, I was ready for going out. At one time some dear friends came to Canberra and discussed going out to lunch. I chose the Hyatt Hotel as a favourite spot.  I knew that it had wheel chair access, through the back entrance. So a date was agreed and Mark picked me up. We managed the wheel chair without any difficulty and I was thrilled to be out, especially in the elegant art deco environment of Canberra’s Hyatt Hotel. It was a delightful meal and such a treat for me to be out of the hospital, socializing with Mark and dear friends.

To be continued...

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

Continues...

Core business of the ward was physiotherapy.  The other specialists worked around this given.  Most days were taken up with the physiotherapy regime, mornings and afternoons.  Upper limb therapies were integrated into the workings of the gym.  An afternoon a week the various specialists got together for a ‘case conference’, where the progress and treatment regime for each patient was discussed.  This afternoon was ‘time off’ for the patients.  It was the only unstructured period during the business week.  Weekends were also unstructured.   

The resources of the gym were in great demand throughout business hours.  The physiotherapist cadre was supplemented by an assistant and final year students undertaking practical units toward completion of their degrees.  Much of the ‘hands-on’ therapy was managed by students under close supervision.  Again, the teaching function of the hospital was to the fore in gym operations.  We enjoyed the attentions of this enthusiastic cadre of young people, some of whom were studying at our alma mater, the University of Sydney.  

Rotation of student cadres under the gym schedule enables it to function more effectively.  Without these resources it was obvious the gym would struggle to meet the demands of the ward.  Brain trauma patients alone would have tested the capacity of the unit.  Treatment of certain patients was resource intensive, demanding regular attention from qualified therapists.  The students enabled the latter to manage their ‘hands on’ workload flexibly, whilst maintaining overall quality control of gym therapy.  It was impressive.

Over the weeks Carolie began to find renewed strength and flexibility.  The palsy on her left side was a major challenge.  With a lot of treadmill work and other strengthening exercises over many weeks she went from being wheelchair bound to walking with assistance for small stretches, including on a stair apparatus.  Upper limb therapies were an integral component of the overall strategy. 

Occupational therapists targeted her left side palsy with a range of activities, including showing her how to dress with limited left side mobility.  A glove was employed to encourage Carolie to favour her left hand in doing basic tasks.  A little later they encouraged her to try basic kitchen tasks such as making tea.  She is naturally left handed so palsy on this side was especially challenging.  It was important to position oneself on her left side to encourage left-sidedness responses and consciousness.  Her body had to revive communication channels between the brain and the complex processes that make up movement.  All manner of stimuli were employed to reawaken the ‘signals systems’ and the interconnected channels that enliven the limbs.

My core activity was to accompany her for a large share of the daily gym program.  I assisted with some of the routines such as sitting and standing exercises, and gentle encouragement to keep her going on certain tasks.  Her concentration wandered and tiredness would descend mid-activity.  Bouts of nausea continued to wrack her body and we frequently had to stop gym work to enable her stomach to settle.  Vomiting was debilitating and frustrating as it disrupted her physical progress.  Sometimes the urge to sleep would get the better of her but a fierce determination to recover her moorings would see her back in harness after short naps and drugs to ease the nausea.  It was harrowing at times but we ploughed on.

To be continued....

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

Continues...Carolie rejoins the blog

Eventually, I achieved my goal and was moved into the Rehabilitation Ward where I met some lovely older women who had also had strokes.  They were  more independent than I was,  and they were able to move about in wheelchairs, using their arms to propel themselves to the gym, the shower and to the dining room without needing a nurse, or one of the ward assistants.  I was determined to learn this new skill as I had never before propelled a wheelchair.  I was also anxious that I might fail;  the steering was confusing for me at first, and on a number of attempts I met with the wall.  Oops! 

I managed to follow others down a corridor to the dining room, where I learned to guide the wheelchair up to the table and to park between the white linen table napkins that had been set out before the evening meal.  At last I was able to have more solid food.  This proved a huge disappointment, as what sounded appetizing on the order sheet, filled out the previous day, was often tasteless and too salty, especially for people who were stroke victims. I was also challenged by having to use knives and forks, by myself.  My left hand ached when I tried to cut the tough chicken or roast, lamb or beef.  

One of the women, whose name was Shirley, was an artist with works, she said, hung in the National Gallery here in Canberra. Her daughter had brought in one of Shirley’s superb works to decorate the dull walls of the ward. Now that I had moved, I hoped that the singing could continue. But one of the sisters in charge was worried that it might disturb the other patients.  The other women were very happy to have the singing and would ask if the “choir” was coming today when they saw me at meal times in the dining room.   

Once I had moved to the new ward, Mark transferred the vibrant posters made by the children. Soon, there was a complaint from the sister in charge, about hanging things on the wall. I was distressed as the posters were my guide for the location of my bed. They were a happy reminder of my former life at school.  One of the girls who came to sing, helped solve the problem by making a hanging out of bright fabric on which cards and messages could be pinned. 

It was a delight to have community singing. Once the singing was accepted, with certain restrictions, it became a regular part of my gym therapy. A group of parents of the girls organised to bring them to the hospital on a regular basis. At one time when my speech had sufficiently improved, Mark brought in my mobile phone and I was able to make calls and to receive them. I had a call from a cousin who is a physio therapist; she was just about to board a plane and phoned me from the airport. Her last final words of advice were to “do what the physios say”. 

If I was in the gym, the singing group came into the gym and sang with me there. Other patients enjoyed the visits and joined in. They would look forward to these visits and would ask me if the “Choir” was coming today. As my balance improved, I was able to bob up and down in time with the beat. One day I noticed one of the other patients doing the same thing too. If I was in the ward then my visitors were encouraged to sing too. Soon my friend had put together a book with lyrics on the front of which was typed:

                                                   “Carolie’s Visitor’s

                                                         Song Book

                      A collection of songs that anybody can sing

                         To help with Carolie’s music rehab.

                      Please help to sing a song. It will do you good as well as Carolie.”  

 It certainly did me good, as well as being enjoyed by the other participants. One teacher later shared how much she had enjoyed singing “Eidelveiss”, from the “Sound of Music”, when visiting me in hospital. It was a regular request to be sung from one of the other patients, who enjoyed our singing. Eventually my singing improved and as we continued I was able to reach higher notes. The singing seemed to improve my speech as well and I became more confident to speak and more articulate.

One very enjoyable aspect of being on the Rehab. Ward, was the occasional visit to the Rehab. Kitchen, where I was supervised by occupational therapists making cups of tea. One of the assistants was a parent of a former pupil from my school. I greatly enjoyed our frequent conversations about the school and its fabulous music program and, also, the very supportive parent community.  

To be continued....

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

Continues....

The incident sent me on an exploration of other rehabilitation facilities in Canberra.  I discovered the only other facility of note was at a private hospital.  I arranged to meet with the Manager and was shown over the unit.  Patients are accommodated in single rooms and the unit has a more welcoming aspect.   

Although the unit had a hydrotherapy pool, the physiotherapy gym and services available for brain trauma recovery could not compete with the resources available at TCH.  I was forced to acknowledge this reality and again, putting personal ego aside, swallow my anger and persevere.  Carolie did not want to move in any case as she felt comfortable in her surroundings, and was largely unaware of my angst.

A reassuring factor was the presence on the ward of one of the healing beacons we encountered in the labyrinth; a further indicator of the potentialities of a genuinely patient-centred regime.  This finger post to a humanist healing modality came in the form of a doctor nearing the end of his hospital residency, when he must decide a specialization direction.  He combined a caring nature with high technical proficiency. Again, we had discovered someone who attended his duties with genuine enthusiasm, in the face of gruelling shift demands.  

The resident's calming presence helped us through the buffeting of crosswinds and ongoing worry over Carolie’s travails, not least of which was the persistent infection atop her skull.  On occasion he asked us if interns could perform some of the blood testing procedures on Carolie to gain experience.  I was ever mindful that both hospitals encountered in the labyrinth are teaching facilities.  Though they were somewhat chastened to discover their technical prowess had a way to travel, the cheerful enthusiasm of the interns leavened our mood.  Such mentoring could not be other than conducive to understanding the fundamentally human dimension of hospital medicine. 

The resident opted ultimately to work in hospice medicine, which would benefit greatly from his compassionate professionalism.

To be continued....

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

Continues...

Carolie could not stand by herself.  Her muscle wasting was such that she required an overhead support harness to walk on a treadmill.  With support she could stand for a moment to transfer to a wheelchair or to a toilet. Her immobility left her vulnerable to falls.  She had gone from an active professional woman to a mostly helpless chair bound invalid in the space of two months.   

Toileting remained a dangerous activity.  She fell off the toilet a couple more times while nurses left her unsupervised.  When someone with brain trauma falls it can be life threatening. There were many junior nurses on the ward who meant well, but who lacked the experience necessary to manage brain trauma patients without close supervision.  I had to complain to senior nurses to ensure supervision protocols were strictly observed during trips to the bathroom. 

The wonderful School of Music friends followed us to the ward.  Their singing efforts went unremarked initially by management but soon attracted the attention of one of the senior nurses, who complained they were too loud.  She had a patient who suffered from severe headache, but I question whether the complaint came from her.  I doubt her extremely debilitating condition would have been affected by beautiful singing.  I suspect it was another iteration of the ‘command and control’ approach that pervaded management of the ward.   

After a minor run in between our friends and this nurse we decided to limit the singing to the gym.  The senior physiotherapist was welcoming as music was played during gym sessions.  The extra stimulus of high quality live singing was a bonus.  The majority of patients responded positively to the singing, such that it became a regular fixture in late afternoon sessions in the gym.   

After one such singing session on a Sunday afternoon in the ward room - prior to the singers limiting their sessions to the gym (and outside on weekends) - our friends left Carolie sitting up in her wheelchair.  She would be uplifted by joining the singing and occasionally forget her physical limitations.  Just as some visiting children from her school and their parents were taking their leave she suddenly stood up in a farewell reflex.  She fell heavily to one side, bruising herself badly.   

On receiving a call from the ward I immediately drove anxiously to the hospital. On arrival a senior nurse proceeded to berate me about the singers leaving her unattended, despite this not being their concern as the visiting family had arrived.  I defended our friends stoutly and subsequently discovered it was the visiting family that triggered the accident.  Again, they would have no reason to assume any risk.  The nurse made it clear ‘the situation’ could not continue and that change would be made.  It was unclear what this meant but did not bode well to my ears – it was a portent of more ‘command and control’.  We did not have to wait long.

During a luncheon period I went to fetch something from Carolie’s room.  She remained in the dining room.  I was surprised to find unknown persons standing by the bed and her personal effects removed.  It quickly became apparent that Carolie had been moved without notice.  She was now accommodated in a room adjacent to the nurses’ station.  Her beautiful view on to flowers was gone; the room had damaged blinds so sunlight heat could not be managed as easily; it was noisier as immediately outside the room was an administrative area; and worst of all, Carolie had not been informed of the change.  

Nurse management had decided that Carolie needed to be closer to the station in case of further falls.  It was instructive that nurses continued to leave her unsupervised on the toilet.  For the second time on our labyrinthine journey I lost my temper.

 

Arcing with anger I returned to the dining room and made it very clear that I wanted to transfer Carolie to another facility.  After our treatment to this juncture by ward management I saw this as a bridge too far.  The place seemed mired in a time when patients were totally disempowered and subject to the whim of fierce nursing sisters.  Many a motion picture has focussed on the theme.  Flashes of One Flew Over the Cuckoo’s Nest kept 'gingering' my sense of this ward culture.  I refused to be bound by the ‘givens’ in this particular time warp.  This time I did the berating, reducing the same senior nurse to tears in the process. 

The nurse was fairly tough but maybe unused to having to deal with someone articulate and determined, who had dealt with much tougher souls, and who was as angry as I was.  On cue, after a little dust had settled, the ward boss reappeared to again put me in my place and upbraid me for ‘abusing’ her staff.  She agreed the shift manager had done the wrong thing by not consulting with us but that did not excuse my treatment of her staff member.  

I indicated to her that the conversation was pointless as she was about ‘command and control’ and nothing I could say would change that.  I defended the accusation of ‘abuse’, replying that although I was truly angry I had not used any terms of abuse, which was true.   She tried to twist my evident anger into a ‘personal problem’ - perhaps I needed counselling.  No, what we needed was to be treated with respect and not disempowered.  My ‘Red Queen’ alert was screeching:

          ‘Speak when you’re spoken to!’ the Red Queen sharply interrupted her.

            ‘But if everybody obeyed that rule’, said Alice, who was always ready for a little argument, ‘and if you only spoke when you were spoken to, and the other person always waited for you to begin, you see nobody would ever say anything, so that—‘

            ‘Ridiculous!’ cried the Queen.*

To be continued....

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* Lewis Carroll, Through the Looking-Glass, The Folio Society, London, 1962, p. 109