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...
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