OSCILLATE
VACATION
EBULLIENT
METTLE
BUREAUCRACY
ELOQUENT
REHABILITATION
NEGATION (n) a negative statement, denial; the opposite or absence of something; a contradiction
The meaning of this word aptly describes our recent visit to the rehabilitation centre of Western Australia. There were no positives, no confirmations of the positive advances in recovery Kevin has made (these were documented and a DVD with footage of Kevin was sent to give an understanding of where Kevin is at now, but this was not even looked at by the staff member in charge of Kevin’s rehabilitation).
The absence of guidance and direction smacked us in the face once again. When asked ‘who was meant to be driving Kevin’s case’, we were bluntly told that ‘there was nothing to drive’! Apart form showing a distinct lack of sensitivity, is this true denial or just a plain lack of interest and a loss of passion for the job??
The contradiction is that other very experienced health professionals that we have sort privately are very optimistic that Kevin will walk again if the right support is available; sure this support might be at home, but let’s not just give up.
So we are on our own once again. Many thanks, however, to Kev’s Case Manager at the State Head Injury Unit (SHIU) in Perth, the physiotherapist at Epworth in Melbourne from whom we are seeking advice, our local physio, positive support from the private neurosurgeon and neurologist, and our great Support Workers.
The State’s contribution is the SHIU and the Support Workers, for whose education on the job I am responsible. So we fly by the seat of our pants and ‘Operation Tootsie’ is formulated; the plan is to have three daily sessions on Kev’s feet, using a mixture of physio therapy and Feldenkries therapy.
OSCILLATE (vi) to swing back and forward as a pendulum; to waver
Aptly describing Kevin’s progress, some days/weeks are full of excitement as we think we have finally picked up the momentum of some type of routine, then lo and behold everything does a 360 and leaves us spinning and trying to work out why and what next.
Just now we are dealing with another patch of extreme exhaustion and lots of sleeping; this may last a few days or even a week or more.
Kev was continent for a number of weeks, but we have returned to major difficulties.
I liken this part of Kev’s recovery to the incoming tide: the waves sweep in and out and yet the tide is still rising. We do not know how long the tide will take to come in or where his high tide will be.
VACATION (n) a period away from work, for travel, rest and recreation
We took Kevin on a ‘trial vacation’ for 2 nights up to Perth and stayed in a motel. He found this challenging; however, since he was out of his comfort zone he had to use a lot more language. On the first afternoon we thought we might have to abandon the trip, but with the arrival of Natahlia and Brenna and the support of Paula we managed the 2 nights and 3 days. Kev really didn’t do a lot as he really loves being in the car and for the last 6 weeks has found it difficult to leave this haven of security.
EBULLIENT (adj) exuberant, enthusiastic
An apt description of Kev’s interaction with friends, acquaintances and the general public during his outings in the ute. He waves to everyone and calls out a clear ‘Hello’ to all. He is thrilled when people respond with a return hello or a few words, giving him the opportunity to converse with his flash-card statements.
Kev is also ebullient now when it comes to standing in the shower; holding on to a high grab rail, with a rolled towel under his feet, he is able to have a good stretch and stand for just over 2 minutes at a time.
METTLE (n) courage, spirit
Mettle is certainly necessary to continue the journey. It is difficult at times to keep up the motivation, to continue the brave battle of organising and rehabilitating body and mind.
Kev’s latest display of this quality is use of the tilt table to assist in weight-bearing and stretching his Achilles tendons, to optimise the use of his legs and the eventual ability to walk.
BUREAUCRACY (n) a system of government where administration is organised in a hierarchy; the government collectively; excessive paperwork and red tape
The red tape definitely applies; nothing gets done without pushing up hill and there is still plenty to do regarding tying up the loose ends and then some.
It seems that everyone likes to refer to someone else, and after much time energy and money one has done a full circle and no-one takes the reins, yet if I try to do so it is frowned upon by the professionals because it is their job!! Perhaps this might be termed ‘professional jealousy’?
At the end of the day the squeaky wheel gets oiled first, but it takes an incredible amount of energy to squeak loud enough to be heard.
Head injury and the overwhelming destructive effects are not a priority for this government; baby bonuses and sports promotions are. Repetitive funding for cancer and child health are great but, hey, it is the people who need the greatest assistance with rehab who are ignored and thrown away. Those whose needs are greatest are given the least help; what justice is there in this? There is no credit for a profession if they can’t fix it to an extent that satisfies their particular criteria, and it seems any increase in an individual’s quality of life is just not worth the input if it doesn’t reach that certain level.
ELOQUENT (adj) speaking and writing, fluent and powerful
Kev’s progress in this regard may not be termed ‘eloquent’ by the general public, but it is music to our ears as he becomes more fluent with his flash cards and as his voice gathers power and a little pitch and tone.
I have spoken to one family whose loved one took 3 years to speak again, so good on you Kev, it’s only been 18 months and there is definite steady progress.
REHABILITATION (n) to put back in good condition; to restore to rights or privileges; (sick person etc.) to help to adjust to normal conditions after illness
As a result of Kevin’s resistance, formal rehab is not an option at this time; however, we did ask for assistance in a home programme and a review by the physiotherapist at Shenton Park Rehab Unit in Perth. We were after guidance, not looking to suck away their precious resources that I am well aware are used on people who are just as deserving as Kev and not nearly as advanced in their personal rehabilitation.
We are looking for guidance and planning, general goal-setting; someone to sit in the driver’s seat for this journey. I was shocked when told there was ‘nothing to drive’.
I was even more stunned when discussing Kev’s ability to walk again with the same ‘health professional’, that they said that they ‘would love to win Lotto, but that it also was highly improbable’!! Sorry, did I say ‘professional’?
To me, there is no comparison: Kev has the desire to walk and his body has the capability. To get his feet flat and then get help him to regain his balance and confidence will take time and effort, but is highly probable (and this has been inferred and even stated outright by other true professionals), whereas the chance of a good lotto win is probably equal to the chance of you or I being struck by lightning.
So, really, there is no comparison at all!
*****
I just wonder what is happening in the lives of some of the people who are responsible for not only the immediate well-being of their clients, but the domino effect upon all those who are directly and indirectly involved with their clients. It makes me wonder about the remuneration and fringe benefits received by those holding these positions – they are public servants, and it is we who pay their wages. I often feel that not only is there a huge lack of compassion, but there also appears to have been a hardening of their souls, such that they have lost the passion that must have originally driven them to the career in the first place.
Rehab should be constructive, not destructive (see again the definition above).
I come away feeling hopeless and intimidated, abandoned.
Click here to see more photos from November.
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