30 March 2017;
I have struggled with this update as it is once again about the disappointments, bad news and yet another negative outcome. On top of our continually increasing daily struggles the blows just seem to keep on coming for us.
We faced more doubts and questions when Aaron got results back from nerve function testing he had a few weeks ago. Yet another fail, or in simple terms, his MS is, as we know progressing, and now the message isn’t getting through to his bowels anymore either. ☹
So, after yet another visit to a specialist and another wait and another referral it’s off to the Spinal Clinic we go (after we have waited out the painful 8 weeks for the 1st available appointment).
That wait isn’t pleasant. We are still struggling to find carers to assist with Aaron’s daily physio stretching needs and perhaps a few household tasks to lighten my load.
Apparently 1 hr a day, 5 days a week with an extra 1.5-2 hrs paid work once a week is an impossible position to fill?! I thought work was work and money was money for carers? It’s not a difficult job!
After a long search (11 weeks and 4 unsuitable carers so far!) we found and booked a potentially suitable person for training at our home with the Physio for last Friday. #5 cancelled at 6:30pm Thursday….too late to cancel the Physio = one less physio session available from our funding package.
We thought our luck had changed when #6 potential carer was found over the weekend and visited us Monday. He seemed to fit the match and Aaron thought he would be good at the job. Only we were informed by email the next day that #6 can’t travel the distance for only 1 hr per day nor is he keen on offering cleaning or washing services. With advance notice, a clear description of what our needs are and where we are, it shouldn’t be so hard.
So, it is back to waiting to see any of the 4 agencies we have searching can find what we hope will be lucky #7.
We had the opportunity to visit Independent Living Specialists display warehouse last week, and our new Occupational Therapist showed us what equipment’s available and now considered essential equipment primarily for safety and for Aaron’s overall health and wellbeing.
Aaron trialled a safe and suitable shower commode and was stoked to trial a “smart drive” for his manual wheelchair. The OT will complete a report (when he returns from Country visits in 1-2 weeks) and then an application will be put in to NDIS for the funding.
‘If’ they approve any or all of the equipment, a process that can take anywhere up to 3 – 4 months and once there is funding available, it would be paid for and ordered. In short it might be another 6+ months, at least, before we get equipment we are desperate for NOW.
Oh but the government will tell you that NDIS is all about the participant and what they need. What they DON’T mention is it’s relevant as long as it meets the NDIS strict requirements and that there is actually funding available!?
Living with a progressive condition means goal posts are continually changing and our equipment needs are increasing. NDIS does not account for that. Once again proving that disability is for the rich ☹
We are already dealing with no quality of life, stretched finances, stress on top of stress every single day, waiting, waiting, and more waiting. We are in an unhappy, depressing place, and we are losing a battle against a disease that has paralysed and disabled Aaron far too young.
MS is a disease that has put us in a place where we don’t fit and where we are not accepted anymore.
Amidst all the challenges and negatives we continually face we were invited as a family to visit a ‘purpose built resort for people living with spinal injury’. We were shown the amazing facilities on offer to people living with a spinal injury and their families.
I should have known it was all too good to be true.
The resort has 17 self-contained apartments that have been thoughtfully designed to completely accommodate people who have spinal injury/wheelchairs, they have all the modern modifications you can imagine – all that make life self-sufficient for an acquired paraplegic like Aaron. They have carers available and wheelchair friendly activities on offer that really made Aaron feel alive again, he felt comfortable, he relaxed, he really opened up and talked to other people in wheelchairs. Aaron was socialising again. It was amazing.
The experience encouraged us to believe we may have the real possibility of a family holiday together. A holiday without all the struggles that go with needing wheelchairs and shower commodes and hospital grade beds and hoists etc. It also offered a holiday that would include respite for me, something I not only would like but need for my own health and mental wellbeing. Family holidays or quick getaways are sadly not within our reach. It’s impossible to even use resorts or facilities that have wheelchair friendly or standard disability rooms anymore, Aaron’s needs are just too high.
On the rare occasion that we may need to travel now, (usually only out of necessity for medical reasons) we have to cart half the house along with us (read “I have to pack and organise to take half the house”). It isn’t easy or relaxing, it’s work. It is not conducive to a holiday, and it certainly doesn’t include any respite. ☹
That amazing feeling of inclusion and acceptance and a place Aaron finally felt he fit in, along with the thoughts of a holiday and any respite were short lived.
While fitting the criteria and medical definition of a “Spinal Injury” for 90% of organisations, Aaron’s condition is “non-traumatic” and “progressive” he does not fit the vision for the Spinal Injury resort.
I completely understand and appreciate that they need to have criteria, ‘conditions’ and certain ‘terms’ that they need people to meet for them to be suitable to stay.
I understand that they are funded and run by a ‘Foundation’ whose objective is to support people living with ‘Spinal Injury’.
What I don’t understand is why a person with a progressive spinal injury (meaning it is technically killing them and therefore a place like this would greatly benefit them) would be excluded?
I understand they cannot accept palliative clients or clients with very high needs that they are unable to meet, but self-sufficient acquired paraplegics are not accepted if they are progressive?
I would understand the priority acceptance of only traumatic or permanent spinal injury but not progressive spinal injuries if the facility were booked to capacity, or if priority was given to ‘traumatic spinal injury’ over ‘non-traumatic spinal injury’ and then ‘progressive spinal injury’, but I do not believe that the facility is anywhere near booked to capacity.
Rules are rules, and there’s criteria to be met. Sigh.
Aaron is now more existing rather than living with a degenerative progressive disease. MS has completely paralysed him from the waist down, and is killing him from the inside out. It’s is a lot for a young family to cope with and sadly in this case it’s my family.
Right now, Aaron still wants to be as self-sufficient as possible, to and try to get some enjoyment and quality of life for as long as he can. I want that for him too.
He also wants his family to have fun, together, not just face the gloom that we live 24/7/365.
He deserves it, so do we and the rejection hurts.
Disappointment and rejection is now our normal, and yet again Aaron struggles with where he fits in. The continual knocks exacerbate his symptoms and quite likely increase the progression of his disease.
And so we wait.
We wait for doctors and specialists, we wait for clinic appointments, carers, funding approval for essential equipment. We wait for a friend to phone or drop in and hangout and watch a movie with Aaron, we wait for a phone call with someone saying “yes, we can help”.
Some of these things may happen, sadly many will not.
It’s strange how those with the least time, have to wait the longest.