Journey

Most people don’t appreciate Rory cannot be left alone.  The combination of cognitive and physical impairments mean it is unsafe for him to be by himself.  He needs supervision or support to do most of the everyday things we take for granted and is at high risk of choking or falls.  Due to the radiotherapy he is also at elevated risk of a serious medical event like a stroke or seizure.  We plan our lives around providing continuous adult support.  However, this means Sean and I rarely get out on our own.  In about a month we are planning to go away for a night for our 25 year anniversary.  To do so we need to find respite care for Rory in a nice safe place.  It is likely big brother Sam and Caitlyn will take care of Colt.  ACC are helping us organise respite.  This fortnight Rory had his first visit to Wesley House in New Plymouth.  They provide long term care and rehabilitative services for people who have suffered acquired and traumatic brain injury through accidents.  Rory was initially resistant to the idea of staying in a facility but after visiting, and seeing how nice it was, he thought it would be ok. 

I have had my monthly phone call with Rory’s ACC case worker Jes.  Even though we have achieved a lot with ACC over the last 18 months there are still things we are working on.  One is finalising an indoor and an outdoor powerchair for Rory.  We have had another trial with OT Coralie.  This was with an A1 Frontier V6 Powerchair  https://www.a1wheelchairs.co.nz/all-terrain-powerchairs .  When Rory was in the chair it was like I could see a door open.  It was closer to what we were aiming for.  I was very excited about the possibility of where we could go outdoors with Rory in future, rather than leave him behind.  In the wet weather he drove it on the football field, along a gravel track, uneven footpath and up and down the kerb.  While Rory learns how to control the chair mental fatigue will be an issue but we can work up to his potential. 

Rory has had two visits from ACC Physio Josh.  Josh keeps stressing how important it is for Rory to take brain breaks.  This consists of sitting down in a comfortable place, putting an eye mask on to block out the light and resting for 10 minutes, in the morning and afternoon.  Rory doesn’t place much steed in this but when he tried this week with Tash he promptly fell asleep for 10 minutes.  Rory’s cough persists so he is booked in for a chest x-ray in two weeks.  Peter is still in a cast as a result of surgery so Sean continues to fill in at NP Mens Shed on a Thursday morning.  Rory and I attended the second session of the Kia Roha Disability workshop.  The focus was on natural and formal supports.  Rory checked out a potential new volunteering opportunity last week with the Community Café run by the Taranaki Cathedral.  Volunteers put on breakfast to anyone who wants it for a small donation.  I was hoping it might expand Rory’s social network and provide him an opportunity to use his cooking skills.  Unfortunately like so many other places there wasn’t adequate room for him to manoeuvre with a walker or work at a station, and no task suitable for his abilities.