Journey

It has been hard to get back into routine.  We had a wonderful 10 days in Australia.  Travel with Rory is challenging for him, and us, but it was better than we expected.  I think it has ignited wanderlust.  We now have a strong desire to wander and explore more of the world. 

Our sad news this fortnight is the loss of Support Carer Tash.  She has been offered a full-time job and starts in two weeks.  Tash has been working with Rory for three years, 2.5 days a week.  Her presence in our lives gave Rory much needed independence and allowed myself, and now Sean, to work.  We trust Tash with Rory and his affairs i.e. medical appointments, odd jobs, helping him with money.  Support care is intimate work within your family and in your home.  Good Support Carers become part of your family in a way.  They are very hard to recruit and even harder to retain for a decent length of time.  ACC pays Support Carers as contractors which puts a lot of people off.  It will be hard to replace Tash and take considerable work.

Rory and I attended the final session of ‘A Good Life’ workshop series.  I was moved to tears by the guest speaker, a young man in our community with Down Syndrome.  He is running his own micro-business, acts as a DJ on a radio station, volunteers at the Hospice and in demand as a motivational speaker.  He was best man at his brother’s wedding where he gave a speech.  He has recently bought his own home and dog.  It was truly inspirational what he had achieved with the phenomenal support of his family.  It gave me hope for the future for Rory.  We continue to live day by day.  It is a necessity as the late effects of cancer and its treatment keep coming, some slowly and insidiously and others like a meteorite strike with no warning.  The workshops have made me lift my head from the day-to-day to look down the road and consider what a good life for Rory would be. 

Rory has had three medical-related appointments.  He saw Dermatologist Lisa who is arranging for a mole to be removed from his back.  It is in the radiation field and Rory is at risk of skin cancer.  We had a visit from ACC OT Dianne to discuss moving Rory to the largest bedroom in the house to give him more space as a young adult.  We need to make the ensuite toilet safe for him to use at night.  We also discussed mobility scooter options and the challenges we have observed with the powered wheelchair trials.  Rory has also seen the Speech and Language Therapist at the hospital to check on his swallowing function.  This is to rule out aspirating on his food as a cause of the coughing and hospitalisation with chest issues this year.  It will likely require follow up investigation in Whanganui in the New Year.  Today Rory hung out with Support Carer Shelley so Sean, Colt and I could slip away to stretch our legs at Parininihi.