These notes summarize the discussion in the Conference Session where the partners and carers of the POTers shared their experiences on the topic of “Carers”.

Comments and Observations

• In your mind – “if you don’t mind it doesn’t matter” – psychological issues for POTers (medications and life-style changes) are real and need to be paid attention to.
• Mechanical issues may need some attention, e.g. going down a ramp, shopping trolley on front of wheelchair – shopping trolley has no brakes!
• When there are lots of medications – important to have it in a dispenser organised by days.
• Used recipe books to learn to cook for the first time.
• Need to be organised and disciplined – difficult to forsee changes and see into the future, but take it day to day – airports/travel difficult with a wheelchair and 2 suitcases even though airlines help in the airport they can’t help out at the car etc.
• Your life changes and there is no training – for better or for worse – pink jobs and blue jobs and now I do more pink jobs! – is there a vacuum support group? – cooking is a team effort and both enjoy this together – travel strategies for airports and bus stops, very positive, fulfilling life, not slowing down just using different tools to make lives fulfilling as a team – hoping to keep in contact and use this group for support.
• Doesn’t feel like a carer at the moment but feels like he will have to learn to be in the future – fine line preserving her independence
• Good news/bad news story – compared to others – good news is no medication at the moment – bad news is a look into the future to see what it may hold for her – looking after her mother so she is a carer herself and determined to do everything, including gardening – doesn’t see himself as a carer – he is very proud of her.
• She is a Chef so she cooks and he does the dishes and then just keeps out of the way – common theme is the support from this group and waiting to see what the future will bring.
• All the men need a robot vacuum!
• She is independent – “her way or the highway” – he gets into trouble for reading labels in the supermarket, but then he checks out while she sits in the car – helps with washing and hanging out – locks himself in a room when cleaning so she can’t get in and see what he’s doing!  Unless stressed she is good and he needs to be careful of that, so need to have holidays while you can.
• Independent lady took a long time to diagnose POT and then it made a big difference just knowing – shopping & vacuuming comes naturally to him – she vehemently refuses to watch cooking shows, so he cooks – senior assessment recommended and applied for a carers allowance – paperwork took months, accountants, finally refused on the grounds of not having foster children! – get along fine now with lots of mobility aids – this conference has been terrific amongst friends, superb camaraderie.