It’s now over a week since I attended the Leeds Dementia Board to share my story as a working carer and to hear the journey of other carers looking after family members with different forms and stages of dementia. So I think enough time has passed by to now make sense of what I heard and what I learned.
I was invited to the Leeds Dementia Board – ‘Carers Takeover’ by Tim Sanders the lead on Dementia for Adult Social Care at Leeds City Council. I was really chuffed to be invited and be able to share my story with another key audience in the city. There are many people rooting for the improvement of the carers experience in Leeds and it was quite nerve racking to meet them. I was one of six carers sharing stories that day and it became very clear how different the carer experience could be. You can be a husband/wife, daughter/son… you can live with the person, you can live near by and help from home or you can be working full-time and juggling the everyday challenges and tasks of dementia care.
The one thing that was very loud in the room was just how much the carers loved their relatives. I’ve had a number of discussions about this, most recently at the weekly twitter chat #AlzChat (8pm Mondays) and our conclusions were that loving your relative or person you are caring for is a key resource on the journey. If there is one good thing on the carer journey it is ‘realising that love’ both in the work you do and the moments you share of just being together and enjoying each other’s company. When you love, you don’t give up, you keep fighting, you try to understand to make life as good as possible.
The carers shared another experience and that was being driven (far) beyond their personal limits of energy, resourcefulness and understanding either of the condition you were managing or the dementia service support ‘systems’ you were left to navigate often in a crisis and annoyingly, too often alone. One carer shared their experience of having had 30 years of experience looking after a relative with special needs, and them having a care support worker… every other carer in the room gasped. ‘What is a Care Support Worker?’ It isn’t that carer support is not out there at the moment, but that it is not an automatic given, when you become a carer. But this carer with 30 years experience was left aghast… coming to terms with a totally different kind of care, more searching, more painful, more confusing than their previous experience.
I shared my story of having been an information junky after my Dad’s diagnosis, using my research skills and internet know-how to get the information and find the human support I needed to look after my Dad and at the same time look after me. It was quite a shock to me that not everyone has those skills and not everyone can access the information I had either because they were not online or they were working or they just didn’t know there was any help out there.
Noone is born with the skills to be a carer and particularly a family dementia carer… but there are really helpful skills, tools and mindsets that can be shared and learned. I now realise how incredibly lucky I was to catch the Leeds Dementia Diagnosis system when I did in June 2009, sadly not still in place. I was given support in the form of a Memory Nurse for Dad; an Alzheimer’s Carers support worker for me, to come to terms with Alzheimer’s diagnosis, care and planning; and Carers Leeds on the phone at key times when I needed them either to listen to me or help me navigate the spiders web of services and local know-how.
In dementia care you feel like you are often set up to fail – but thankfully I had the opportunity to do some training in my time as a carer, I needed support so I searched everywhere to get the information/skills and insights I needed. But it was clear from this gathering of carers that not everyone finds this opportunity, has the time to go seeking it out or realises that it might help.
Val Hewison pictured above is the lead at Carers Leeds and she definitely has ‘the carer’s needs’ front of mind. The Carers Leeds team offer training and lots of hard earned know-how. I can’t thank Carers Leeds enough for their support over my six years as a carer – they helped me stay on track. I’d also like to thank Val, for being able to see the needs of Working Carers – I look forward to our continued conversation and future collaborations.
A new team of Memory Support Workers are starting their training next week in Leeds and I am delighted to have the opportunity to share my carer story with them and be invited to connect to a growing community of Leeds Dementia Care Know-How for all of us involved in dementia care, whatever our role, across the city. We’ll be stronger together!