Working together…


Six years of family caregiving taught me a lot, not least the power of good people working together as a team. This diagram shows a person living in their own home, supported by a family member/advocate, then supported by a whole community of people doing all the jobs needed to keep someone well in their own home.

This diagram mirrors my own experience, the strange thing is that not all the team(s) knew each other. They never got together as one whole group and they didn’t know all the other teams that existed. They definitely didn’t all exchange information and they may or may not have had the right information at any point. But whenever they met me/or called me on the phone they could connect to the team, check what the latest information/status was and support accordingly – they were my Dad’s care team.

This was my challenge for six years – being the person that enabled carer/service teams to get the right information at the right time; being the person that bridged all the different people in the team so that insights could be shared and the right care could be delivered and planned for at each intervention/meeting/exchange point in the six year journey.

So what am I thinking about this #carersweek 18 months after my carer role finished? I’m thinking the job was too much… but that I would do the same again if the need arose for someone I loved – that’s just what you do isn’t it?

I knew what I needed as a working family carer but existing services didn’t seem to link up. I needed to know someone who knew the care field and if there was anything/anyone/any service to help. Thankfully for me the third sector were there to help support. I cannot thank  Carers Leeds and the Alzheimers Society enough, I don’t know what I would have done without them.

I’m really thankful that #carersweek exists and we can all just stop for a minute and maybe consider… what is a carer? …what’s it really like being a carer? …will I ever be a carer? For me care is a precious thing both to receive and maybe even more so to give – I learned so much thanks in part to those who joined me on my carer journey.

I’d just like to say to all our team again… Thank you!










I’m a Dementia Friend

cropped-Dementia_Friends_RGB_landI’d heard a lot about the dementia friends initiative by the Alzheimer’s Society last year and signed up to find out more… but being busy with setting up a new business and life generally I didn’t follow  it up. Then serendipity paid a visit and while taking time out to find creative inspiration at the Chirpy Store in Chapel Allerton I met a Dementia Friend – the store owner Harriet. I’d gone into the shop to look at the shop and their art classes… but I came out of the shop with so much more. Harriet told me about the short training course being run in Chapel Allerton and how they are aiming to make Chapel Allerton truly dementia friendly as a community of shop keepers and as a wider community. She didn’t wince at me saying I was a dementia carer and I felt accepted and understood.

For me this made my hidden underground role of being a family dementia caregiver/care manager transform in an instant… no longer something to avoid mentioning socially and became something that was accepted and ‘normal’.

Over five years in my family care giving role it has been difficult to connect with others in the same position. If I say I’ve found support in Scotland, London, USA and Canada more than in Leeds – what would you say? I’m really delighted to have the support of online friends around the UK and the world, but it must be time to find some more local pals. Being in my mid 40s , working full-time and being the only family carer for my father has meant connecting with day services and others in the same boat difficult. All those informal connections I’d make if I was older, in a closer community, not working, have just not been possible. So seeing the bright Dementia Friends Badge in the Chirpy Store switched on a light  for me.

I followed up my conversation with Harriet by going online to the Dementia Friends website  and found a session running locally in Chapel Allerton, Leeds the following week. The meeting was at Inkwell, easy to get to and I found a very warm welcome by the 20 or so other people that were there when I arrived. Our group had a memory consultant, OT, builders of carehomes, new and old carers, person with dementia, family and friends, other service professionals… it was an ideal group to get a broad view of what dementia was and how it effected us as a community. The course was run by Gemma from Royal Voluntary Service Leeds and she took us through a light touch informative view of what dementia is and how it effects people in different ways.

The initial aim of the Dementia Friends course is to raise awareness and as a result enable people to help each other better in the community… this group seemed to have an extra dimension – “We’ve just found out our relative has a diagnosis of dementia – What do we do? Who can help?” I ended up sharing my insights with people on Carers Leeds, Alzheimer’s Society and digital tools that have helped me in my role. The thing that the services often miss is… their services are not common knowledge and there is no ‘open’ community of help in the city to enable learning and support. I left the meeting thinking… I’d love to keep in touch with these people to help us all work together and make things better.

I keep considering the model of NCT (National Childbirth Trust) as a support system for people moving into a new and challenging role and how we could make something like that work for dementia – but it would take more than me to develop it. I used to say…”You can plan holidays, plan education, plan life in many dimensions, but the one thing I really need to plan is my Dad’s future care and it seems far too difficult/impossible.” Maybe Dementia Friends is the beginning of reintroducing community thinking and a way to start supporting people with dementia and their carers as they go through life… and stop it being hidden and over feared.

In July 2013 I went to the 7 Arts Bar IMG_1664and found the ‘Before I die…’ wall. IMG_1673I felt prompted to write this  “See Dementia open and not be scary…” this felt like an isolated cry at that point. So I’m delighted to see the Dementia Friends initiative starting to do this.

Dementia Friends training is open to all… so if you can make time, go along and help us make Leeds a dementia friendly city for all of us.