Dementia awareness – Handbagwarrior; verbal ramblings

Change of site name!

Some of you who read my posts may have notices that I have changed the name of my page. It used to be ‘Before I Forget’, and I realised that there are so many pages with that name which may be more important than mine so thought of a new name.

My URL is http://www.handbagwarrior.com, the domain which I bought a year or so ago, and I identify with the name handbagwarrior in my passion for helping to educate my local town about living with Dementia. I sometime feel like a warrior trying to support my local community to stop being ashamed of the diagnosis and to start looking at how people can live well. So, for me the most natural name for my site is Handbagwarrior: Dementia and me. It has been a long struggle for me to identify who I am now. No matter how others see me, it is how I feel about myself that I needed to change. For a long time I have felt lost as me, when you leave work because of illness you lose your identity initially and when your illness is Dementia it felt like all that I had been disappeared then.

Today I am firmly ensconced in my new community. I am a handbagwarrior in bringing about change in how dementia is seen within the community, and the provision for younger people and those with early diagnosis. I work hard networking and trying to change perceptions. I have set up a peer support group ‘Lets Meet Up, peer support group‘, and am formalising the constitution for the umbrella group of ‘Lets Meet Up’. So under this umbrella is also Lets meet up Art and Social Group. Constituting the group will enable us to raise our own funds with the sale of things that the Art Group can produce. My next challenge is to find a permanent home for the group to meet in every week. My dream would be to have an empty shop to open up a Community Hub in. Somewhere that groups such as ours can meet on a regular basis, a place that can house information about all the groups and charities that are available in the area. Lots of peer support groups look for somewhere to meet, so I don’t think it would be hard to fill the place. I have already made some noise regarding this and fingers crossed this will happen within the next year. Of course its not just me doing this, I do have a side-kick, Lynn B. She is a tireless whirlwind! and we bounce off each other as we attend meetings, appointments and network together to achieve what we need. We are the working group of Dementia Friendly Seaham so there is a cross over in our endeavours.

So, my dementia is very slow progressing and during this time I have a need to get done as much as I can within my community for other like myself.

So, that is why I have changed the name. 😁

Gill x

“Nothing about us without us”

Why is this a hard concept to get. There are some truly lovely, and wonderful people wanting to offer people living with dementia activities in the community.

My word of advice as someone living with dementia:

Know your community
Make sure you do not do anything without having someone living with dementia to consult with. If these are the people you are doing things for, then ask them first.

What if you have no one to ask? What! Why on earth are you starting things for people without reaching out to them first? Do you see what I am saying here? If you have no one to ask then you don’t know who is in your community who need your help in accessing activities or support.

Does your GP Surgery/Memory Clinic signpost your activity to people who are newly diagnosed living with a memory issue or dementia? These are the people who need peer support and acitivities. First build relationships with your medical centres so that they can tell someone newly diagnosed there is peer support for them to access. Otherwise they can feel that life is over, that there is nothing for them to do other than let their families take over and sit and make the best out of nothing.

Here in the North East of England, DEMENTIA is a word that no-one will speak. It appears to be a word to be ashamed of. Families hide it away within themselves, and will only speak it when talking about having had a member who had ‘it’ – Said with such sadness and dread that requires the voice to lower a little.

I am trying, so so hard to change this in my local town. I am now having to tell people if you want to reach people living with an early diagnosis then never, have the word ‘dementia‘ prominently in your name or description. Instead focus on the word ‘memory’ difficulties with the additive of dementia hidden at the end. Do I think this is a bad thing? No certainly not especially in an area that is not yet open to being open about dementia. Who cares what it is called as long as people can access it whilst attitudes change slowly.

At the moment I feel alone in being involved in starting support/activity groups up because I am yet to be put in touch with others like me living with this disease. They are around because I am told they are…..and that is where it ends… If it were not for the few wonderful people who are passionate about changing our town then I think it would be hopeless.

It’s funny because you can see the other small towns where they have groups for people with dementia that is not focussed on early onset/diagnoses, because their posters and wording is very professional like, and ‘correct’. It is all about them doing things for us, and whilst that is fantastic, it is all encompassing and not for the likes of younger diagnosed people such as myself.

I was part of a conversation the other day that was being had about groups in my Town, and someone saying “what we need is a minibus to take people to other nearby towns to join in activities”. NO, what we need is for someone to ask ME, and others like me in my town what WE want. Sorry, did I shout there. Anyway, there will be a group/meeting/for people who are living with diagnosis of memory difficulties, MCI, and dementia to see if we can first reach people who are around locally. Small steps.

Dementia Action Week for me

Good grief time flies.

Dementia Action Week was all go! On the Tuesday I was at the launching of Dementia Friendly Murton working group, which I might add was a fabulous decorative do, with a spread of the most delicious looking home baked cakes, and sandwiches you could ever wish for. The Ribbon Academy, Primary School children were absolutely delightful, they sang a couple of songs, and came round to everybody in the room to chat. All sporting their Dementia Friends badges on their left collar (as suggested by one of the pupils), they embodied what being dementia friendly is about. I spoke to them about the importance of becoming a dementia friendly community from the view of someone living with dementia, which was followed by filmed ‘Ask me anything’ questions. Two girls, Molly and…I can’t remember her name got together and thought up the questions together. My word I am so glad these children are our future. They get it. They understand why learning and knowing can help people living with dementia. Some good question were asked, one with nearly stumped me; “what do you find most frustrating?” I could think of a thousand answers but it had to be a short bite size one, so the only one I could think of at the time was losing things in my house after I had put it away safely!

The Thursday was to give two Dementia Friends sessions to parents of Seaham Trinity School children who had already had their sessions, but, no one turned up! Not in the morning, nor in the afternoon. I can say that the Head was not happy. Shame on the mums and dads. Next time maybe.

Friday we had a stand in the local Byron Place Shopping Centre, kindly offered us by the Gemma Stokoe, management of the centre who is firmly committed to becoming Dementia Friendly. It certainly is great to have support and commitment of local businesses. This was an information day, and lots of people asked us for leaflets and information. I found it sad to see some people lower their heads and walk past as I feel that they are the people who probably wanted to ask for information but were afraid to. In close communities that have pulled together in tough times for years gone by, Dementia is still a stigma in families. They are hiding it away inside their families. Oh how I feel for them, I want to say “what if you could talk to someone, get some support. Feel the relief of someone who talk to you, and help make things easier for you. Make the life of your person brighter by giving them an opportunity to attend groups”.

So Dementia Action Week was a positive week even though I got really stressed and anxious before hand.

I became a Dementia Friends Champion

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Last week I attended a session to become a Dementia Friends Champion. I guess there were around 15 of us from all walks of life and jobs but I was the only person living with Dementia. Obviously when I go places it is not something I announce to the world and his wife, why would I?

Why was I there? I’ve already accompanied others when they have delivered Dementia Friends Sessions to both adults and children in local schools as part of working towards becoming a Dementia Friendly Community, with the steering group Dementia Friendly Seaham. So it seemed natural that I could start delivering them myself at some point. Becoming a Dementia Champion you start by committing to delivering one session in the first four months, and that can be to just one person (family and friends) or to a group of people (etc workplace).

Getting back to the information day. I am not sure how I felt at first, listening to the facilitator talk about ‘people living with dementia‘, as it felt like he wasn’t talking about me. It is a very strange place to be, listening and ‘learning’ to read a script educating others about dementia. I somehow felt detached emotionally from the whole event, even though inside I kept thinking “this is about me”.

The script is necessary because it is about facts, and gives standard information that is not personal but really informative. Every dementia friends session given around the country will be the same. This is how information works best and Dementia Friends Sessions are so, so important to educate as many people as possible about how, individually, they can make a difference. It is as simple as being aware of how a person living with dementia can see the world around them. Example – Black door mats = holes in the floor, or difficulty counting money at a supermarket checkout slowing everyone up. Those are just a couple of small examples. For me the real bonus is about people just learning to have a bit of understanding about the many difficulties of living with dementia.

So, here I am in this Dementia Champion Session feeling somewhat disconnected from everyone around me, obviously this was just a person introspection of mine and not in anyway about the people I was with. I think that sometimes I just wish I was one of those people learning about dementia and not living it.

Anyway, it was a good day and I came away with the confidence that I could do this, I also caught up with people I had met before with was lovely.

I am looking forward to delivering my first Dementia Friends Session following the script, and possibly at the end when I finally ask the people attending ‘what someone who is living with dementia looks like?’ I will say “me“.

Dementia Friends sessions in schools

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Today I went along with a Dementia Champion to a Primary School where I live to deliver a Dementia Friends session.

Oh my word, I was absolutely blown away with the comments the children made when asked questions. Questions such as ‘when memories have gone from recent events, what is left?’ The number of children who said ‘feelings’ was amazing.

They simply get it. You can see their minds working and understanding what they are listening to. They sit quietly, and listen, they write their ideas on what the brain ‘does’ on the brain pictures we give them. At 10 years old they try and think about what memories someone of 70 has. How difficult is that when you have only lived for 10 short years? Things like ‘losing your husband’, and becoming a grandparent.

I am so hopeful for the future when I see and hear the compassion and understanding of children today. They are our future, they are the people who will perhaps be caring for their parents one day.

I am simply in awe of the pupils today of Westlea Primary School in Seaham, County Durham. This is the second time I have been part of Dementia Friends Sessions in schools and I can’t wait to be part of more.

More importantly how wonderful is it that schools are so willing to be involve in becoming part of a Dementia Friendly Community. A lot of adults could learn something from their children I think.

At the end of April I will undertake my own Dementia Champion training so that I am able to take Dementia Friends Session as well and I look forward to that.

🙂

Dementia Friendly Communities

Been just as busy February as January. Last week I spoke at the launch of Blackhall and Hesleden Dementia Friendly Community. Since our own launch of Dementia Friendly Seaham things have been moving along nicely. But boy, these things take work, and time and commitment.

What does it mean to launch a dementia friendly community? Look around your own community and see if there are any stickers on shop doors that indicate that staff have taken part in Dementia Friends Sessions. How many do you see? The large supermarket, does that have a dementia/disability friendly slow checkout lane? What about cafes? Your local library, council offices, your GP Surgeries? What sort of groups are available; support for carers, peer groups, and activities, are in your local area? Where do you think you would find out information telling you what there is?

Out of all of the members of our working group there are, effectively, only two of us doing anything. Working groups, should be that, not just meetings where we discuss and others ‘do’. However, there will always be people to want to make a difference and do put their time into making a change. Equally there will be people who can network locally which is just as important.

My talks are becoming slightly more hard hitting, so that I am prepared to say that I am still waiting to meet more people like myself in my area. Where are the people living with dementia I ask? Why am I the only person able to speak at these events. Reaching people in your own community living with dementia is not easy when you have no provision in place to sign post after diagnosis to support that does not yet exist.

My area with the aid of the Alzheimer’s Society have made wonderful strides towards looking at how we can be more inclusive to all. There are a core of people that I meet at these events who are fabulous and work extremely hard at promoting change. What I would now like to see is the general public supporting us. I am touched when people come to speak to me at events telling me how brave I am to speak out, but I don’t feel brave, I am not brave. I just have a desire to make things better for myself, and for the other people living with dementia in my area. I just want to be able to have the choice of different groups I can attend or get involved with. I don’t want to be sitting at home whilst my Alzheimer’s progresses and have no art group to go to, or anything similar.

When I am at home I am scared. I feel dread at having to think and write a talk for the next event. Maybe this is my dementia making me shrink back in stepping forward. Part of me longs for someone else to take over but then I know I will never be able to step back and not get involved. There is a wonderful core of people who are working hard, but I want to be a voice for dementia because I live with it, they don’t.

It is hard work for me to do these things on my own at home, the will is there but I have to admit to struggling to follow through sometimes. I am finding that I can no longer organise things that need to be done ‘just like that’.

Days when my Fibromyalgia is flaring and I am wracked with pain making it harder, and now it is possible that I also have Chronic Fatigue Syndrome which is pants quite frankly! I have to pace myself so that I can do one major thing per week with the Alzheimer’s Society, attend Art Group, my Knit n Natter group, then sleep the rest of the week.

I find it harder to get things sorted out at home these days, the small damp patch that needs doing before the walls can be painted, and the skimming of the ceiling too. I need to find someone to help me dig the garden over, re-fence……. Why can’t I just do these things? I don’t know why, all I know is that I feel scared to do any of it. It doesn’t make sense. Once I have forced myself to do it I am relieved. It almost feels phobic. How I wish I had someone who could actually sit and do these things for me, or with me. I am understanding that it may be time to de-clutter massively ready for when I progress. Time to get a cleaner to help me keep my home clean and tidy.

In the meantime I will continue amidst the constant exhaustion, to give a voice for dementia when I can. 26992176_1933561930010577_3170965173589389220_n