Singing for the brain..my way

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Sunday at the Coalhouse a micro pub/Real Ale bar.   Open mike night every other Sunday starting at 3pm.  Home by 8.30 or 9pm!

Of course my friend Lynn and I visit this, our local to enjoy the atmosphere, have a drink and listen/join in with the excellent artists singing.

I sound like an advert don’t I, or a drunken mate trying to get you to join us for a jolly good time

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What I am getting at is that singing is good for the brain, and Dementia Choirs are an excellent way to enjoy a pleasure we can all do which is sing.  It stimulates lovely memories of music you have enjoyed as a teen/mum/dad, on holiday, a celebration, or a time in your life you associate with a loved one.   I am not talking war songs or music from the 40’s here, I am talking music from the 60s, 70s, 80s and so on.   As more people are diagnosed with a memory or dementia related illness younger it is important that music is age appropriate.

I am not keen on joining a choir, I don’t have a particularly good voice, not that matters one bit, but I think I don’t like the organised bit of it.

For me I like to hear a live band, or a live singer.   Music in the Coalhouse can range anything from folk, Snow Patrol to Creedance clear water, even a bit of Hendrix.  Now there’s my type of music at times!   To these I sing my head off!  Lynn and I are occasionally give a Tamborine and Maracas and we go for it.

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Lynn took a picture of me and my daughter singing, playing and having fun.  This for me, is my singing for the brain.  Suck it up Dementia singing loud and out of tune!!!

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So don’t stop going to the pub when live music is on, stay for as short a time as you want, choose an ‘open mike’ event, where singers with a guitar, or singer songwriters just get up and sing.   Staying even a short amount of time is invigorating.  If classical music is your thing, then how about finding lunchtime concerts?   I find it difficult to cope with loud noise or too much background noise, but this is something I find immensely enjoyable because in a small place the level of sound is usually pitched correctly and not enough to blow your ears off.  Everybody is singing, you are so engaged that any other background noise simply disappears.

So get your positive pants on and go for it …

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 ofLets 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

 

Feeling….stressed, despondent…but still wearing positive pants

th-2There are days when I feel I can no longer compete with organisational ‘experts’, with regards to what’s best for me and other people living with dementia.

That I can no longer stop others from deciding what us people living with dementia need, or want to fit their ‘brief’.

I get upset at how what I am saying, or my voice, is being blown away on a wind of ‘organisational’…I am sitting here trying to think what word to use but can’t quite get it.. constrictions, not fitting an organisational brief..

I am a strong advocate for people living with dementia to live with the positiveness of CAN DO.  Of overcoming the fear of their diagnosis and trying to do as much as they are able and then, going beyond that.  Having a say in what they want, what they will accept others doing for them, having a voice that is heard.  Trying something new, revisiting something they used to do.  Adapt what they want to do in a way that they achieve more than they thought they ever would.

The saying “There’s no such word as can’t” is so underrated.

At this point I had written a lot of why I was writing this and then realised that it was the wrong thing to do.  So what I will write instead is what I feel is important for Society/Communities/Organisations to understand.

If you are living with any form of MCI or PLWD (Person/People Living With Dementia), it is import to keep going.  Before diagnosis people had their own autonomy;  do you want to?  how do you want this to be?  give us some ideas that you would accept…  and such like.    After diagnosis this should still be the norm for any organisation when they are providing for us.   Most people working in organisations that provide some service for PWD have training.  NVQ Level 2/3 in Dementia, Social Care degrees/Masters, or ongoing comprehensive in-house training.   But, this training can never take the place of the voices of people living with dementia.  Our actions, ideas or input should never put behind that of an organisation.

It is always worth reminding society that PLWD once had careers and backgrounds that may have surpassed anything that any dementia provider has done.   All careers from shop assistant upwards are vital roles, but it seems that when someone is diagnosed everyone forgets what they are capable of, so if they are making a suggestion or offering to do something it is of no small consequence, because they may just have more knowledge than realised.

I really don’t want to be told what I cannot do, because I can try to do anything I like as long as it is legal and will not hinder any other process.   I don’t necessarily always want to leave things to the ‘experts’ if I can do something myself.

My thoughts are to step away from a situation for my own wellbeing, but this isn’t about me this is about all people living with dementia having a REAL voice.

 

Dementia: Always explaining myself

I went to see a doctor the other day, because I have a long standing problem with my knees and they hurt.   I have not been able to use steps/stairs for a couple of years now.

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So, I explain that I have a congenital deformity in my knees and they are so bad now I can’t climb stairs etc…   Doctor asks me to explain what ‘congenital deformity’ I have.  “The knobs on the top of my tibia are too narrow for my patella to move over up and down without rubbing the bone, and my patella sits too high”  I answer then telling him that I had an operation on one knee in my 20’s giving the correct term –  “A Tibial Tubercle Transfer”.   He murmurs something about my patella, which I don’t quite catch so can’t answer him.

His next question is:  “Why do you have your medication in a nomad pack?” (see my previous post on this subject)  I suddenly feel like I am in a parallel universe in a different consultation.  What?

Me:  “I have Alzheimer’s”.    Dr: “You have it delivered weekly?”  Me: no I collect it monthly.  Dr:  4 packs at a time?  Me: Yes!?!?  Another Doctor from this surgery phoned the chemist and arranged that I could pick it up once a month.  I am not housebound I cannot change my life to collect it every week.

Then I find I am justifying myself by telling him that my Alzheimer’s is at the very early stages.  I say this twice.   I swear if I find he has stopped this arrangement to give me a  4 weeks of nomads packs of medication I will scream….. Arrrrrrggggghhhhhhhhhhhhhhh!   and breathe…

Knees, focus on my knees!

And yesterday I go for some X-rays on both my knees, some standing up, then they tell me to go over to the bed.     I don’t understand what they mean?  So they repeat ‘go over to the bed‘.    This is where my dementia kicks in, go over to the bed, then what?  Do they mean me to get on the bed, sit on the bed, lie on the bed?  I am tired of my brain not working properly at times.    It is frustrating not being able to understand the meaning of simple sentences at times.  It makes me feel stupid, which of course I know I’m not but other people don’t know that when I am not responding.   The X-ray technicians would not know I have Alzheimer’s which makes me even more embarrassed that I stood there like a dummy whilst trying to work out what to do.

Hey ho.    Onwards and upwards.  🙂

 

 

 

“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:

  1. Know your community
  2. 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.

 

 

 

Confusion, viruses, overmedicating with Dementia

I was poorly earlier this week.  Monday morning and I woke feeling okay but it went down hill from there on.

61w3maLkAxL._AC_UL200_SR200,200_I went to take my medication and hesitated, the compartment for Monday morning was empty… had I already taken them?  I felt so confused.  I had a vague memory of thinking that I could take my Monday mornings medication from the original packs, or did I?  Why would I do that?  What reason would I have for doing that?  I couldn’t think what to do but decided that I had left out my original medication boxes for a reason and took my usual dose.   It is hard for anyone to understand how you can get so confused at either sorting out your medication or taking it, but when you have dementia confusion is all so real.   When you come across so normal to most people and look like you are in control of everything, conveying that you easily get confused is difficult for most people to believe.  But, on Monday I was confused.

Then I started to feel very sick , started vomiting and continued to do so most of the day.  My daughter arrived at lunchtime and called 111.  There is a stomach virus doing the rounds so I may just have been unlucky.  But, one of my tablets is for newly diagnosed overactive thyroid so doubling up on that didn’t help.  I was feeling too poorly to say I may have doubled up on my medication.   It probably was the virus but certainly wasn’t helped by taking too much of my medication.

I took advice the next day from a pharmacist and then my GP, and have sorted out Weekly Pill  packs for the future.

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This is a Nomad pack. Pre packed medication by the pharmacist

Never underestimate the possibility of someone living with dementia to be confused however well they live.  So, it helps to plan and put solutions in place to continue to live well without stress.   Most people already know about these weekly pill packs, but may not necessarily feel that they need to use them yet.  From my own experience, I am certainly going to feel more confident using them so that my occasional confusion won’t cause me to overdose on my medication in future.