Living with Alzheimer’s – 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

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

th-2 There 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.

Dr-Who-Daleks-Cartoons-Punch-Magazine-Birkett-1981

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. 🙂