It has been a few week since the last “Sunday Musings”

Not because I have become bored with doing them or I just cannot be bothered.

It is because the challenges I am facing are increasing and my abilities are decreasing.

My wife Sheila, is slowly taking over managing my diary and emails, prompting me more.

I had my eyes tested in January and again a couple of weeks ago and my eyesight has deteriorated in those 8 months.

Those of us diagnosed at an earlier stage of Dementia, who are able to talk about their experiences, talk about the positives as well as the negatives.

Often we are attacked in the media for talking about the positives, accused of not having Dementia at all.

The whole point in talking about the positives, is not to belittle those whose Dementia’s are more advanced.

It is to counteract the negative perceptions of the media and professionals.

After all it is those negative perceptions we are experiencing to our detriment.

It was those negative perceptions that disabled me following my diagnosis.

It wasn’t until I attended a post-diagnosis course in York that I was re-enabled, that I learnt that there is a life after a diagnosis.

It wasn’t until I saw people talking about what I may still be able to do, not putting the emphasis on what I can no longer do, that I began to live with the reducing limits of my diagnosis.

And that is the message that we try to convey to those recently diagnosed.

We may have Dementia, but we are fully aware of what is to come, what the future holds for us as our Dementia progresses.

I feature George Rook’s blog “Go Out and Live” this week.

It is George’s message to those who have been diagnosed, who MAY still be able to continue to do the things they enjoy, and or take up new things.

As with many others, it is not George’s wish to belittle the experiences of those living with Dementia, who are unable to do things because of the challenges of their Dementia’s.

Our message is that you may still do. you may still enjoy, within your own personal limits.

Our messages are also to professionals, service providers and others, to focus on what we can still do, not what we can’t do.

See the person not the Cognitive Disability.

Enable not disable

To err is to be human, what works for one of us may not work for others.

When I was diagnosed, I needed to know what I could still do, not just be told what I couldn’t.

As I slowly descend into my own personal hell of the palliative stage of Dementia, I need to be reminded of what I can still do.

To listen to the music I enjoy not what others choose for me.

Not to be in a place decorated as in the 40’s and 50’s as NHS England propose.

For the Gatekeepers of services, such as GP’s and Consultant’s. to stop keeping the gates locked until I need a Crisis Team referral, when it is too late and I become a burden on the system.

To support mine and all other families who support a person living with Dementia, who try to enable us, often to the detriment of their own health, who may also then become an unnecessary burden on the system.

To talk to the person with Dementia and others, to identify unmet needs, on at least an annual basis and then to unlock the gates and refer us, not say it is inappropriate to refer us because we have Dementia.

WE may have Dementia BUT we are human beings

Don’t disable us to the detriment of those abilities that may still remain.

Don’t assume that we cannot do.

See the person NOT the disease

Enable us to the best of our decreasing abilities.

“LARA”Learn, Ask, Refer, Assess. 


Alzheimer’s Disease International – World Alzheimer’s Report 2019

Alzheimer’s Disease International recently released their World Alzheimer’s Report 2019

Raymond Duffy’s article Dementia Stigma is an International Concern talks briefly about the report and links to the full report.


Videos


Radio

Dimensions of Dementia – A Mother and Sons Journey Together

DEEPNess Dementia Radio


Newsletters

Alzheimer Europe

LEAD Coalition 31 Jul 19

Young Onset Dementia Alzheimer’s Group (YODA)


Blog

”  Ignore people who tell you not to take risks. Medical and other care professionals will often suddenly treat you as if you have changed overnight into a person who cannot do things, and cannot make safe decisions.

Ignore them. Go on doing just what you choose to do. You might even want to start doing things you have never done before. Take Wendy Mitchell. She has done zip wires, parachute jumps and walked over burning coals since her diagnosis.   

George Rook’s article titled Go Out and Live


New Resources

Young Dementia UK – A decision-making guide for GPs

Dementia words matter: A DEEP guideline on language about dementia