Dementia: a disability?

I have recently seen a question that asks if you consider yourself being disabled living with dementia.   I think this is a really interesting question.

One of the meanings as in the English Oxford dictionary is:

Disabled:  1(of a person) having a physical or mental condition that limits their movements, senses, or activitieshashtag person not disability

Do I consider myself having a disability?  Yes I do have a disability because I am now limited but not restricted in what I do.  But the whole question of whether living with dementia is a disability is another question all together.  Some would argue no, because it is a life limiting disease not a lifelong disease, but even that argument does not stand up, because there are other diseases such as MS (Multiple Sclerosis), or Anxiety and Depression that can be equally life limiting.

I think the difficulties lay with getting a diagnosis in the first place.  Do you have a disability only when you have a diagnosis?   It would seem so.  Which brings me back to Dementia.  Speaking for myself, I consider it to be a disability because I can no longer carry out my everyday life in the way I used to, mainly because my mental capacity to organise things is diminishing.   Physically my body is not working like it should either as the signals and messages from my brain are getting more foggy.   Mentally, I can go into a ‘meltdown’ where I need to shut down in peace and quiet, alone, when things get too much to process.   So yes, I would consider myself to have a disability.

 

As I have said before I have two disabilities, but Dementia can mean the other is overlooked.  Fibromyalgia for me means living with constant pain restricting my physical abilities.  During a ‘flare up’  the pain and exhaustion is so intense throughout my body that I do very little other than sleep.  Fibro ‘fog’ melds with dementia to shut me down for a week or however long it is.   However, I may not tell anyone around me that I am in more pain than usual because I live with it dailyinvisible_disability_stickers-r449f8209b2e24f9e99cbbfda6d03ece2_v9i40_8byvr_324

Does this stop me doing things?   It slows me down certainly, but you can adjust your life to cope with it as much as you can.  Disability is a noun and identifies what hinders me, but does not stop me.

Disability is a word to bear in mind only, for each and every person has their own abilities or disabilities.

As per usual, these are my views alone and are not necessarily definitive information.

Diary thoughts with dementia

Sometime life feels like it’s in limbo.  Waiting for something.  Thinking I should always be active and not sitting alone quietly sewing or enjoying a film on TV.   Waiting for time..to what..pass?  I don’t know, maybe this is just how dementia feels like?    Does it feel unhappy?  Nope.  It just is how it is.

Sometimes when I have a diary full of meetings, and events, I just roll with whatever that day brings without feeling I have had any input into organising it but have simply turned up and been a small part of it.    A big hand that fills my diary and hands it back to me smiling.  “This.  This is how you will fill your time in a pleasant and meaningful manner“.  I smile as I take the diary and look with curiosity to see what pleasures I have for the coming week.

Then there is the ‘To Do’ lists I have written down on the righthand page of my Moleskine Diary.   This, however, gives me a hidden creeping fear, no not fear; anxiety, yes that’s it. Anxiety.  I have agreed to do this thing, and now I am scared that I cannot carry it out or finish it, or even start it.  Always in my head ‘I can do that’ , until the time comes to start it and then the dementia reality sets in.  The hesitation of indecision, the confusion of my own instructions where everything falls apart.  Followed by the quiet talking to myself – “I can do this, step by step.  Don’t overthink it“.  Then I when I finally start I am more confident to say whether I can do it, or whether to say I tried but it is now beyond my capabilities.   Admitting when you can no longer do things can free you up to do more of the things that you CAN do.

So, in reality I have a mixture of a Diary life, and my chill out self preservation life.  I attend meetings, give talks about my dementia, am part of a group working towards making my local town dementia friendly.  Then I have my withdrawal from the world life where I stay at home, alone, enjoying my own company, doing a bit of housework, and a bit of craftwork.  But, I also have my craft workshops for dementia in my diary that I attend and love because it gives me inspiration, gives me a place to be with other inspiring people living with dementia.