Dementia 1 - Grace 0

For the sake of writing this piece I will call my LO (loved one) Grace, not to imply a gender but purely because this person is the perfect example of Grace and has been throughout their lives, even on the worst days of this illness.

Sunday 22nd was a rough one, it left Grace unsure of most things, from who we were to what simple things were called, recalling the name of the phone needed a prompt and the mirror and who we were. 

The delusions were rearing their ugly heads today... apparently I/we were trying to con them because we dressed them in clothes rather than their PJ's .. and of course trying to reason with them when this little demon is in situ is a waste of time and energy, so on went the PJ's and peace was restored. 

It leaves an overall impression that the lights may be dimmed today but I know Grace is still in there, they smile at me the same ... a smile that I have known since childhood...and that is my saving Grace that for now at least - a part of Grace still survives .. distant today but as the day progressed more and more of their thoughts came back into clarity, like a curtain had been drawn and sunlight poured through.

As hard as it is to bear witness to this disease living it must be absolute hell!!

a Good Day ... Dementia 3

So, today was a good day...

my LO with Lewy body went for a walk, outside

around the block and sat on one of the seats... and then walked home again,
if you knew how monumental that is you'd be smiling too.

Today was an exceptionally good day!

The Lewy Files... Friday the 13th .... 2

Friday the 13th... The Lewy files

We should have known something was amiss... we'd received word that there would be someone visiting my LO (loved one) today with reference to the hallucinations... frequency and subject matter and how we calm them. So, we were under the impression it would be the new Psychiatric doctor coming out to introduce him/herself ... but no what we were met with instead was a Student from the university wanting to take notes/and record how things are... all with the view of helping students to learn. Somewhere down the line the communication lines were crossed because there is no way we would have agreed to this... more so this past week considering the hospital run on the 9th of July.

We and listened to this young girl ... none of us wanting her to be there and whilst I felt sorry for her and for her time being wasted, I was also so bloody angry .. Lewy body dementia is a hard enough road to traverse without some student who hasn't the confidence to engage you without apologising 50 million times (slight exaggeration) but jeez every other word was sorry.. which only pissed me off further. of course the heat didn't help.
But as soon as she said.. "we HAVE to record this for future students to learn from" I said WHOA... no you don't, if you want to record it you may record by hand but you're not voice recording this at all... it was on the tip of my tongue but I held back when what I wanted to tell her was, ASK permission don't tell us we have to let you record us. She blew it with that last part about having to record us and the whole weak ass approach to interviewing.

I only hope that she greatly improves over time... but sorry honey we're not your learning ground, not today, we've all been through enough crap this week without holding your hand whilst you're wanting to subject us to a 2 hour interview.... not bloody likely!

The Lewy Files - A Demented existance ... 1

It's been a long time since I've called in here... 8 years to be exact and couldn't believe it but the World Cup was the highlight of the news back then too - even though we've just been knocked out by Croatia ... hindered greatly by a referee who was visually challenged and forgot he had red and yellow cards and more importantly how to use them. Would it have altered the outcome if he'd done his job properly... probably not, but it was lovely to see the England squad get as far as they did.

I was going to say a lot has changed in 8 years...but I am still sitting in the same home, still not affluent and still dreaming of a home with a beautiful garden and not worrying about the bills. I care a little less about many things in life but only those I shouldn't have disturb my sleep.

From the last time I wrote on here I have lost family and friends and I can understand why so many become weary with life... not that I think they are weary with life I think they become weary with loss, too many holes left in their hearts where those they have loved have left a space when they died.

We really do become defined by the love we share and when those we shared it with are no longer here we in turn lose a sense of our own definition... our edges become blurred somewhat, not knowing quite where we fit into our own life, it's almost as if the mould is changed or smashed and we have to make a new identity/redefine how we love others and ourselves.

As a family we are living and learning from one of our loved ones who has Dementia, Lewy Body Dementia.. and it is so unlike any of the other dementias'/Alzheimer's I feel it really shouldn't be listed with them. The onslaught of symptoms is greatly affected by stress and change ... change of faces, environment, mood, weather, there is a hypersensitivity to this condition that cannot be quantified.
All of the information out there speaks of hallucinations, I firmly believe there are varying and different experiences of what is commonly classed as a hallucination. I know from witnessing what my LO (loved one) goes through that it's not as delusional or hallucinatory as the "professionals" would have us all believe, on many occasions my LO has picked up on experiences I have had far away from their home, from details of that experience to my actual mood and they have experienced it as a dream or hallucination... and it's usually been within a day or so of it happening, when they have mentioned it too me ..at times I have been shocked that this person, my LO who at times cannot remember who I am or the relationship we share, or how we are related, can be so psychically in tune with me and my emotional state.

I am hoping to add more to this page about our journey and how it plays out in our lives, but for now a small intro into the world that is demented by Lewy Bodies and the affects as a result of and what the professionals can only guess at is the actuality of the condition... the living and breathing with someone who has it.

'til next time...