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...

The Winner Takes it all

I was talking about gambling the other day with a friend of mine, and I mentioned those adverts you see on T.V. for the online gambling sites, poker, bingo, roulette, every kind of way you can think of to get you to part with your money is available online and it is so easy for it to become an addiction. I learned my lesson on that score way back in time when I was a teenager, I had a Saturday job and had saved some money for our family holiday to Blackpool, of course the place we stayed had one of those Slot machines with the bright flashing lights that are designed to draw your attention… the problem is this thing was right near the front door making it unavoidable, it kept calling to me… Debbeeeeee, Debbeeeeee… come play with me, and of course I succumbed to it’s powers and proceeded to lose every penny I had worked so hard for and saved because I kept thinking next time, it‘ll drop the jackpot… I could feel that win just lurking on the other side of the next 50p. I walked away from that machine feeling violated, I literally felt as if I’d been caught in a trap and luckily for me I began to identify with the feelings and understood them to be negative rather than focusing on the highs which is what many gamblers focus on… the adrenaline rush. For me it was a lesson that took a few years to sink in but I never gambled in the same way again, I opted for the occasional flutter rather than every last penny and if the call of one of those machines was so great I would limit myself to a couple of quid, I realised very early in that the only ones that win on those machines is the owners, so I learned my lesson and chalked it down to experience, by the time I was in my late teens I had learned a lesson well and avoided all things flashy that called to me in such alluring tones - men included! (can‘t stand flashy men) As I was talking to my friend about gambling she began to tell me the tale of a mutual friends relative, the story of a woman who had gotten involved with online gambling, the first sign was when she started borrowing money from family members and then asking them not to tell her husband, and her saying that the money would be returned within a week, obviously when it wasn’t her husband was told and then the depth of the problem began to unfold… not only was she borrowing from family members, the lowest amount borrowed was £3k the most that they know of to date is approx £20k (and that was just what she asked her family for), unfortunately that was just the tip of the iceberg… credit cards in her mothers name, her daughter (currently at uni), she’d forged her husbands signature and gotten more credit cards, she’d forged his signature and re-mortgaged the house to the sum of £300k, the debt has amassed to approx £600k, (but it could be a whole lot more) the whole time she is telling me this tale I was thinking how could anyone be that stupid… to not get the point before reaching such a sum, to destroy the lives of her whole family, saddling her daughter with that kind of debt, not to mention the fact her husband was about to retire … he has lost everything. The entire family have been touched by this woman’s addiction to gambling and like many addictions it is a destructive force. I was lucky in that all I lost was 20 quid on that initial dance with an addictive force that was in my case a slot machine. This woman… found her demon in her own home, accessed via the computer her home that is now lost, her family gone- destroyed and her being investigated by the police and various banks as well as credit card companies. Every time I see those ads on the telly I cringe at thinking how many families will be wrecked and torn apart by these sites, gambling in general will always be a problem for some, I can think of quite a few friends I have known over the years who have parents suffering from gambling problems… and that was before the age of the computer and online gambling sites… that was just with the bingo… or the horses… or for the hardened gamblers the casinos, which we had one in the area and that was in the back streets, understated and seedy looking, now they are popping up in most of our major cities and they are still looking tacky but with more glitz and Las Vegas “style”. It scares me to think that so many families who are living on so little will be the ones tempted to try and win online… you can guarantee one thing, more families will suffer and be left without their homes, or pensions or more importantly… The family itself is ripped apart. Maybe I am oversensitive to this issue, but after seeing the damage it can do through the eyes of friends who have suffered the consequences… it is an area I am happy to remain over sensitive… I think those ads should be banned, but then I also think the ones where you have a group of women doing the lip pouting, chest pushy out posturing and selling themselves on the phone should be banned too. Anyway … this is one of those topics that I am quite passionate about, I don’t object to gambling in general... Hell I even have a flutter on the lottery, the hubby puts coppers on the horses every now and again… but I cant help but wonder with the current state of this country and it is about to get a whole lot worse for many of us from a financial point of view with taxes going up… just how many will be tempted to try their luck on the online gambling sites. I shudder to think how many lives will be torn apart and devastated, fuelled by desperation, greed and controlled by addiction to the adrenaline rush of a possibility of “the big win”, which of course never happens because that guy - the only winner is the owner of the site and he is sitting in one of his many villas laughing his designer sox off. Oh yeah…
and my run in with the slot machine all those years ago… some snot nose kid, about 8 years old came over to the machine just as I walked away and put 50p in the machine and dropped the jackpot on his first pull of the handle, I had to spend a week looking at that kids smug little face, and boy did I want to slap him one.

Skereeeam a little louder

You know when “they” talk about a mid life crisis, what exactly do they mean… does it mean that you’re having an identity crisis that just happens to fall around the same time you hit middle earth… I mean middle age and why I wonder is it portrayed as such a negative event in our lives. I know of late I have felt unsettled within my own psyche… it happens every now and again, in fact it happens a few times in a year and there may be triggers that set it off, and as yet I haven’t been out and bought a fancy red sports car, oops that tends to be the blokeys rebellion not the girls doesn’t it.
I wonder how much of who we are is lost in this society though our constant modernisms and the speed at which we feel we must live our lives… making no time for ourselves to cherish the relationship with our own spirit. Those moments of meditation and contemplation are seen as luxuries we no longer have time or space for, ideas of nurturing the spirit is suddenly classed as “alternative”, where it once was common place within society, how much we sacrifice for the sake of mighty Pound/dollar etc.,
I guess I feel certain changes within myself, age creeping in around the edges of my life, slowly encroaching on what was once my youth, silver hair replacing gold and so on… none of that bothers me, but why oh why do I have this overwhelming sense of panic that creeps up on me every now and again… as if I have been hemmed in by life and I have this increasing desire to …. Just scream! Lol
Is it just me that has moments like this… or is it universal; is this what a mid life crisis is … is this it’s beginning?
Sometimes when I think of what a mid life crisis is, it feels like the last push at independence… the last surge of the grass being greener… and maybe that is the key in this, it feels like the last phase of a lot of things within life and maybe that is where that sense of panic is born. Maybe I need to keep reminding myself there are a lot more chapters to come and that even if I do go through a mid life crisis, it may not be such a bad thing anyway… I am no different to most, in that fear of the changes that life forces upon us… just need to remind myself change/difference is/can be good, can bring about something better, more fulfilling. Maybe that is where the thinking is wrong… talk of midlife crises tend to focus on the series of “lasts” rather than seeing it as one door closing and another opening which leads the way to a whole new and exciting phase of “first times” again.
However - that still doesn’t prevent the desire to scream every now and again… ;))
have a great weekend everyone.

C'MON

There’s a strange feeling in the air tonight, (that brought back memories of Phil Collins song of the same title… wonder where he is now?) Anyway this feeling is probably more to do with the fact Ingerland are playing again in the world cup and after their piss poor performance against the USA team it isn’t looking particularly hopeful against the Algerians this evening. As much as I dislike the game I do enjoy the hype around the world cup, it brings out global rivalry and of course there is the pride associated with your home country whether you follow the game or not, if a victory is won I imagine that most would be swooning with pride for their countries team.
I wonder why we have such a poor track record not only in football but also in cricket, tennis, athletics and various other sports, is it just because we don’t recognise and nurture the talent from an early stage or is it lack of funds.
I often wonder how much of the lack of a Wimbledon winner from our shores is based on the expense to train the youngsters… but then finding the talent in the first place, you don’t hear mention of scouts going around secondary schools looking for the next Wimbledon star or starlet.
I remember not being allowed to play tennis at school unless you were in the brainiac classes or you showed a natural aptitude towards the game after a couple of taster sessions which lasted quite literally for you trying to serve a couple of balls and then a couple of forehand/backhand shots… the why behind that choice is beyond me, but they used the lack of teachers and court space as the reasoning, but needless to say there weren’t that many played tennis in my school… but then like many at my school I was a single face lost amongst the sea of the many kids that were overlooked, any talents we had were brushed aside as inconveniences or interruptions to the smooth running of the class not that the teachers appeared that bothered by any interruptions. As a nation we don’t really celebrate in our young-uns it seems that we give them rights in all the wrong places and stifle their talents - Still to this day. I think that is more to do with numbers… and recognising potential and natural aptitudes in certain arenas, and the educational system we have in place doesn’t allow for individuality any more than it allows for the underachievers to flex their wings and discover their potential in other areas. I remember the bottom band at school those kids were the outsiders to just about everyone, the underlings as it were, they never stood a chance really, from the beginning they were placed in a class and labelled “special” with all the negativity and the undercurrents that go with that label, how can any talent blossom when it placed in the dark like that.
I imagine that most of the players in tonight’s game will have their own stories of their climb to the top of the elite ladder of silly money wages and a lifestyle that mirrors that of rock stars and actors, lets just hope they are worth their money and bloody well win tonight.
C’MON INGERLAND ;))

To dare to dream

I have often pondered the idea of living a different life, daydreamed the concept of being financially affluent, having the house & garden of my dreams, not that I am unhappy with my life as it is but I would, like most people I imagine be happier if we were financially secure, not that I know of anyone who would fall into that category, most are struggling with the day to day running of house and home and most tick on by like the sands falling through the hour glass that becomes our lifetimes.
I was in the process of one such day dream last night and was sketching out my ideal kitchen, well half of it, and it looked a bit wonky - such are my abilities and skills in the technical drawing department. the idea was a good one though and in certain walks of life some would say I was visualising my dream, releasing the idea into the universe so it could manifest itself within my life. Something I've been trying and failing for bloody years with pictures of George Clooney, anyway looking at it from a broader perspective and from a spiritual angle my life is good on most days, I would say by and large I am a happy and contented person, but there are days when I feel as if someone has lifted a veil somehow and the idea of something more could be a good thing too. I was just thinking about the affluent ones out there, they tend to be the ones who throw that quote around "life is what you make it"... and 99 times out of a hundred I am happy for them but every now and again you get one who likes to brag about how well off they are and part of you is thinking that they have no idea how reality is for most of this planets population. what is it they say oh yeah... ignorance and something about it being bliss.
I still like the idea of positive affirmations and the concept of releasing an idea of a better life, house etc into the universe, after all the first steps to manifesting anything is the ability to dream it and if we can dream it we can achieve it... have it... live it