I am a person not a disease !

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And you don’t have to raise your voice when speaking to me !

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Life is for living !

I used to laugh, live and dream ,
Idle summer days, beer and wine.
Children playing,and enjoying my years .
Family, friends and the love of my life,
Memories in the making,
Pictures of the past
I used to be normal just like you,
I loved, laughed ,and dreamed ,too.
The darkness it came and it killed my life,
Despite the love of my family ,and the love of my wife
I slowly sank into my shell
Only surfacing for a short while, feeling like hell,
Fighting and shouting, never giving up !
whilst drinking from, my dementia cup
© chrisroberts

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Life is for living !

I used to laugh, live and dream ,
Idle summer days, beer and wine.
Children playing,and enjoying my years .
Family, friends and the love of my life,
Memories in the making,
Pictures of the past
I used to be normal just like you,
I loved, laughed ,and dreamed ,too.
The darkness it came and it killed my life,
Despite the love of my family ,and the love of my wife
I slowly sank into my shell
Only surfacing for a short while, feeling like hell,
Fighting and shouting, never giving up !
whilst drinking from, my dementia cup
© chrisroberts

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Busy year ahead !

Very pleased, have just been made A Purple Angel Ambassador by Norman McNamara www.purpleangel.org.uk
very ,very pleased to be working with the other Purple Angels in Wrexham, helping to make Wrexham and Wales more dementia friendly.
I went to Warrington yesterday to Dementia friends Champions training www.dementiafriends.org.uk
and pleased to say I’m now able to teach an 45 min long information session to anybody and everybody that is interested.
I will be organising this in the near future at various venues.
The training day was very interesting, basic information, but enough to teach awareness to people that don’t have much idea.
The training was very good, the guy in charge, a Mr.Keelan Early, was excellent.
A complete information package with backup and online resources is provided.
A gentleman With Lewy Bodies in a wheel chair introduced himself as soon as we soon as we sat down, I think most were quite shocked that he was a normal functioning human being .I said nothing about my self and my health issues.
Spent the rest of the day training and so on. On completion We were thanked for attending and so on….
everyone made their goodbyes ! I then got everyone’s attention, stood up and I said “I’d like to thank……….? (the guy with Lewy Bodies ! can’t remember his name, so sorry ! ) for attending and showing you that not everybody with dementia has pop-socks on and aged 80 years old ( no offence implied to anyone elderly with dementia, before the politically correct start ! ) and That I have Vascular damage and have been diagnosed with Alzheimer’s ,and have worked with you all day ! I hope some of the stigma has been removed and that no one is immune ”
You couldn’t hear a pin drop for a split second ! I hope I showed everyone how functioning we can be and hopefully removed some of the stigma about only the elderly can have this devastating disease !

“When does, the violence start” !

On a forum just lately this was a question. How on earth do you answer that !
This is one of those stigma’s, an urban myth of sorts.
Anger and violence when somebody has an illness does not come from the illness,
It comes from being worried,misunderstood, not being able to communicate. It comes from pain and suffering !
It is not a part of dementia ! Just as it is not a part of Cancer or any other illness that, probably, one is dying from.
Other people in a bad place, if they lash out verbally or otherwise, are given understanding,
so why is it that everyone puts mood swings, outbursts etc as a symptom when it comes to dementia !
Wouldn’t you be touchy, prone to depression, mood swings and out bursts
if your brain was slowly killing everything you used to be !
I relate to dementia like going backwards, undoing everything you’ve ever learnt bit by bit, going backwards in time. So eventually you reach the antagonistic teenager, then even the terrible two’s. Not all children were a handful, neither will all dementia patients !
Think a little before you speak, speak a little before you think .
If you have a bad day, one should be more understanding, if I have a bad day, it “must” be the Alzheimer’s !!
A violent, argumentative or confrontational person will always be one, regardless of their illness.
Having an illness doesn’t always turn a good person bad !

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Care/nursing home

The day will come, the matter how hard it is for everybody.
What I am trying to do is get some respite sorted into the care home of my choice.
I can then visit once a month,
I get time out from trying to be normal all the time,
which by the way, is very tiring.
It will give me some Me time without the struggle.
Did you know we don’t have to be entertained all the time, we do actually like sitting still and day dreaming, remembering ourselves, how we used to be ! it’s very relaxing.
I will then get to know the staff and them me, they will become familiar faces when the transition does happen,
i’ll be much more prepared and the move won’t be such a shock to the system
It also gives my family a rest from me !
My family will also get used to it, and more importantly it will be my decision, my choice ! it will be less hard on everyone all round.
Just my opinion.
Update :
Been looking around for a while and finally found one, but it’s led me to the conclusion that there should be some where for people of any age that mild or early stage dementia to go, intermediate care is needed, especially where you have to be in a EMI ( elderly mental infirm )
I can’t cross a road safely, so I’m classed as a danger to my self, so I have to be placed in an EMI and I think it’s heart breaking to sit and look at your future.
I know what is to come but to sit in one of these places for 8 hours being constantly reminded of how I will end up is a terrible position to be in, how many others are having to do the same regardless of age.
This shouldn’t be happening !

My life with dementia so far