1st April 2016
A week post trek has given me ample time to reflect on my experiences in the Grand Canyon .
As I packed my bags for the trek including some very ugly but essential footwear I gazed at the dewy eyes of my four year old son begging me not to go.
I picked him up in my arms and explained that “muma wasn’t going to be gone for long and when I return I will have presents for the best behaved children” His face beamed, as I’m certain in his little 4year old head I was bringing back mountain lions and rattle snakes, as his older brothers suggested.
Instead what I bought back was stories of loss, tales of the heart ache at living with dementia. As a business that supports sufferers we pride ourself at understanding how best to support and care for people, but as a ordinary woman not a business woman this was the eye opening moment where I actually felt the pain of those around me . I heard from one lady that her dad was a funny, strong and remarkable man then 6 years ago he stopped recognising his daughter, he could no longer put his arms around her and comfort her in her anxieties, instead she would bathe him as a stranger but love him as a daughter .
Another lady was raising money for her husband who had recently been moved into a care home, the saddest part of her story was that he was 51 when he started to become confused about general tasks. A time when husband and wife should be free to enjoy their lives and the futures they had built . This woman is as lost as her husbands memories, her soul mate has been forever changed. This brave lady fights for further research into dementia and better care for the younger sufferers as currently there is very limited care options to the younger sufferers.
During my challenge when tasks were a little daunting or I was apprehensive about doing certain things , I remembered my very close friend and the struggles she faces now that her mum has dementia . Her mum is an amazing lady, someone that made you feel like you could do anything you wanted, she was an inspiration as a mother. Which she made a career out of being a well loved childminder. My friend would often recount amusing stories of some of the things the children would do whilst being cared for by her mum.
Sadly when I ask after her mum, my best friend talks of the confusion and frustration that her mum feels now. How as a family they try and protect her from what lies ahead, providing her with the security of her family and close bond that they all share. My friend is mother now to a beautiful little girl and both are happy and loved and excelling in all walks of life , but I can’t help feeling they have both been robbed, of a mother and grandmother as although in body very little changes emotionally connections become lost.
I love my friend and when I was told of the situation with her mum my heart hurt for her . I knew that motherhood was new to her and her mum was one of the best and would have been an absolute Rock, tragically it hadn’t turned out that way.
Dementia effects more and more people every year and each year the statics surprise me ,research needs to continue, support and trials need to go further.
This disease is frightening at times you can not explain to the sufferer why they can’t remember where they live or what their wives name is . Every day is like reliving the last with the constant affirmation that they are safe
and they do not need to be afraid .
During this journey I shared some magnificent times with my very close friend and work colleague, spotting far away planets and seeing the milky way like I’ve never seen it before, laughing at ourselves when in our every day life we take everything so seriously . For me this part was freedom, a type i had never felt before.
Together we learnt to understand that it’s the little things in life that matter, like the small podgy hands of our children to the gentle reassuring caress of our loved ones.
These are special memories that hopefully one day I will recall and relive .
1st April 2016
Having been asked to do a blog on Alzheimer’s & Dementia care I came to realise I have never actually read a blog, let alone write one myself. I thought the best source for inspiration would be to visit Talking Point on the Alzheimer’s society website and came across some very interesting material.
In all honesty I was expecting to read blogs from Professional researchers, practitioners, carers, family members and friends alike. Instead I found myself reading blog after blog from one individual, a man from Kent who was in his early sixties.
I initially read a small introduction into this man, a strong, intelligent, natural leader and family man. Though his marriages had deteriorated and his son passed away at a young age, he depicted himself to be someone who fights his way through the day when needed.
It started with a clear history of his life and moved onto the struggle with his memory. Having spent 7 years of his life being told over and over again that it is due to stress from recent events in his life he finally heard the news he wanted – he had early onset Alzheimer’s. In a strange way I also found myself feeling a little happy for him, now knowing finally what was wrong with his memory. He had an idea of what he was contending with and he had a bit of hope that he would fight to hold onto himself for as long as he possibly could. The more I read the sadder I became, he struggled with his moods, describing them as getting out of bed and leaving his happy emotions behind.
He would become anxious about going out for the bike rides that he once enjoyed. He would get confused as to how he and his friend could watch a football match that had already happened the day before (his friend had pre-recorded it on sky of course). He would look at the clock and wonder what he had done or where he had been for the evening, searching his home looking for evidence to see if he had eaten, washed or even been out of his house.
I found myself reading his blogs out loud to the office team, picking out the parts that filled me with frustration and sadness for him. The fact that he couldn’t even open a packet of crackers even though he had stood assessing them for over 15 minutes only to figure out at midnight that all he had to do is pull the red tab to open them, instead they were left on the floor now in crumbs, pretty much same as his short term memories.
At this point I have to admit, I didn’t want to go on reading. I had put myself into some strange state of sadness and frustration, how can this happen? How could we genuinely forget the simplest of things such as opening a box of crackers? I was however, already intrigued by this gentleman and wanted to read more.
Finally, he appears to have struck some luck and although his disease is getting worse he is becoming happier and more determined. He is now getting support from someone that he simply calls the “dementia lady”, she comes along each week to talk to him, take surveys and perform various tests on his memory abilities. He describes the walks he goes on with his local dementia Café. He meets with them between 2 to 3 times a week and at first he feels overwhelmed with anxiety, doesn’t feel like he belongs, he is too young to be there.
In time he finds other people that feel connected to him and understand him, often they won’t go on the walks unless they know he is there, he describes the happiness he finds in being with other like minded people. He has his good days, he has his bad days, but his good days are made better by the support network around him.
I’m probably going to continue reading his blogs now if I’m honest.
This year, we at Platinum Care Solutions have decided to support The Alzheimer’s Society and work on a daily basis with those affected by Alzheimer’s and Dementia, often those that are in the advance stages who at times tend not to be here nor there on various days. Luckily for us we feel as though we are fully equipped with the skills, tools and knowledge that we need to support individuals that have Alzheimer’s or Dementia on a daily basis and we continue to learn. Alzheimer’s and Dementia are real, it is on the rise and it is far more soul and heart destroying than we have ever imagined.
With 815,827 people estimated to have dementia in 2014 and an increased amount of 856,700 in 2015 it is clear that with our longer lasting lifestyles it is only going to increase.
I myself did some training last year to be a Dementia Champion so that I can explain dementia to others in a way that they may understand, to give them the information they may need when interacting with those individuals that have it. I will soon be rolling out dates that I would urge you to come along to so that you can be a part of future support and care to those who have Dementia or Alzheimer’s.
It is in my opinion vital that charities as such as the Alzheimer’s Society are supported and sponsored, without them spreading awareness there will be no support for the man that blogs, there will be no support for the family that loves and there are less tools and knowledge for carers to use to support. I feel in the last year or so I could ask almost anyone if they know what Dementia or Alzheimer’s is and they would say yes, do they understand it or know how they can support or help? Maybe yes or maybe no, but I feel that in the not so distant future my answer to that question could be a lot different.