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Dementia awareness week

(13 Posts)
CMOTDibbler Mon 18-May-15 10:36:45

Lots of memes and 'inspirational' messages on FB? Nope.
Messages of hope for the future? Nope.
People talking about how together we can beat this? Nope.

In fact, I predict that not one of my friends will say anything about it - because everyone I know would like to stick their heads firmly in the sand and pretend that dementia doesn't happen.

But it does. And it happened to my wonderful, academic, active mum when she was still in her sixties. Now in her early seventies, she can't read, talks very little, struggles to feed herself, and doesn't know who I am. And tragically, doesn't even know her own surname.
All the friends she had won't see her anymore as they can't cope with her - women who pulled together through cancer, serious illnesses, surgery, becoming widows.

whataboutbob Mon 18-May-15 20:33:52

You are right CMOT. No one wants to think they or their parents will get dementia. Sometimes I have felt people nearly had a lurid curiosity in asking me for the latest installment in Dad's grim saga. If I had a pound for every time I've heard " It's my worst fear but thank God my parents have great memories so far". Phew, normal service continues then.
Seems like it's stepped right into cancer's 1950s shoes.

CMOTDibbler Mon 18-May-15 20:47:54

Oh, the 'I just don't know what I'd do if it happened to my mum' drives me nuts. And the 'its just important to keep your brain active'. You couldn't get much more active than mums brain, but it still happened.

emark Mon 18-May-15 20:52:31

Huge stigma attached to dementia, very true its the 'new' cancer, especially in the younger sufferers.
my mum has recently been diagnosed in her very early 60's.
it is a life changing soul destroying diagnosis for the whole family.
my children keep asking when will nanny get better sad sad

CMOTDibbler Mon 18-May-15 21:20:23

That must be heartbreaking Emark sad. Fortunatly my ds has accepted quite well that grandmas brain is broken and getting worse, just the occasional statement that he'd like to be a Dr and find a way to fix brains

emark Mon 18-May-15 21:25:25

Thanks Cmot, my children are only 9mths - 11 yr old.

the diagnosis is lewy body so multifaceted and very complex with no approved medication.
Everything is just so difficult and feels complicated by mums very young age

Rosa Mon 18-May-15 21:27:51

So early so sad. My dds are young and they know and accept that grandpa can't remember things and he needs to be reminded to drink his tea . That Grandma gets cross more often as she is tired . What has happened to all the dementia friends who went on courses? I am shortly heading home after a good few months away and am mentally trying to prepare myself . Thankfully we do still have friends and family that vist...maybe because one of the 2 is still there and coping( only just). Horrible Horrible disease how I wish for a cure...but you know that being one is never going to happen in your loved ones time..and probably not mine if I get it either.

AnimalsAreMyFriends Mon 18-May-15 21:40:39

It's a cruel cruel disease which steals your loved ones from you. We are as a family dealing with advanced Alzheimer's which has robbed us of a strong confident and active man, and left us with an empty shell of a man, who is now in a care home and doesn't know his wife of 49 years.

If you have young children - I can recommend The Dementia Diaries (it's on Amazon ) They have been written by children for children. My youngest son (age 9) has found the book really helpful.

Background of the Dementia Diaries
Braincell Boogie - song for children

3lovelykids Mon 18-May-15 23:26:36

Glad to see others have acknowledged dementia week. My dm diagnosed early stage Alzheimer's in November but is already confused about her home and whether my dad is the real person or not. It's totally completely devastating hmm

whataboutbob Tue 19-May-15 08:55:16

Just sending hugs to everyone. So hard and even more so when the person affected is still young. We'll get through this but boy it's hard.
My Dad lives with my brother and when the disease was encroaching upon him he went to the GP to raise his concerns that "this man has moved in to a room upstairs". From then on he denied vehemently that my brother was his son. No amount of reasoning, going over things, reminding him etc would shift his conviction.

CMOTDibbler Wed 20-May-15 13:03:19

After I started this thread, I emailed MNHQ to ask what they were going to do for dementia awareness week. So I ended up writing a guest post which is up today.

Please share your stories if you like so people understand just a bit more about what its like

Gilby Wed 20-May-15 13:27:43

Hi all. I need your help. Dementia is an epidemic, and of course, it has no real management options. No cure. So, in honour of my grandfather, who has the early stages of likely vascular dementia, I decided to raise funds for Alzheimer's Research UK. As the name suggests, it funds (a stack load of) research into dementia, which is what is really needed.Yes, support for those who already have it is crucial, but we're YEARS behind cancer research- about 20 or so years.
In a moment of insanity I set this little project up (to raise £99000, ahahahahahaha) to start when I was 32 weeks pregnant. I now have less than 3 weeks to go until DC no 3 is born (argh) and really need some publicity, and, more importantly, donations. I've set myself a £5K target pre-baby but have stopped just over £3K.
Our first little project is 'silly but serious' and invites people to be superheroes, wear pants on the outside of their clothes, donate and nominate (post pics to our Facebook or Twitter pages).
Please, please check out our website:
Can you help? Could you spread the word…and…take the superhero selfie challenge?

OrangeVase Tue 26-May-15 23:10:30

My Mum is in hospital this week and there are signs and displays for Dementia Awareness week - but that is all I have seen.

I agree it is hardly spoken of yet it affects everything and the resources it sucks in are vast - both from individuals and society - so we need a new approach.

My Mum was diagnosed with vascular dementia about 5 years ago. So far she has coped - just about - but the inevitable admission to hospital means we have now been forced to arrange care and she has been forced to accept it. In the meantime I am losing her very slowly.

I am exhausted this evening but will come back to these threads.

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