“PWD Perspective” Contributions from other Persons With Dementia (PWD): Tommy Dunne:
Tommy Dunne 2014 Tweets in my “Favorites” file:
May 27: I think the way forward with dementia is to have peer mentors it’s a scary road but who better to lead you along it. Also Peer Carers.
Jun 13: The biggest communication problem ppl have is they don’t listen to understand; they listen to reply.
Jul 23: My dementia is like walking on thin ice I don’t recognize it getting thinner but I know I will eventually fall through.
Aug 4: Dementia releases the real person within because we are not capable of lying in a malicious way.
Aug 11: Dementia has taught me that I’m here to do a job it’s shown me that I still have a purpose & a duty to fulfil before time runs out.
Aug 11: R feelings remain despite the losses caused by Alz. Feelings may be the only way an individual understands what is going on.
When I go out today
Familiar places will seem new
That may sound strange 2U
But to someone with dementia
It’s always true as our days R few
Aug 18: PWD and their families live through anticipatory grief this is knowing whats 2come & grieving for it now. So loss of quality of life.
Aug 18: I always say this, Don’t tell me what I can’t do; Let me show you what I can do. ((image at http://ow.ly/i/6AVVp ))
Aug 18: If you lost something you would look for it don’t give up looking for us. Give us time patience and understanding. We will return.
Aug 18: Just because we don’t respond does not mean we don’t understand U may B like strangers to us & we were told not 2tlk 2 strangers.
Aug 18: PWD need to be around their peer doing fun cognitive activities & I don’t mean playing Bingo let my peers tell U what we would like.
Aug 21: ppl seem to be under the illusion that all MDs/GPs are fully trained on the subject of dementia this is not the case.
Aug 21: (community?) is a place where I can put my point of view without being interrupted.
Aug 21: our community is best thing since sliced bread it gives us a world wide voice but best of all Hope.
“FaceTime is great because you can see the person and for us PWD seeing a person is 90% of a conversation” -Tommy Dunne
Sep 11: I’m fighting every day for dementia to be talked about every day in conversation it’s only way to kill the stigma.
Sep 11: I can tell you what it’s like to have Alz. I don’t suffer with it I live with it.
Sep 11: You should never go with the attitude that you are going to talk to a PWD. You should go with attitude you are going to talk with.
Sep 15: If caring is a burden then you can no longer be a Carer it’s bad for you and PWD no1 should be burdened with Caring.
Sep 15: for us PWD only thing that matters is D here & now but ppl always try to get us to talk about the past. Now is D only time we live.
Sep 15: There is fantastic technology here now and better to come but ppl are D best tools in dementia.
Sep 15: PWD don’t have to go into D depths of mindfulness they we just need to know that we are in D here & now & that’s enough.
Sep 15: We do meditate; have you ever look at a PWD and thought there miles away, well we are we go to some fantastic places.
Sep 15: It’s only in recently that ppl are coming to terms that you can have a laugh with PWD.
Sep 15: I have got a fantastic place inside my head I go 2 were I can do everything I want so real I tell my family I’m happy there.
Sep 15: We learn to love from our hearts when we get Dementia but we may not always say it we always think it.
Sep 29: not being able 2communicate verbally does not mean we don’t understand we pick up on how ppl feel it really affects us.
Sep 29: A caregiver full of hurt cannot listen with empathy.
Sep 29: PWD are walking a tightrope and our carers are our balancing pole.
Tommy Dunne 2014-07/25
It’s another day or is it still the same one
Time has no meaning it’s just the same
I still think I’m me but just not the same
I’ve got dementia should I feel shame
I know others like me who are just the same
There my friends, No there should be no shame
If you accept us that’s your gain
Cos we ain’t going to live in shame
Me and my friends where just the same
And stop telling us we live in pain
Because my friends and me are still the same
We may be invisible to some
And that would suit some
But you are talking to the wrong one
Because I’m Tommy and I’ve got my tongue
I’ll going to tell you how it is
Cos me and my mates we are the biz
Don’t count us out cos we got some clout
yea that’s my Peers and me.
Because You Care 2014-08/06
The tiredness came today
And took some of my thoughts and memories away
Caught unaware I was just left there to stare
But you were there Because you Care
I saw a note that you had wrote
Now what did it say?
Oh yes “Please Lord help me make it through another day and please
Help him stay”
Often I see tears in your eye
And When I ask why?
You tell me it’s just something in your eye
And that’s why it looks like You cry
Sometimes I know I just stare
And to you it must look as if I’m not there
But I’m looking within
For something that has gone and left a void
But I know you will always be there
Because you Care.
Tommy Dunne Festive Spirit
As the season of goodwill comes to a close lets us not forget that PWD need goodwill everyday not just for the 12 days of Christmas.
Holidays can be a very strange and confusing time for us, people we never see from one end of the year to the other suddenly turn up in gangs and start fussing over us telling us how well we look while all the time looking at the clock and the door ready to go.
They all want to take a picture of themselves with you so that they can prove they visit and then they are off as fast as they can while still saying “lovely to see you again, see you soon Bye” and then they’re gone till the next holiday or birthday.
January and February are normally the ‘Blues’ months for most people, but for PWD they are especially lonely months because everybody is feeling down after the festive season PWD pick up on those feelings, we can sense when people feel down or up set especially if that person is our caregiver.
PWD need to feel that festive spirit everyday.
I’ve got some great moments from 2014
Meet and giving a talk to Andy Burnham British Labour Party politician and the Shadow Secretary of State for Health.
The Carers Call To Action events
Teaching 6th form pupils about dementia in schools, giving talks to university’s
Hosting the university students event on dementia at Everton football club
Meeting Suzy Webster, (with my wife Joyce) Jayne Goodrick, Chris Roberts and Dr Shibley at the DAA carers call to action in Manchester for the first time.
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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year