The value of being together

The DAI Action Group has become very active, and is currently working  on various projects for our members, including fundraising to enable DAI to sponsor as many of our members (and their care partners) as possible to attend the ADI Chicago conference in July this year.

At the Action Group meeting today, one member asked how many had attended a conference; some members had attended conferences previously so know well how empowering they are, but others had not.

Our current Chair and also a co-founder of DAI then talked about how she and her husband Peter felt after attending their first dementia conference, and in particular the really positive benefits of meeting with and lisening to others facing the same experience.

One of the other members at the Action Group meeting also said:

I will NEVER ever forget in my heart going to my first conference, and the first person I met was Susan Suchan – HUGE impact xxx

Kate has given us permission to share the following blog she wrote, after she and her husband had attended ADI 2012 in London.

Wrapped in a cocoon

Yesterday when we were leaving the conference venue, I felt overwhelmed with sadness about departing, to the point of tears running down my cheeks. We walked through the long hallways holding onto each other, and I wondered why I was feeling so sad.

Then I realised why; it was because we had been wrapped in a cocoon. A cocoon of belief, love and truth for four days, with like-minded people. People who are also on the dementia train, travelling their own journeys, but for a few days travelling with us too. People who never once questioned if I had dementia. People who never questioned our tears. People who never once said it isn’t as bad as it is. People who just like us are living ordinary lives, but who are surviving well with love and hope, and are facing up to dementia and slapping it in the face. People who are functioning well beyond their clinical pictures too, but who also tell stories of how hard they work not only to survive, but to do simple things like talk, and how underneath their brave exteriors, things are declining.

Some of  them talked about the changes since the last conference, and the occasional overwhelming fear of what is ahead of them. But many of these same people, like me, also see dementia as a gift. A gift of change, and of love and hope in a new world. A gift of some old friendships having grown stronger, of renewed friendships from days gone by, the people who are willing to jump aboard our dementia train, and the gift of the new friends that we meet facing the same journey. It feels as if these new friends have known us for years, as they know things about us that some of our best friends don’t, some things that we hadn’t yet been able to verbalise, and things I haven’t thought to share on my blog, but might in the future. Having friends know exactly what it is like for you makes it so much easier for them to understand and support you, and helps reduce our load too.

Last night, we dined at a lovely spanish restaurant with two of our younger friends from home, who are currently working and living in London for a year. They talked easily and openly with us about dementia, and the conference, and of many shared memories. Joanna and I talked about dementia, and about the responses of her generation, and that of our sons generation, and of facing dementia with us. They are so much more accepting and open; these young people are so much more willing to talk about things that seemed to be banned in my youth. Mental illness, homosexuality, dementia, broken hearts, all topics that are not shunned by them like they were when I was young.

Perhaps the social networking craze has allowed them to just be who they are, openly and honestly. Yes, I know, it is a little confronting sometimes reading what they say, hearing how they think, accepting their use of language that in my youth was considered blasphemous, but they are honest and open and they share with each other. I am in awe of them, and hope to learn more about how they manage it, as it allows them freedom I can only dream about. I am open too, but it is not so easily or comfortably accepted by my peers or elders. 

I am hoping my dear husband will respond to this with his précis of a presentation from the conference yesterday, that I could not even understand, but one I would have once revelled in listening to and taken notes, and is now beyond my capability. Thank God for my back up brain, in the name of Pete.

Talking of cocoons, he needs to be wrapped up in a cocoon occasionally too, and he felt the same acceptance and love of these strangers at the conference as I did, now our new friends. He also felt some of the stigma people with dementia live with, as there were academics who talked about carers with the same disdain and deference as many talk about people with dementia.

One of the groups we met have a saying, nothing about us, without us. My dear husband felt the anguish as a care partner of being studied and critiqued, without ever being asked how he felt. He felt the challenge of being labelled a carer or care giver, rather than an individual with his own feelings and beliefs. He was with me on the Friday, when I presented a paper called Non Pharmacological Interventions for Dementia, to a room full of pure researchers. It felt like being thrown into the lion’s den, a room full of hostile people, showing almost tangible disdain for me, unwilling to accept there may be a way other than drugs to manage this disease.

My message on that day was heard positively by a few people who felt encouraged to view things differently. A neurologist from Vancouver spoke with me that night, a specialist who looks after real people, not researches them as facts and figures. She said she has been inspired to review how she treats her dementia patients; she has two types of patients, those with dementia, and those with brain injury, and realised after my talk she might be lacking in her care of people with dementia. Instead of sending them home with a message to disengage from their real lives and take up activities that may in fact not be meaningful to them, she is going to trial treating them as brain injury patients with authentic rehabilitation, and support for the disabilities brought on by dementia in order to maintain their lives. She is going to stay in touch and let me know how it goes, and I was excited beyond belief to have made one person think differently. It made up for the hostility I felt from some of the others during that presentation. My dear husband felt it too, so much so he felt like tripping someone up, but has since told me he restrained himself as I would have thought he was being childish!! At the time, I might have joined in, but in retrospect, I am so glad he did nothing other than sit there and send me virtual love and support.

We have both missed the feeling of being wrapped up in our cocoon, but know there are many out there who are supporting us all the way, and that we have many friends at home who do still surround us with love, in their own ways. I thank you all, my new friends, my old friends, and my online friends.

Since writing this blog in 2012, Kate Swaffer said today:

A lot has changed, and yet it too often feels as if nothing has changed.

Final reminder: there are still a few hours to submit your abstract for Chicago, so please get in touch with us if you need any support to do so.