#WeAreDementiaStrong: We’re Presenting at the Pioneer Network Conference!

By Brian LeBlanc

#WeAreDementiaStrong is heading back to the Pioneering a New Culture of Aging Conference, July 27-30 in beautiful Denver! I couldn’t be more excited after a couple years off (due to that nasty Covid stuff) to laugh with old friends and continue important conversations around dementia – living with dementia, care-partnering with dementia and, yes, laughing with dementia.

The whole 9 yards. Oh yeah, Maureen will be there, too! (I’d better not forget that! She’d have my head – as if dementia wasn’t already trying to take it from me. Haha!) 

OK, OK, jokes aside, the love of my life and I have a lot of important work to do as we return to this annual gathering of influencers and experts in elder care, dementia advocacy and life-affirming culture change hosted by the Pioneer Network. 

So What’s My Part at the Pioneer Conference? Talking About Dementia, Of Course!

It’s what I do best, right? I’m honored to be speaking twice in an awesome lineup of outstanding minds addressing a range of educational topics pertinent to persons living with dementia, care partners and professionals who serve all aspects of the continuum of care. (Helpful hint: It’s a great CE credit opportunity for professionals.)

If you know me, I’ll sprinkle in a bit of humor. And I’m happy to be joined by my co-presenters, many of whom we’ve worked alongside for years to advance dementia-related education and advocacy nationally and internationally.

‘The Joy of Dementia (You Gotta Be Kidding!) – Creating a New Performance of Dementia…and Life’ 

Thursday, July 28th – 3-5 pm

I’m proud to join coordinator Mary Fridley and member Nancy Nelson of the Reimagining Dementia Coalition as we reverse the “tragedy narrative” and stigma around dementia. We will address the growing demand for more innovative, relational, improvisational, playful and humanizing approaches to dementia care. There’s ample opportunity to embrace community, creativity, joy and growth for persons living with dementia and care partners.

This will be an experiential workshop highlighting:

  • Improvisational games
  • Creative exercises
  • Philosophical/performed conversation 

All of which aim to foster a supportive environment to enjoy the “non-knowing growing” that’s possible, even in uncertain situations. As I often say, “I may have Alzheimer’s, but Alzheimer’s doesn’t have me.” Yes, we can still find joy with dementia.

Persons Living with Dementia Promoting Wellbeing Through Education and Advocacy 

Friday, July 29th – 9:15-11:15 am

Let’s have a meeting of the minds – dementia minds! (And, our marketing director will be happy to know there’s a dog involved.) I’ll be joined by some fellow co-founders of the National Council of Dementia Minds, Mark and Brenda Roberts (and their cute service dog, Sophie), to offer first-hand perspectives on living with dementia.

Each of us has dementia. That’s what prompted us and our other awesome co-founders to launch NCDM in 2019. We’ve learned to cope and build a life worth living in our own special ways, and we intend to share those daily realities. We’ll also address the many ways we provide education and advocacy in our respective communities and spheres of influence.

And once again, we’ll share a few laughs with a funny video and undoubtedly some witty banter during the Q&A portion. 

Join #WeAreDementiaStrong at the Pioneer Network Conference

We’re there to talk. But just as importantly, we’ll be there to listen. Maureen and I will be around the Sheraton Denver Downtown for the duration of the conference. We’re eager to check out a great mix of pre-conference workshops, general sessions and concurrent sessions. We’ll also be promoting the new #WeAreDementiaStrong e-magazine, which is absolutely packed with helpful insights! 

We love making new friends, so don’t hesitate to come up and say, “Hi!”

Peace

-B

Dealing with the Emotions of Life-Care Planning

By Brian LeBlanc

I was upset. So was Maureen. I suspect a number of our care partners were, too. But the conversation needed to be had. We needed to update our life-care plan – to have the tough talk some of us desperately needed.

The tough talk I desperately needed.

Maureen, my life partner/care partner, does so much for me as we trek this path with Alzheimer’s and vascular dementia together. I still cling to my independence – sometimes, I admit, a bit too much – but truth be told I know the reality. I’m dependent on Maureen for a lot of things these days. She’s my everything, and I love her dearly for it. I need her here to help me through the fog most days, to coordinate my schedule and doctor appointments, to finish my sentences, to preserve my steadily fading memories.

I just need her here. 

I’ve grown accustomed to having her here to help me. And I know she always will be, but the more important understanding that I needed to come to was that it’s not all about me. Maureen has a life. She has her own health issues. She has a business to run and clients to see. Without having the time and space to handle her business, she won’t have the health and energy to handle our business and my business.

So We Took Action and Adjusted Our Life-Care Plan

We called a meeting of our care-partner team. (Luckily for us, Maureen is a professional life-care planner and Board-certified Patient Advocate, so she knows how to orchestrate all this!) 

The goal? Have a plan in place for if Maureen can’t be there for short and prolonged periods of time. And thanks to our brilliant friend and care partner Mel Coppola, we arrived at our new 2-2-2 life-care plan. (Maureen wrote an awesome blog about this plan, and I wouldn’t dare speak for her. I know better than to poke the bear!)

So, of course, I’m here to discuss the emotion of it all. Because that’s what I do. As much humor and lightness as I like to bring to these discussions – for the betterment of others living with Alzheimer’s disease and other types of dementia – there’s a sadder, darker perspective that always must be addressed.

For what seems like the first time, this had nothing to do with my health struggles, my personal needs, or my mortality.

‘I Won’t Be Here Very Long to Help You in the End’

How do those words taste? OK, so it’s obviously hard to remember the details. But I remember that emotion just fine. 

The care-partner team met at our place to discuss what should happen if Maureen’s not available for two hours, two days, and two weeks. (Hence, the 2-2-2 name.) I was in the middle of my “what about me?” spiel. I couldn’t fathom it. Why wouldn’t she be available? Isn’t she always supposed to be here to help me?

“OK, Brian, if I can’t attend to my own medical and personal needs, I won’t be here very long to help you in the end,” Maureen said.

It hit me like a lightning bolt. If ever there was a mic drop – that was it. I was immediately disarmed. I went from being angry – and, I hate to admit, a bit selfish – to being more understanding and – if it’s even possible – more in love with her.

How could I have been so blind? I know she doesn’t blame me. Neither do the other members of our care-partner team. When everything has been about you for so long, any person would naturally fall into that pattern.

So with that emotional baggage out of the way, we were free to discuss what to do about it.

The Plan: Learning To Let Go

With the understanding that Maureen, the light of my life, has to have the time and space to be the light of her own life – to help herself and many others like me at her job –  we adjusted our life-care plan. 

We learned way back in November that a health issue for Maureen could derail even the most professionally-crafted life-care plan. We learned that it must be flexible and factor the unexpected.

Who will be there to sit with me for a few hours while Maureen attends to a client or steps away for her own mental health? Who steps up when she must go to the hospital for a few days or even a few weeks?

The 2-2-2 plan, thanks to our tough discussion, now addresses all that. Care partners whose level of commitment may have changed were able to voice their new realities. Immediacy is an issue for some due to work and family responsibilities. That’s cool. Completely understandable. Now we know. 

Someone else, a neighbor perhaps, may need to help in a pinch. We need to engage a home care or respite-care agency to manage things in a more long-term situation. And that’s fine! I’m looking forward to meeting them and us getting to know each other!

And Now, We Move Forward With Confidence

All of our care partners showed up for this meeting – not a single absence. It felt so good to know that our friends and loved ones care that deeply. On a personal note, it was refreshing to sit down and chat with them. It’s hard to maintain relationships when you have dementia. Lots of people stop coming around, and it gets lonely.

But, as I always say: I may have dementia, but dementia doesn’t have me. I’m so happy we were able to get together, have some real discussion and emerge with a new life-care plan that works for everyone. 

Peace,

-B