"People with Alzheimer Disease need to prepare"

On Saturday I spoke at the MB Care4U conference, a one day conference for caregivers and people with dementia. This was a new experience for me, and quite honestly I was worried that I might offend or upset people with my presentation.   This was interesting, for me, as I am not usually worried about using the “D” word and discussing “palliative care”… but the idea of talking about palliative care in a large gymnasium, to people with dementia, and to caregivers, was definately of concern to me.  I was not sure how I should/could approach it in a way that was helpful and not hurtful.

The topic for my keynote was “It takes a village”.  My hope was to introduce participants to: the challenges of living and dying with a chronic illness and to the benefits of a “palliative approach”being integrated in care.  I invited participants to include members of the hospice palliative team as part of their “village”, and linked them with resources including: Canadian Virtual Hospice, Manitoba Hospice, and Lotsahelpinghands.

As I spoke I noticed a man on the far left side of the big gym, right up near the front. He was totally focused on my presentation.  He had a warm smile on his face.  He nodded as I spoke.  I felt his support. I thought, “This man is a caregiver and he understands the connection between hospice and alzheimer care. He knows what I am talking about! I wonder if his wife, mother has dementia… I wonder if he is a nurse or a doctor….”

I was thrilled when the man approached me after I finished speaking. I asked “Who are you?”  and he gave his name – Gary Quinton.  “But who are you?  What brought you here?”  I asked.

Gary, with his warmth and smile responded “I was diagnosed four months ago with Alzheimer Disease, and what you are saying is so true! People need to prepare

Imagine my surprise. I mentioned my concerns, and wondered if he was at all surprised or worried about my approach.  He responded, “No, this is what I need to understand. Do not isolate me because I have dementia – that is what they used to do with people who had cancer… don’t do that to me!”

After lunch I met with Gary and his wife Judy. What an inspiration to meet them both,  and to witness their openness and willingness to share themselves with the community.  I look so forward to following them, and learning more about them in the months and years to come.  Thank you Gary.  Thank you Judy!

Gary and Judy Quinton at the Manitoba Alzheimer Society Care4U conference

See CANSTAR community newspaper. for an article about Gary and Judy.

Almost 300 family caregivers filled this conference.  The most common comments I heard were “It is so nice to know that I am not alone.  It is so good to know others who understand and who value what I am doing.”

During lunch I sat with Shelley, Judy, Leslie, Cathy,…. who shared their stories of caring for their loved ones. They spoke of committment.

I was intrigued by Shelley’s story.  Shelley has a client whose spouse has dementia.  The client invited her to come to the conference because she knew that Shelley’s mom also has dementia.  In the end the client was unable to come, but Shelley came! Smart client!

If you were at the conference, I would love to hear your thoughts.  Please comment.

All the best to the participants and conference organizers! And many thanks to Maria Matthews who planned the conference!

Warm regards,

Kath

 

2 thoughts on “"People with Alzheimer Disease need to prepare"

  1. My husband is 92, and has been diagnosed with Alzheimers – which he disputes, of course. My daughter advised me to go to your website and I’m glad I did. Geoffrey has refused to go to Emergency ever again, and our GP has kindly put the wheels in motion for the Palliative/Hospice care route -which is a relief to us both. But I am seeing that I may have a long road ahead of me. I am 16 years younger and feel I’m a shadow of my former self, after more than nine years of marriage and seeing him through strokes, TIAs and open heart surgery. Just reading entries on this site has felt like a warm hug.

    • Shirley,
      Being a family caregiver is such hard work. It is even more challenging when there are so many losses – loss upon loss… small ones, big ones,… and losses that are so intangible.
      We are in the midst of caring for my mom right now. And so I will be less present online in the coming weeks. But please know that I send my love and thoughts to you and your loved ones.
      BC Alzheimers SOciety has an excellent program “First Link”. Have you connected with them? THey may also offer some support, hugs, and help.
      With care,
      Kath

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