“My Dad has early onset Alzheimer’s disease, he’s not even 60 years old,” the young woman said.
My heart went out to her. Maybe her father’s illness is what inspired her to take a course in special care counselling. I didn’t ask. Instead, I stood at the front of the class of about 25 students and listened.
“Dad calls me a lot,” she said. “The other day on the phone he talked to me for about a half an hour, then he went blank. He stopped, and then started telling me everything he’d just told me all over again. Before, I would have gotten angry and impatient. I would’ve said: ‘Dad, you already told me that!’ That would have made him angry and frustrated, and then I would have gotten angrier and more frustrated and the whole thing would have escalated.”
She looked up at me and continued. “But this time, after having listened to your story, I did something different. Now I understand more about what he’s going through, and I was more patient. Everything went smoother. Thank you.”
“Yay!” I exclaimed, unable to contain my exuberance. After just four hours of class time during which I shared aspects of what I’ve learned from being a care partner, I was able to make a difference in this young woman’s life, and in the life of her father. Because I shared my story, their journey with Alzheimer’s disease will be a little bit easier. What a gift for all of us.
That’s my goal at the moment, my purpose – to take the tragedy of the past decade, particularly that of the last four years, and turn it into something good, something that will help others. My efforts are bearing fruit; here’s part of what I have accomplished from February 2014 to July 2016, (besides fulfilling my personal role as a care partner every day):
- Started this blog; wrote 350+ posts; generated 250,000 page views
- Averaged 25,000+ page views per month in March/April/May 2016
- Achieved a record 5,000+ page views on July 9, 2016
- Grown the blog’s following on Twitter and Facebook to 3,000+
- Delivered close to twenty volunteer talks to students and care partners in my community
- Produced the BANGS model to help care partners prevent and deal with aggression
- Became an accredited Teepa Snow Positive Approach to Care trainer (see disclaimer)
- Developed my own teaching materials to help care partners
- Expanded my network to include, activists, advocates, authors and researchers worldwide
- Co-hosted webinars, workshops and conversations with TogetherInThis
Hooray! Together we can make a difference. A BIG difference. Please join me in this fight for better care.
Keep up the good work!
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Thanks 🙂 I will! And you too ❤
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Thank you for all you do Susan. I know that when Mum first got Alzheimer’s I searched for things about caring that were ‘real’ and found that there was very little. It is only through people like you sharing your experiences that others can find ways of dealing with their own loved ones.
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Thank YOU Diane! I read all your blog posts and am inspired by your down-to-earth real-life stories that tell it exactly as it is. You are amazing, truly. Please keep sharing and know that your work is being seen and appreciated on the other side of the world. ❤
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It’s great to pause and reflect on the positive things that have resulted from this disease because you chose to fight back, educate yourself, and then share with others. I believe we are truly doing some great things, and I get so inspired when I hear that what we’ve shared has improved someone’s life 🙂
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…..I am living with Younger/Early Onset Dementia, diagnosed 2007….since mid 2010 I have found a drug to halt this horrible disease in me since that time…..I have a website set up to tell the world of my very good fortune……..Tony Hogben, Bribie Island, Queensland, Australia……….
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Tony, happy to share the link if you provide it.
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