it may LOOK cute and caring, but really it’s not




August 9, 2014

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  1. These videos are so heartbreaking; you must miss your Mom so much!! And I love your honesty and courage in continuing to share these videos for the rest of us to learn from…. made me cry, watching it this morning and wondering if we’re doing the same to our Mom in some ways….

    • I really do miss her Lorrie. On the other hand, I feel she is with me all the time through my blog posts, videos, pictures, sound bites etc. I’m SO SO grateful that I documented everything. I’m also thankful that these videos etc. might help others to avoid the mistakes I made, replicate and put into practice the good stuff I learned and thus make the time they have with the people they love who live with dementia richer and less stressful 🙂 The long hello is actually terribly short in the end.

  2. Susan, you are so patient and kind with your mom. And, when it gets too much you just laugh, which obviously reaches her. I love the idea of a fidget blanket. I might have to get one of those myself 🙂

    Big hug,

  3. Susan, when I see your stories, I have so many questions I want to ask but text messages (comments or emails) are so often misinterpreted. Especially because I have not walked in your shoes, I don’t know your mom, and I’m sure you have tried a lot of different coping strategies. Is this a case where she is she just fidgety or maybe wanting to help because she’s cooked in the past? When you give her something to do with her hands in a situation like this, what happens?

  4. I think the greatest gift of all is the ability to be flexible and adjust to your circumstances, and to recognize that sometimes you just have to go with the flow, even if it’s not quite the direction you want to row. After all, does it really matter how we get to the finish line? I applaud you for your wonderful coping skills, your ability to maintain your composure, and your abundance of patience. Kudos for that!

    • Thanks Bonnie and you’re right, flexibility is key. A lot of improv goes on in my life with Mom. I have discovered wellsprings of patience I never dreamed I had. Still, I have also lost it on many occasions – part of being human and imperfect 😉

      • I guess it’s like exercise … the more you do, the stronger you are, and the better you get at it! It seems to me that you’re a world-class champion, even though you probably don’t see it. Your stories and videos have already inspired so many and taught me so much, that I am using in my own life and passing along to others. Sometimes it’s the smallest of details that can make the biggest impact. Thanks for taking the time out of your busy day to share this with everyone.

        • Thanks so much for the positive feedback Bonnie. The purpose of the blog, the stories and videos is exactly that – to help others not make the same mistakes and to learn from what I have learned over the past 10 years which is a helluva’ lot I can tell you!

          When I started this journey I knew virtually nothing about Alzheimer’s disease and there were few resources for caregivers. I floundered around trying to do the best I could. I failed in many ways – tons of opportunities to learn LOL! I hope my experience will at the most basic level let others know they are not alone.

          I still have a lot more of the story to tell… 🙂 I’m so pleased you’re finding it useful and inspiring and are sharing it with others. Yippeeee!

  5. Year ago, when my kids were little I struggled with the same issue. When to do my agenda and when to do theirs. In the end I realized their agenda was usually much more important to them then mine was to me!

    • Yep. And the thing is with someone who is likely closer to death, more vulnerable and less capable, it just seems to make more sense… Why not give them what they want?

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