what confusion felt like to my mom in the later stage alzheimer

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October 23, 2014: Today I had reason to revisit a video I’d made in which Mom talks about how she feels about her state of mind I don’t have words for the way in which I’m inspired by her courage and determination, particularly in view of the daily challenges she faces. She is one amazing woman walking one daunting path home one step at a time. I’m in awe of her courage every single day, and grateful for the time we spend together. The clip below is also part of a longer conversation we had on August 19, 2014, which included how to keep the faith when you are going through a rust patch.

Living with dementia is a roller coaster, just like the rest of life. Mom and I have many moments of joy and happiness to balance these more difficult ones. Here are three examples to lift your spirit and put a smile on your face:

  1. tiptoe through the tulips
  2. ain’t she sweet
  3. mcnamara’s band

To better understand what it feels like to live with dementia of the Alzheimer’s type in a long-term care facility, see this series of stories told in the voice of Alzheimer’s Annie.

Mom died on August 17, 2017.

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8 Comments

  1. Thank you for creating this blog. I’m mums carer and she’s advanced too. It’s so hard to watch your mum deteriorate but im so lucky to be holding her hand through this journey and not leaving her to deal with this alone. You and your mum are very special and your bringing such positive awareness of this desease. It is hard and you get tired but when they smile, reach for your hand and give you a little kiss it makes it all so worthwhile. They hold our hands when we were growing up and now it’s our turn to hold theirs. Thank you for being you and loving and caring for your wonderful mum with so much love and understanding. I know I’m not alone in this journey from pages like this and there are so many of us out there but by joining eachother and seeing others journey brings hope and assurance we are doing the right thing xxx

  2. <3! Thank you for sharing ! I want to give you both a big hug!
    My Mom is right there as well and I love her beyond words! Through the good times and bad, we are truly blessed for this special time with our aging parents!

  3. Thank you…My beloved mother left me in April, 2016, two months after my beloved father died. This disease is horrible, No one should have to endure this. No child should have to see their beloved parent suffer like this. I am so happy my mother went to be with my father. She missed him terribly and now, they are together, happy and healed. I hope you are doing well despite your loss.

    • Thanks Stephanie. I miss my mom, but I’m very grateful to have shared the final part of her journey, and to have recorded many wonderful times with her, all of which I cherish.

      I’m so sorry for the loss of your parents and wish you love and peace going forward <3

  4. Susan, that was a beautiful and amazing conversation. Your mother was so transparent about her confusion and frustration. I loved her joke about the peas and the pods. You are fantastic with her. Thank you for sharing this. It reminds me of so many sweet moments I had with my mother. God bless you.

    • God bless you too Millie. I’m so grateful that I recorded and filmed some of our conversations and that I can be present with her again even though she is “gone.” She was an amazing woman whose courage and determination continue to inspire me.

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