Care Partnering, Life & Living, Love, Memories, Poetry

you took me by the hand

May 2015: Mom loved anything to do with candy and/or having fun. She had boundless energy, and was forever on the go. When I was two, she dressed us both up as “geisha girls” for halloween trick or treating. The next year we were hula dancers. She celebrated all the holidays. Loved St Patrick’s Day in particular. Her spirit was indomitable, even when Alzheimer disease was doing its best to destroy her brain, and she was being inappropriately sedated to contain her irrepressible spirit. She simply did not give up.

This poem is about not giving up together.

you took me by the hand

©2015 punkie

you took me by the hand

when I was a little girl
you took me by the hand

on hallow’s eves we tricked and treated
as geisha girls or hula dancers
in kimonos and grass skirts

either way you put flowers in our hair
and together we were beautiful

now I visit you every day
wondering if this one will be the last
or will it be the next or the one after that

when death seems close I pray
when it’s not, you take me by the hand

your fingers curl around mine:
soft, innocent, trusting,
free of yesterdays and tomorrows

we have walked off and on countless tracks
alone, side by side, hand in hand

this is the most beaten of them all
from one papered brick wall to another then back
hard wood creaking and complaining underfoot

suddenly the whole world
lies inside an old hotel
and a single step has become a miracle

just as you did when i was a little girl
i take you by the hand

you say: i wish i could go faster
i answer: you can, you are and let’s
as your left shoe inches past the right then vice versa

forgotten hopes and dreams hide and seek between our feet
in this minute, this moment, this time

when I was a little girl
we danced and skipped into the lives before us
now we shuffle and sing and leave them behind

i wear a big yellow tulip and you wear a big red rose
but they’re in our hearts, not our hair

we know the end is near, and yet, so far, beyond our grasp
and together we are still beautiful
when you put your hand in mine


© Susan Macaulay 2015. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

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15 thoughts on “you took me by the hand”

    1. Thanks Sandra,

      I’m so sorry for the loss of your Daddy, and so pleased you were able to live life fully with him until the day before he passed away – what a blessing.

      I believe we need to change the way we perceive this disease and the people who have it so that everybody, each and every one who has dementia, may have the chance to live as full and joyful a life as they can and whenever possible without medication that sedates them and cuts them off from the world.

      I believe in helping people to engage life, if that is their wish and their choice rather than taking away their capacity to enjoy it in whatever way they can…

      I’m so glad you liked the poem, and thanks for your comment and blessings 🙂 ❤


  1. Thank you for sharing your stories. My mother was in a serious car accident in 1990 the left her with multiple skull fractures and brain injuries. This is just the beginning. In 1993, 1 year and 1 day from the first accident, she was in second auto accident where she was hit directly in her car door and had a stroke at the same time. More memory loss. In March 2010, she had a seizure and went into a coma. She was on life support for about a week. Oddly, in February, my mother’s birthday and my parents anniversary, we had a family dinner and our parents explained their Living Will and Advanced Health Care Directives. At the end of one week, the doctors advised my Dad, given my mother’s previous brain damage history, they didn’t see that keeping her on life support any longer was going to be of significant benefit. My Dad called all of us kids asked our opinion and we all agreed to remove the breathing tube because that’s what Mom wanted. About 2-3 days later, Mom came out of her coma, Good! But she had Dementia, not so good, but she was Alive, Very Good!! She was moved to a very nice Memory Care Living Center that had a good mix of fairly calm residents, as far as memory loss residents go. Like your mother, my mother was very kind and loving, and that personality stayed with her. She had her good day and not so good days, it was hardest on my father because my Mom couldn’t understand why he was making her stay with “these strange people. I’m Not Like These Strange People!!!” My mother passed away on September 7, 2014. I have been following Amazing Women Rock for quite some time, but one day shortly thereafter, a story about your MUM showed up on Facebook and suddenly I didn’t feel so alone anymore. Here in America, it is Alzheimer’s and Dementia Awareness Month. I have been waiting to see if you would be posting anything from My Alzheimer’s Story. Maybe I’ve missed it, but just in case, I added 2 links to My Alzheimer’s Story, with one post about your Mum’s Story and another was a memory ‘by punkie.’ It was a perfect addition to my Post about making a Memory Box for a family member that is in a Memory Care facility and how this personalized Memory Box can help the family member adjust to their new surroundings, which is exactly what we did for My Mom. Thank you, Susan, for all of your loving support that you offer to Amazing People Everywhere


    1. Thanks for sharing your story Karen,

      Wow – what a lot of trauma your mom and your family went through! Still, it sounds like you found some treasures in the tragedy just as I have. Sorry for the recent loss of your mother, I bet you miss her like I will miss mine when she goes…

      You didn’t put a link to your post here; I wonder if you might do that so I and others can see it?

      I didn’t know this was another dementia awareness month – there seem to be a lot of them and at different times in different places, it can be a bit confusing. I know there was something on in the UK this month.

      Thank you in return for following my site and my blog. I don’t know if you subscribe to this one, but if you don’t, you may consider doing so and then you won’t miss any posts. The subscribe feature is near the top right hand side of every page.


      1. Hi Susan, It was nice to hear from you. When I wrote the message to you, I wasn’t really writing it for anyone else. I don’t know how to attach a link since that particular message hasn’t been written anywhere else. I have left other writings about my mom on Facebook, but the other members of my family are uncomfortable about discussing “the private misery” that my mother went through and would prefer to “honor her memory with dignity and respect” by not letting our relatives and friends know about how her life deteriorated. My family is in denial and wishes to remember her as she was before her brain cells were damaged. ~ I also wanted to share an amazing video that I watched today. It is about using today’s computer technology to engage Alzheimer’s and Dementia patients, thereby stimulating brain activity and social awareness. *I wish this technology would have been made available to my mother and myself during the time of her Dementia. I believe it would have relieved a lot of frustration, anger and depression, for both of us, if we would have been able to “see” each other more often.

        Thank you, Susan, for your time and commitment to making the world aware of the human side of Alzheimer’s disease and Dementia including other memory loss situations.
        Sincerely, Karen Rebmann Deabler


      2. Hi Susan, I would like to share another post with you that I hope you find as fascinating as well as a helpful tool with your mum. This article is about using today’s computer technology to engage Alzheimer’s and Dementia patients, thereby stimulating the brain activity and social awareness for the patients, plus it allows family members that are not in close proximity to where the patient is located to still have visual contact with the patients which is so important for visual memory recognition. ~ I’m sure that if this technology would have been made available to my mother and myself during the time of her Dementia, it would have relieved a lot of frustration, anger and depression for both of us.

        Thank you again.

        Karen Rebmann Deabler


      3. Wow Karen! Thanks for the great link. I’ve been watching the video in bits and pieces and fits and starts over the last few days – SO interesting. I’ll try to feature it in an upcoming post if I remember, lots of things fall through the cracks with me LOL 🙂 it really fits in well with the new post I just did on the 101 activities.


    2. Hello Susan, There is my half to the story of what happened during the years that my mother had Dementia. About a month after she had her seizure, I had a serious case of Bronchitis, which no one, not even my doctors, understands what a devastating effect the virus and multiple medications have on my body. I’ve had Chronic Bronchitis since childhood with a lot of breathing issues. During the 4-year period it was discovered that I have Obstructed Sleep Apnea with Shallow Breathing. My primary doctor, not understanding the complications of all my conditions, had me on such high doses of antidepressants, narcotics and, eventually, opiates for intense pain that I was having Narcolepsy episodes! I was so high when I went to my mother’s memorial that I didn’t feel a thing. I actually injured my back a year before my mother passed away because I was being pushed to drive and carry out heavy activities while under the influence of opiates and fighting to stay awake. In October 2014, I finally got off the opiates and came down with Bronchitis again. It is almost June 2015 and I still have the Bronchitis along with severe Acid Reflux. All of the coughing is aggravating my back pain. That’s when I noticed that the “medications” were making me sick!I have started working with a Naturopath again and have really been making friends aware of Gastrointestinal Candida. Most of my cousins already know about this because of health issues related to food and chemical sensitivity. One of my cousins, who is a licensed Integrated Nutrition Health Coach suggested that I write a blog about my transitions this year. Little did I know that when I left you a comment on MyAlzheimersStory that you would be offering me the gift of that opportunity. I don’t know how to write a blog, how to format one or even who’s content I’m allowed to Share in a blog. But I feel my mother with me and she has presented this format to me. We are two peas in a pod, she is my other half. If she has led me here and you are offering this opportunity, it’s as if she is saying, “It’s OK. Do it!”

      Thank you, Susan and Mum!

      Karen Rebmann Deabler ❤


  2. Lovely poem. Just got through taking care of my mother for a week in my home, while her husband got a break. Still processing the good, the bad and the ugly!


  3. Hello Susan! I’m so excited, last night I set up my email for mother’s blog, My cousin also uses WordPress for her blog and has been giving me good supportive advice on how to get started. She even sent me a post to add to my blog about Dementia communities, like Senior communities, with activities and services geared around the residents.

    I wanted to comment on Eric playing the piano with your mum. That is beautiful and engaging the same way the computers stimulate the brain activity and memories of Alzheimer’s and Dementia patients. It’s a wonderful thing to see if your family member is low functing, but something very simple can bring them back to socially engaging, even if it’s only for a short time. ❤ Karen


  4. I think this is one of the most important info for me. And i’m glad reading your article. But should remark on few general things, The website style is great, the articles is really excellent : D. Good job, cheers


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