Life speaks in many ways through countless channels. On the night I first heard this end-of-Hanukkah story read by CBC As It Happens’ “Fireside Al,” I was moved to tears. I was struck by the parallels between the story of a furrier’s goat and the way we treat old people, at least in the first instance. I couldn’t help but be touched when they young hero understands that Zlateh’s bleat carries meaning beyond that which he might have dreamed. I reflected on how we are often at a loss when those we love who live with dementia try to express their thoughts and feelings and are unable to do so in ways we can easily decipher.
I hope you are as moved by the story as I was and still am:
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Five years ago today, on November 5, 2011, my cousin Liane (left) came to see us for what would be her last visit to Mom’s big red brick house on the hill. We marked the occasion with laughs, smiles, tons of fun and an impromptu photoshoot in Mom’s kitchen during which we clowned for the camera:
I share this image now because it reminds that every person who lives with dementia and every care partner who cares for someone who lives with dementia needs love and support. This is a part of life that simply cannot be undertaken alone. If you know someone who lives with dementia, please reach out to them.
I am so very grateful for the support I’ve had and still have from my cousin Liane, from friends near (in the village and across Canada) and far (many around the globe and some of whom I’ve never met), from people everywhere who follow this blog and leave comments (or not) and from complete strangers. Thank you so much from the bottom, top and sides of my heart; I know Mom thanks you too from heaven above. We could not have done what we did without you, and your continued support means everything to me going forward.
Thanks again. #FightTheGoodFight for better eldercare.
Life’s challenges engender choices. Living with Alzheimer’s disease and other dementias, either as the person who has the disease or as someone close to them, brings challenges and choices into sharp focus.
As we live the journey, many among us choose “the dark side.” We become debilitatingly bitter and twisted or angry and grief-stricken. Even worse is that by choosing to view their experience in this way, people miss out on opportunities to find and give healing and light.
Others, like care partners Harriet Lovely Benchoff and Alice Cole, choose to give love and find joy in the process. Benchoff stumbled on the dementia “no longer” list, which names the kinds of things care partners may want to let go of (see the full list here):
I no longer have to be right about anything.
I no longer try to explain everything.
I no longer think I am the only one in this battle.
I no longer question.
I no longer feel guilty.
After reading the list, Benchoff, who cares for her mother-in-law, left this comment:
“I no longer wait for the ‘right moment” to hold her tight and tell her how much I love her.”
I was inspired by her words, and asked Benchoff if I might share them on MyAlzheimersStory; her answer was immediate and unequivocal “Absolutely!” She added this touching comment:
“This morning she was very confused and saying “help me, help me please.” When I asked how I could help, though she didn’t open her eyes, she knew my voice, and she said “hold me, hold me.” I was happy to. I cradled her head in my arms and held her as long as she wanted as she kept saying, ” I love you. I love you so much!” It such a precious moment for me.”
Thank you Harriet Lovely Benchoff for epitomizing your middle name and choosing love.
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I’d been a daughter for 60 years when I wrote the list below with the help of friends and followers. You’d think I would have been and expert at it. Nope. I was still learning. Still exploring. Still discovering what it meant to me. The previous 10 years had changed the way I thought about daughterhood.
I asked friends and followers to share what it meant to them to be a “good daughter.” The diversity of their responses reminded me how individual our paths and relationships are. Inspired by their thoughts and Paul Simon’s tune 50 Ways to Leave Your Lover, I created a list of 50 Ways to Love Your Mother.
It would seem there is no one right way to be a good daughter. Only we can be the judge of our relationships.
50 Ways to Love Your Mother
be caring, sensitive, and aware
do well in school, don’t get into trouble with the law, stay clean and sober, don’t “sleep around” or have children out of wedlock
know your daughterly duties and responsibilities
question everything and be a rebel; question nothing and be a conformist
keep in contact when you’re away
do all you reasonably can lovingly
take care of her when she’s sick
understand her humanity and your own
respect her wishes
respect yourself
advocate for her if she can’t advocate for herself
do little things for her
ensure she has good food, good shelter and good clothing
care for her out of love, even when it’s not easy
take what she taught you and build on it to become an extension of her with your own dreams, aspirations, and desires
become a beautiful friend as well as a daughter
stay close by her side to help her as much as you can
travel far and wide to seek and find your own fortune
be a good person
understand neither of you is perfect
forgive her and yourself
grow into the person God meant you to be
follow your heart’s desire and your dreams, and never forget who birthed you
make her proud
stick up for yourself and defend your rights
stick up for her and defend her rights
follow in her footsteps, replicate her life
avoid making the same mistakes she did, lead a life unlike any she would have dreamed possible
do stuff with her that brings her joy and pleasure
protect yourself, even from her if need be
know when to walk to away and know when to stay
practice patience; practice more patience
give her love and support when she needs it
visit her regularly and spend quality time with her
conquer yourfears
share your joys and sorrows, laugh and cry with her
speak your mind
heal your wounds
listen, listen, listen to her
think, think, think for yourself
see and appreciate her for who she is
love yourself because of yourself and despite yourself
be loyal and compassionate
eat sensibly, call home and drive carefully
be your own person; have your own life
be a good girl; be a bad girl
live purposefully and do your best
get up and keep going after you fall or fail
hold her hand when you cross the road
tell great, funny and touching stories at her funeral
This is by no means an exhaustive list. What would your mother’s list for you look like? What would your list for your daughter(s) look like?
Thanks to these daughters who collectively have about 1,000 years’ experience as such for sharing their thoughts with me:
Sally M, Belinda B., Joan L., Tami Beth L., Alice J.D.Y., Mona N. Rosario V.B. Wyld H., Kathleen M., Sheila S., Helen J. M., Mary M., Joan L., Kathy B., Glenna C., Suzette S., Edith R., British D.S., Alice J. D. Y., Jan R., Kim A. S., Denise A., Siempre M., Stephanie R. J., Alison R., Rebecca B., Beverly D., Suzette S., Sally M., Kathy B., Debie O., Carolyn T., Molly C-K.
Thanks to Tami Beth L. for this particularly touching story. And oh yeah, thanks also to Paul Simon for helping us in our struggle to be free 🙂
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My Alzheimer's Story 