Care Partnering, Poetry

blessings and curses

My Alzheimer’s story is full of sorrow, joy, love, healing, despair, grief and more. Each day is a roller coaster of blessings and curses – all to be lived, celebrated, overcome and finally surrendered when everything passes, as everything inevitably does.

This poem is about all of that. You may listen by clicking on the player and/or read below.

blessings and curses

a poem by punkie

great expectations tossed in the ditch
come hell or high water, life is a bitch

it fails to deliver what we expect
blessings and curses are all that we get

kittens and kiddies, ribbons and bows
sadness and pain, heart-wrenching blows

curses and blessings, the double-edged sword:
soar like an eagle, be somebody’s ward

we look to the heavens, fear fires below
pray up above is the place that we’ll go

blessings and curses, the two-sided coin:
unending pleasure, a kick in the groin

Jesus and David, prophets and kings
Mohammad and Buddha, and hymns we all sing

angels and demons in huge tugs of war
fashion the future, guess what’s in store?

curses and blessings, joy followed by woe
it’s important to learn to go with the flow

puppies and newborns or slaps in the face
in the hereafter, we’ll have it all aced

still in the meantime, life must be lived
blessings and curses, to each other we give

now ’tis the season, to decorate trees
open up presents, fall to our knees

curses and blessings up the chimney they dash
like prancer and dancer poof! gone in a flash

a new year will soon gladden our hearts
bring tears to our eyes, let fly cupid’s darts

more curses and blessings lie in the wait
being human, on earth, this is our fate

expect what you get, not what you want
put a spring in your step, walk with a jaunt

your curses one day will turn to delight
with blessings to all, and to all a good night


© 2016 Susan Macaulay

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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Challenges & Solutions, Toward better care, Videos

TED aphasia video great for dementia care partners


As Mom’s dementia evolved her language skills changed, and while others seemed not to understand what she was trying to communicate when she spoke, I often found it relatively easy to read between the lines and “get” her meaning. At the time, I didn’t know why or how I was able to decipher what often sounded like gibberish, but I instinctively knew she knew what she was trying to say; she was simply unable to locate the words.

Recognizing the symptoms of aphasia, even though I didn’t initially know the technical term for the condition, allowed me to communicate with Mom using words and language for much longer than I otherwise would have. It also helped me to remain patient and to listen more carefully and more fully, which in turn fostered a deeper connection between us. It produced amazing conversations about love, how music helps longevity and more.

Being able to discern the underlying meaning behind the jumbled words that may result from aphasia is an important component of seeing dementia and the people who live with it in a different light, and thus reducing the practice of inappropriately sedating them with antipsychotic medication.

This excellent TEDed video on aphasia is a great reference full of useful information about aphasia and how it manifests. A “must watch” for dementia care partners.


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Care Partnering, Hope, Joy, Life & Living, Love

5 good things alzheimer’s brought me more of

150615 Mom and me

Fellow blogger Rena McDaniel ran a post entitled I’VE BEEN ROBBED! on her blog The Diary of an Alzheimer’s Caregiver in which she described the devastation Alzheimer’s disease has wrought in her life.

I know where she’s coming from; so do millions of others. I strongly believe we need to change that. We need to change the way we think, write and deal with the disease and the people who have it. After I read her piece, I challenged Rena to write a follow-up about the ways in which being a dementia caregiver has been a blessing in her life. She responded with this list of blessings which include:

“I am blessed… that everyday I don’t have to worry that she is being neglected, abused or uncared for. That I am able with the help of my wonderful husband to provide…a safe, comfortable… environment for her to relax in with no worries.”

Me too Rena! I also wrote about some of the blessings I received as a care partner to my Mom who died on August 17, 2016:

1) Time

Had Mom not developed dementia, I likely would have stayed overseas for several more years. On my return to Canada, I would probably would have chosen to live in another part of the country, further away from her, somewhere far to the east or west. Because of her illness, I spent about three months a year with her from 2005 to 2011. I lived with her 24/7 in her own home for a year (2011/12) and saw her virtually every day after she moved into a nursing home in November 2012.

Dementia gave us the priceless gift of time. I’m grateful to destiny for this thing that was meant to be.


2) Depth

Many people experience dementia as the gradual and painful loss of someone they love. In fact, Alzheimer’s disease is often described as “the long goodbye.”

For me, it was a long hello. It afforded me the chance to more fully understand who my mother was as a person. I saw it as a peeling a way of layers to reveal the essence of someone I’d known my entire life and who I grew to know in a different way. Our decade together from 2006 to 2016 gave me the opportunity to know her better than I ever would have otherwise.

Diving deep into our relationship has been scary, rewarding and unexpected.


3) Healing

In the process of being her care partner and understanding her better, I was also been able to explore aspects of our relationship that were hurtful and harmful to me. I found ways to let go of those parts and to grow others that better served my higher self and I hope hers as well. I feel extraordinarily fortunate to have cleared negative feelings from my side of our relationship before Mom left this world.

We had some amazing conversations and incredible experiences together. Many of them profoundly touched my heart.


4) Practice

Living “in the now” gets a lot of lip service. Living with someone who lived with dementia forced me to practice the principles of being aware in ways I had never done before. Dementia has no past, present or future. It is this second, this minute, this moment in time. There are no yesterdays or tomorrows; there is only today. Now is it. No more, no less. The practice of being more present in pain as well as joy is a great gift. It creates a deeper connection with self and the universe.


5) Opportunity

The experience and the process I went through with Mom taught me a multitude of new things about dementia, music, compassion, conflict, communication and more. Had I known in 2006 what I do now, I would have done things differently. On the other hand, I now have a huge opportunity to help others do better than I did.

I can take what I’ve learned and use it to reduce others’ suffering. I can contribute to the pioneering movement to change the way we engage people who live with dementia. All of these things are great gifts, and I have still more to share — stay tuned.

In the meantime, take a look a Rena’s post to see how she’s been blessed in different ways than I have been.


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