Death & Dying, Love, Spirituality

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

In the three short videos below palliative care physician Dr. Mike Harlos gives advice aimed at other palliative care doctors and nurses. He talks about how to communicate with family members as someone they love approaches death.

But I think there’s something for all of us learn from his gentle wisdom on how to interact with those who find themselves at the side of someone they love as that person dies. It also struck me that what Dr. Harlos says applies equally to people who live with dementia who many others think are “gone” long before the actually are.

In these three short videos (each is less than three minutes long), Dr. Harlos shares simple pieces of practical advice with respect to communication:

  1. Assume they can hear you
  2. Take it out of the room
  3. Make space for final conversations

I invite you to watch and listen, and hope you will be as deeply touched by Dr. Harlos’s words as I was/am. Just listening to his voice at once calmed me, and brought me to tears. As I watched the videos, I  felt as if I were in the presence of an angel, albeit an earthbound one for the moment. I might have made the experience of dying with my mom more beautiful and meaningful had I been exposed to the Canadian Virtual Hospice before her death instead of after.

1 ) Assume they can hear you

Conversations at the bedside: Can my loved one still hear me? from Canadian Virtual Hospice on Vimeo.

2 ) Take it out of the room

Conversations at the bedside: Being mindful of what is said from Canadian Virtual Hospice on Vimeo.

3 ) Make space for final conversations

Giving space for final conversations from Canadian Virtual Hospice on Vimeo.

I wrote a poem about my final moments with my mom; it’s here.

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Death & Dying, Life & Living, Love, Spirituality

forever is not long enough

Amy Ferris writes. A lot. She has opinions. Strong ones. She has a following. A large one. I am among her fans. She’s fun, interesting and provocative to read. I love that she uses the word fuck often, and with impunity. For some reason, this piece in particular spoke to me. Maybe because of what’s happening in the world right now. Maybe because I’m still grieving the loss of my mom; maybe because I always will. Maybe because I’ve had similar experiences that I couldn’t quite put into words, but that I immediately recognized in Amy’s. Whatever the reason, I’m pleased to be able to share this reflection, which I hope you will enjoy it as much as I do.


There is an interfaith chapel at the New York-Presbyterian/Weill Cornell Hospital.

My best girl’s husband is very ill. Intensive care. I drove her into the city so she can be with him, kiss him, smooth his hair and look into his eyes and tell him how much she loves him; to hold his hand and watch him sleep. She couldn’t bear driving into the city, she hadn’t slept last night, and who wants to drive all alone for two fucking hours – 4 roundtrip – in traffic while your mind is racing all over the crazy-ass place.
I told her today it would be just like a girls day out, except, you know, without all the fun and the wine. That sounds peachy, she said, with an extra side of sarcasm.

I left them alone in his hospital room, while I moseyed on over to a fancy schmancy nail salon on the upper east side and told the mani-pedicurist to please, please, massage my feet for at least seven hours. So much nervous laughter; she had no idea if I was serious. And, why would she? I settled: 20 minutes and a pedicure. Heaven. Or for now, close enough.

My friend texted me: a half-hour more, please? She wanted a half hour more with him. To wash his face, and feed him some food, and you know, more time.

Of course.

More time.

Who doesn’t want that.

I found myself sitting in the interfaith chapel. A place I never go into, never wander into. Ever. I sat in row by the exit door. Four men – all Muslim – kneeling on prayer rugs in the front of the chapel, praying in unison, as if it were perfectly choreographed. A beautiful black woman, impeccably dressed, across the aisle, her eyes prayer closed as she held onto – grasped – the cameo pendant around her neck. Two jewish women, maybe, possibly, a mother and a daughter, sitting a few rows in front of me, their heads slowly nodding, bobbing, speaking hushed words I couldn’t understand. A young white boy, a just turned teenager, his body rubbing up against the wall, as he fought back tears. A stain glass mandala, massive carved candlesticks, Giacometti-esque figures, a long narrow altar table draped with starch linen. Just the right touches. A small intimate room for personal prayers.

I closed my eyes, I thought of my friend, his joy full big life, his now battle, his massive bravery. All of that became my prayer. I thought of my gorgeous friend; her heart, her worries, her fears, her deep uncluttered and unconditional love for him; all of that became my prayer. I thought of Ken and his health and his worries and his uneasiness about showing, revealing, his frailty and how that keeps him more to himself and that became my prayer; i thought of some friends who I haven’t seen or spoken to in a while, and how in that moment, that exact moment, in that chapel i knew they were etched deep in my heart and nothing could or would change that and that became my prayer, and I thought of my mom and dad and I tried to imagine them together as I squinted real hard conjuring them up in my minds eye, and how on some days I longed for them and that thought led to my brother, and to my entire family, a family that is no longer, and for a few long unplanned moments I travelled from anger to resentment to sadness to peace, and as I stopped trying to imagine their faces, I began to wish them well and that became my prayer.

You can hear a pin drop.

And I thought about this world, our world, and the black woman praying across from me as she grasped her cameo pendant, and the young white boy velcro-ed to the wall, his bottom lip quivering; and the muslim men deep in prayer, and the jewish women reciting something under their collective breath while they now held hands, and we were all, no doubt, silently offering up our fears and our worries and our heartache and our greatest doubts and deep need for hope and comfort and ease and love, and rekindling – doubling up – on promises once made, somehow forgotten or lost, and bartering with the Universe or God or deities or cameos or Netflix or John Stewart or whoever you call it; bartering in hopes that what we offer up – exchange – will add more years more days more weeks more months – more time – enough time to make good, to say I’m sorry, enough time to admit fuck ups and fuck downs and fuck offs, enough time to mend misunderstandings, miscommunications; some scattered misfortune; enough time to say – ad nauseam, i might add – I can’t fucking live without you; enough time to love more, to love better, to get love right, to do it right; enough time to say I won’t let you go so fast; not so fucking fast. I got you.

In that chapel on this day with death circling every floor; the absolute take away: forever is not long enough.


Editor Amy Ferris is the author of Marrying George Clooney: Confessions From a Midlife Crisis, which was adapted into an off-Broadway play. She lives in northeast Pennsylvania with her husband.

Find her on Facebook and Twitter @amyferris.


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Family, Life & Living, Love, Poetry, Spirituality

an alzheimer parent’s poem

I always feel sad when other care partners feel bad when their parent or parents who live with dementia don’t recognize them anymore. It’s a double tragedy. The adult child feels a tremendous sense of loss and grief, and those feelings cannot help but be felt by their parent who lives with dementia because the disease, which involves losses of many kinds, also increases emotional sensitivity. That is, when we feel sad, they tend to feel sad. When we feel angry, they tend to feel angry too.

I believe the ones we love and who love us always recognize us, if not on the surface, then surely at the core. This poem is about that.  I hope it may bring comfort, solace and a change of heart to those who feel despair in these kinds of situations. These 20 questions may also help.

an alzheimer parent’s poem

Dedicated to the hundreds of thousands of children who feel loss and despair when a parent who lives with dementia doesn’t recognize them.

Listen here (read below):

an alzheimer parent’s poem

©2017 punkie

i may not know your name my child
but I love you just the same
disease can make my brain misfire
my mind play silly games

sure that has no effect my child
on the fact that you are mine
you have been for a long long while
you will be for all time

i feel our kinship at my core
you are my flesh and blood
our hearts are one forevermore
come sun, or rain, or flood

i will never let you go
you are safe, don’t flee
no past, no future though
are in this place with me

your name may be forgotten
the one that i bestowed
still your eternal flame begotten
burns brightly in my soul

despair is not your destiny
our beings are intertwined
look beyond the things you see
my love there you will find

©2017 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

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Death & Dying, Life & Living, Spirituality, Videos

she knew she would be an angel soon


January 17, 2014, (I miss her): A shaft of light settles just so on her white hair. Her eyes are unusually clear and bright. Maybe she spit out the meds this morning. Go Mom go! Her right eye reflects the sun as it shines through the window; the left is hidden in shadow.

“You look like an angel Mom,” I say, caught in her beauty and the moment. Sandy, the sweet stylist who comes to do Mom’s hair after her Friday bath, wraps a stray wisp around the curling iron, rolls it close (but not too close) to Mom’s scalp, and waits for it to set.

“I will be one soon,” Mom replies.

My eyes meet Sandy’s. It’s an instant of profound knowing that caregivers, hospice workers and those whom they serve share unexpectedly – one of those times in which there is no denying the depth of our connection with the divine. Mom knows. And she’s letting us know she knows.

While her brain and body struggle in the mid to late stages of Alzheimer’s disease, her heart, soul and spirit are ready to be set free. She rarely strings words together to form a sensible sentence anymore other than when she sings, or when there’s a break in the clouds as there has been with her reply. Often her speech is disjointed and random, a pick-up-sticks game of subjects, verbs and objects with no real meaning, except when the occasional tear in the increasingly thin veil between here and there allows something astonishing to slip through.

I’m not a religious person, not at all. But I recognize divinity when it touches down. As Sandy curls Mom’s hair on this Friday afternoon in January, 2014, I imagine an invisible-to-us angel singing in her ear:

“We’ll all come out to meet you when you come. We’ll all come out to meet you when you come. With a hug and kiss we’ll greet you, yes, we’ll all come out to meet you when you come…”

My mother knows she is in the final stages of her journey. Maybe in some ways she’s lucky. Some of us are taken suddenly, snatched without warning from this world we think belongs to us but clearly doesn’t. Death by ambush? Or a long, drawn-out siege? Either way, living fully is our duty, discovering joy is our privilege and life breaks our hearts  whichever path we choose. Life is meant to be lived after all, joys and sorrows notwithstanding.

Mom still lives with gusto. Maybe that’s why she’s not quite ready to go around the mountain. But she’s getting closer to being ready. When the time is right a whole host of angels will be there to “greet her when she comes.” And she’ll sing right along with them. I’ll bet she’ll be wearing pink pyjamas. Heavens! In the meantime, we sit and talk of random things while Sandy does her hair.

Mom joined the angels on August 17, 2016.

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Care Partnering, Life & Living, Love, Spirituality

what it means to be or not to be


To be, or not to be, that is the question—
Whether ’tis Nobler in the mind to suffer
The Slings and Arrows of outrageous Fortune,
Or to take Arms against a Sea of troubles,
And by opposing, end them? To die, to sleep—
No more; and by a sleep, to say we end
The Heart-ache, and the thousand Natural shocks
That Flesh is heir to?

From the play Hamlet, by William Shakespeare 


“Doing” and “being” are sometimes separate and sometimes intertwined. “Being” with somebody acknowledges their humanity and experience in a different way than “doing” does. Doing is about “service;” being is about spirituality and connection. Being with somebody is important to our health because meeting emotional and spiritual needs is as vital to well-being as fulfilling physical needs is.

During the time I cared for my mom, I brought joy and happiness into both our lives by doing things together: gardening, cooking, walking, flower arranging, and more. As her capacity to do these kinds of things declined, I found other ways to help her engage with life: walking in a slower way, sometimes even just standing, singing, “learning” to play the piano and the guitar, rhyming, and simply enjoying each other’s company.

As the disease progressed, we spent more time “being” than “doing,” partly because Mom was unable to do many of the things she had done before, and partly because her needs changed. So what does it mean to “be” with somebody? It begins with listening. By listening I mean being present and paying attention – paying attention to the small details of her physicality and how she was experiencing the world and adjusting my behaviour in such a way that it reduced her anxiety and increased her peace and enjoyment.

I further developed my observational skills. I learned to pay attention to the physical and social environments in which we found ourselves. Was it hot or cold? Quiet or noisy? How were the people around us interacting with us? How were we interacting with them? Not from my perspective but from hers. I became more sensitive to the way she talked. I learned to interpret her sentence fragments and jumbled words and to decipher the meaning behind them. I asked myself questions: What is she trying to communicate? How can I help her to express herself more fully and therefore be with her in her experience in the moment? I tried to discover the underlying meaning of her alphabet soup.

We had conversations in which there are rather long periods of silence. During these conversations I noticed she was still processing information; it was just at a much slower rate. She knew what she wanted to say; it was a matter of finding the words to communicate the thoughts and then helping them to make the journey from her brain to her mouth.

She was more aware of her environment and what was going on around her as well as within her than it might have appeared. I believe that as certain parts of her brain become more damaged and disabled, other parts compensate for the losses. Mom developed what I call “intuitive clairvoyance.” I know this may sound crazy to some people, but I saw clear evidence of it myself.

I watched carefully. I looked for tiny changes in her facial expressions and noted where her eyes moved. I “held space” for her to communicate with me at her own pace and in her own way. I tried to put myself in her world, to see out of her eyes. I listened with much more than my ears. I listened with my whole body and especially my heart. I didn’t rush her.

I asked lots of questions. Sometimes she answered, sometimes not. Often we just sat in silence. Just being together was enough. I believe emotional and spiritual connections as well as physical closeness are important to all creatures, and maybe even more so to the elderly (human and otherwise) as their experience of the world changes. I “read” Mom’s “state” by the expression on her face, the tilt of her chin, the look in her eyes. Sometimes she reached out to me and put her hand on mine or on my forearm or on my face. I may or may not have responded verbally, depending on the moment.

Holding space for somebody by simply being with him or her nurtures the spirit; it helps them to know they are wanted, valued, and still connected to their own humanity as well as the rest of humanity. It’s enriching for everyone involved. I also believe that being with people with dementia means not giving up on them. It means actively seeking out whoever they are now, and connecting with them on whatever level they are able to connect. It means providing them with  opportunities for growth. For me, it’s not about mourning the loss of the person they once were; it’s about seeing and acknowledging the person they are now, as well as the person they are transforming into. It’s about validating their experience and process. I believe we change and evolve until we die. It’s important to be with each other in real way until we are no longer in this place, because being together feeds the spirit, and when the flesh is no more the spirit lives on.

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Death & Dying, Hope, Spirituality

a field of poppies for heidi’s mom

13874960 - poppies in a field in black and white

We all die in one way or another. Too many in war. Too many in childbirth (still!). Too many too young. But we all die eventually. And we all leave loved ones behind. They key is to keep living until the end, and not to die before we’re dead.

There is beauty in remembering those who have left this place for another, and solace in shared grief. This video speaks to both. I would like to dedicate the video and this post to Heidi Sloss’ mom, who, though she probably didn’t know it, is part of the fabric of this blog. Heidi supported me from the moment she found me, which was early on in the days of Her comments helped me to keep going. Knowing I played a part in Heidi’s and her mom’s Alzheimer’s journey means a lot to me.

Thanks to your mom Heidi, for bringing you to me ❤


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Death & Dying, Hope, Spirituality

7 ways to honour living and dying with dementia

Dame Cicely Saunders live until you die

I love this beautiful quote by Dame Cicely Saunders, founder of the hospice movement. It captures what I wish for my care partner, myself and for all us: to live until we die, and to die in peace when the time comes.

Here are seven ways to honour those living and dying with dementia:

1) know with certainty that they there, always, until the very end and beyond. It may be more difficult to see past the external manifestations of the disease, but it’s even more critically important to let them shine.

2) respect their rights, especially the right to express themselves in whatever way they can – an angry word, a piece of resistance or a single breath may embody the experiences or wisdom of a lifetime.

3) listen carefully using all your senses, including your sixth sense, to connect with their soul and their spirit; let your broken heart be an open heart.

4) love them for who they are now, don’t waste a moment wishing they were somebody they were once upon another time.

5) celebrate their life while they’re still living, even as you grieve their imminent departure. Remember there will be plenty of time for mourning when they’re gone.

6) smile readily, laugh lightly, sing sweetly, touch gently, experience freely, hold tenderly, love boundlessly, and perhaps most important, let go gracefully.

7) understand the loss is in us.

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Advocacy, Life & Living, Spirituality, Toward better care

rethinking the pathological myth of normal

41846058 - crazy expressive trendy dj girl in bright clothes, headphones and bright dreadlocks. disco, party. bright fashion.

I’ve never done well in the boxes society and others wish to confine me. I like to colour outside the lines. I hate rules and policies. I’m a true Aquarian: independent, unconventional and thirsty for knowledge and discovery. That may be why I have found it relatively easy to understand and accept the behavioural expressions of people who live with dementia as “normal,” and to embrace the work of innovative thinkers such as Dr. Gabor Maté.

In Maté’s view, normalcy is a continuum on which we all exhibit traits and behaviour that have traditionally been labeled as “normal” and “abnormal.” Behaviour, he says is “contextual and cultural. Disease is not an isolated phenomenon of the individual, it’s a culturally constructed paradigm.”

I would suggest that part of the stigma associated with Alzheimer’s disease and other dementias arises from the limited ways in which arbitrarily define what “normal” is. Expanding our universe to create space for behaviour to which we may not be accustomed, but which is not inherently better or worse than what culture specifies, will, I think, result in a more inclusive, rich and diverse world.

I also love Maté’s take on the impact our materialistic society has on the way we value, or more to the point, devalue the elderly and other who don’t feed into the production/consumption frenzy on which western society has increasingly come to manifest.

“What we value is not who people are, but what they produce or what they consume,” Maté says. “And the people who neither consume nor produce are ostracized, shunted aside and totally devalued. Hence the rejection of old people, because they no longer produce and they’re not rich enough to consume a lot either. So the very nature of this materialistic society dictates or generates and promotes the separation that from ourselves.”

I suggest it also separates us from each other. Food for thought.

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Love, Poetry, Spirituality

i see you, i love you, i miss you

Version 2
I love this pic of my amazing mom Patty and me, September 9, 2015.

Many people think people who live with dementia disappear. I used to think that too. I was so wrong.

Alzheimer’s disease and other forms of dementia are brain diseases. They cause changes in the brain. They do not cause changes in the heart, the soul or the spirit. The poem below, which I wrote and first posted in April 2014, is  dedicated to seeing people with dementia as the people they still are. It’s dedicated in particular to my mom Mary Patricia (Patty) Eustace Macaulay who died on August 17, 2016. I was blessed to hold Mom’s hand as she left this world, and to be able to write about being with her in her final hour here.

I saw her ever so clearly in these last years, and together we breathed her last breath. What a blessing.


i see you

a poem by punkie


you are
not the you
i have watched,
and hoped for
these 60 years
and yet
you are

i see you
then and now:
a brave soul

i see
unmistakable you
in a raised eyebrow
and the furrow by its side

i see you
in a gesture:
the roll of an eye,
the bite of a nail,
the set of an upper lip,
the clap of a hand

i see you
in the way
you touch
your hair
with your
to feel if it is
as it should be

i see you
in a barely
discernible reaction
to something
or someone
you like
or don’t

i use
these hints
and clues
and traces
to recreate you
even as god
reclaims you
bit by bit

no one else
sees you
as i do

there you are
in a shaft
of light
or a break
in the clouds
or at the piano

i see you
and me
and love
in the mirror

i see you
more clearly
more closely
more acutely
than ever before

i see you
as you were
and as you are
not as who
i wished
you had been

i see you
even with
my eyes closed.
even through the tears.


April 10, 2014

© Susan Macaulay 2016. 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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Death & Dying, Hope, Poetry, Spirituality

the loss is in us



On February 27, 2015, I lost a friend. A couple of weeks later, I went to his funeral.

Sometimes friendships take years to develop. Other times they are forged in minutes.  This one was somewhere in between.

At the funeral service I reminisced with my new friend’s daughters, who had also become friends, about how touched I was when he would compliment me and others. He liked coffee. We drank tea. We ate cookies. He preferred none. We shared space, conversation, music, and fragments of life with him and his wife and family.

We talked about the weather and incidentals that didn’t matter at the time, but in the end somehow mattered a great deal. He rarely sang. On one occasion he joined in a rendition of Amazing Grace. His wife often shared stories of their life together. We loved the one about their place in Montreal with the woman who may have been of “ill repute.”

“You lived in a brothel?” I teased, and we all laughed.

We admired the matching boutonniere and corsage he and his wife wore on their 68th wedding anniversary. Sixty-eight years of marriage. That’s something.Then he became gravely ill. I didn’t know his nickname or that he liked to laminate things. I found out at his funeral. I can’t imagine how devastated I will feel when Mom leaves, and my heart goes out to our newfound friends on the loss of their beloved husband and father.

After the funeral, I told them about a poem that made me feel hopeful about death and dying:


The Sailing Ship

What is dying?
I am standing on the seashore.
A ship sails to the morning breeze and starts for the ocean.
She is an object and I stand watching her
Till at last she fades from the horizon,
And someone at my side says, “She is gone!” Gone where?
Gone from my sight, that is all;
She is just as large in the masts, hull and spars as she was when I saw her,
And just as able to bear her load of living freight to its destination.
The diminished size and total loss of sight is in me, not in her;
And just at the moment when someone at my side says, “She is gone”,
There are others who are watching her coming,
And other voices take up a glad shout,
“There she comes” – and that is dying.

Bishop Charles Henry Brent (1862-1929)


When I reread it, I realized how it might also apply to people with dementia.

This line in particular struck me:

“The diminished size and total loss of sight is in me, not in her…”

I feel more strongly than ever that people with dementia are here with us, and that the loss lies not in them, but in our inability to fully see them.

There is hope in the journey and the possibility of renewed life in distant places.

Pink sails are a bonus.