Tag: grieving

Death & Dying, Life & Living, Love, Poetry

don’t mourn me long

My Alzheimer's Story

One of the biggest tragedies of Alzheimer is not the disease itself. It’s that people look at their loved ones living with the disease and write them off. They buy into the overwhelmingly negative narrative that living with dementia is a long, slow journey into oblivion, and all they can see are loss, tragedy, and despair. They experience great pain when their loved one doesn’t recognize them. Some become paralyzed by grief before their loved one even dies.

While they suffer and grieve multiple losses every day, wishing they could recapture the past or reassemble someone they believe is falling apart, they miss countless opportunities to find joy, healing, laughter and connection with the person who is standing, sitting, or lying in front of them – still human, still breathing, still able to give and receive love and care. They miss chances to build bridges, to reimagine their relationship, to be in the moment with that person they love. And then, before they know it, their mother/father/spouse/sister/brother is gone forever, for real, and it’s too late.

This poem is about changing that mindset. People who live with dementia are people until the very end. We owe it to them to support them as they live until they die.

don’t mourn me long

Dedicated to finding hope and letting go of loss.

don’t mourn me long

©2017 punkie  

don’t mourn me long
before i’m gone
and manifest your fear

think once or twice
consider thrice
before painting days so drear

look deep within
through thick and thin
discover i’m still here

with life to live
and more to give
this moment, this month, this year

so smile, don’t frown
be up, not down
as harvest time draws near

on with the show
until you know
i’ve truly left my dear

don’t mourn me long
before I’m gone
wait until I die

and even then
don’t grieve me when
my spirit’s in the sky

imagine me
wild and free
young and fit and spry

no body left
no brain that’s cleft
no chains, no drugs, no ties

on sacred wings
i swoop and swing
scant time to wonder why

when like the wind
free from all sin
i soar sweetly up on high

don’t waste a tear
on earthly spheres
let go and feel me fly

don’t mourn me long
before I’m gone
find hope with childlike eyes

 

©2016 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.

https://myalzheimersstory.com/2017/05/19/let-me-weep/

https://myalzheimersstory.com/2016/12/14/missing-you/

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Death & Dying, Life & Living, Music, Poetry

homeward bound: poetic grief and hopeful song

My Alzheimer's Story

160902 homeward bound

The vapour trails are scarcely visible in the image above, but they were as clear to me as the tattoo in the palm of my right hand as I watched these travellers cross the late summer sky less than three weeks after Mom died on August 17, 2016. Moved beyond measure in my grief, I composed the poem below in tears, just as I had when its mother (night flights to london) had been born  two years earlier. And then when I found the tune at the end? Well, just listen for yourself and see what happens…

homeward bound

a poem by punkie

my heart sails like
two flights at night
with vapour trails:
one pink, one white

you left me here
an orphan now
this bit you never
showed me how

sure you’d be gone
but why’d you leave
without some guide
on how to grieve?

you birthed me fine
and then you died
a lifetime scarce
to say goodbye

it seems unfair
that you should fly
and leave me here
alone to cry

i watch the jets
to london soar
while emptiness
fills up my core

then i recall
how once we ran
and fell in heaps
upon the sand

thank you for
those magic times
the love you spread
the nursery rhymes

i miss you as
i watch the sky
turn sunset into
stars that shine

one day soon when
the moon is round
instead of lost
i will be found

mothers daughters
become just one
and rest entwined
when life is done

here with me
sweet the sound
as angels sing us
homeward bound

 

Homeward Bound
by Marta Keen

In the quiet misty morning
When the moon has gone to bed,
When the sparrows stop their singing
And the sky is clear and red,
When the summer’s ceased its gleaming
When the corn is past its prime,
When adventure’s lost its meaning –
I’ll be homeward bound in time
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow
If you find it’s me you’re missing
If you’re hoping I’ll return,
To your thoughts I’ll soon be listening,
And in the road I’ll stop and turn
Then the wind will set me racing
As my journey nears its end
And the path I’ll be retracing
When I’m homeward bound again
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow
Bind me not to the pasture
Chain me not to the plow
Set me free to find my calling
And I’ll return to you somehow

© Susan Macaulay 2013 – 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.

https://myalzheimersstory.com/2016/09/11/i-didnt-know-how-soon-youd-go/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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

mama don’t forget i love you

My Alzheimer's Story

mama don't forget I love you

 

I strongly believe we stay connected to those we love and those who love us across vast distances of time and space and beyond life and death.

I recall this quote from one of my all-time favourite books: “Illusions: The Adventures of a Reluctant Messiah” by Richard Bach:

“Your friends will know you better in the first minute you meet
than your acquaintances will know you in a thousand years.”

Likewise, I believe we feel connected with the souls we love regardless of whether they seem to remember or recognize us on the superficial level of this life. If you feel disconnected or sad because your care partner with dementia doesn’t recognize you, these 20 questions might help.

Marty McGill lost his mom to Alzheimer’s disease. When I first heard the tune he wrote for her it made me cry because it was so similar to my experience. I left a comment; Marty immediately replied. He wrote:

“The last 6 months or so at home she would get up throughout the night. I slept on a loveseat those months so I could wake when she came down the hall. She would be smiling, dressed the best she could manage, ready to start the day, and I would redirect her back to bed. First thing I did every morning was get her dressed and sit her by the window while I fixed her breakfast. I would put crumbs on the sill to draw the birds in. She would watch them and talk to them. I miss my mom.”

Here is the beautiful song McGill wrote about love beyond recognition and about being a care partner:

 

 

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Care Partnering, Death & Dying, Life & Living, Love, Memories

dead mom talking full of grief, wisdom and tenderness

My Alzheimer's Story

dead mom talking image watercolour

 

Rachel Matlow’s short audio documentary “Dead Mom Talking” is amongst the most beautiful conversations I’ve ever heard: raw, honest, touching, tender, funny, and filled with love, grief, wisdom, magic, dignity and longing.

I began weeping before I even started listening, and I wept the whole way through the fantastic fifteen-minute piece. If you choose to play it, I highly recommend arming yourself with tissues beforehand.

The concept behind the work, first aired on CBC’s Sunday Edition with Michael Enright on Mother’s Day 2016, is extraordinary.

Matlow, a producer at CBC’s cultural radio show Q, recorded conversations between herself and her dying mother over a seven-week period in 2015.

A little less than a year after Elaine’s death, and based on this instruction: “if you want to talk to me when I’m dead, go to the bench,” Rachel created what I can only describe as a stunning work of audio art from the recordings.

Listen:

 

Despite my tears, I was filled with a sense of hope and deep human connection after listening to Matlow’s documentary. I strongly believe we are able to feel the presence of those we love after they are gone, and maybe even speak to them on benches, or bridges, or when surrounded by the amazing beauty of nature.

I take comfort in that.

 

Note: audio and video recordings can also be powerful care partnering tools; I talk more about the why’s and how’s of that here.

Helpful resources

Here are some excellent resources on grief and grieving for dementia care partners:

Grief, loss and bereavement: a comprehensive Alzheimer’s Society piece covering various aspects  of the grieving process from several perspectives; includes a downloadable PDF.

Give  grief space to breathe: a free one-hour webinar with Mike Good of Together in This and grief coach Kim Adams; includes an emotional awareness worksheet as well as downloadable audio and PDF.

Open discussion on grief: Mike and I and grief coach Kim Adams share our thoughts and those of listeners in a half hour chat to help you cope with grief. Join us the first Tuesday of each month for similar thought-provoking and helpful conversations.

See also: 10 normal ways care partners express grief

 

Grieving the living

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Copyright: photosky99 / 123RF Stock Photo

Death & Dying, Life & Living, Tips, tools & skills

10 things not to say to grieving Mary Missy Taylor

My Alzheimer's Story

Woman wading through muck crop 1

 

Like most of the rest of us, my friend Mary Missy Taylor has been through a lot of shit.

On a scale of one to a hundred, hers ranges from “I’ll-hold-my-nose-and-put-my-rubber-boots-on,” to “hide-the-razor-blades-and-there’s-a-chance-I’ll-make-it-out-of-here-alive.

In the course of walking barefoot through the muck, Mary Missy has stumbled upon a whole whack of wisdom. She shares bits and pieces of it with her friends far and wide.

Once, she posted a “short list of the absolute worst (and most invalidating) things you can say to someone who is struggling with loss, grief, or suffering.”

It made sense to me. She gave me permission to post it.

Here are the top ten things Mary Missy (and probably the rest of us) don’t want to hear when life has buried us in an avalanche of crap:

  1. “Well, at least….”
  2. “You have so much to be thankful for…”
  3. “You need to let it go…”
  4. “Look on the bright side…”
  5. “Everything happens for a reason, and…”
  6. “I know how exactly you feel…”
  7. “This is for the best…”
  8. “If I were you; you should; why don’t you….
  9. “You have so many people who love you…”
  10. “You’re tough…”

“The temptation to distract and override the pain with advice or positivity is alienating and actually dis-empowering,” Mary Missy added. “If you know someone who reaches out for support, a helpful thing you can do is just be present in their grief and share their pain.”

She’s right. It’s also useful to know that people grieve in different ways, and all of them are normal.

In the case of people who live with dementia and their care partners, the grieving process can go on for years as the disease progresses, and for years after the person is gone. That’s normal too.

On the other hand, it’s often better so say something in empathy and with good intention even if we don’t get the words quite right, than to say nothing at all.

Shared grief is more easily borne.

“We don’t want people to get so freaked out about saying something wrong that they say nothing at all,” writes care partner Lorrie Beauchamp. “I appreciate all the kind words people offer, and try not to take offence when it feels ‘facile’ or cliche. They don’t know what I’m going through, and I don’t know where they’re coming from. Communication is so important!”

Thanks for sharing your wisdom Mary Missy Taylor and Lorrie Beauchamp. I acknowledge your loss and your pain, and I stand with both of you in your grief.

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Copyright: rh2010 / 123RF Stock Photo

Death & Dying, Life & Living

10 normal ways care partners express grief

My Alzheimer's Story
Woman crying in room
Copyright: stokkete / 123RF Stock Photo

Grief and grieving are part of the human experience. Sadly, but naturally, they are also part of every dementia care partner’s journey. Nevertheless, grief need not blind us to possibility.

Care partners and people with dementia may grieve many aspects of living with Alzheimer’s disease or other dementias such as the loss of (among other things):

  • capacity
  • relationship
  • communication
  • lifestyle
  • freedom

Ultimately, we all deal with the eventual loss of the people we love when they die. We can ourselves and them a a great service by accepting them and not grieving them in the path that leads to death. Many find comfort remembering that loss is in us, and to think of their loved ones as spiritually present which Mary Elizabeth Frye  expressed so beautifully in the poem Do Not Stand by My Grave and Weep.

The shockwaves of griefGrief may manifest for people in different ways including:

  • helplessness
  • despair
  • withdrawal
  • anger
  • frustration
  • guilt
  • denial /not acknowledging losses
  • longing for what has been lost
  • sadness
  • acceptance

While all of this may be extremely painful, and for some seemingly unbearable, it’s also normal. Like other emotions, grief serves a purpose, part of which I believe is to help us cope in the moment and eventually heal in the fullness of time.

Helpful resources

Here is an excellent resource on grief and grieving for dementia care partners: Grief, loss and bereavement: a comprehensive Alzheimer’s Society piece covering various aspects  of the grieving process from several perspectives; includes a downloadable PDF.

Grieving the living

https://myalzheimersstory.com/2016/04/03/10-things-not-to-say-to-grieving-mary-missy/

https://myalzheimersstory.com/2017/04/05/dont-mourn-me-long/

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