courage – My Alzheimer's Story

Challenges & Solutions, Resources, Toward better care

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

March 20, 2020March 20, 2020 amazingsusan

Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.

Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.

Dementia care partners everywhere know that to be a fact. We have learned what it takes to survive and thrive on a day-to-day basis – sometimes even a moment-to-moment basis! Unbelievably, many of us have discovered joy and inspiration along the way.

We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

Love
Hope
Resilience
Courage
Determination
Ingenuity
Creativity
Music
Connection
Caring
Compassion
Relationships
Interdependence
Empathy
Faith
Curiosity
Laughter
Kindness
Generosity
Ferocity

This post was inspired by Jamie Tworkowski, who blogs here.

17 links to the “other side” of dementia

a prayer for those who care worldwide

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Family, Poetry, Real life

6 priceless gifts you could give people living with dementia (and everyone else for that matter!)

December 21, 2019April 5, 2020 amazingsusan

These gifts are inexpensive (they don’t cost dollars and cents, so everyone can afford them), and yet priceless (because of the fact they can’t be bought, and must be given from the heart). Even better, they can be gifted all year round!

Please consider giving one, several or all of these gifts this year (and always) to people who live with dementia in your family, your community and around the world.

Respect

You could treat people who live with dementia like the human beings they still are no matter what “stage” of the condition they are living with. You could treat them like adults, not children. You could respect their wishes, wants and desires. You could believe their lives still have value, and you could demonstrate that belief in the way you interact with them.

Love

You may have been told that people who live with dementia become empty shells. But that’s not true. They are people with rights and needs just like the rest of us, and they need to be loved just like the rest of us do. Share your love.

Time

You could give them the most precious gift of all: the gift of time. Carve out a space in your busy life and go to visit someone living alone, or someone who rarely gets visitors even if they are living in community. Once you get there, sit and stay awhile. You don’t have to do anything – just being with someone is often enough.

Understanding

People who live with Alzheimer’s disease and other dementias are widely misunderstood, stigmatized and marginalized. If each and every one of us took the time to educate ourselves and to really understand what’s going one with people who live with dementia, and what causes them to behave the way they do, we would all be a lot better off. If you haven’t already begun learning, start educating yourself now.

Compassion

Imagine what it might be like to be experiencing brain changes in which your memory and your ability to understand the world are shifting in ways that make it hard for you to navigate reality. Imagine what it might be like to experience stigma and isolation, to have other people take control of your life. Imagine what it might be like to walk in their shoes, and then give the people you interact with who are living with dementia your compassion and understanding.

Advocacy

People who live with dementia are often treated like objects, like pieces of furniture, as if they are less than human. Many are unable to speak up for themselves. We need to be their voice. We need to ensure that they are treated with dignity, and that they get the care they have a right to. When you see people who live with dementia being neglected, abused or treated in ways they shouldn’t be, SAY SOMETHING! And then keep advocating until things change.

These are gifts that money can’t buy, but that we all have the capacity to give.

Please give generously.

13+ needs we share with people who live with dementia

alzheimer annie invites you in

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

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Family, Poetry, Real life

alone: a heartbreaking poem by 89-year-old lilly who lives with dementia

September 8, 2019September 10, 2019 amazingsusan

September 8, 2019: “Do you want me to read you the really sad poem I wrote last week?” Lilly* asks.

“Gee Lilly, I don’t know,” I say. “Not if it’s really sad.” I’m feeling a little melancholy myself.

“I’m gonna read it to you anyway.” Lilly has a mind of her own, no doubt about that! She and I have been playing Scrabble on Sunday nights for about year. I go to her place sometime between 7 and 8 p.m. and we play for an hour and a bit. She tells me the same stories over and over as we play, and I listen like it’s the first time every time.

Lilly is a fine Scrabble player, and I lose about as often as I win. She also has a great sense of humour, and is generally pretty positive despite her many physical challenges including spinal stenosis, which keeps her hunched over, in pain and using a walker.

I’ve come to learn quite a lot about Lilly, who will turn ninety on Valentine’s Day 2020. She has six children (a seventh died a few years ago), and ten grandchildren. Great grand twins are expected in November, and Lillly is determined to live until they’re born.

Lilly’s family members call and visit often, and although I’m not there to witness it, I’m certain at least one of them is in touch each and every day. She has other regular visitors, including me, and she goes to a full day adult program (which she adores), on Mondays, Thursdays and Fridays. She has LOTS of contact with family, friends, and support workers. But sometimes, because of her dementia, Lilly forgets about the abundance of social interactions she enjoys, and she feels lonely as we all do from time to time. When that happened last week, Lilly, who is a great poet and writer, put pen to paper.

As she read me the poem she had written, tears came to my eyes, and at the end, my heart broke with despair. Lilly gave me permission to share her poem (with a few tiny tweaks by yours truly):

alone

i haven’t had a visit
i haven’t had a call
it really seems my family
doesn’t care at all

this is a special weekend
too bad that they don’t see
i’m lonely and I feel
that no one cares for me

i’m old now and I guess
i’m a bother to them all
but oh! how I am wishing
that one of them would call

i do not like the message
their silence seems to send
it comes through loud and clear:
they wish my life would end

Please don’t forget people who live with dementia, even though they may forget you. Call often. Visit often. Hold their hands in yours. Hold their hearts in yours. Tell them you love them over and over and over again, especially when they may not remember what you have said. It means the world to every one of us, young and old, living with a disease or not, to feel we are loved.

* Not her real name.

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

don’t mourn me long

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Family, Life & Living, Love, Videos

an open letter and song request for country great kenny chesney on behalf of people who live with dementia and their family and friends

August 28, 2019 amazingsusan

Dear Mr. Chesney,

I love your song “While He Still Knows Who I Am,” but would you write another one please?

I am a dementia care advocate who learned about dementia through lived experience with my mom. She died in August 2016.

One of the tragedies of Alzheimer’s disease and other dementias is that many family members and friends of people who live with dementia think the person is “gone” when she or he no longer easily recognize family and friends, and so the family and friends stop visiting the person who is living with dementia. This is heartbreaking because this is when love, connection and compassion are most needed by the person who is living with dementia.

It really doesn’t matter if a person living with dementia recognizes us or not. We need to ask ourselves why we get so focused on the recognition part instead of on loving, connecting and being compassionate.

Furthermore, a great deal of healing, love and bonding may be shared by both the person living with dementia and friends and family until the very end. I can’t emphasize how life affirming and deeply spiritual this can be for all involved.

Your song is beautiful and touching, but it infers that people living with dementia are not worth seeing once they don’t recognize us. In fact, the worst thing we can do when a person living with dementia doesn’t recognize us anymore is to stop spending time with him or her. That’s why I’m writing to ask you to please produce another song that will encourage family members and friends to keep spending time with their loved ones who live with dementia, ESPECIALLY when their loved ones don’t know them anymore.

Mr. Chesney, in your audio commentary about “While He Still Knows Who I Am,” you say the song is “heavy” and as the narrator you “have a responsibility.” Please take your responsibility to heart and give us another song that will encourage family and friends to remain connected with people who live with dementia until the very end.

Thank you,

Susan Macaulay
Dementia Care Advocate

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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Family, Life & Living, Love, Videos

while he still knows who i am is beautiful and heart wrenching, but does it send the right message about love and connection?

August 28, 2019August 28, 2019 amazingsusan

Kenny Chesney’s song While He Still Knows Who I Am is about love, connection and re-discovering a father-son relationship. It made me cry. It may make you cry as well.

But does it send the right message about people who live with dementia, and when and how family and friends should love and connect with them? I don’t think so.

The title and lyrics infer the son is going to visit his dad while the father still knows who the son is. But what happens when father no longer recognizes son? Will the son then not go to visit? That’s the implication.

I was so saddened by the inference that I wrote an open letter to Kenny Chesney asking him to write another song — one that encourages friends and family members to visit people with dementia especially when those people don’t recognize them anymore.

I wonder if he will.

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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Image copyright: dolphfyn / 123RF Stock Photo

Death & Dying, Poetry, Real life

euthanasia

June 26, 2019June 27, 2019 amazingsusan

Pia Roma sitting on my VariDesk in 2017. She was an excellent catssisstant ❤

June 26, 2019: I wrote this a month or two before I had to put little Pia Roma to sleep on June 29, 2018. I was in anguish for months, hoping she would die a natural death before I had to euthanize her so she wouldn’t suffer. Pia had been Mom’s beloved companion for about eight years, and then mine for seven after Mom went to #DementiaJail.

I still miss her by my side.

euthanasia

This poem is dedicated to everyone who has had to put a beloved animal member of their family to sleep.

euthanasia

your heart beats strong
as the hours grow long
softly you do stride
through this life
with all its strife
and troubles to abide

a feline muse
clothed in silver hews
with golden eyes moon-wide
you helped me write
through days and nights
lay patient by my side

and we played with string
ran around in rings
laughed until i cried
while disease within
like original sin
consumed, then health denied

though it’s humane
to ease the pain
when everything’s been tried
that you must leave
me here to grieve
sickens me inside

friends say i’ll know
when it’s time you should go
but how shall i decide
to cause you to sleep
in the eternal deep
as if god’s hands were mine

after i put them in prison, mom’s bff became mine

one little kitty’s top dementia care tip

7-part palliative care plan works (for people AND cats)

the paws that refreshes

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Image copyright: robeo / 123RF Stock Photo

Death & Dying, Life & Living, Poetry

eternal anguish

April 27, 2019 amazingsusan

At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to cope with.

This poem is about the heart-wrenching conversations one has with self and the powers that be at those times. It’s the second version of a poem i called “a daughter’s prayer to god,” which I first wrote in 2014, after Mom came “this close” to dying.

eternal anguish

please take her lord,
oh no not yet!
i’m afraid
i might forget

how she smiles
and laughs and cries,
it’s not the time
to say goodbye

but I can’t bear
to see her so
perhaps today
is when she should go

is it selfish
when i wonder
how long before
she’s six feet under?

oh my god
don’t take her now
no, this can’t be
her final bow

let us play
another scene
in which she doesn’t
lay serene

a corpse upon
a broken bed
that’s not my mom
she can’t be dead

she’s the one
who gave me life
who saw me through
both joy and strife

don’t take her god
i need her here,
by my side
forever near

i promise lord
that I’ll be good
and do exactly
as I should

i won’t lie
or kill or loot
or disrespect
an older coot

i’ll love my neighbour
guaranteed
if only you will
set her free

to dance and sing
like we once did
when I was no more
than a kid

please don’t take her
oh no please don’t
i wish you would,
and that you won’t

i know deep down
it’s peace she seeks,
every day
week after week

she craves her home
amidst the stars
her life beyond
these prison bars

but when she breathes
in fits and starts
who will call
the funeral cart?

in this game
where life’s at stake
we’re helpless
to decisions make

it’s in your hands, god,
you call the shots:
undo this heart
tied up in knots

around the rosie
we will sing
lord have mercy
you are the king

a daughter’s prayer to god

don’t mourn me long

dying with my mom

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Advocacy, Life & Living, Poetry

a daughter’s rendering and remembering

November 16, 2018November 17, 2018 amazingsusan

November 16, 2018: I doubt I will ever get over the deep grief I feel each November 16, the day my mother was relocated to #DementiaJail in 2012. All I can do is try to process it in whatever way I can. This year, once again, it’s with poetry.

the rendering

nothing more
could be done
all fault lay with
the setting sun

whose will it was
to force imprison
the one from whom
we’d both arisen

a deal had been struck
the year before
when no one knew
what lay in store

then came time
to pay the piper
fate took aim
fired like a sniper

shot her, then me
but not to death
left us bleeding
drained of breath

we struggled hard
for four more years
held hands amidst
the joys and tears

until the day that
she surrendered
with untold truth
for me to render

now i fight on
to right the wrong
of stolen voices
and silent songs

November 16, 2017:

when you’re put behind bars

November 16, 2016:

the day our best wasn’t good enough

November 16, 2015:

joys and tears throughout the years

November 16, 2012:

moving day

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Advocacy, Inspiration, Life & Living

7 powerful thoughts on the resilience brilliance of elders and people living with dementia

November 15, 2018November 15, 2018 amazingsusan

“The elders in our lives teach us so much and I just keep trying to pay attention,” wrote Sonya Barsness in reply to my comment on her blog post entitled “Resilience.”

Barsness calls herself a “revisionist gerontologist.” Like me, she believes we need to change the paradigms surrounding aging and dementia. Her work revolves around “promoting and applying a paradigm shift to everything we do WITH people growing older and growing with dementia.”

I’m an avid reader of her blog “Being Heard,” and was blown away by the post on resilience. After I read it, I commented:

“This post is breathtaking Sonya. It puts into words what I observed being with my mom during the last five years of her life while she lived with dementia. I called it strength. “You are so strong, Mom,” I would say to her. Or, “You are so brave, Mom.” Yes, she was strong, and yes, she was brave. But you are dead right about resilience. Above all, Mom was resilient beyond belief. Thank you for reframing it so eloquently.”

I extracted these seven powerful thoughts from the post to whet your appetite:

1) We often use the term “frail” to describe elders. Yet, it does not properly acknowledge the resilience that older people show on a regular basis, in various ways.

2) …people living in nursing homes, people living with dementia, people who are not 98-year old weightlifters are also resilient, [although it could be in a way we might not easily see].

3) Elders are experts at being resilient. Perhaps this is true by the very nature of acquiring more life experiences through growing older – there simply are more opportunities to be resilient. Perhaps it is also due to the unique challenges and opportunities in “being old” that encourages resilience.

4) [Consider] the resilience of the present: how a person shows up every day. Perhaps elders are particularly resilient because of what they have experienced, as well as resilient for what they are experiencing now, and will experience [in the future].

5) Could their resilience be in each breath they take, in how they are living in the world, yet leaving it? Could their resilience be in their gifts to us about the fragility of life, and the reality of death?

6) There is resilience in living with the cognitive changes of dementia. As a person sees the world differently through the experience of dementia, they try to make sense of it. They are problem-solvers, rather than how we often label them as problem-makers.

7) Through their courage and resilience elders [and people living with dementia] are revealing to us how to navigate some of the most fundamental and pure human experiences.

I encourage you to read the whole post here. You may also wish to read the inspiring posts below.

https://myalzheimersstory.com/2015/08/30/we-all-go-through-rough-patches-heres-one-thing-that-helps-us-get-to-the-other-side/

https://myalzheimersstory.com/2018/09/21/3-excerpts-from-the-best-article-on-dementia-i-have-ever-read-and-a-link-to-the-full-meal-deal/

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Advocacy, Life & Living, Poetry

ascendants: awakening to where and whom we came from

September 17, 2018March 4, 2021 amazingsusan

Some days I miss my home and my mom more than others. I think about her, and my grandmothers, and my grandmothers’ mothers and grandmothers, and their grandmothers and so on.

Ascendants: those from whom a person is descended, or from whom she derives her birth, however remote they may be. Everyone has two ascendants at the first level, her mother and father; four at the second level, her maternal grandmother and grandfather, and her paternal grandmother and grandfather; eight at the third etc. Thus, as we ascend the various lines of our ancestry which fork at every generation, sixteen ascendants are found at the fourth level; thirty-two at the fifth; sixty-four at the six; one hundred and twenty-eight at the seventh; and so on. By this progressive increase, we have, at the twenty-fifth generation, 33,554,432 ascendants.

And, ascendant:

“Thus, astrologers believe that the ascendant signifies a person’s awakening consciousness, in the same way that the sun’s appearance on the eastern horizon signifies the dawn of a new day“

ascendants

This poem is dedicated to all those who went before us.

ascendants

the memory of you
sits by my side
like my own shadow
from which i can’t hide

you whisper in morning
sing soft through the night
everywhere, all the time,
and yet just out of sight

it’s strange how we leave
our flesh in the dust
while our essence lives on
in those whom we trust

each one of us comes
from the millions before us
ancestors who lived
on the plains, in the forests

they sailed on the seas
and travelled on trains,
to find a home in the wild
and give it a name

they carved livings from nothing
cried tears in the rain,
prayed for more sunshine,
sang life’s dark refrain

there’s no letting go
of those in the past
i’ll join them at sunrise
when i leave here at last

then we’ll be one
as we were once before
together in peace
in the vast evermore

i see you, i love you, i miss you

dying with my mom

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