grief – My Alzheimer's Story

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 My Alzheimer's Story

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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Death & Dying, Poetry, Real life

euthanasia

June 26, 2019June 27, 2019 My Alzheimer's Story

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

Care Partnering, Challenges & Solutions, Toward better care

7 ways to transform dementia care grief and suffering into joy and healing

May 7, 2019 My Alzheimer's Story

Are you a dementia care partner who lives in a world full of grief, loss and suffering? What if you didn’t have to be in that dark, depressing place? What if you could transform your suffering into healing? What if you could release your feelings of grief and loss?

Moreover, what if changing your world was simply a matter of changing your perspective? Would you choose to do it?

When I chose to reframe the way I saw dementia and the people who live with it, I completely changed my experience as a care partner. Others have done the same. Here’s an excerpt from an email I received from FK, a long-time follower of MyAlzheimersStory.com:

Susan,

I really need to thank you so so much for changing my perspective on what was happening to my parents as they both lived with dementia. I have responded to your blog from time to time, mentioned that I was caring for my parents, both of whom had Alzheimer disease, and shared my experience about being with my sister when she died when your mom was approaching that point.

I had moved to [Some Little Town] from [A Big City] in 2011 when my parents began to lose their abilities to live independently, and I eventually became a full-time care partner. For the first few years after I noticed the first signs of memory loss, I was stuck in that intense grieving phase and could only see the losses and mourn what felt like my parents disappearing before my eyes.

But after discovering your site/blog and following it, I gradually learned to see that they were still there, still my parents, still loving and able to share many things with me. My focus changed from mourning each new loss and grieving what lay ahead in the future, to living with them in the moment and trying to share as many moments of joy as possible. That made a world of difference. I was able to love them and keep sharing laughter and love until they died (my dad on April 02nd, 2017 after a long, slow decline and many false alarms; my mother very unexpectedly the very next day, April 03rd, 2017. Thanks to you, I look back on those years as, in many ways, a happy time despite all the difficulties, frustrations, fears and tears.

I lost a legal bid to get control of my mother’s care in February 2014. Shortly thereafter, I launched MyAlzheimersStory.com. I wanted to share my journey and learnings as a care partner, and help others avert some of the challenges and pitfalls I had faced.

As I learned more about Alzheimer disease and other illnesses that cause dementia, I also came to realize we can radically change our experience of dementia and the people who live with it by reframing the way we see it and them. Helping people transform their experience from suffering to healing has become an integral part of my advocacy–one that’s working as FK’s email demonstrates!

Here are seven ways you can reframe and change your dementia care experience:

Focus on what remains rather than what has been lost
Look for potential rather than staying stuck in deficit
See the person, not the disease
Understand that people who live with dementia are still people, not “empty shells”
Understand that people who live with dementia have the same needs we all have
Create opportunities to experience joy and happiness
Find things to laugh at instead of things to cry over

I did it. FK did it. You can do it too.

17 links to the “other side” of dementia

do you see what i see?

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

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Death & Dying, Life & Living, Poetry

eternal anguish

April 27, 2019 My Alzheimer's Story

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 My Alzheimer's Story

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, Life & Living, Poetry

ascendants: awakening to where and whom we came from

September 17, 2018March 4, 2021 My Alzheimer's Story

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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Life & Living, Love, Memories, Music, Videos

singer songwriter jay allen holds on to his mom

July 29, 2018 My Alzheimer's Story

Nashville country music artist and songwriter Jay Allen’s mother has early onset Alzheimer disease. He wrote about it here, and he sings live about it in his song Blank Stares in the video shared by a fan on the Facebook post below:

And here’s the studio version from YouTube:

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

https://myalzheimersstory.com/2016/02/25/10-normal-ways-care-partners-express-grief/

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

what do you say to people living with dementia when someone they love dies, or when they ask about someone who is dead?

July 23, 2018 My Alzheimer's Story

Online care partner groups are supportive environments where family members who care for people they love who live with dementia ask and get answers to all kinds of questions. Sometimes the questions, such as this type, are heartbreaking:

My mother has Alzheimer’s disease, and my father is terminally ill with cancer. His time is very short now — only a matter of days. I’m worried about what I should say to Mom about Dad’s death. How do we tell her about his passing? We figured we would take her to the funeral home for a private visitation, but not keep her there for the visitation or funeral. What do we do after he’s gone and she asks about him? Do we break the news to her over and over? Or keep changing the subject when he comes up?

Experienced family care partner and USAgainstAlzheimer’s FB group moderator Jessica Price-Parrott answers this kind of question with excellent advice:

“My mom and grandmother were each other’s everything. Once my grandfather died my mom was her helper, friend, caregiver, and protector. My mom lived just two blocks away and really met all of my grandmother’s needs. Fast-forward fifteen years to when my mother was diagnosed with Alzheimer’s. My grandmother watched the disease progress in my mom. My grandmother passed away first. At this time my mother was in a memory care facility. I did not take my mother to the viewing, and I did not tell her that her mother had died.

I think this is extremely situational. You really know your mother best. I chose to not tell my mom because her brain would not allow her to grieve like you or I.

I know some people who tell their loved ones with dementia and that’s that. The person who is living with dementia never asks another question about it. Others ask over and over again, and grieve every time they are told the person they love is gone.

At first I thought my mom needed to know, it was her mother, she deserved the truth, and it wasn’t fair to her for me to not be honest. The more I thought about it though, the more I felt that telling her wouldn’t be fair because her thought process wouldn’t allow her to grieve in a healthy way.

When Mom asked how her mom was I would say she was fine and well taken care of. I figured that wasn’t a lie. God was keeping her safe.

As Mom lay dying she opened her eyes and looked at me. It was then I told her that her mom was waiting for her. I smiled, and loved her. She closed her eyes, and passed away peacefully.”

My mother and grandmother were also very close. When Mom asked about her mom, or her sisters (all of whom were gone), I told her they were happy and peaceful.

Also like Jessica, I was at my mother’s side when she died. During her final hour, I repeatedly said the same thing to her: “Gran is waiting for you Mom. It’s okay to go. She’s waiting for you.”

I know Mom heard me, and I’m sure it comforted her as much as it did me.

dying with my mom

10 normal ways care partners express grief

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Image copyright: bialasiewicz / 123RF Stock Photo

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

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

May 25, 2018May 26, 2018 My Alzheimer's Story

About a month after Mom died in August 2016, her little kitty cat Pia Roma, who had lived with me since late February 2013, began to behave strangely. Coquetishly cute Pia, with her big yellow eyes, had always been a little odd, but this was different. She wasn’t herself at all. There were continence issues, a lot of meowing and more vomiting than usual.

“She has chronic kidney disease,” the vet told me after some blood tests and an overnight stay at the clinic. “And probably a bit of feline dementia too.”

The vet gave me medication for the CKD, and put Pia on a special diet. Pia continued to enjoy an active life for an older cat, despite her dementia. When I took her back for a check-up in 2017, Pia’s kidneys had actually improved. In the four years we’d been together, we’d grown really close, and I was delighted she continued to be so well. I was equally devastated, however, with the results of this year’s check-up, which took place last week. I wrote about it on my personal FB page:

“I took Pia to the vet yesterday afternoon. Unfortunately, the news isn’t good. The vet was impressed with the great shape she’s in for a cat her age, which I think is 16. The vet said her heart is in fabulous condition; she was surprised and impressed when I told her that Pia still runs around, plays, and jumps up and down from my desk to the floor and onto my very high bed.

The blood tests, however, told a different story. The results showed that, while her thyroid is fine, her kidney disease has progressed from stage I, which is was two years ago, to stage III, which it is now. The vet reckons she only has about six months more in this world.

The only thing that can be done for her now is palliative care to keep her comfortable. Of course I feel desperately sad, and I can’t stop crying, but what to do? This is life. And death.”

As with any terminal illness (e.g. Alzheimer’s disease, kidney disease, etc.), the patient does not suddenly die the minute she or he is diagnosed. People (and animals!) can continued to live relatively well until they die. I believe our job as care partners is to support those we love in living as they go through the process of dying. If I’m not mistaken, that’s what palliative care should be about. Hard as hell in the midst of our own grief, no doubt about that. But I know it’s possible.

So I have a palliative care plan for Pia. It’s essentially the same as what I tried to do for Mom, even though my hands were tied in many ways. Here’s the plan:

1) watch and listen carefully to try to determine what her needs are and do what I can to meet them

2) focus on what she can do each day

3) make her life as joyful as possible

4) maximize comfort

5) minimize pain

6) let her be the driver

7) respect the process and hold space for both of us

I know all these things worked a treat when I was with Mom, and I believe they’ll help Pia as well. Maybe they’ll be a blessing for those you love too.

https://myalzheimersstory.com/2018/02/25/3-wise-thoughts-on-being-with-someone-you-love-as-they-die-which-also-apply-to-being-with-someone-with-dementia-as-they-live/

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/