Real stories

Three poems about dementia for World Poetry Day

The tsunami of Dementia As she sits in her chair like a warm sunny land Velvet blue waters and soft golden sand, She laughs and she smiles in her memories she sways, As I hope and I pray the beast stays away. Her calmness is still like the calmest blue sea It warms me inside, as she smiles at me. Memories flood back of the wife I once knew, Her laughter like a song bird around me flew. All of a sudden a shallow small rumble, Her face slightly changes, her mood slightly grumbles, I tense and I squirm as the waves become angry And the rumbles grow more tense beneath me. Like an earthquake her mood growls and it groans. It shakes the whole earth she screams “ I want to go home!” But I want to go back to how life use to be, When the disease did not show it’s anger at me. And just as the waves seem to calm once more, And the grumbling earthquake has now shut it’s door, I stand on the shore, and look out to sea, I see in the distance a wave so much taller than me. The wave rises up, as her mood edges in, Her words cut me deep like a sharp jagged tin, Her mood raises higher...a tsunami to the shore, She swallows me whole like never before. And where before was that sunny warm sand, Her tsunami of anger destroys the calm land, Everything is broken along her uncontrollable path, And I long once again for her infectious laugh. I feel like I’m drowning, I cough and I splutter, Then all of a sudden her soft words mutter, Her mood edges out from the tsunami battered shore, I lay...not bruised...but broken and mentally sore. She sits in her chair, my beautiful queen, Looks in my face and says “my dear...where have you been?” Her calmness is warm again, like that warm sunny land, With its velvet blue waters...... And soft golden sand Written by my sister Jane about our mum and dad .

Dive for your Memory. I look on aghast as you dive for your memory Delve deep for words once within your vocabulary The struggle etches lines into your beautiful face Bewilderment reigns, of your smile there's no trace. I never once dreamt you'd be stuck for a word Your bright conversation the very song of a bird Now muted, replaced with both puzzle and pain Not a hint of response to the sound of your name. Selfishly, you've come out of it best in a sense I say this with sadness but truly in your defence There's grief for my loss although you're still alive Without self awareness, without purpose or drive. I talk to you constantly, you simply stare at your feet While friends and neighbours ask for you in the street They don't see my tears, my apathetic solemnity See me weep as I watch you dive for your memory.

OK I'm sorry but I just feel this needs to be said.
PLEASE stop with guilt about putting a loved one in care homes, My husband went in 21st Feb and I've beaten myself up so many times if I'm doing right by him, It took me while to understand that I was not abandoning my husband after 41 yrs of marriage, but giving him new lease of life by getting him the care he so desperately needed, and he was so happy there I felt like shouting why did I feel all this guilt when I didn't need to, I keep saying this we are not trained in dementia or know how to support them 100% so way I look at it now, is I did as much as I could for him, now it's time to hand over to professionals who are trained to deal with this illness,
Look at it this way if any of your loved ones got a serious illness lump , broken bone, sever headaches, you can treat them for a while at home but if symptoms got worse, what would your first reply to them be.
It would be go to hospital and you would make sure they did without feeling guilty.
Then why should any of us feel guilty because our loved one needs treatment or expert care because he has this horried illness dementia alzhiemers, someone explain to me the difference as to why you would not seek professional help , I would rather my husband got expert help than me going through what I have last 4 yrs getting to point of resenting him, now I'm back to being his wife and you could to get back to being wife, daughter, son, husband ect stop with guilt please because all it does is make you mentally drained depressed ect if you feel you have done your best hand over to people trained to deal with it. You deserve a life also remember that xx

These words straight from the heart came to my mind one evening after visiting my sister in her care home, she suffered with severe dementia it was so upsetting...

Alzheimer’s-A sisters lost mind

We’re old, she’s oldest, I look up to her I’ve always been an admirer, why not..she’s my sister
I love her dearly and all hers, as mine...why not, they’re my family, they belong, I belong.
Families..It’s difficult, it always has been, for a long time, forever..since I remember..that’s life, that’s families, it’s hard to deal with, it will be..feelings are fragile, there’s more than me..I’m not alone..

She’s important, she’s not alone..that’s the thing to remember!

"The Forgotten Journey"
I look in the mirror and who do I see:
The vision of a man who is (an) unknown to me.

The snapshots of life once stored in my head
Have fallen to the wayside...unable to stop, unable to find, unable to rewind.
Is this what it means to be dead?

Where am I? Who am I? How did I get here?
Who and where are the people that my heart has always held so dear?

The forgotten journey of the past has become an insurmountable maze.
So difficult, so vast, so lost are the days.

The forgotten journey is far from over as I have been told.
This forgotten journey of becoming old...
*SMG June 12, 2020*

My darling wife was diagnosed with alzheimers in 2013 i looked and cared for her for 7 long years trying to keep the promise that i would never put her in a care home.at christmas 2019 it became so bad the paranoia the accusations the violence she isnt a physicle woman but i used to let her hit me i knew she could not hurt me to bad.but its the mental side of it that gets you.you lose your own self respect you become an object of someone who is afraid to ask for help because you think thats weak.and its not what you promised.i miss my wife my best freind so much .and i feel that i am such a coward i now want to die before her so i dont have to greive her passing.

Take a walk with me...
Take a walk with me down memory lane
Memories will never be the same
Tainted by a cruel disease
Blown away like a summers breeze
As people fade like old photographs
We begin to walk down a different path
My world no longer makes sense in your head
So I try to understand yours instead
The fairies in the garden the stones that scraped her knee
Your looking for a little girl that little girl was me
Your rushing back to look after the kids at home
We are looking after you now us kids are fully grown
On and off the buses in and out of town
Pacing up and down the room you no longer just sit down
Forever searching for loved ones no longer here
How long has it been? How many years?
Sometimes you remember you are back just like before
But then the vacant look creeps in you are gone again once more
Dementia will not be the one that takes your life away
But because of it the man I knew is slipping every day
Dementia takes away your mind your sense of reality and time
Dementia takes your memories but in promise you it wont take mine
Dementia takes but it also gives and I'm not sure what is worse
I cant imagine what it's like living with this curse
Dementia gives you fear and makes you feel alone
You dont know who or where you are with your family in your own home
Take a walk with me down memory lane
Before dementia takes my name
One day you wont know my face tell me what do I do?
The day dementia comes and takes me away from you
You were here with me yesterday
Tomorrow isnt promised but we still have today

My life has been filled with many things
but my heart is filled with you
We all must face the good and the bad, as we age
and travel our path trusting God
(You taught me that by example)
Just as I thought any joy was behind me
at a time that I felt my love was retired
a new door opened and the Lord turned the page
a knock on my door presented me
with a love like no other…and that love was you
the soul that you shared renewed
my relationship with God
and I found a dream come true
in the life I’ve shared with you
You have humbled my life aspirations
thinking that a spotlight and fame
was the only thing that would fulfill one’s life
But the person that I found in you set a higher bar
That demonstrated strength, spirituality,
love, commitment, determination, and
A heart that shares and selflessly contributes
To those that you love and those that need your love
and those that require your care and assistance
Whenever it is needed….That is success and that is YOU

She comes down stairs
and asks me if today is Sunday
I assure her that it will be here soon
It makes sense… for that is the day that she is dressed for
as It stands out as one of her favorite days of the week
A day that takes her closer to our Lord
as she has always looked to HIM and prayed
in the quest to nurture and humble her soul
so many of us have gotten lost in the journey
But somehow she has remained steadfast in her commitment
And trusted HIS will
and graciously abides by her calling and has always been well served
by God’s blessings…Her love for HIM has re-ignited my soul
As I have been inspired by her devout faith
to serve in a mutual love that celebrates what
Christ has sacrificed for all of us
Just because it is only Wednesday does not mean
in her mind, it could be Sunday once again
A day she that she feels comfort and security in her praise
for OUR FATHER
And if indeed that Christian spirit, that has illuminated her heart
and made that organ the center of her unrelenting beauty
Then so be it….
Yes Betty, today is Sunday

TWO SHOES OF A DIFFERENT COLOR

Two shoes appear as a pair outside her door
Serving to dress her feet but each a different color

Does it really matter?

Each foot, ‘so’ unique as is the soul that guides their path
Yes they will fulfill the purpose and will protect and warm her feet
The mere fact that the two shoes don’t match are only a mere oversight of the clothier…and have little to do with the function

Life can be like that in that the inner and outer perceptions are not always the same

A culture so captivated by habit

Can’t understand that the right and left can be two different colors
But can traverse and share the same road

My subject matter is ambiguous by design and inspired
by what I witnessed when I awoke this morning

To a pair of my partner’s shoes by the door
Two shoes of a different color

Yes…her mind chooses to wear them…yet dismiss their differences
And accept their function over their color
to move forward in her wonderful life
with all the people around her
that will carry her above their shoulders
love her and know that she will be alright
and be so blessed by the Lord

THE UNINVITED GUEST
Who are YOU?
This uninvited guest that has come in to our lives
And what are you doing to my WIFE?
You have managed to slowly infiltrate her routine
Somehow you have scrambled what she has come to know as normal practice, to make her question or forget many things she has relied on every day to get herself through life, based on established experience and instinct to survive
All of those things that she took for granted, to put together an outfit to wear, to choose a matching pair of shoes with a pair of socks of the same color, to have an unshaken knowledge of what day it is, to understand the current month and year.
The “expected” to what is all around her becomes the “unfamiliar” to those in witness…
This UNINVITED GUEST has forced me to go back to school and learn about something that I previously had no intention to ever understand in detail but now I have accepted and welcome all the available resources to be the educated guide to assist and support the transition and be ready to help my wife at all turns.
So many times we have welcomed an invited house guest and so like a gracious host we entertain this catalyst that causes a temporary momentary modification to the compound / environment, that we are aware that in time when the guest exits, normalcy will again return.
Unfortunately this UNINVITED GUEST has caused a permanent and irreversible alteration that results in an onslaught of broken hearts and coping with this intrusion inspires us to turn to the WILL OF GOD to realize and find peace and accept that this guest is not leaving.

I was looking for a poem to give to carers who attend a café I run in my church for those with dementia. I came across these poems, written from deep within the heart; loss, sorrow, yearning. Yet what I also see is true love, service, and real humanity. Carers are wonderful people, driven by love and wanting to do the best they possibly can. Thank you.

Beautiful poems

"I talked to a lady "
This so describes the way it was with my mom. She's gone now, but she's still here, in my heart. I cannot hold her in my arms anymore, and I can't talk to her. Oh how I wish I could have one more time day with her. Just one. But one would never be enough.

After The Visit
Guilt in heart, guilt in mind.
Thoughts that scar I've left you behind.
An hour of time of ups and downs,
Still there the familiar frowns.
You talk to me of old and new,
I listen but I haven't a clue.
I fear the day when you don't know me,
Through your eye's it's a stranger you see.
Heart full of pride for what you have done,
You've made me the man I've become.
Time so precious now for Me Jill and Mum,
Please don't forget me Dad I Love You,
Son.
To my Dad with dementia whatever tomorrow brings your still my Dad.