Frontotemporal Dementia Caregiver Support Center

Definitions | Signs and Symptons | Diagnosis/Evaluation | Genetics | Videos
Frontotemporal | FTDP-17 | Corticobasal Degen. (CBD) | Progressive Aphasia | Similar Diseases | Dementia like Diseases
Managing Behaviors |Management Issues | Safety Issues | Late Stages | Taking Care of Yourself | Stories | Children | Poems |
Insurance | Social Security Disability Ins | Living Will | Power of Attorney | Guardianship | Financial | Other Legal
Research Centers | Map of Research Centers | Add a Center | Brain Endowment | Research Articles
subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link | subglobal5 link
subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link | subglobal6 link
subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link | subglobal7 link
subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link | subglobal8 link


The information on this page is for reference and educational purposes. There is no substitute for seeing a doctor.
Quick Links

The poems below were written by someone very close to a person with Frontotemporal Dementia. I wanted to share these poems with you.

You may wish to have tissues with you before you read the poems below. They are very powerful.


daughter of Randy's girlfriend
created on 01/18/2006

They tell me that I'm slipping a little more each day
they tell me that I'm different in all I do and say
they tell me I am changing and only for the worst
I feel as though I'm damaged, I feel as though I'm cursed

Don't you see me standing here? Needing all your love?
I pray each day but no answers come from above
give me time to show you, all you mean to me
give me understanding even if you don't agree

Betrayal by my body, I slowly start to fade
and forget all the choices in my life that I have made
instead I just remember a snippet of our time
a laugh we shared, a funny joke, a silly song or rhyme

I want to go on being the man I used to be
instead I am releasing my grip on sanity
hold tight! hold fast! don't let me go alone
I feel as though I am sinking fast, as quickly as a stone

But don't despair on my behalf, for on the other side
there is a man who loves me, my creator and my guide
in his presence I will remember all I need to know
the damage to my spirit he will mend and sew

So when it's time to say goodbye, remember me like this
a warm and loving hug or a soft and gentle kiss
a daddy to my babies, a lover, a brother, a friend
for I will see you soon- for THIS is not THE END!


In a Man’s Body

created on 03/16/2007

Sorry, I don’t want to go to Wal-Mart.
I have to finish this paper, Dad. 
I can’t go get you a pack of gum right now.
No, you can’t have another English Muffin.
I don’t know what time Mom is coming home.
What do you mean, you broke your glasses?
Leave the cat alone, you are hurting him, Dad.
No, we can’t go to Wal-Mart to get them repaired right now.
I have to sleep after I finish this paper. 
I have to work tonight.
Dad, I won’t go get you a pack of gum.
Can you please turn down the TV just a bit?
Hoodia green tea?  What?  No, you can’t borrow my credit card.
I said turn it down, please!
No, I won’t go get you a pack of gum.
Dad, it’s finals week.  I need to finish this paper and study.
No, I won’t go get you a pack of gum.
No, I don’t think you need natural male enhancements, and no, you can’t use my credit card.
DON’T take my car keys.  Give them to me.. NOW!
How many times do I have to say no, Dad?
I don’t know if mom is getting groceries.  I haven’t talked to her today.
No, I don’t know what time she is coming home.
We will go to Wal-mart tomorrow, ok?
Don’t throw the cat!
No, I won’t go get you a pack of gum.
Dad, I already told you no more English muffins.  You just had lunch.
I don’t think that you need the nutrisystem diet. 
Dad, I won’t give you my credit card. 
Please quit asking.
Dad, quit pulling on the cupboard.  You are going to break it. 
No, I am sorry, I won’t unlock it.
Yes, I will go look for your old pair of glasses in a minute. 
Let me finish writing this paragraph.
You just had lunch, you don’t need an English muffin.
No, I won’t go get you a pack of gum!


Written by Jessie M. (step-daughter)
and Family

THE distant trumpet sounded today,
as the master came to take you away.

We know the time to go is nigh,
but with heavy hearts we say goodbye.
I long will remember how your life touch mine,
and long will cherish your memory's through time.

Your jokes and your storys of long ago lore--
Your smile and your spirit are what we adored.
You've traveled life roads with mimmie-mom-hand and hand,
hunting and fishing with family and friends.

Following the master to the very end.
God gave you courage to face life's tests.
Now his comfort surrounds you with peacecalm and rest.

He held your hand and with love lead your steps,
and every promise he made to you is a promise he kelp.

I did'nt know when i last saw your face,
That i'd have only memoriys to take it's place.
But i,ll store them up carefully and use them one by one.
And i,ll see you again when my time here is done.
You've touched so many on your walk through this life,
Laughed through the good times endured the strife .
And though death has claimed you now, I know that today
Your spirits still with us every step we take along the way.

I,m happy T that your pain has been taken away.

And now you,ll walk with the lord everyday.
You,ll wait there for mimmie and us with your arms stretched out wide,
Then forever in love she,ll walk by your side .
Soon our heartachs and tears will suside
Cause we know that in heaven you,ll forever abide.
We'll lift up our hearts and praises will sing,
As we bid his farewell--the bass catching king my dad T .

Our hearts will eche long as we miss you T-you were so dear to us
But we rejoice that now your battle has been won.
Until we see you again,on the streets made of gold .
A place in our hearts you forever will hold .
love you T

step daughter jessie*
2 other step children/wife/3 grandchildren/mother/9 brothers
and sister lots of nieces and nepews

 ----T---your gone this devil diease took you from us ..
feb,16th/2003 after 5 years of battle with pick's

This is a poem we wrote the day we buried my step dad ,he was only 46 years, when god called him home, it was a long struggle with pick's diease. that took him daddy gone but never forgotten, T-you were everything to us, we watch a strong man go from strong to weak in just a few years, god has you now there in his arm.s and we know that you are not tired or hurting anymore. mom&I were his caregivers at home it was really hard to take care of him.but the infections blood clots and heart was so tired ..god knew he had to call him home he needed rest and peace .........

When I feel emotional, I put words into poetry, and my most recent
one best sums up the way I feel:

Written by Kathy

He sits and cries, calls out for mum,
He's crawling on the floor.
We've lost him at the shops again.
He's talking to the door.
He makes no sense, can't say my name
And will not stay in bed.
Can't dress himself, and hates a wash
And only eats when fed.
"Who is this child?" I hear you ask,
And wonder why I'm sad.
The child above I talk about
Was really once my Dad.

Ode to FTD

Peggy Coleman

To death do us part, but please tell me, what is death?
Only his body remains to taunt me with past memories of shared love;
being held with caring and concern, discovering new places,
remembering old experiences together. A smile, a sharing, a mutual
caring that will never be again.

Fate has tricked me. I sometimes wake to face the day, forgetting
that I am now alone in marital spirit. The sight of him makes me
smile, thinking to share the day, but instead, the day is only
endured. I grieve for the loss, but pray my memory of our love will
stay intact. How cruel if the only remaining memory for the future
is of the present, and the past memories become oblivion.

Where has his spirit gone. Was it contained in those brain cells
that were destroyed? Or is it as much a captive as I in a marriage
that is no longer about sharing, just about giving and giving and
giving, with no hope of anything besides caretaking. And what about
the soul? Where could that be? Gone with the other brain cells?

I grieve every day although he is alive, but alas the grieving will
not end for a long long time. Shall I rewrite the steps for
recovery from grief with a very long interval between them? Life is
cruel. I guess the kindness is that he does not know that he is but
a shadow of his former self; recognizable by appearance, but not in
any other way.

Would I have married this person who I live with now; the answer is
a resounding no. He is not the person I married. That person is
dead to me already. My husband and my best friend are gone. I wish
I had been able to say goodbye. The person I know live with is but
an imposter who shares my life.

By Deborah D.

For those of you who loved me, I loved you twice as much.
You'll never know the peace I felt with just one heart-felt touch.
I yearned to tell you all the things I could not say out loud,
To tell my wife how much I care, to tell my kids I'm proud.

If I could have just one more wish I know what it would be,
To wrap you in my loving arms and hold you close to me.
To thank you for your patience and for your tender care,
Your words of love that touched my soul though I seemed unaware.

I'm sure it seemed to all of you that I just couldn't see
The way you felt, the things you did, the love you had for me.
My Darlings I must tell you now what I could not express
I felt the Love from each of you and knew that I was blessed.

For you see the only thing that ever did get through,
Was love and love alone was all I ever knew.
Because my mind departed you thought me not quite whole,
But what you didn't know is you were speaking to my soul.

A soul which understood the love you always had for me,
And I shall cherish each of you for all eternity.
And so I leave to wait for you , my soul has been set free,
I pray you'll feel my love for you in every memory.


I Need You

Do not ask me to remember
Don't try to make me understand
Let me rest and know you're with me
Kiss my cheek and hold my hand

I'm confused beyond your concept
I am sad and sick and lost
All I know is that I need you
To be with me at all cost
Do not lose your patience with me
Do not scold or curse or cry
I can't help the way I'm acting
I can't be different, though I try
 Just remember that I need you
That the best of me is gone

Please don't fail to stand beside me!
Love me till my life is done.

Author Unknown


Linda Hock

Do you know how hard it is
to listen to you
berate me,
insult me,
offend me
because I have
taken away the cigarette
that was ready to burn the couch,
refused to let you drive,
made you take your medicine,
tried to take care of you?

Do you know how hard it is
to remind you for the 215th time
that the blue toothbrush is yours,
the pink towel is mine,
the VCR remote does not turn on the t.v.,
our daughter's phone #,
our phone #,
any & every phone #?

Do you know how hard it is
not to yell &
scream &
rant &
every time I see the blank look in your eyes
or hear the same story again &
again &

Do you know how hard it is
to think for 2,
speak for 2,
do for 2?

Do you know how hard it is
not to cry,
to moan,
to wail
when I see our future together burn out,
burn up,
burn away
as the doctors &
hospitals &
hold out their hands

Do you know hard it is
to see my husband turn into my child?

Do you know how hard it is
to let the great baby-sitter Disney
keep you occupied
so I can have 5 minutes
to do the laundry,
do the bills,
do the housework,
do anything?

Do you know how hard it is
to know it will only get worse
before it is over?
And then it will be the worst?

Do you know how hard

Do you?

of course,
you don't.

Thank God.


The Thief

A thief crept into my home one night, but how he came in,
and how he left is still not answered quite right.
Diamonds and pearls were not the goal, gold and coins lay
untouched, and TV's and stereos all kept their dust
What he took was much more precious than any of these, and
even worse was what he left with me.
This thief, this devil, this blight unknown he stole my
heart and very soul. In he came, with no backward glance and took
the mind of my best friend in life.
Overnight it seemed, all I had known was now replaced with
the unknown and someone unfamiliar in my loved one's place.
What right? I thought, and "just you wait." But it was too
late, for already he had escaped from my estate.
Now what? Which way do I turn? How can I fix this damage
he's done. I already knew the answer was mute, not enough research,
no good news.
Here I sit alone with hopes and prayers, chatting with
others who have suffered the same insane thievery.
Hope against hope that he can be caught or stopped, and that
ways will be found to undo his foul harm.
Until then my friends, beware the thief, lock your doors,
and secure the windows. Never take those you love for granted, for
you cannot know how or when this thief may come in, and prey upon
your life's best friend.

There is someone inside!

God bless
David S.

There is someone inside! I wanted to scream. Or did I?

I simply wanted to ask a question.

While I sat there mumbling senseless words that did not seem to
form sentences, people around me were talking as if I was not there.

There is someone inside! I wanted to scream. Or did I?
"Has he gone crazy"?
"Can he speak normally"?

Why were they asking these questions?

It was I that wanted to ask the questions!

There is someone inside!
I wanted to scream. Or did I?

I was in a state that I wanted to ask how long I was unconcious
for and all that came out of my mouth, (After the mumbling stopped),
was "What is the time?'

The point that I am trying to get through is that although your
mom is acting "strangely", there is actually still that someone
inside that you cared about and loved. for what she was and what you
remember her as.

We do not know what is going on in her mind, but I cling on to the
belief that "There is someone inside" and as long as you have
someone to communicate with, I would treasure every moment, becasue
sooner than you expect, that little bit of communication is going to

Time unfortunately stops for no one, and in our case, as we watch
our loved ones disapear before our eyes, time seems to go on forever,
but as we look back for memories, we wonder where the time has gone.

Please be strong.
Remember, beyond all that strange behaviour, There is someone

The Pick's Disease Support Group has this web page with 3 poems.

A Yahoo Support Group Member found this poem called, "Picks Disease" written by Catherine Turner-Joll

'Save This Picture'

Please don't ask me to remember
Don't try to make me understand
Just let me rest, and know you're with me
So just relax and be at hand.

I'm confused beyond your concept,
I'm often sad, and sick and lost
All I know is that I need you
To be with me at all cost.

So don't lose your patience with me,
Don't scold or curse or cry.
I can't help the way I'm acting
It's not me who is inside

Just remember that I need you,
That the best of me is gone,
Please don't fail to stand beside me,
Pray that God will make you strong.

Save this picture little brother,
Remember times we had so fine,
Because as I grow older,
You can't fix me up this time.

But being broken's rather pleasant,
In childhood memories I am hid.
Like a kid with out a worry,
Just like Huckleberry did.

There comes a time when your involvement
Is the only voice I hear.
My wife I love most dearly
But I've talken-off her ears.

There was that time in Aspen
Amid the mountain Snow
Where I played you my last chess game
I just wanted you to know.

That there's a time in every lifespan
Where we surrender what we know.
Without a rudder in life's ocean,
I need a line for you to tow.

Now I've relinquished my ambition,
Even laugh at my own strife,
And my only consolation
Is the acceptance of my life.

There's a song I can't remember,
Yet the lines in it are true.
Now there's less and less for me to prove
And more and more to prove it to.

Author Unknown
Modified by Dan S.

+11/20/07 (Dan S.)

About Us | Site Map | Disclaimer | Privacy Policy | Contact Us | ©2006 Brauer Solutions, LLC