Notes on Parenting

Insights for parenting babies, toddlers, teens, and young adults.

Tuesday, June 19, 2012

To My Loved Ones: Living With Alzheimers

My friend and colleague, Lindsay C., wrote this poem about living with Alzheimer's.

To my loved ones;

I have experienced many things in my life,
which I cherish and hold deep within me.
I wouldn’t trade them for the world,
because I am able to re-live them in my memory.

I have noticed slight changes in myself,
from wrinkles, energy, mood and mind.
But I don’t let it bother me,
because a long happy life is hard to find.

At times I am forgetful,
and my memory isn’t as sharp as it was in the past.
But forgetting things is normal with age,
so I am not concerned that it will last.

My family hasn’t noticed any changes yet,
because I am good at hiding what I can’t recall.
But what they don’t understand is it’s not just me,
that this hidden darkness will affect us all.

I have grown to be more confused and nervous,
I used to be very neat and clean.
For something is happening that I cannot explain,
I have become messy and somewhat mean.

I enjoyed all activities with my family and friends,
This precious time would make me smile.
I can’t remember the last time I really participated in activities,
come to think of it, it’s been quite a while.

Today my spouse asked me to get in the car,
I agreed and we left for a ride.
When we arrived at the hospital,
my love took my hand and walked me inside.

The doctor had introduced himself,
and proceeded with cognitive tests.
I didn’t want him to take them,
but I knew it was for the best.

After watching him review the assessments,
He looked down and said “it’s just what I expected”.
My heart had dropped while I held my breath,
it was a mental illness he had detected.

While I wanted to yell “there is nothing wrong with me!”
The doctor had said it’s a major world wide issue.
As my husband put his arm around my shoulder’s,
Pulled his chair in closer and handed me a tissue.

He said 15% of people are affected over 65,
and jumps to 40% with a disease of a particular kind.
It is scaled in mild, moderate and severe,
and it will not only affect my memory but affect my whole mind.

Before leaving the doctor had shared what will happen,
geographical disorientation, personality and behaviour change.
Communication dysfunction and possible delirium,
Depending on which end of the spectrum I range.

He discussed care giver support groups with my husband,
and shared that a common aspect of this disease is depression.
He gave a bunch of names and numbers for respite care,
so he didn’t become overwhelmed with my cognitive regression.

He ended the conversation with the worst words of all,
that it will progressively get worse and there is no cure.
Many people do not have insight into this illness,
but treatment can slow down the progression, that’s for sure.

The ride home was nothing less than awkward,
there wasn’t a sound or sigh- everything was silent.
All I thought about is how things are going to change,
but that’s not me, that’s not who I am, I’m not violent.

When I get home I just want to be alone,
I really didn’t think anything was wrong, it was just age.
I finally have my emotional break down,
My soul turns dark and my heart fills with rage.

As days turn into weeks and weeks turn into months,
My family has become aware of my lack of skills.
They have me writing notes, making lists, doing strange things,
while the doctor pumps me full of pills.

I have stopped walking in the woods to sight see,
because I don’t know which direction to go.
I have gotten lost a few times away from home,
and will anyone find me? I don’t really know.

I’m starting to continuously repeat myself,
with all the stories that I share.
But people just nod their heads and agree,
As if they don’t even care.

Sometimes I have moments that scare me,
and I can’t recall my spouse or the ones I love.
This fear turns into aggression very quickly,
because when I get this scared I will push and I will shove.

My personal belongings have been going missing,
I see things that aren’t actually there.
I blame my loved ones for stealing my things,
I will look momentarily and not find them anywhere.

One day I watch my family pack all my clothes,
and load it in the car.
I begin screaming and crying that I don’t want to go
Has the illness really gone this far?

I have gone to live in a home away from my family,
with staff, sick people and controlled by key and lock.
My family says they can’t take care of me anymore,
I am devastated they gave up and have written me off.

Everyone tells me I will be visited often,
and that I can even go to my house and spend the day.
But I am scared to be in this place and away from them,
but my family reassures me that things will be okay.

Six seasons have gone by and I no longer recognize the people I love,
I can’t even picture the house I have lived in for 60 years.
Now it’s time for these people I apparently know to make a big decision,
Their hearts are breaking and their eyes fill up with tears.

Sometimes I look up at the pictures on my wall,
of those people who no longer come to visit on a regular basis.
But that’s okay, I don’t mind.
I have never known those unfamiliar faces.

Now I am trapped within my own mind,
with lots of other people and between 4 walls.
It’s getting much more difficult to move around,
without serious risks of falls.

I have been confined to a wheelchair,
And do not speak to anyone directly or look them straight in the eye.
I would rather sit by myself in my room,
to look outside and watch the seasons pass by.

I am what they call incontinent,
and not able to go on my own.
I am not sure how to feed myself,
which explains why I am skin and bone.

Strangers come into my room every day,
they are friendly and help me put on my clothes.
I don’t know how to dress myself anymore,
I don’t even know how to wipe my own nose.

It’s hard to know if I am suffering,
it’s hard to know if I am well.
I lay in my bed with eyes closed,
but its coming to an end- this I can tell.

I have drifted away from my body,
And do not feel any pain.
This was a part of life’s course for me,
And no one is to blame.

To my family- Now it is time to say goodbye,
I am going to leave this world in my sleep.
Please remember me before this disease,
I love you all, please do not weep.

Written by:Lindsay Chatterson.

Shared by:
Josh Lockhart
.....is Locking Hearts Together


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