Excerpts from my friend Kevin Smiley’s FaceBook page at
Kevin Smiley February 10, 2015 at 8:13am
Realities of Dementia
never will be found.
New memories, lost someday soon.
Holding on to today,
that’s all I have left to do.
If tomorrow doesn’t come,
remember I always loved you.
Kevin Smiley February 11, 2015 at 10:06am
Realities of Dementia 2
Sleep is all I do
Nine, twelve, or fifteen.
Dreaming throughout the night,
Most are terrifying, some give peace.
I pray for peace before I sleep,
Sometimes it works, but mostly it don’t.
Remembering them is not allowed,
Because then I could be prepared.
Depressed, depression is all it is,
It creates the hell within my brain.
God forgive me for my thoughts,
This is not the life I want.
I know you love me,
And my family does to.
But, this is the life,
It is what it is..
Kevin Smiley February 11, 2015 at 9:28pm
Realities of Dementia 3
Love is given,
Love is received ten fold.
She stands by me,
Given up her life,
To care for all my needs.
Once I could make sound decisions,
Now she makes them for me.
How long will it take,
When this disease takes it’s toll.
It’s been 5 years now,
I thought it would be 2 before I went home.
Yet she loves me still,
With all my ups and downs.
I don’t know how she does it,
Because it can’t be fun.
It just must be love.
Kevin Smiley February 12, 2015 at 4:19pm
Realities of Dementia 4
As the day begins,
It ends the same.
Sleeping my day away,
As I do my nights.
Moments of hope,
Moments of despair
Memories of days gone by,
But forget everything.
I read the bible everyday,
But can’t remember anything except John 3:16.
I guess that’s all that matters,
For that will put at Heavens Gate.
Kevin Smiley February 21, 2015 at 5:21pm
Realities of Dementia 5
Temper is reflected in my voice,
I wish I had a choice.
I use to not be so mean,
But now its easily seen.
It’s also in my eyes,
I see it in my mind.
I hear it with my ears,
I’m not bringing much cheer.
I rarely have a smile,
Before you could see it for miles.
Dementia, dementia, dementia,
Please give me a break.
The days will come,
The days will go,
But the dementia will last.
Kevin Smiley February 22, 2015 at 4:57pm
Realities of Dementia 6
Hello, I must apologize upfront for not remembering who your are, but I truly appreciate you taking the time to right me or say hello. This is often the words that come out, or the look on my face when someone approaches me or emails me.
My Story +5 years Now
This story keeps going on and is often in disarray. But, Debbie keeps me going with love and compassion. The only thing I can say, is that family and especially the spouse of the one with dementia needs to be surrounded with a emotional loving support system.
It often seems like once someone is diagnosed with this disease and it has no physical outward symptoms people, ie….friends don’t think anything is wrong, or you hear the words “I forget things all the time, do you think I might have the same illness”. This only deflates the severity of the disease and dismisses the fact that the individual is just as sick as someone with cancer, heart disease, diabetes, liver disease, etc…..bad thing is this disease is untreatable, no cure, no drugs, just death at the end of it eating your brain away!
The truth is the severity of this disease is unappreciated. The world does not get an everyday glimps of the tragedy that goes on within the home life. The personality changes, short temper, the constant forgetting what you were doing, the constant inability to stay focused on an individual task, forgetting how to manage your money, the poor hygiene, the 12-15 hours of sleeping per day and still feeling like you haven’t had enough, this is just a few of the symptoms.
I often spend time just looking into the unknown with a blank, flat, lifeless looking glare in my eyes. No smile, no expression, no real reason for living, other than the love I have for my family and especially the one person who stands by my side daily, for me that is Debbie.
Somedays, I often wander about her health and mentally what this does to her happiness. She is not afforded the life I promised her anymore, but it’s “through health and sickness”. When we make promise before God, you sometimes wish you could take out the part about sickness. Giving that love one a free out to save them from going through the heart breaking moments of everyday life with someone with dementia. This would protect them from seeing the one you love turn into an unrecognizable zombie of a brainless object of life.
The demoralizing affects of Frontal Temporal Dementia is found more in the way it will ultimately and profoundly destroy the hope of a better day coming, a happier year, a great decade together.
You begin to develop obsessions, become over religious, over eat, and not care what you say or do anymore. Even though you know something is wrong you can’t stop yourself from doing it. Embarrassment doesn’t stop you, even though your mind tells you differently.
I am writing this as an effort to communicate to the world about how devastating this disease is to the individual, but more importantly to the spouse and family.
May God’s eternal grace be upon you all.
Kevin Smiley February 11, 2015 at 2:08pm: That would be fine Truthful, I’m going to try and write one each day. Sort of a history catalog of my journey.
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