Struggle, Struggle, Struggle

 

 

A Walk with Alzheimer’s

 

 

Once free

To fly,

To dance,

To play, laugh and sing,

To scream,

To cry,

To wonder why.

Now bound

Shut windows,

Locked doors,

Everything kept in

Gloom and shadow.

Too soon a ghost

Haunting now unfamiliar

Halls and rooms.

Once free

Now bound

Too soon a ghost

Having to watch

The playful dance

Between shadow and light

While haunting

Those same shadows,

That seem so innocent,

As the gloom attempts to

Shroud me

And something much darker

Consumes me.

Once free

Now bound

Too soon a ghost

Dead before I am dead.

Words begin to vaperate

When words suddenly have no meaning, they are simply words on a page, I am suddenly afraid.

The world feels so much more empty and distant somehow. How can you write when words have no depth?

Alzheimer’s is suddenly more real than it was for me. I hope this with not last and is just one of those days.

Harsh Reality

Saturday, July 15, 2017

7:46 PM

There will come a time when I won’t mind anything that happens or that is said, or so they say. But everyone who cares for me, they have to care about things.

 

Caregivers have to sit by and watch as those they care for slowly die. They have to watch as they have good days and bad, as they laugh and when they cry.

 

They have to do this without losing their temper with the person they are caring for. Without losing their temper with themselves.

 

They have to do so much more than simply empty bedpans and wipe bottoms, they dry tears and clean up messes that happen and listen when the person they are caring for goes off on a tangent, or rant, and have to do this without getting upset or laughing at the person, though they will laugh with them.

 

Alzheimer’s/Dementia of all kinds affect everyone differently. They go down the road at different speeds and none in the same manner. Just because someone may go quickly doesn’t mean everyone or even most will follow the same.

 

I was diagnosed almost 10 years ago. Before the doctor started me on the medication I was indeed at a bad time. I couldn’t string words together or come up with words. Or I could think of words but not write them. For a writer this is very terrifying and upsetting.

 

After the medication I could write again and I went on with my life more or less not really realizing there was something wrong with me. Then something would happen and I would find myself slapped in the face with, yup, Alzheimer’s.

 

Despite going down hill every time they had taken me off my medication when I got sick or was admitted and they didn’t really understand the need for it or what the dosage was supposed to be I managed okay. Never got back to where I had been before, but not too far.

 

But the last few months have been harder for me to pull this off. It’s like I have been acting a part in a play and now the lines are becoming more difficult to recall. I am slipping and I know sometimes people might think it an act when suddenly I can’t do the things they had seen me do so easily.

 

When one moment I am fine and talking about, the word eludes me sorry but you probably know what I mean. I am beginning to struggle so need to make this quick. When one moment you seem fine and the next you can not get any word out or suddenly it feels like someone is smashing your brain into nothing, taking everything you spent a lifetime putting in there away. It makes me so angry!

 

I never asked for this and I most certainly would never pretend. Having your life slowly sucked out of you by some horrible thief who doesn’t care who you are or what you have done during your life. And having to know that family, friends and caregivers have to watch this play out to the end while you one day won’t give a shit.

 

I hear some of you, watch your mouth. No! I have just as much right to scream and yell and cry as anyone. I need to do this before I can’t do it anymore. While I still can, as Rick says.

 

We thought it might be due to menopause, after all I am only 53. but I am beginning to wonder. I was having signs way early, possibly as early as 30 my mom said. When she thought back.

 

I started with an idea, but somehow I lost it all. I know it was about caregivers and having to watch as we slip away. Am I still there?

 

Lost. I have been more lost than found lately. Words there and when I go to write them they always look wrong. When I type I trust the spellcheck like I never did before. I try to correct the wrongs but sometimes I can’t because I have no idea which one might be right.

 

All I can say is though even I think sometimes there is nothing wrong with me, when it raises it’s head and lashes out I am not faking it. It feels like an attack like none other. Sometimes there is a fog that takes things away and sometimes the world simply goes dark. Either way I remember little or nothing when it clears and when it clears now it doesn’t clear as well. I am still in a haze. My head feels stuffed too full like it is being smothered. Not too full of memories those are being stolen from me.

 

How much longer? No one can say. Only God knows.

 

HUGS

Hit another bad patch

I am beginning to wonder how much longer I will be able to come here and write things. It has been very difficult lately. so often it frustrates me because I will have a word and when I go to write it I find it either does not look spelled right, or something else will bother me. Sometimes another word similar to the one I want rears it head and offers itself up, laughing at me I can imagine.

 

Today I was reading something and came across a word that no matter how I tried a different word whispered in my head. That word? Uncovered. Even now, typing it and saying the word along with coming out “undercover” . I had another trial while writing earlier this evening. I knew very well what several of the words were, but purhaps my attempt at writing as much in cursive caused part of the problem.

 

Things seem to change quickly and very much without warning. Then, also without warning, I find myself okay again. Sleepy days may be 24 hours or longer. I have, despite my doctor … I’m sorry. I have no idea what I was going to write. I will leave it for now. Who knows maybe the thought will complete itself later. I can and still do dream. And am falling asleep here. So good night all.HUGS

 

.

Great quotes

“If you are neutral in situations of injustice, you have chosen the side of the oppressor. If an elephant has its foot on the tail of a mouse and you say that you are neutral, the mouse will not appreciate your neutrality.”

Archbishop Desmond Tutu