Alzheimer’s every day

 

Wednesday, September 13, 2017
8:50 PM

Every day is a new day when you have Alzheimer’s/ Dementia. Every time you wake it is like the very first time. The first time you open your eyes, the first time you see the world, the first time for everything you do, see and hear.

Every experience seems new. Like something you have never done before. And sometimes life can seem more daunting. It is certainly more confusing. Sometimes more frightening.

Sometimes the world seems empty. Like you are the only person left on Earth. Everyone left and you are the last. Or maybe it is all a dream, one long dream that you can’t wake up from.

The world becomes unfamiliar. Strange. Anxiety becomes more pronounced. Little things become things too large to comprehend or manage. Meltdowns become a regular occurrence. Something you can’t fight.

But that is what Alzheimer’s is. A battle you fight that cannot be won. Against something you cannot see, touch, hear or feel, yet oddly you can. Alzheimer’s seems like an oxymoron.

Looking into a mirror is more like looking through a window and seeing a stranger looking back at you. Often it is frightening, sometimes it may just be an interesting occurrence.

Alzheimer’s is frustrating. It makes you feel stupid, lost, alone, confused. The world seems to be in shadow, or a never lifting fog. Sometimes you don’t see things that are right there. Sometimes you see things that aren’t there at all.

A never ending dream. You walk through a world that has left you behind. But you no longer care or wonder where it went. You don’t know or care where the people went. The world, for you, has changed. Become something all your own.

Words used to have such depth. So much meaning and emotion I almost drowned in them. Now, too often, they are as distant as the world around me. Foreign. Shallow. Sometimes completely incomprehensible.

Lights have dimmed. Even the sun seems to be in shadow. Seasons confusing. Alzheimer’s proves again how unreal time is. But why does it have to make everything around me seem just as unreal? Why does it have to make me feel so alone? So lost?

 

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What I learned about being still

This is so nice, like watching thoughts flow like a river towards the sea. The words get tumbled around. smoothed, or broken, some shatter into fine grains of sand. Nothing will be left out or forgotten, but it won’t resemble what you had originally. It will grow, gather to itself all it needs to be everything you wish it to be, everything you need to be.

shanaritter: word by word

  1. It is not lying around
  2. It is not maintaining one position
  3. It is not counting breaths
    1. although counting breaths helps to get to a certain kind of stillness
  4. It is not abut mantras,
    1. although repeating a mantra helps to quiet the busy rambling thoughts
  5. You can’t be still when you are trying to be still because then you are so busy with the trying that there is no stillness.
  6. Think about when someone tells you to relax and every muscle across your shoulders and down into the arches of your feet tense. Or perhaps you just become aware of the tension and then tense more at the idea of having to relax . Its not until you let go the idea of relaxing that you do relax.
  7. It has nothing to do with giving up or giving in.
  8. But it has everything to do with surrender,
    1. as in letting go…

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Home again

The day my caregiver was supposed to go on her vacation, I got sick and had to go to the hospital. I had pancreatic and was in so much pain! Adrian and merlyn were there and so was Tiffany. She got everything done so it went smoothly and no complications. They did have to take me over to the other hospital when they had me all hooked up. Boy! When it hurts there it hurts!

I was there almost two weeks. Now I am home and have to eat a certain way so I don’t have to go back to the hospital.

Meltdown

 

Sunday, August 6, 2017

8:44 PM

I have been sitting her for a while wondering about Alzheimer’s and how it affects people. There are people who will read this and there will be people who will like it, though they didn’t read but some of it, maybe telling themselves they read it later when the time felt more right. But my time is running out. Like m

 

You see, this September will mark 10 years since I was officially diagnosed with Alzheimer’s. the official timeline might look something like this:

Age 29: patient doing well, showing impressive ways with memory recall. Almost frightening in it clarity and how much she remembers, even dreams are fully recalled upon waking and even recalled days or weeks later.

Age 33: some subtle signs of forgetfulness, patient does not always realize she has forgotten something or mixed things up, becomes extremely upset, to a major meltdown, uncontrollable for a certain amount of time. You must flow with it.

 

 

40’s we have found someone willing to look in places others are yet scared to look. And we find…the dreaded beast- Alzheimer’s. A name that really does not suit it. Not at all. It is more like an apocalypse. But I imagine many won’t like this but it is so true.

 

 

Now I am 53 almost 54 and there are a lot of people who wouldn’t suspect I had Alzheimer’s. they certainly would not know from just seeing me one time, oh unless they caught me on a very bad day and happened to see a major meltdown. Those are coming more frequently too frequently for my sanity.

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.