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I'm also part of the Yahoo Group 'DementiaRescue' and wanted to share

with you the posts by who has Early Onset Alzheimers.

He writes so well and it's helped me to understand what my mother may

be feeling - thought you all might be interested too. FYI - he gave

me permission to copy/paste his message.


While lunching with a friend today I told him of a deep existential

fear which is starting to creep into my heart and mind. I am

starting to fear the coming of the end of me. Not the death of me,

the end of me as I know myself and as other's have known me. My body

will still be around and like my grand daughter's hermit crab some

one or thing will crawl inside of me and carry me around for a while

until I become too much of a physical burden and then the crab will

leave and my body will stop functioning. It is an interesting

question about when I will actually die, but that is another yet un-

written piece.

The consequence of this creeping fear is I have noticed I have

started to pull more into myself. Hello? I fear being alone with a

stranger I don't know, maybe won't like, certainly won't understand

as I now know myself: and here I am hastening the process by

withdrawing into myself. It seems to be the pattern most people with

Alzheimer's follow. Even before we must withdraw because of the

failure of our cognitive processes, we begin to pull into ourselves.

The more " errors " I make, the more fearful I am. The more fearful I

am of the future the more I rush into it. In an odd sort of way, it

is safer to hide in a dark closet, even if I am afraid of the dark.

No one can see me. If I make mistakes reading aloud; if I cannot

remember to close the door; if I forget to take out the dog – no one

will know. And now I know for sure I have reached a point of self

awareness that I know I don't know. I just don't know when I don't

know. I misunderstand what is going on around me. I get confused

about the order of occurrences and sometimes draw wrong conclusions

based on a mix up time line. I don't forget in the sense when I am

cued or reminded it comes to my mind. I have to stop and consider

what I have been told I forgot. I have to consider it as if it

happened, even though I still have no recollection of it really

happening. What if it were the way someone said it was. How would

that change what I now feel and believe? But I honestly do not

recall it. Have no recollection, at all! Can I successfully live in

a world where I am missing larger and larger chunks of what is going

on around me?

Now we all make perceptual errors. We all have our predispositions,

filters, idiosyncrasies, and differences. Yet, we all somehow manage

to reach some agreements that lead to caring and loving each other,

which lead to commitment and families, which lead to a sense of well

being. Remember I'm Okay, Your Okay? I know I am on some occasions

not okay, I just don't know when they are happening. I don't know

how to recall and understand them with the benefit of hindsight.

Increasingly I cannot trust myself to take care of myself. I know I

was never perfect. I know I could have been better. I know I tried

my best and hardest, most of the time. Now, I am dealing with the

fact those days are over. I am losing control of my potential to

improve. I am losing control of my ability to understand myself.

These issues of lack control of myself are leading me to existential

fear of losing myself.

Along comes my friend who tells me not to worry because everyone

makes mistakes, forgets, and gets confused. I think he called them

brain farts! If only they were signs I ate beans instead of signs I

am moving into another stage of the disease! They may smell the same

to others as their own, but to me they are confirmation of what

others have been saying for three years: " You have Dementia,

probably of the Alzheimer's type. "

As Alzheimer's progresses human beings don't become aliens. They are

still human beings, just repackaged in a way that is unique to their

original packaging. The symptoms and the consequences of the disease

are not by themselves unique to this disease. When they come

together, when their cause is (whatever they eventually will agree

causes the disease) the disease process labeled as Dementia, of the

Alzheimer's Type, then the fact that separately they are " human "

behaviors which many people occasionally experience is true, but not

useful for the person with the disease to consider.

Well intended as family and friends are; confused and fearful as

they are when they see symptoms in me which are characterized as

gastric events in others; they fear losing me and I fear losing

myself. It is not that one fear is greater or more profound than the

other is. In fact I believe as carers see the same signs as I (In

fact they see many more because I am at a place where I can't

understand, appreciate or see my mistakes) they too develop an

existential fear about who they are, can they make it, will they be

successful, and they try harder instead of withdrawing.

So I am withdrawing, those around me are trying harder to engage me,

and we cannot appreciate or understand why the other person will not

be more like them.

I believe individuals who are confronted by the advancing stages of

the disease prematurely withdraw because it is easier, it is safer,

and they do not know what else to do. Carers who are confronted by

the advancing stages of the disease pull harder on us to make us

feel safer. Ironic isn't it that the harder they pull, the harder

they try the more we resist.

We need to engage with each other in a different way. If we haven't

yet engaged – you watch me and tell me what not to do – I try but

reach a point where I know I don't know if my trying is or is not

successful – it is very, very difficult to suddenly " connect " with

each other. We are scared, we are already trying what we think is

best for ourselves and the other person, we are at odds and we know

it but don't know what to do except keep trying.

Remember the harder we try to implement our own strategies the move

difficult it becomes for the other person to implement their

strategies. This tug of war is guaranteed to produce two losers. I

will prematurely disappear into myself, and you will prematurely be

forced to deal with me in a condition you don't want to happen.

Oh my!

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