Another by who has EOAD

February 6, 2007

If your Dementia Dance shoes pinch,

if you are tired of having your toes stepped on by your partner,

if your blisters are about to burst,

or worse yet,

if your blister are infected

Try this:

The Alzheimer's Three-Step

My heart aches, tears well-up in my eyes, a lump suddenly appears in

my throat. I'm sitting with another care giver who feels at his/her

wits end concerning how to please, get along with, love, keep safe,

and hang on to their loved one. Care givers seek to achieve all these

ends simultaneously!

In the mean time, the loved one is distant, confused, sometimes off

in a world of his/her own, angry, defensive, and to complicate

matters even more doesn't always recognize their loved one nor honor

the loved one's intentions. Trying harder and harder is not working.

Validating is not validating. In fact, it is producing more

frustrations. Shape shifting (my term for changing the subject) is

fast becoming a waste of time. What to do?

Ask them! Ask me!

Ask me each time your response does not produce a mutually acceptable

moment for you and for me. Try to engage me in an attempt to

understand, not win-lose, not " why can't you be more like me. "

Consider, even now I do not seem to have as much choice with my

responses as do you. Most times, I have some choices, but not the

ones you are apparently seeking. You just seem to get madder and

madder, more and more distant, more and more difficult for me to

figure out. Funny, how that is exactly what you are saying about me.

And believe it or not, you too seem to getting more and more angry

with me, more and more defensive, and this " getting " happens quicker,

last longer, is more intense and it takes what seems for ever for you

to get over it. Why I might even say you are becoming paranoid,

difficult to live with, and almost impossible to understand! Now

where have I heard that before?

I am still me, just not the me you keep trying to talk to, trying to

reason with. I am a full me - part the " old " me, part the

current " me " and part the becoming " me " .

But wait, isn't that what is happening to you too? You too are

changing. You blame it on me and I blame it on the disease!

Could it be that neither one of is good for the other one? Have we

grown to far apart to ever be reunited? Have we each of us been

driven by the other one away from the commitment that had previously

held us together through life's hard times?

Please don't rush to the Dementia Divorce court just yet. Yes, we are

different in ways, many of which we have never experienced before, at

least not to these extreme degrees. Yes, all the old ways we had

tested and relied upon to love, communicate, and resolve our

conflicts with each other no longer seem to be working. What's left?

Try Harder? Give Up? Get Out?

None of the above, thank you.

First, lighten up on yourself and me. It is my considered opinion no

one who has dementia, or is caring for someone with dementia will

ever become a Saint. Cognitive decline probably of the Alzheimer's

type or any one of the other dozen or so types produces dynamics in

relationships which human beings are ill prepared by their education,

experience, or genes to successful respond to by themselves. Process

mistakes are destined to disrupt our relationship, no matter how good

or bad it was prior to the diagnosis, it's gonna get worse!

Second, we need help. Each of us, and both of us! Cognitive decline

is not a condition we have been conditioned to successfully integrate

into our relationships or ourselves. I am deeply suspicions of

individuals who claim the diagnosis has produced nothing but positive

changes on them and their relationships. Smell as many flowers as you

want, look at as many sun sets as you can, still, brains and their

respective owners are worse off after sometime tells you " you have

Alzheimer's disease. " Wiring changes while the cells continue to die.

What lit up one part of your brain yesterday, is starting to produce

a new glow in a different part of your brain today. Our brain cells

are interested in one thing, self-preservation. When we impose all

the other requirements - I want to feel loved, okay about myself,

understand what is going on out there, and be safe and sound and full

and rich - most times the brain wins and we lose.

We make more of a mess of this disease for ourselves than does the

disease, and it does a good job of messing things up all by itself!

Third, find, use, and keep help! Not just: friends, family,

counselors, the Internet, the church and its members, books, other

people in the same boat, drugs, diversions, physicians who both know

and care about you - and act like they do, time for yourself. Also

include: long term care insurance/a realistic financial plan,

laughter, sex (with your loved one, a friend, or yourself - it's your

choice or choices), a pet and some plants, a chat group or piece of

paper or sound proof room where you can write down or shout out your

deepest and most intense but transitory thoughts and feelings. Add to

your daily life: reading books other than those about your issues

and the disease, something other than your situation to become

involved with, a grand child or two - or adopt one, borrow one, or as

a last resort buy one - and a space of your own. I am sure I missed a

few others. The point is, find something more than this mess, which

is consuming both of our lives.

Oh, and by the way: " Please help me to take these same three steps.

I'll support you as best as I can, and you support me as best as you

can. "

Thanks.

February 6, 2007

Hi Freda,

Another timely piece. It's for couples, but can suit anyone. EOAD I believe

is Early Onset Alzheimer's Disease.

wrote: