Re: The Alzheimer's Angel

[Guest guest]

I posted this poem on the other board too. And wanted to share what

felt about it. He amazes me.

's response to this poem.

Subject: When you wish upon a star, makes no difference who you

are...it's still a wish

I don't question the good intention of those who submitted this

poem, or read this poem, or reacted to this poem. I just want you to

realize there is another way of looking at it. You may not share my

perspective, or believe me, or like what I have to say; but please

know there is another side to this coin.

I suppose for a few people in a few deep and dark moments, reading a

poem that paints a caregivers fantasy of what they want to go on

inside the mind, heart and body of their loved one is appropriate. I

can only suppose because I will never be in those shoes, but I can

tell you from my shoes these kinds of tear jerking poems reinforce a

foundation and perception in the minds of caregivers that is not

shared by persons living with the diagnosis.

I do not see this disease as a test or a challenge for my family or

me. It is a random occurrence that just happened to occur in my mind

and therefore was imposed on the lives of those who love me. I do

not want to be seen or treated as an empty shell. There is still a

hermit crab in that shell! It is I, your son; father, mother, friend

or whom ever started life in that shell. If you are only going to

treat me with love and respect because I give it back the same way

to you, then I question the conditional nature of your love from the

beginning.

I know this is different for you (as buy the way it is for me). I

know the different is disruptive to your life, your finances, your

time, and your family. I know you did not ask for the different and

do not like it or want it. I know it is not fair, or nice, or best

for you. I know I seldom tell you this, nor act as if I know it, nor

seem grateful for all the changes you have made to accommodate me.

I know I told you that if you tried hard, got good grades, didn't

have sex until you were married, graduated from college, and

produced as many grand children as possible for my enjoyment that

life would be better for you that it was for me. Oh yes, don't

forget the part about saving earlier and more for retirement than

did I.

But listen up now. Just because I am not who you knew or want me now

to be does not mean I am not someone. When we start to treat each

other as people we love up to a point, and then we begin to treat

the bodies of people we loved as empty shells because they have

grown old, or have a disease which has changed their personalities,

their attitudes toward you, and how they behave all parties are in

trouble.

You are in trouble because you have prematurely buried your parent,

child or friend. I am in trouble because you have prematurely buried

me. In my place you see someone who can't control their bowels, has

taken up all your free time and more with irrational requests and

behaviors, eliminated your sex life with your spouse, caused you to

become depressed, driven you to drink more and take more pills, and

the list of how you are different as a results of being a care giver

goes on and on and on.

Why won't you be a best friend to me? Why won't you respect me as

your relative, your friend, a person? Why do you read poems that

cause you to cry because they are so sweet and touching, instead of

reading about how to improve your relationship behaviors and better

understand me? There is no greater potential for the discovery of a

silver lining that comes with this disease than comes with any of

life's other challenges, nor day to day living for that matter.

We all have an opportunity to better understand and appreciate each

other and ourselves, up to a point. I would prefer I had the

opportunity without having to deal with the symptoms of Alzheimer's

disease. But I do not have that choice, and neither do my

caregivers.

My point is let's push ourselves and each other to try harder, to

try different, to try longer before we start to read greeting cards

to each other which help one party feel good by ignoring the real

plight of the other person and pretending all is well with them and

we are the only ones with issues and problems?

We can escape the reality for a few moments by sharing a poem... and

then what? Once we have released some pent up emotional pressure

with our tears, haven't we also set ourselves up for more

disappointment, more alienation, more frustration, more anger?

Better to stay centered in what is, than use what we wish it were as

a legitimate excuse to cry.

[Guest guest]

Good points. For anyone. Arlene

[Guest guest]

, this makes me cry, just as his poem did. is so

intelligent, and gifted. I see things as he does, and it tugs at my heart very

much so

for our loved ones that are dealing with this problem.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism, and Frontal Lobe Disease with Apathy

In a message dated 5/16/2006 6:24:49 AM Central Daylight Time,

octoryrose@... writes:

I posted this poem on the other board too. And wanted to share what

felt about it. He amazes me.

's response to this poem.

Subject: When you wish upon a star, makes no difference who you

are...it's still a wish

I don't question the good intention of those who submitted this

poem, or read this poem, or reacted to this poem. I just want you to

realize there is another way of looking at it. You may not share my

perspective, or believe me, or like what I have to say; but please

know there is another side to this coin.

I suppose for a few people in a few deep and dark moments, reading a

poem that paints a caregivers fantasy of what they want to go on

inside the mind, heart and body of their loved one is appropriate. I

can only suppose because I will never be in those shoes, but I can

tell you from my shoes these kinds of tear jerking poems reinforce a

foundation and perception in the minds of caregivers that is not

shared by persons living with the diagnosis.

I do not see this disease as a test or a challenge for my family or

me. It is a random occurrence that just happened to occur in my mind

and therefore was imposed on the lives of those who love me. I do

not want to be seen or treated as an empty shell. There is still a

hermit crab in that shell! It is I, your son; father, mother, friend

or whom ever started life in that shell. If you are only going to

treat me with love and respect because I give it back the same way

to you, then I question the conditional nature of your love from the

beginning.

I know this is different for you (as buy the way it is for me). I

know the different is disruptive to your life, your finances, your

time, and your family. I know you did not ask for the different and

do not like it or want it. I know it is not fair, or nice, or best

for you. I know I seldom tell you this, nor act as if I know it, nor

seem grateful for all the changes you have made to accommodate me.

I know I told you that if you tried hard, got good grades, didn't

have sex until you were married, graduated from college, and

produced as many grand children as possible for my enjoyment that

life would be better for you that it was for me. Oh yes, don't

forget the part about saving earlier and more for retirement than

did I.

But listen up now. Just because I am not who you knew or want me now

to be does not mean I am not someone. When we start to treat each

other as people we love up to a point, and then we begin to treat

the bodies of people we loved as empty shells because they have

grown old, or have a disease which has changed their personalities,

their attitudes toward you, and how they behave all parties are in

trouble.

You are in trouble because you have prematurely buried your parent,

child or friend. I am in trouble because you have prematurely buried

me. In my place you see someone who can't control their bowels, has

taken up all your free time and more with irrational requests and

behaviors, eliminated your sex life with your spouse, caused you to

become depressed, driven you to drink more and take more pills, and

the list of how you are different as a results of being a care giver

goes on and on and on.

Why won't you be a best friend to me? Why won't you respect me as

your relative, your friend, a person? Why do you read poems that

cause you to cry because they are so sweet and touching, instead of

reading about how to improve your relationship behaviors and better

understand me? There is no greater potential for the discovery of a

silver lining that comes with this disease than comes with any of

life's other challenges, nor day to day living for that matter.

We all have an opportunity to better understand and appreciate each

other and ourselves, up to a point. I would prefer I had the

opportunity without having to deal with the symptoms of Alzheimer's

disease. But I do not have that choice, and neither do my

caregivers.

My point is let's push ourselves and each other to try harder, to

try different, to try longer before we start to read greeting cards

to each other which help one party feel good by ignoring the real

plight of the other person and pretending all is well with them and

we are the only ones with issues and problems?

We can escape the reality for a few moments by sharing a poem... and

then what? Once we have released some pent up emotional pressure

with our tears, haven't we also set ourselves up for more

disappointment, more alienation, more frustration, more anger?

Better to stay centered in what is, than use what we wish it were as

a legitimate excuse to cry.