Continuing Education—November 2011
It’s Only Alzheimer’s, Not the Bloody Plague!
By Stan Goldberg
www.stangoldbergwriter.com
Posted in Aging and Illness and reprinted with permission of the author
A friend recently said to me, “When my friends learned I had Alzheimer’s, many looked at me as if I
had some kind of contagious disease. Then, they just stopped calling or coming around. Don’t they
know it isn’t the bloody plague?”
What It’s Not
I’ve spent eight years with people who were in various stages of Alzheimer’s and other forms of
dementia. Although my hospice patients in San Francisco were all in the later stages, I heard painful
stories from their families of how people reacted to them when they still could function with some
help.From others who are in the earlier stages, I heard identical stories involving relatives, long-time
friends, and close colleagues who drifted away or interacted with them as if they :
-Stepped back into their childhood
-Possessed the mind of a developmentally delayed child.
-Or became psychotic
None of these are true, yet as a society, we treat those with dementia as if at least one of these
misconceptions was the gospel.
The Harm We Cause
When we act out of ignorance, we may unintentionally cause immense harm to those who are
struggling with the disease. One person with dementia, who held a Ph.D. in chemistry, no longer
would order a meal from a fast-food chain because, according to him, “The server made me feel like
a moron” when he couldn’t quickly decide what to order from a board menu containing more than 50
items, with a multitude of combinations.
Changing Identities
As memories are lost and the ability to manage those that remain becomes a struggle, the identities of
people with dementia change. We all view ourselves—our identity—by the roles we play, the
activities we enjoy, the affiliations we have, the values that structure our lives, our abilities, and
relationships. Imagine how your life would be transformed if significant parts of your identify
disappeared–sometimes quickly, at other times slowly, and maybe the worse, stealthily.
And it’s not only self-perceptions that create identities, but also how others perceive us.
Imagine what it must have been like for that chemist who spent 8 years in graduate school and was
involved in the development of life-saving drugs to be afraid of ordering a hamburger from someone
who possibly never graduated high school.
Pulling the Sharp Points Close
Life is full of choices. We can run away from those with the disease, either out of ignorance or fear
of what we might eventually become, or we can choose to put ourselves in the place of someone with
dementia. Tibetans have a saying that if you want to get over the fears in your life–the sharp points–
bring them closer, rather than running away.
But, eventually, you won’t be able to run away from Alzheimer’s or other forms of dementia.
Statistics say that many of you reading this article will develop dementia. If you’re 60, you have a
1% chance of developing some form of dementia and your risk increases every year until you reach
85 when it levels off to 35%. If you have a parent with early onset Alzheimer’s your chances of
developing the disease dramatically increase. And if you don’t know someone who is close to you
with Alzheimer’s or other forms of dementia, trust me, you will.
How to Help
In many ways, having dementia it’s like being dropped into a strange country with customs and a
language you don’t understand. And just as you’re learning how to maneuver your way, something
changes and you have to start all over again. And nobody is there to provide you with a GPS for
getting out.
So how would you react if was your spouse, your parent or a friend who had dementia?
Instead of providing lists of “shouldisms” and going into the specifics of Alzheimer’s and dementia
(see the links above), I thought I’d just suggest some things to consider the next time you interact
with a person who has or you suspect has dementia.
Be Patient. It may take longer to process information
Memories are not willingly lost. There will be things someone with dementia won’t
remember, both recent and distant. Not remembering has nothing to do with not trying.
Accept changes. Dementia is progressive. The person’s abilities today may be different
tomorrow.
Offer help to the person. There are few things more frightening then being disorientated,
such as being a few blocks away from your house and not knowing how to get home. When you see
someone who is obviously confused, don’t be afraid to offer help. The worse that happens is they say
“No thank you.” The best that happens is you’ll provide unimaginable comfort to another human
being.
Offer Help to the Caregiver. Unless someone has been a long-term caregiver, they have no
idea of the effort it takes. Offer to help. Anything will be appreciated. Knowing that people care is a
blessing to the person receiving the offer, and as my mother would say a “mitzvah” to the person
making the offer.
You live in different worlds. As with any chronic or terminal disease, almost everything is
seen through the perceptual filters of the disease, from noises to the frustrated looks of fast food
cashiers.
Be Compassionate. Imagine the person with dementia is your parent who you love dearly.
How would you want other people to interact with him or her and even more importantly, what
would you want them to feel after the interaction?
Leave Them With the Best You Have to Offer
Yes, the person you once knew as gregarious will eventually withdraw inward to the point where you
may not be able to connect with them. But that may be years away. Enjoy their presence while you
still can and offer them the support and compassion you would want if it was you who were slowly
moving on a one-way road to a strange, structureless place.
We don’t know what the person with dementia takes with them to that place we’re not allowed to
enter. But doesn’t it make sense to give them memories that are pleasant rather than ones that aren’t?
Continuing Education—November 2011
Of Course You Remember (poem)
By Stan Goldberg
www.stangoldbergwriter.com
reprinted with permission of the author
Of course you remember she says.
It was your sixtieth, and
we came from across the country
to express our love.
I don’t remember, I say.
But you do remember she says.
We ordered your favorite Indian foods
sang songs of the 60’s
and danced to Eleanor Rigby.
I don’t remember, I say.
But you must remember, she says.
We drank Woodford Reserve
and reminisced about motorcycle days
and drugged pleasured nights.
I don’t remember I say.
But surely you remember, she says.
we spoke of memories
some new and others old
that made you, you.
They all look at me as if
I’m playing a game
designed to torture
worse than Abu Ghraib
And with resignation I say
yes, Yes, YES! I DO REMEMBER!!
Punctuating each word hoping
the melody hides the truth.
And finally people relax
wanting to believe
I had too much to drink
or was too lazy to think.
But I don’t remember.
I don’t remember the wonders
I’m told defined my life
and changed others
who thanked me for entering theirs.
My friends repeatedly tell me
of events whose weight,
once significant
now have shrunk to pebble-size,
Evaporating into wisps
that slip from my mind
as if they were breaths
escaping through a gossamer web
I’m told I cried
When my children were born
both times,
and I knowingly nod my head
But only remember my tears
I’m told I exchanged whispers with Martin
Luther King
as citizens of Montgomery
hid in shadows
holding gray cold objects.
But I only remember the smell of
night blooming jasmine.
I’m told I sent students
on lifelong journeys
and taught children
who couldn’t speak to speak.
But I see only a few nameless faces.
I’m told I eased
the lives of many
with compassion
as they prepared to die.
But I only remember torn pieces of
faded pictures.
All bits of yesterday
the most important
slowly descending without control
as if vacuumed from my mind,
On the way to a doorless place
I don’t know how to enter,
Or if I could, what I’d find,
Or once found what I’d do
And the repetitive painful questions
keep coming from those
desperately hoping
That the me I was is still within.
I see their fear painfully grow
as if it isn’t me they’re seeing
but a stranger they now fear.
So, with a smile I again say,
Of course I remember.
They relax comforted in believing
it was just a fleeting senior moment.
Like ones they have and laugh at
before their own doubts begin.
And I wonder how often
I’ll need to repeat this painful drama.
Smiling and nodding
because they don’t understand that
I can’t remember.
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