Safety or . . .

I just got back from elder-sitting for six hours. I was there a couple of evenings ago as well. It occurs to me the humiliation and anger an elder feels when someone else has to tell him or her what can and can not be done. To b told you are moving around to much. . . that more rest is needed because you are short of breath . . . or you need help going to the toilet. I don’t know about you, but I’d resent it.

It doesn’t matter that you Need a monitor. She is there and that is enough. Everything coming out of her mouth might fuel anger and hate even more. Even if some part of you knows it is necessary. It infantilizes an adult who has lived independently for the balance of his life. His wife is as confused as he, more so. But they are of one breath now. He eats half a sandwich, she the other. But her mind is going, she continues to recover from seven strokes.

He tries to sneak out the door, rolling the wheelchair in front of him, touching his finger to his lips toward his wife. As if I wouldn’t see him. He wants to go to the front desk – one floor and a lot of walking away – to get an envelope. Something it would take at least an hour to do on his own, with me it is ten minutes. But he would have had his freedom for a time.

What is more important, moments of freedom or safety? Someone to watch over him, even though he doesn’t know her well? Someone who needs to try to calm him, to make sure he doesn’t hurt himself? I’d choose freedom every time. I already do. So I know I am nothing but an intrusion. He is a man with a wife and a rich and full life at one time. And now it’s over, with some woman telling him to “behave” as if he were a recalcitrant child. My rage would be unspeakable . . . is his?

A Teddy’s Story

Once there was a little brown bear,
given by a little girl’s mother
who had never had a bear
or any other toy in her childhood.

Teddy (not imaginative, just precise)
was precious beyond all else.
From babyhood to almost adulthood
Teddy slept with the girl every night.
He knew every secret, the deepest,
darkest, most remote,
close to the surface or
tucked so deep within, the girl
couldn’t even know them for herself.

His fur had been pulled in places
chewed on as the girl ruminated,
like a boy in the country
might chew on a straw.
She’d tried the replace the fur
with green thread and stitches
close to where Teddy’s heart was.

As she got older, she knew
she’d sleep with him
until a man replaced his spot,
and worried about that comfort
being gone but would
never share all her feelings,
and certainly not all her secrets.

Then came the time her family moved
and all the girl’s toys, books, linens,
memorabilia from high school,
was gone, fallen from a moving van
into the mover’s hands
for his little girl.

But Teddy, he was so worn –
how would anyone else ever know
his life, his history,
how he kept the little girl
glued together in times of trouble,
sorrow and joy? Where did he go?
She became so upset
just thinking about it.
of all she lost
he was what mattered most.
Thinking he was in a landfill somewhere
tore her heart.

All these many years later,
she still has distant remembrances,
wishing he was still here
to listen to the stories,
hear the secrets, and
be the best friend she’d ever had.

Advanced Directive for Psychiatric Issues

In the article, “When Treatment is Traumatic” by Melody Moezzi in the Fall 2016 edition of Bp Magazine, I read something I had never considered, that of needing Advance Directives for one’s Mental Health and a detailed crisis plan. She discussed having had good hospitalizations and bad ones. And, that we can specify which mental health facilities we want to go to and vice versa.

Included with that was we have the right to specify what drugs we do not want to take and treatments we do not want . . . ones we may have had adverse reactions to in the past when physicians and psychiatrists may not have access to that information. She also speaks to vetting your own psychiatrist . . . research the person, interview others who have had that person, interview that psychiatrist before committing to sharing your deepest secrets with him or her. She reports this cuts down on the trauma hospitalization may cause.

Accordingly, I did a little research about PAD’s (Psychiatric Advance Directives) and some of the present problems within the system now. One good instruction manual for the development of your PAD is at:

It answers the questions you may have about how to go through the process of specifying your needs and writing them down. It explains the legal process and what your rights are.

As Duff Wilson says in the December 11, 2009 issue of the NY Times, this can help protect poor children who are presently likelier to receive powerful Antipsychotics than treatment and therapy because the latter are more expensive. In fact, poor children are 4 times more likely to receive powerful anti-psychotics than middle-class children who have private insurance. Medicaid may push for this but just remember – you have the right to push right back. An educated consumer has the right to Appeal and make informed choices even when on Medicaid. These drugs have long-standing to permanent metabolic changes and drastic weight gain. It stands to reason the same factors may apply to adult psychiatric patients.

The David L. Bazelon Center also speaks to this issue. Patients may be restrained, seclusion, forced hospitalization or receive forced treatment and medications if they do not have a standing PAD. We need to have copies of our PADs at our Pediatrician or Primary Physician and/or Psychiatrist as well as with our Mental Illness Medical Advocate. Many times earlier intervention can eliminate the need for such serious and draconian measures. Many times our Primary Care Physician administers Psychiatric drugs because there is too long a wait for a Psychiatrist and treatment is necessary. However, they rarely have the training to make such decisions and so may administer the wrong drugs because the family or physician feels it is necessary or that they don’t have other options.

David L. Bazelon Center http://www.bazelon.org/Where-We-Stand/Self-Determination/Forced-Treatment.aspx
 
Another factor for consideration is because family counseling or psychiatrist counseling sessions are more expensive, Medicaid may resist paying for them with poor patients. In other words, we are discriminated against, something that should come as no surprise to most of us.

A couple of final things:

UPENN Collaborative on Community Involvement
A Guidebook for Creating a Mental Health Advance Plan or Psychiatric Advance Directive
http://www.tucollaborative.org/pdfs/Toolkits_Monographs_Guidebooks/self_determination_psychiatric_advanced_directives_self_directed_care/ASAP_Guidebook.pdf

This organization provides a 32 page document covering all aspects of preparing for your mental illness needs in the future but in easy to understand terms. Not all of which may be directly relavent to you personally. Neverthless, it is a useful reference to draw from as you create the document that suits your exact needs. Just remember to periodically review your PAD because your needs may change over time.

There is also the DBSA Wellness Toolbox – “[A] Collection of self-help and wellness tools to help you communicate better with your doctor, keep track of your symptoms and moods, record the progress you’re making and help you reach recovery.

http://www.dbsalliance.org/site/PageServer?pagename=empower_toolbox

I have a Living Will but you can bet I’ll be drawing up a PAD ASAP.

 
 

What’s the Answer?

I’m a Christian, no doubt about it.
Or, shall I say I believe in the Trinity
well . . . the Jesus rising to Heaven
sometimes rocks my boat.
He was definitely God inspired
although I wonder, as a child,
with brothers to contend with
how could he pass through this life
without Sin?

I can’t get through a day it seems
without a damaging thought flitting
through my mind . . .
As someone with Bipolar disease,
Depression and a life of poverty,
it’s hard to rise myself to the standards
set by God Almighty.

And I wonder, was the same God
who was so angry at the Jews
when they swerved from the path,
the same God of the New Testament
who says all I need to do is repent?

So many people in the World
have never heard of God as Christians
claim God – how can they be not saved?
Those who worship loving Gods
and live in kind and compassionate ways –
how can they not be saved?

How can all the people who are traumatized
by life – who are victims in war,
who suffer in all manner of pain,
who love their children and family
and respect with kindness their elders
and those who cross their paths
not be saved?

I am so very tired of the struggle
of men who rage against other religions.
Of those who act in violence and cruelty
against others who live by different principles.
We have been doing so since time immemorial
in the name of our religions and governments.

Wouldn’t it be wonderful if God –
for I have to believe that God sent many
messengers to nations around the World –
filled the Hearts of everyone,
particularly those who carry on Wars,
with Loving Kindness,
filled to the brim, bursting out their
arms and legs and minds . . .
so they could never again imagine
raising a weapon or hand against another?

Yes, Yes, free choice needs to be considered.
But I’d love to see what such a World
would look like, would have the chance to be.
Where saving the World and each other
became the most important principle
by which to live?
I wonder . . .

Tattoo me?

I’ve always had a hard time understanding tattoos. Why would a constantly changing person tattoo something that permanently sets them at a particular time a place? I’m not writing this to insult people who wear them. I guess I am set in my ways. I’ve thought about getting one but what do I have to say? My ideas are transient, my children are grown and live far away, I don’t like to be held down to things that supposedly define me. Some of the artwork is truly beautiful, especially the colored ones, but it’s still not me, besides I have enough pain in my life.

When I was in high school, in the town I lived in, there was an old, big chested woman who everyone said had a tattoo of a ship on her chest. Everyone joked that the ship was sinking. That stuck in my mind. I thought about all those tattoos that got stretched when people gained weight, or became wrinkled when the opposite occurred. I thought about lines blurring into others and everything became a blob. And I thought about tattoos that no longer fit, or weren’t politically correct, and the scarring which was painful when removing tattoos that no longer fit into their lives.

Needless to say, I might be a spineless, too flexible person, but I have a hard ime wrapping my mind around tattoos.

Impermanence

A book lies closed, it’s spine
and cardboard covers holding pages secure;
but a page is open, graced by the light
to be perused and hopefully cherished.
But fragile – too close to destruction
by the elements – fire, water, air . . .

How different when sheepskin held
precious words inked on by scribes
who toiled hours upon days
for a finished product that lasted
centuries – even then its words
could be scraped off for rewriting.

But the Egyptians, Jews, and Greeks
wrote upon carved rocks,
polished smooth and etched –
so many millennia later
we can still discern their meaning.

Turks and Mongols declared their
feelings and thoughts on stones, boulders
carved into mountain tops for the Eternal Being
to see – freely witnessing for any and all
who chose to pass their way.

Even our forefathers knew
to carve words into monuments
names onto stone
erect and solid for generations
to see and understand.

So many voices now clamoring
to be heard – tumultuous, tempestuous,
lost in the vastness of the system
meant to carry them to be viewed,
to be voiced . . .

Are our words so temporary now –
as fragile as the paper printed upon
or coded to be thrown across
the world wide internet –
which hackers could erase
by the touch of a button
or the crash of systems.

And on the Mongol steppes the stones lie
more than a millennia old, two even,
the caves of the Anasazi and Inca temples
holding images with stories behind them
while a ripped, wrinkled, tattered page
lonely flies down the street . . .

Trump’s 2017 Speech to Congress – Reaction

As I read President Donald Trump’s 2017 speech to Congress this morning and then read the Fact Checker on same, I have to think we must be morons if we don’t check the facts. Everyone is prone to exaggeration – stories told get longer and more detailed with higher impressionistic pictures created at family and friend get-togethers. But to start out lying or stretching the boundaries of incredulity make data terribly confusing to the American.

We must become informed citizens with this President. He speaks with a forked tongue and has an overwhelming ego to uphold. He does not know the system in which he now must operate, and until he does, he doesn’t know what he can push through and where he can’t. What is he going to do with increased military spending? If we are going to operate more within our borders, why beef up the military when there is so much more needed in other areas. I read a story yesterday about a family where the mother is now separated by border control from her husband and children. That’s heart-breaking.

I read the lip service to raising the standards of the middle-class. That is all well and good but so little is said regarding the poor and disabled. Where will they benefit in the new system? Not enough services are available now and those that are, are often unable to meet the demand. Nor are these people necessarily able to find those services. People who are limited physically, emotionally and/or mentally may not know how to reach out, how to fill out the mountain of paperwork they need to complete, may not have advocates to help them, may have language differences impeding them, and may not be able to reach those services. And in filling out the paperwork, it is often a matter of How you say something, not that it is said.

I am seeing a lot of hate-mongering which has been generated since the Trump campaign started. Perhaps that’s the real reason the military needs to be beefed up. And it’s not us vs. the outsiders, it’s us vs. us. On Capitol Hill and on the streets. Women’s Rights, Immigrant Right’s, Gay Rights, Transgender Rights are all being weakened. Any strides made under Obama and earlier are being slashed.

Frankly, the potentiality of Trumps’s New Order scares the crap out of me. I see racism, sexism, and fervent, militant religiosity blowing up. People lurking under the woodwork are now out in the open where they are readily apparent.

I’d like to know how to make a difference. I’ve tried and been stymied. Does working the system get you anywhere anymore? I’m, scared, frustrated, and lock-chained by my circumstances. How can I reach beyond and help?