however many you have

December 2, 2012 at 2:51 am (how does it feel to die, living with dying, pain, pain medication, the dr. says) (, , , , )

last week was difficult at best.  tuesday i went to see the dr. and he recommended i go in the  hospital. no, i don’t think i can do that i say.  moving on, he tells me we can do all the tests and go from there. i think i can do that.  turns out i passed a kidney stone.  have to say when he offered me pain relief i thought it best to take it even though i thought i could make it without them.  i could not walk without his strong arm to hold me, and as much as i love being on his arm, the next day i think i can manage on my own.  there is something about my creatinine level creeping higher so …… and the liver is becoming cirrhotic. i think i can say that my disease has progressed yet not at the speed expected.

sitting in one of our favorite restaurants, talking about our impending cruise, is say -i think i can do five more years.  seriously, don’t you think i might do it?

he reaches across the table, looks so lovingly and says- i believe you can. maybe you can do 20.

my heart aches when he says things like this, so i respond- i will give you all i have left. however long that is.

he smiles and says- however many you have he will take them. then he says “i don’t know if i have 20 left to give you”

however many you have… i will take them.

Permalink 6 Comments

pain in the shadows

July 20, 2012 at 4:13 am (bravery, coping, death, dying, feelings and thoughts, how does it feel to die, pain medication) (, , , , )

if he arrives during the day, most often he is relegated to the shadows.  smiles to cover his unexpected arrival.  so many subtleties to redirect the obvious.  a small smile, little extras to take care of and before you know it not only are they fooled but somehow you have even fooled yourself. or not, maybe you know that in the shadows and late hours he will be back for you.

as a young girl many joked that such a small girl could run and dance before crawling. actually crawling never appealed to me. the scrubbing of knees, dirt and so less freeing as the movement on tiptoe.  yes during this period of parents insisting that pre-toddlers wear these white hard shoes meant to make feet strong and straight.  my feet became strong, straight and they became toes shoes.  running and dancing on toes quickly broke them down.  making them the perfect dance shoes.

marie would lose her temper and pain came for me.  he was kind and apologetic.  it isn’t your fault he would say, let’s dance and soon you will for get why i am here and only trust that i am here and we can do something beautiful out of this ugliness. so the years went by and one marriage brings a new kind of pain, one  not known to even exist before.  his hand reaches for mine. can you run through the basics? what about a little soft shoe?  down by the sea, by the beautiful sea,  you and me, you and me, oh how happy we’ll be!  he has been my friend for many years, more than any other friend.  in the army, broken  legs, broken arms, broken back…. he was there.  he is tall, dark and quit eloquent.

so this morning it is 4:45a.m. and he is here.  he embraces me, he whispers in my ear, would i like to send him away?  we talk about that. what will that mean to send him away? there have been times his   outline is vague and though i know he is there waiting there are times i can not let him have a place.  the wee hours of the morning are the best time to see each other. those are the times he reaches for me. his arm slips around my  shoulder or waist. my head can rest on his shoulder.

it is time to go to bed and there is no room for you.  i will reach out to my husband, put my arms around him. he will slip his arm around me and whisper of our love.  you will have no place in our bed.

someday i will leave you, we will never dance again, my last dance will be with the man i love and the man who has put his all too real arms around me and we will rock a bit and dance a bit and i will seek my ease from him. you have been a part of my life too long.

though I know i have many years of pain ahead and want to keep you as the companion you have long been we will be saying adieu for ever before we know it.

 

Permalink 2 Comments

Aimee Copeland Breaks And Pleads For Painkillers

June 28, 2012 at 3:07 pm (aimee copeland, bravery, christina symanski, coping, death with dignity, meditation and pain, pain medication, Uncategorized) (, , , , )

for weeks now aimee copeland has been in the news.  about a week ago the headline for the Huffington Post stated that Aimee had  now asked for the morphine doctors had been offering her for the pain she was experiencing.  here is a little about her if you  have not heard before now. though her father has not characterized her decision as “pleading” that is how the headline ran.

It was nearly seven weeks ago that Copeland sustained a cut on her calf during a fall from a homemade zip line over a west Georgia river. She was diagnosed with necrotizing fasciitis, an infection from a rare flesh-eating bacteria. Doctors were forced to amputate her left leg, right foot and hands. The Georgia student, 24, originally refused pain medications due in part to her personal convictions and graduate-school background in holistic pain management techniques. Her preferred method of dealing with the pain was meditation, but that has done little to assuage the sting of skin grafts and muscle flaps that were necessary

“I am blessed to be able to have a challenge that not many others get to have,” Copeland’s father wrote, quoting Aimee. “I am blessed to have the capacity to share my experience with others and have a chance to improve the quality of someone else’s life. I’m blessed to be different.”

when reading this short article my mind wandered back to the young woman who through an accident of adventure had become a quadriplegic. this young woman had been sort of the poster girl for the disabled.  she was an artist, gave speeches, was active in the christopher reeve organization and seemed to be moving on with her life “bravely” as some might say.  tragically she ended her life.  she decided her life was not worth living the way it was.  she was in pain and yet it would seem the psychic pain was perhaps the breaker.  the organizations for the right to die with dignity used this as an example of why we need to change our laws.  the disabled were outraged that she was used in this way.  there is such difference between  someone who is terminally ill, has no chance of recovery, and someone who is disabled. this does not in my opinion make the case for death with dignity.  it was her  dignity at issue for her, however, was her inability to accept dignity in a different form the heart of the problem?

it is my deepest wish that Aimee is allowed to be weak without making headlines.  if asking for pain medication is a weakness at all.  meditation is a tool to be used and as corny as it sounds it is just one tool in the tool box.  her family is suffering as is this young woman. she made a decision out of youthful exuberance and is now paying a heavy price.  my heart goes out to her and if i could say anything to her it would be to embrace her tears as well as her joys.  sometimes bravery is crying and accepting the pain medication.

Permalink 3 Comments

the rights of the dying, do we really need it spelled out for us?

May 27, 2012 at 3:34 pm (death, death with dignity, defibrillator, doctors, dying, euthanasia, family, feelings and thoughts, how does it feel to die, meditation and pain, pain medication, religion and death, rights of the dying, truth, Uncategorized) (, , , , , , , , , , , )

the following is from another source and is sited at the end of the article.  my question after reading this is do we really need a book that tells us how we want to be treated and that in an ideal world this is how we would all be treated?  these are just some of my personal thoughts on the subject.  we all have some basic human rights and we know that not all in this world enjoy those rights for many reasons.  some it is political, religion or even on the smaller scale it is the world we as a family or community have created.  in other’s there are these rights and more, the luxury of being able to afford such rights.

my opinion is just that an opinion. the book itself may be of great value to some, just not me.  please make up your own mind if this book is for you.  my goal here is just to continue the discussion and not to critique this book in any way.

The Rights of the Dying

The right to be treated as a living human being

* we are born are we not with the right to be treated as a living human being? do this imply we must remind people we are living? in some cases it is easy  for our loved ones to stop asking our opinion about things, usually due to kindness and not wanting us to use our energy on the mundane.  most of us want the mundane. we want to know that we are still contributing on some scale no matter how small.  it is a blessing to me that my friends still seek my advice or opinion. sometimes they just want an ear and that is part of being a friend or sister or spouse.  would you check our account balance or has that check cleared? can you text since i don’t text? can you help? even in the smallest way is just part of being a living human being.

The right to maintain a sense of hopefulness, however changing its focus may be.

*in my opinion no one can take away your hope!! even if it is the smallest hope for the day. this is something that is personal to each of us. to say we can lose that right is ludicrous.  did the prisoners of the camps have the right to hope? of course they did. not even the Nazis and the extermination could take away their hope if they decided to make that part of who they were.  no doctor can change if i decide to hope, and if that hope is not that i live but that i die with ease that is my right too.  do i need a book to tell me that i have this right?

The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

*this one is a bit more tricky. by cared for do they intend that medical staff be required to stay hopeful?  do they have to be hopeful for me to receive good care?  if we can focus on medical staff first, it is certainly desirable for my dr. to remain hopeful and to let that change. don’t they also have to be able to be honest with their patient. i for one want to know the real deal and not some fairy tale.  not that long ago women weren’t always told the truth and in fact dr’s could make that decision for the entire family..  sometimes husbands were told and then it was up to them to make the final decision of what the little woman would be told.  my dr. does not have to hope that there will be a miracle for me.  i can hope for what i choose.  as a former nurse it makes sense that an attitude of supporting the patient in what they hoped for would be requisite.  it is of course what we would hope for in family that cares for us.  let’s not mistake what we would like and what may not be an option. if you are being cared for by family they may not feel hopeful.  do we then say they are not adequate caretakers?

The right to express feelings and emotions about death in one’s own way.

* there are rights and there are responsibilities that go along with these rights.  do i have the right to say whatever i want without regard for the feelings of others? this isn’t just a question for someone who is dying. just because you are dying doesn’t give you the right to disregard the feelings of others.  someone who is not dying has the right to say how they feel about their life and those around you have the right to say that is not acceptable to me. if you are hurting someone else with your words how is it so special that you are dying?  the reality goes beyond this, if you were to say to your doctor i can’t take this and i am going to go home and end it all he then has to take steps to protect you.  this may not be the result you want however if you say whatever you want without thought to consequence it may not lead where you want.  telling someone they have the right without explaining the consequences seems a bit irresponsible.

The right to participate in all decisions concerning one’s care.

*this is a patients right and not just for the dying.  you may have guessed by now that it annoys me for someone to “write” a book without having some new or crucial information.  books cost money, people buy them thinking the person writing has some expertise unless it is just a personal account of events/your own life.  it does leave me wondering who is being denied this right? years ago elderly patients were not routinely being asked to participate and since they grew up in an era of the dr. knows best they often gave up this right willingly. it is sad to think this was happening, the good news is our society is making strides in rights for everyone.

The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one’s needs.

* is this a re-hash of previous rights?  were the writers being paid by the word here? again in an ideal world and we would hope this goes without saying.

The right to expect continuing medical care, even though the goals may change from “cure” to “comfort” goals.

* we have entire specialties now that focus on the comfort.  hospice is the go to for this. they also

The right to have all questions answered honestly and fully.

* we should expect this not just as a patient with a terminal illness.  if we are not getting honesty from those around us this may not be a new problem.  my hope would be that we deal with dishonest relationships before we arrive to this gate.

The right to seek spirituality.

*this doesn’t seem to be a problem now if ever. when in the hospital a chaplain came to my bedside each day.  my issue was the opposite, it was assumed that i am christian and even when i explained as kindly as possible that i am not christian he pushed to come anyway.  he was a nice man and i couldn’t bring myself, even in intensive care, to assert my right NOT to seek his prayers.  oh well, i decided it wouldn’t hurt me so no harm no foul.

The right to be free of physical pain.

* one would only hope but i am here to tell you it may be a right, however, you are going to have pain and will have to decide how you want to handle this as an individual. my choice not to take meds may not be your choice.  pain is a part of living, again this is an individual choice. toward the end many change their mind about the comfort meds can offer. some decide to keep their awareness and forgo that aide.

The right to express feelings and emotions about pain in one’s own way.

*this is just filler. this has been addressed in earlier points.

The right of children to participate in death.

* again not sure why we need to be told that our family has the right as do we to be in their loving presence at the end if that is what all concerned choose.

The right to understand the process of death.

*each death is different and dr’s can give you some information based on previous cases but keep in mind your experience may be unlike others.

The right to die.

* we have the right to die but not with dignity except in a few states.  we can refuse life-sustaining measures but in doing so we give up the right to be pain-free.  those who oppose death with dignity say we can just stop taking meds or nutrition/water. in doing so we will eventually die a long and sometimes suffering death.

The right to die in peace and dignity.

* this is a legal right in some states but not in the majority. this is a shame on our society.

The right not to die alone.

*again this is not really a right as i see it. it is our wish for those who do not want to be alone at the end.  too many do die alone and lonely. until we have a society that does something to change this, it is an ideal and not a reality.

The right to expect that the sanctity of the body will be respected after death.

*if forced to call 911 as you are not under hospice care the 911 team must do everything possible to restore you to life.  that is not being respected as i see it.  we can expect it and need to understand it is a possibility that it won’t happen.  just remember that your family is going to do all they can to ensure this.
“The Needs of the Dying” by David Kessler
 

 

Permalink 2 Comments

%d bloggers like this: