it does not come naturally

February 23, 2014 at 10:29 am (death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, life is random, living with dying, the dr. says)

i so wish that writing about myself came naturally. it would certainly make writing this blog so much easier.  it isn’t just writing though, i don’t particularly like talking about myself either. i like listening. that is what made me a good nurse and therapist.  there are times i try too hard to be social and that can be awkward. i end up feeling like a bore.  i am happy to sit quietly for hours.  sometimes i realize that this attracts people who love to talk and some like very much to talk about themselves.

understanding where a behavior originates can be helpful when wanting to change that behavior or for me to simply explain to myself or other’s why i am this way.  when seeing patients it was usually clear if they needed to know the origin in order to make changes.  psychoanalysis never appealed to me though.  to listen for years to the same conversation with the hope that eventually the patient would realize when, where and under what circumstances a behavior or habit started, was my idea of hell.

insight is a beautiful thing though and so i started thinking about my avoidance to say too much about myself.  the quick answer was i have always been this way and to a certain extent this is true.  my grandmother used to assure adults that when i had something to say, i would say it.  i grew up keeping quiet about things as not to upset my mother.  if she thought i was happy and asked me questions i knew it was going to be trouble.  i was a very serious child. laughter could mean her coming after me to make sure i had nothing to laugh about.

so the habit was formed. as a nurse and a therapist we do not share about our private lives.  our job was to be caring and not cared for.  this was our patients time to be heard.

i will admit that once i started writing this blog it became easier to write about myself as this is for my family and friends to have a record of this time.  to share with my grandchildren what i want them to know, when they grow up, who i was and how i coped.

after being away for a bit i am finding it hard to get back in the groove.  the trip to california was way too much and showed me what my limits are. even now i am not sure i have recovered nor am i sure i ever will.  would this change have happened regardless? my guess is it likely would have.

i have missed coming here. it was becoming more enjoyable and i looked forward to those who take time from their own busy life to listen to me.  of course my love listens to me. it took quite a bit to trust that he wanted to hear what i have to say.  he is so fascinating.   after all these years i can sit and listen to him as long as he wants.

or we can sit in quiet, just content to be in the same room with each other.  it is that way with my sister as well.  she can make me laugh til i cry, we can just sit and hang out.  my step-daughters are the same way and i can’t tell you how much this means to me.  i just started thinking of the people in my life that i have this with. my guy joe, we worked together in calif, never balked at the times i would just come to his office and say what i had to then say, ok I’m done.  i would then get up and walk away.  or i might come in and sit knowing he would start telling me stories or share information. i loved listening to joe. still do…

i have no doubt that the people who are my friends are so in spite of me and not because of me.  my family accepts me as i am and that is a gift above and beyond:)  hope i haven’t droned on too long.  you are all so kind and gracious.  i appreciate you, i love you and know i am blessed.  the whole heart thing is going as well as can be expected.  so far it is still beating.  sometimes i wonder how it does it but mostly i am just in wonder.  i have never been happier than i am right now.  life is just so good.

 

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no words of wisdom here either

November 30, 2012 at 12:10 am (bravery, death with dignity, dying, how does it feel to die, living with dying, the comeback, the dr. says, words of wisdom) (, , , , , )

today i had the opportunity to read a blog written by the brother of the comeback.  i was not surprised to see that craig is as talented as his brother shane.  what did jump out at me was his declaration that he had no words of wisdom.  some of us do feel as though the healthy community looks at us to have answers to questions we all have, in addition many of us feel as though we have to be strong for others. it is up to us to make sure that the healthy friends and family are not made to feel guilty when they are not being the kind support we need.  we are taxed with supporting them through their angst over our imminent death.

this is not like most of my blogs and i am not sure why.  reading craig’s blog made me start thinking about the reversal of support.  should someone make the sacrifice of coming by to see us? they have things to do and places to be don’t they?  our healthy friends and family can’t be expected to actually go through that uncomfortable visit when they could be doing something fun should they?  i know that we the dying make the choice to smile and be supportive or acknowledge just how selfish we can be.

no we are not selfish and neither are the ones who love us.  another friend wrote about the burden of love, the weight of it.  there are times when i wonder how my love stops himself from walking out the door and never looking back.  i do love him so it comes easy to support his need to be away from time to time.  actually he would, he says, be fine with staying here with me just in case.

tuesday i was experiencing so much pain that i went to the dr.  my dr says this would be a good time to go in the hospital. he felt this was an appropriate action.  he also knows me and said, after seeing the look on my face, we could do all the tests that day and get the results in a day or two. if i were in the hospital he felt things would move faster.  in the end we decided to go outpatient.  wednesday i was feeling a little better so we went out.  sitting across from each other, chris shares he is concerned we are not being prudent to go on a cruise.  after a moment of thought i responded…. i am going to die somewhere so why not on a cruise?  the blank look on his face is not a new one with me.  he says ok. guess i will figure it out if it happens.  my point is i don’t want to sit at home waiting for death to come.

turns out i probably passed a kidney stone and my liver is getting worse.  the good news is we are leaving next sunday for a 7 day cruise.  i will not have to be strong and wise. he will not have to be strong and wise.  we can be two sweethearts sharing an unforgettable experience.  i am feeling wiser already!

 

 

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five regrets of the dying by bronnie ware

November 25, 2012 at 9:52 pm (being remembered, bronnie ware, death with dignity, five regrets of dying, living with dying, the dr. says) (, , , , , , , )

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.

There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try to honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

2. I wish I didn’t work so hard.

This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I’d had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

4. I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice.  They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

What’s your greatest regret so far, and what will you set out to achieve or change before you die?

 

 

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final exit network, william peace i think i get it now

November 20, 2012 at 4:21 am (assisted suicide, death with dignity, frontline- the suicide plan, how does it feel to die, how to die in oregon, the dr. says) (, , , , , , , , )

william peace is a well-known activist and we have had some discussion over our difference of opinions.  after watching dr. oz i wrote about my feelings regarding the right to die with dignity movement.  i received a well thought out and informative message from william.  at the end we both felt it was important for reasonable people to sit down and have, as we had, a reasonable discussion.  what i could not agree with in the end were two main points.  first i will never agree that just because one person believes a certain way they have the right to thrust that belief on me.  for example, some believe it is a sin to take your own life. i have heard it said that only god has the right to decide who lives or dies. my question is what about those of us who do not believe in god? we do not share that certainty and i do not believe those that do believe,have the right to tell me some entity i don’t believe in is going to make this decision for me.

the second was i did not believe as william does about a slippery slope.  my understanding is if we have the right to die with dignity then somehow (i am not sure of the details) people with disabilities are at risk for being euthanized.  until seeing  Frontline-show this seemed a bit murky to me.  the show outlined once again how some states are allowing assisted suicide and others are prosecuting these cases.  the first person followed is an 80-something woman with advanced lung cancer.  she has made the decision to end her life.  the group Compassionate Choices were all set to help her.  she had purchased the medication needed and knew what she was going to take and in what combination.  her husband said he was catholic and would not do this himself but felt she had the right to die the way she wanted to.  this all was in line with my belief in the right to die with dignity.  next was the story of a woman named jana.

jana was a 50 something year old woman.  she believed she was terminally ill. in fact she was not.  she had gallbladder surgery years ago, she thought she had breast cancer, she thought she had high-blood pressure.  there were a couple of other ailments on her list.  this list was submitted to the Final Exit Network.  ostensibly the list was reviewed by a physician who approved her for assistance with her suicide.  someone from the network went over how she would make a hood, connect it to a tank of helium, slip it over her head and turn on the gas.  they would then remove the hood and the tank so people would think she had died of natural causes.  her relatives were suspicious and called the police.  from there it was discovered just how she had died.  here is the thing that shocked me, as i see this list i realize she is not terminally ill, although she had claimed to be in horrendous pain.  some say this pain whether real or not caused her life to be not worth living.  her sister testified that jana was mentally ill and did believe she was dying, she had believed this for many years.  my mind is still trying to make some sense of a dr. approving her for assisted suicide.

of course another way of looking at this is to understand how important regulations are.  if this were legal as it is in oregon and washington this kind of thing would not happen. any dr. that prescribed the fatal cocktail would be under constant scrutiny. only patients who are terminally ill would be eligible.  as long as it is illegal it will remain like back alley abortions.  when abortion is legal it is safe.  whether we agree with that choice or not is not important. a woman has the right to decide what happens to her body. too many women lost their lives and their ability to have children in the future just because one group of people wanted to tell others how to live their life.  as with the right to die, abortions are personal choices that do not infringe on the lives of others.  i understand the argument and yet i do not agree. i am concerned here about jana and how many  like her are being “helped by these groups who claim to aid/assist only those who are terminally ill.  how many jana’s have there been?

the following are taken from the websites for the afore-mentioned groups.

this is from the Final Exit Network:

Our Guiding Principles

We hold that mentally competent adults have a basic human right to end their lives under the following conditions:

  • they suffer from a fatal or irreversible illness or intractable pain,
  • they judge that their quality of life is unacceptable to them,
  • they judge that their future is hopeless.

compassionate choices is another organization developed for the same cause.

Compassion & Choices is the leading nonprofit organization committed to helping everyone have the best death possible. We offer free counseling, planning resources, referrals and guidance, and across the nation we work to protect and expand options at the end of life.

For over thirty years we have reduced people’s suffering and given them some control in their final days – even when injury or illness takes their voice. We are experts in what it takes to die well.

William Peace, i understand your concerns now.  i now ask how many people like jana has this organization assisted to leave this life too early?  any dr. could have easily evaluated her request and understood she was not a candidate for their final exit plan.  mr. peace i hope that you will continue to find the strength to fight for the jana’s of the world.

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ebbing tide

October 10, 2012 at 11:12 pm (choice, death with dignity, dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, moving forward, shackelford ponies, the dr. says) (, , , , , , , )

for a few weeks now it has been more and more obvious that this adventure is progressing.  there are some things that people can sympathize with but not having experienced them that is as far as it goes.  the constant pain is one of those things, the exhaustion is another.  when with other people i can easily be left behind.  it is so annoying that i move at a crawl, if i try to go faster i start coughing and have trouble breathing.  going faster is just not an option.  other people don’t think  about slowing down until they realize i am not there beside them. that happened today, he is taller and a great walker.  he can walk as fast as most people jog.  there we were with him almost out the restaurant door while i was still not quite in the lobby.  those moments are perfect pictures of what is happening.

as others continue to move ahead and therefore away, the days ahead are illustrated.  some days while sitting in the recliner, though my love is at my side, i am aware of feeling the life going out like the tide.  it is a gentle ebb and flow, it is the life light flowing from my being.  the tide has been a slow one but make no mistake the tide is going out.  we are going to the seashore in a couple of weeks.  my hopes are high for this trip.  my love of the ocean pulls me and it is a blessing to be able to go.  my energy level is almost non-existent yet my will is strong and i am counting on this will to get me there and to afford me the joy i believe awaits.

in the past i have been able to see myself at the next event or holiday. now things are a bit foggier.  the time to make some choices is closer.  of this i am sure and feel no doubt.  i will not let my husband suffer more than i feel i can bear.  my family is my greatest love and i have a great life.  when the time comes  to go i will pack lightly and will not worry about security checks not allowing more than 3 oz of fluid!

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it is what it is and it is good

October 6, 2012 at 3:39 am (death, death with dignity, dying, gratitude, how does it feel to die, living with dying) (, , , , )

while searching the internet i came upon this post, unfortunately he did pass on and yet he left us all these words.  sometimes words are all we have, then we don’t even have them….

If I have eight months to live, there is a lot of fun to be had. Once I am too sick or tired, I can watch movies, read books and have friends over. When I become too weak for that, I can enjoy the peace of our sweet home and the hugs of my wife. Not a bad way to spend the rest of my life.

My mantra of “it is what it is” means more to me now than ever. Regretting anything left undone would be a waste of time and energy. I will enjoy what is left.  LEE LIPSENTHAL, M.D

just this afternoon my love and i were discussing this topic.  he had asked me how i was and my reply was the standard “fine.”  he looked at me and said “you are a lot of things but you are not fine.”  at the time i was almost lying in my recliner. it was a hard day so we were here just hanging and talking.  lots of times when i am feeling pain it helps to think of all the comforts in my life and how happy i am.  not that it eliminates the pain completely but it really helps me.  one of the great things about us is we really get each other.  that is one of the best gifts we can receive.

when i reply that i  may not be fine in the literal sense yet i am fine with my life.  what better place to die than here?  who better to have at my side during this adventure?  i am sad and happy all at once that he will not be with me on my next adventure.  we will have to do the hardest thing two people in love ever have to do, we will have to let go.  we have held each others hands for 20 yrs.  it has been a good 20 yrs.  life is good.

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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.

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time magazine and how to die

June 10, 2012 at 3:29 am (death with dignity, doctors, dr. peter goodwin, dying, end stage, joe klein, living will, rights of the dying, time magazine and how to die, Uncategorized) (, , , , , , , , , , , )

Dr. Peter Goodwin was an activist and used the law he helped to pass in his own death.  Goodwin gave lectures and interviews as long as he was able about the  importance of advance directives at the end of life as well as open and frank  discussion with loved ones. He wanted the end of life to be as gentle as  possible and within the patient’s control. He was also a big advocate of  allowing dying people to receive hospice care early, rather than letting doctors  continually try to cure them. “Physicians are taught to treat, and they often go  on treating and treating and treating,” he said. “It’s very, very difficult  because they have so much in their armamentarium — so many new ways of treating  cancer, so many new ways of treating heart disease — it’s very difficult for  physicians to give up.”
Read more: http://healthland.time.com/2012/03/14/peter-goodwin-the-dying-doctors-last-interview/#ixzz1xGEBQm11

a man named joe klein wrote an article describing the journey of his parents deaths.  in one part he discusses the hospital his father was in and how it was such different experience since the drs are not fee based.  as goodwin mentions in his interview and article, there is a push for drs under fee based practices to do tests that are not really of benefit except to make people feel like “more” is being done.  at some point there is no more to be done.  drs at the hospital in PA told him his father was in kidney failure and even if they could pull him through this time it would only be a matter of weeks before he would be in the same situation and there would not be anything to do for him.  it was left to them to make a decision of how they wanted to move forward.  standard procedure requires patients or families to decide whether they want a “do not resuscitate” order or not. 

a so-called reporter alex jones who rants and raves about the article does his best to mislead the audience.  after just minutes of watching this rush limbaugh want to be, it was clear how uninformed he truly is. what makes me sad is to think of the people who will see him and take his word rather than investigate or read the article.  it is merely a tirade on “socialized” medicine.  which of course we already have so ????

more nonsense  can be found in online sites that misrepresent themselves such as the health ranger.  this is their lead in:  The Health Ranger discusses the new TIME Magazine issue entitled, “How to Die!” which promotes death panels, killing the elderly to save money (and earn bonuses!).

mr. klein observes that the drs who were not being paid to do more procedures and consult with yet another dr without asking the family. the same family that will be paying for all that consulting.  the level of candor, sanity, and humanity from these drs he dealt with was stunningly high. 

this is something some will not benefit from. the drs will order more tests and more specialists until the last breath is taken or it is too late to preserve the patients dignity.  one of my many blessings has been to have a dr who puts the individual patient and their desire before anything else.  he is honest and candid, my trust in him has been earned.  it would be hope for all terminally ill patients to have a doctor like mine.  he understands who i am and how i want to die.  he also knows how i want to live. 

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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
 

 

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christina symanski, whitney houston, how to die in oregon, the comeback, and so much more

February 17, 2012 at 12:41 am (assisted suicide, choice, christina symanski, death with dignity, how does it feel to die, how to die in oregon, the comeback, Uncategorized) (, , , , , , , , , , , , )

let me just warn you that I am about to go on a rant, like non you have experienced here before. so you have been warned.  you know that I have very definite views on most issues so this will come as no surprise.  there are some constraints though and it is out of love for you,  there are some things I do not want you to question after I am gone. many times I have said ask me what you want now while I can answer and have those conversations if we need to.  in “the comeback” by shane hodge, shane takes the time to have these conversations with his mother and it left him in a good place.  it left him with pleasant memories and gave his mother the chance to share what we as parents hope to pass on to our children and loved ones.  some participate on a larger scale as in the documentary “How To Die in Oregon.”  this is my outlet for that desire to be understood.  most of my life it has been to my confusion and at times amusement for people to say who i am.  very sure of their interpretation people will say I am quiet while others think that is far from accurate, some think I am serious, others not so much.  I have been seen as someone who observes and analyses while others not knowing my profession find me the least judgemental person they have ever met.  does anyone ever truly know us?  do people simply make up their mind who we are and then make our behavior fit that mold as a detective decides someones guilt and then makes the evidence support that?  it is my observation people tend to want us to be who they think we are and do not want to be confused with the truth.  I can tell who I truly am and those that know me will say “oh no that is not true at all” as though they know me so much better than I know myself. 

here is a hint about who I am,  ah so here is the rub … see I was about to write about something that happened when I was young and would have made an excellent example of how I chose not to judge others.  it is  an incident that few know about and it is not something I would want my family to read here for the first time.  some know about it and hopefully they understand how it defined my life as a turning point and aided me in deciding how important my choice to look at things from all points of view has been.  it shocks me that I am struggling with my feelings now to understand how we have come to this horror story (Christie) and still choose not to have a responsible conversation about the right to die with dignity. this is where the rant begins, you have been warned, look away if you need to, it is about to get ugly.

let’s start with how we as a society feel it is our decision who dies and under what conditions.  who decides what is “life worth living?”  is it not our personal right? how about the constitution ???? life, liberty and the pursuit of happiness.  if my liberty is the liberty to end my life what are politicians doing trying to decide this for me?  and we are off!!! politicians!!!  mostly republicans and christians, these people are fine people, it is not my intent to label all republicans and christians.  please be sure to read this part over if you need to. NOT MY INTENT TO LABEL ALL REPUBLICANS AND CHRISTIANS!!!!  it is my intent to point out some theories that I personally find difficult to understand.  some people want to abolish the social programs that assist our poor, they also want to do away with birth control??? so have children you can’t afford but don’t ask for assistance? do I have that right?  say “get a job” really?  those “job makers” don’t seem to be making enough jobs and with the growing population that is going to be a bigger issue in years to come.  also our truly impoverished are children, that’s right, children. gingrich has the fix for that though, just put those poor kids to work! that’s right forget about child labor laws, go back a few years when children were sold in to what was essentially slavery. sweat shops anyone? guess that would give the break to those job makers that they need. no need to pay children living wages.  more women can die in childbirth so that would help with population control I guess, in the end it really is a win- win for the very rich.  however, they just scream gay marriage a few times and people don’t really hear what else is being said.  some say they want LESS GOVERNMENT, then they want the government to say who can get married, there is also the desire for the government to decide if a woman can have control over her own body or do we go back in time to men telling us what to do and say? will it stop there or will we be protected from big decisions like having the vote? owning property? what else is the government ready to decide for us?  oh yes they want to tell us whether or not our life is worth living.  silly me! why should I have the right to die with dignity??? there must be some reason that other’s need to make that choice for me. of course I may not be able to decide without being talked into it by well-meaning family members.  they are standing by the bedside ready for me to make my exit. it is only fair to them and so I must do as they want since I am weak-minded and do what others want me to do.  this is a decision I can not make on my own, and my family can’t be trusted, so gratefully the government is here to make that decision for me and every other human who thinks and wants to be in control of their body.  no I am not worthy of a dignified exit from this life.  the government wants me to suffer whatever indignity I must to satisfy those who don’t know me and don’t know what my life is like. 

the argument of people might end their life out of concern for their family or caregiver is beyond lame to me.  first I want to say so what if I choose to think of them? is it not the loving thing to do?  they suffer as well and as I have chosen to think of them and be concerned for their happiness in the past is it so surprising I might think of them now?  it is not a deciding factor, however, it is a piece of a very complicated puzzle.  people are crying over whitney houston and frankly I am confused and a little annoyed. this woman made the choice to use drugs, have children and then subject them to domestic violence and a home with an addict.  how is it more tragic for her to choose death, yes I know it is a disease and yes I think she made her choices.  life was too easy for her.  show up stoned and people feel sorry for you, if you are rich and a star.  if you are poor you are getting what you deserve.  we are cutting rehab programs for the poor so the message is:  if you are rich it is tragic, if you are poor too bad and no stars will be mourning your death. there will be no tributes on 60 minutes, oprah will not speak out about the loss to us all, you will just be one more junkie that the state had to bury.

Christine died months ago and yet we are just now seeing a story about her.  she was not rich, she was not a star, she was a girl who did a stupid thing and ended up a quadriplegic.  she is not the first and sorry to say she will not be the last.  she was a bright young woman who did not choose to continue living under her circumstances.  disability advocates say if we give someone like her the right to die with dignity( assisted suicide) it is a slippery slope and soon society will be rounding up all disabled persons and killing them.  this seems a bit far-fetched to me.  even if I agreed with having some guidelines as the person must be terminally ill there is then the argument that family will persuade the patient to take this drastic step. how that is seen to play out is not something I want to think about.  if physicians were allowed to assist it would add  another safety measure  to the process.  I do not see assisted suicide in my future as I would never put my family in that position, even if it were legal.  in “how to die in oregon” there was an experienced person to be the actual “assistant”, they stay with the patient a bit before and then give the patient the cocktail, they then let the family know they can join their loved one or not as they choose. it is quick and everyone knows what to expect.  goodbyes can be said.  the person is asked a few questions to make sure they understand what is about to happen and that it is still their choice.  this takes all the responsibility off the family. if certain members don’t want to be there it is their choice. if someone wants to spend those precious moments with the loved one they can.  christie was denied this option.  people who don’t know her decided if she wanted to end her suffering she must suffer to do so.  no dignity here, no quiet loving goodbyes and then a letting go and moving on with peace.  she had to suffer for nearly a month.  the only way for her to die was to refuse all medications, food and fluid.  can you even begin to imagine the last days, weeks of her life?  she was given no other option here,she could  live what she believed to be a tortured life or be tortured to death. a long and agonizing death and what did she do to deserve this????  since she was a quad she could not allow anyone to assist her by giving her the cocktail that would have released her from this suffering. no she would have put them in danger of being prosecuted, they would have been criminals for being merciful.  if we are not merciful then who are we?  we talk about gods mercy and wanting to live a godly life.  would that not include mercy for this suffering girl?? 

it breaks my heart and yet I know that I too may have to make some hard choices. do you think she wanted her family to suffer what they had to? they stood by her and nursed her while watching her slowly and painfully die in a most undignified manner.  that is what we are deciding not just for christie but all the christie’s, all the terminally ill who just want to leave with their dignity in tact.  for the families to of these people to suffer watching this unfold and not being able to ease the suffering of the loved one.  this is what some want to decide for all of us.  christie is not the first to endure this and she won’t be the last, there will be no headlines, no 60 minutes and no oprah mourning any of us.  we are not rich and famous.  we are just people who want to make this one last choice for ourselves.  as free and liberated members of a free society.

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