September 30, 2012 at 12:58 am (dying, end stage, heart failure and exhaustion, how does it feel to die) (, , , , )

there are things that i have left unsaid.  earlier i was reading the blog of someone whose daughter is terminally ill.  she made the remark her daughter thinks she can’t handle the complete truth about her pain.  it made me start thinking of how i too hide the brutality of the pain i endure day-to-day.  is it due to his lack of understanding? i would have to say yes and no.  can someone who is healthy and never had any type of injury really understand or empathise with this kind of pain?

what will be gained if i were to bare not only my soul but this thing that is a part of me.  he already worries, do i want to burden him further?  i love this man and know that he is making every effort to make sure i have joy in my life every day.  it is in his eyes, the way they get moist or dewy. it is in his face, the way he goes all soft and turns just a bit away.  it is in the hand that reaches out to me.  we sit and hold hands. yes i have things that are unsaid.

at times the pain is almost more than i can bear.  when working in ER, trauma and air-evac there were many times i saw patients writhing in pain and now i am that person.  sometimes the pain comes  and i try to stay very still, maybe if i am very still it will go away.  other times it comes and i have to move, at first i shake my legs.  he knows without me saying how bad the pain is.

on our way to the bookstore i reach over and take his hand; “you know things are moving forward right?”  he swallows harder than normal and says yes.  the truth is i now need about 12 hours of sleep and remain exhausted the other 12.  my normal routine would have been jumping up the minute my eyes opened and heading for the shower.  now the shower is some daunting task that is going to deplete my already low energy.  how do you explain that you can feel your heart giving up?  i feel it struggle to beat, i feel life gently flowing out of me like some ocean tide.

there are things that i have not said.  there are things you have to experience to really understand.  there are things i may never say, except here.


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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 waiting can be exhausting

June 5, 2012 at 2:26 am (dying, end stage, end stage congestive heart failure, family, feelings and thoughts, gratitude, how does it feel to die, life is random, survivor guilt, waiting) (, , , , , , , , )

getting texts from middle sister with updates on the mother.  much like Pavlov’s dog the muted ding on my phone elicits the intake of breath.  it is not from calif so release the breath.  it is from calif so just look at the first few words, okay so far, so finish the text.  a call from nephew and a stillness, his voice lets me know that it is not the news we are all expecting any day now.  some texts ask if this or that is normal under the circumstances.  middle sister and nephew are not in the medical field.  they are not like younger sister and myself.  their lives are much different from ours.  they are the least prepared for this task and yet they are the ones called on now.  the only thing to do, reasonably, is be a support for them.

as much as my mind dismisses this and seeks to maintain focus on her it is at times a challenge. it is a challenge not to feel my own death coming and wondering if it will be similar.  would i make the same choices? the toll on those around her lead me down the path my own family will take in the not too distant future.  one question that snaps at my heels, like the crazy border collie nora, why not me?  she was diagnosed long after my own heart failure, she was able to have heart surgery to repair what can never be repaired in my own.  the man who had the same condition and device leaves his family months ago and yet here i am.  survivors guilt is a term anyone in the mental health field is familiar with.  to know what it is did indeed help me through some tough times.  after much searching it is hard to call this survivors guilt.  though it is a question likely to never be answered it is not guilt that i feel so much as how does this happen? does it go back to life just being random?  is there a flow to this not seen from so close?  is more required of me before i am released?  so many are deserving and at times though grateful for the sentiment, it is too cliché to say i am needed or i have a great attitude.  so many others are more needed than one like me, others want  to live as much while some have proven their value to the world.

it is humbling and awe-inspiring to wake each morning and think here is another day given.  another kiss from my love, another smile to share, another day  to wait and bear witness to the passing of another human being.

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Decisions to make when dying

January 16, 2012 at 8:05 pm (choice, death, dying, end stage, hope, how does it feel to die, moving forward) (, , , , , , , )

decisions to make when you are dying are somewhat different from the ones being made every day by healthier people.  some are exactly the same of course, what to eat, where to go, what to read ….  our lives are made of all our decisions great and small whether they were the best or not.  in general it is my pleasure to say decisions made by me have been the best to my ability at the time.  putting decisions in perspective is a gift we can give to our selves and others.  it is not your mother’s fault if you made a poor decision at 30.  too often people fall back on how it was in the day.  who screwed them up and how it is not their fault as the teacher in 3rd grade broke their spirit.  not that our past does not have a huge impact on who we become, that is a valid point to be made.  however, it is in our own best interest to say that was then and this is now.  no one is making my day-to-day decisions for me unless given the power to do so. 

we have the ability to choose peace of mind and heart.  my heart is at peace by choice.  recently I have read a lot about how someone dying is supposed to be feeling. of course these are not written by someone actually dying.  there are some common physical symptoms as we reach closer to the bear (death).  food is not as important since the body is shutting down and we are not as active.  other physiological changes are beyond our choice.  the level of energy experienced is diminished naturally, a lot of focus goes into just breathing.  for the last few months I feel myself going through some changes physically, they are markers of the disease and quite expected.  when you enter end stage it is crossing a threshold(doorway) that you will not be leaving.  it is not a bad place to be and if you are psychologically ready it can be recognized for what it is and even appreciated.  knowing where you are going is somehow comforting.  at this point I know where I am in my progress.  what comes now is the mystery.  so I am going to keep writing as long as I can.  this is part of my legacy to others.  this is how it felt for me to die. 

so far, even with the fatigue, my life is better than I could have ever imagined 20 yrs ago.  in May it will be 20 yrs since I first laid eyes on the man who would become my best friend, my love and my husband.  as a more practical person the whole idea of love at first sight seemed romantic fantasy.  today I would tell you it happens.  the thought that was mine at that moment was, if I can spend even one day with that man my life will be better.  there is no reason why I would think that except for love at first sight. 

for the past few days I have been working on a project to make a difference for him later.  it is another decision that to some is insignificant and maybe it really is.  there are still things of mine that can be let go to make sure his things are all around him.  he is comforted by his things.  one of the reasons I love him is his love of books and we have more than most would think reasonable but this is our home and our choice.  the room we use as an office has both of our desks and our guest room has been crowded with books on the floor.  my decision has been to move my desk out of here, give him a large bookcase that has been for my use and in general try to arrange things so when I am not here he can come in here and feel comfortable.  knowing how he is my stuff would be still sitting here yrs after I am gone. yesterday he did make the remark he did not understand why I would want to give my desk away when I use it.  as I gave one reason or excuse after another, seeing he wasn’t convinced, I stated it directly.  my desk is just a desk, yours is a special piece passed down by your mother, it makes no sense to get rid of yours.  he of course made the offer to do something with his so I had to be frank and get him to admit when I am gone he is going to want his desk in there and not mine.  it makes sense to take care of this now.  one thing I know about him is when the time comes he may be paralyzed to the point of not being able to get rid of my things and I love that he would want to keep reminders. my concern is he won’t be able to let anything go and it will be too much for him.  he has shared with me his fear of not being able to go on without me.  many long talks later we both know that he is going to need time but he will go on without me.  he knows we both want him to continue to have a social life and to be the best father and grandfather he can be.

other decisions are going to be made over the next few weeks.  it has been 4 yrs of my 5 yrs to live.  all I can say is it has gone by quickly and been so great!  I am not giving up at all, that spark of hope lives on.  the hope is just changing. now my hope is to go peacefully in my sleep, my hope is  to make the event as easy on my loved ones as possible. my hope to live on in the memories of those I love.  so much hope and so much to be grateful for!!  tomorrow a friend will come to help move the desk, it is going to another friend and that makes me happy.  I hope she will like it as much as I have.  I hope she thinks of me and is inspired. 

it has been 4 good yrs and may be more to come, who knows for sure?  I will try to make the coming decisions to the best of my ability.

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Still here

December 7, 2011 at 12:16 am (choice, coping, death, doctors, end stage, holidays, hope, waiting) (, , , )

no one is more surprised than me, with the exception of my dr.   We met briefly yesterday and there is not much new to say.  we sort of look at each other and wait, the pause bothers him more than me, that is the training. I can sit and wait for however long it takes.  one of the hardest exercises for an intern is that waiting and not filling the silence.  it is a skill that was a gift long before becoming a therapist.  waiting does not cause me distress, waiting in line or in traffic? no problem.  this waiting is different in many ways. most importantly I am not anxious for the waiting to end.  this is a comfortable silence.  at times it seems daring to speak the words of the future plans, the waiting may come to an end, the alternative to planning seems giving in to hopelessness.  I am many things, hopeless is not one of them.  my calendar is at the ready and future lunch dates, dinner plans, birthdays to celebrate, these are already marked and waiting to burst forward at the right time. 

my dr. is a kind man and he is optimistic with me.  we both know we are waiting and seem content to chatter a moment, nothing new, we both breath.  he is going to be around for the holidays and this is reassuring.  it is comforting to know that if the silence is to be broken he will be with me.  there will not be a hospital visit as that might become a pattern I do not choose to establish.  the mother was diagnosed with a similar problem, it should not be so serious and yet it is. she has been in the hospital maybe 3 times now.  if you go they will keep you, if you build it they will come, they think if you come they must do something.  the secret is knowing there is nothing to be done and accepting it.  Chris asked me what the dr. said about my low energy, I tried B-12 and just got horrible nose bleeds.  there is nothing to say, it is not what he wants to hear.  these are the facts ma’am, just the facts.  my energy is pretty good given the situation, it is going to get worse.  we are spoiled by the quiet, we are waiting for the words to start.  yet we do not dare listen to them. they say it has been a long silence and soon we will have to talk.  I can wait, I can wait.

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Palliative Care also known as end of life care

November 17, 2011 at 3:46 pm (end stage, family, medical language, medical terminology) (, , , , , )

as I tell my husband I have been reading the brochure on palliative care I can tell by the look on his face he is not at all sure what that means.  it occurred to me that many will see the brochure and have no idea what it is about and lose out on information that could really make their life and that of their terminally ill loved one tremendously better.

Palliative care is simply put, end of life care. not just for the dying patient but for the family/caregivers also.  why would caregivers need this service? if you have seen someone at the end of their rope, stressed out and feeling guilty about feeling stressed out then you know why they need this service.  it is without a doubt an invaluable service for the person passing on, it is also invaluable to the caregivers.  so many times out of love or guilt a family member takes on the staggering task of meeting the needs of the ill loved one.  they will deny themselves the very care they are providing to their loved one. 

since I have been told on more than one occasion that being in end stage is here, Chris and I have discussed what decisions may have to be made now rather than wait until we are in the middle of a health crisis. knowing ahead of time that we are in agreement of the steps we will and will not take relieves a burden before it gets here.  of course I am hoping to just go quietly in my sleep, no fuss.  the reality may be something quite different. better to be prepared and in agreement now than trying to work through all the emotion and decision making in the heat of the moment.

to know that someone could come in to our home and give Chris the time to go play bridge, or run errands is a comfort to me.  we are not there yet but I want to know what my options are.  this brings me back to the brochure. it troubles me that this nice medical term is being used to make people feel better about reading it while the very use of this term may prevent an average consumer from picking it up and using it.  I am not suggesting that the medical industry talk down to patients, just make sure we know what you are talking about. for me it helps to have the medical background and for many others who are familiar with the term that is great for you.  if life me there are certain gaps in your expertise you will know what I mean. 

it is my intention to write more about this in the coming days and I hope it will be useful and/or interesting to anyone passing through.  palliative care has been around for a while and seems to be more accessible than in the past. I encourage you to get all information available and be informed of your options and the support available to you.

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The twilight zone-another reality

October 12, 2011 at 6:51 am (end stage, end stage congestive heart failure, holidays, living, medical terminology, Uncategorized) (, , )

Last week I had another dr. appt. Afterward I felt as though I live in two worlds. One is my everyday life and the other is my medical life. While  with the dr.  we discussed the fact that I have been in “end stage” congestive heart failure since last November. Once my liver became what is called “congested” I officially entered the final stage. It is interesting to use that term since there is nothing after this phase. I don’t feel like it’s the end. I am not sure what it is the end of. It is not the end of hope, it is not the end of joy nor is it the end of my love. A friend of mine asked me if I am afraid to not be here anymore. This is a great question and I was glad she felt comfortable asking. I would rather people ask their questions now while I can speak for myself, instead of  wondering after I am gone.

The answer is no I am not afraid. My focus has been on the here and now. When I am gone? Well, I will be gone. My hope is I have made a difference. By doing so I will live on. Everyday we are given the opportunity to make a difference, to uplift another, to stand for something and empower others to do the same. You never know how an act of kindness may make a real difference. If not in others, then in yourself. Yes I believe we can make ourselves happier and healthier by giving of our self, no matter how small the gesture. This includes giving compassion to ourself. Sometimes this is difficult, if I have to cancel plans or don’t feel well enough to make dinner I can be very critical of myself. Luckily I have family and friends who are loving and understanding.

Last week I was at the dr’s office and I told him I have stopped reading about the next step and signs of progression. There is no point since we (the dr and I) know what the next step is. I have to go in next week for lab work, at this point it is just wait and watch for other signs of organ failure. I realized there was this awkward pause and this is the part that is a bit surreal. We had been talking about this “end stage” process from a clinical view and that is the surreal world. My real world starts the minute I leave his office. It’s back to traffic, running errands and just living my life.

As Chris and I plan for the holidays ahead I am in my real world, that is on occasion disrupted by that other world where I am …… I am not sure what to say here. I recently read that people with a serious medical condition need to accept they are sick and I do. I just don’t like to label myself that way. I am many things and ill is just one of them. For the few minutes I am in the dr’s  office I am in that twilight zone of illness, I am grateful I do not live in that world.

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