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.

Permalink 22 Comments

Mourning for Christina Symanski: Better Off Dead?

December 14, 2011 at 2:15 am (assisted suicide, choice, coping, death, death with dignity, family, hope, how to die in oregon, life is random, moving forward, Uncategorized) (, , , , , , )

anyone watching “how to die in oregon” could come away with several thought-provoking ideas.  one that, in my opinion, was fundamental to the documentary is the choice/ability to change ones mind.  if you opt for assisted suicide or ending your life with “dignity” there will not be a chance for that very basic tenet.  until recently I have held firm that it is the right of the individual to make that decision for themselves.  in my mind there are qualifiers, you must be terminal, in your opinion( and not the opinion of others) your life has ceased to have meaning or dignity.  it is still my belief that one person can not understand the full gravity of another humans suffering….

that is until I became aware of Christina Symanski.  if you are upset easily with what may seem to some as a harsh interpretation then I ask that you not read further. if you do please keep in mind that it is one persons opinion, mine, and that is the only one I can voice here with real understanding and honesty.  initially the reaction to her decision was the standard not for me to judge. it is not my intention here to judge her as a human only the decision and what it was based upon.  she truly suffered, in the blink of an eye she made a rash decision and paid for it dearly.  in 2005 this young woman was at a party, she became frustrated that others were not going for a swim and so she dove into a pool that was not to capacity.  as a result her life as she knew it was ending, it could have been a beginning and for some that is what it would have been.  only another quad would be able to have more than a cursory knowledge of this way of life.  yes I said way of life, it was different from what  she had experienced so far. to some it would have been a change in lifestyle, to her it was the end of life as she knew it.  on a smaller scale my own experience took me from extremely athletic to sedentary.  this was not by choice and certainly took adjustment.  while not on the same scale it gives me a glimpse some may not have.

on the outside Christina appears to have so many reasons to value her life, yet she made the decision to end her most precious gift.  having a mother with a serious disability gave me a different understanding of how to cope with obstacles.  even now with numerous health problems and post-polio syndrome marie does not consider( to my knowledge) ending her life.   the question that seemed to repeat itself throughout her blog was why me?  it has been my choice to ask why not me?  the what if game can lead to crazy making thinking.  it is my belief we are where we are supposed to be at any given time so it would stand the what if does not have a place in my life.  certainly that does not preclude learning from mistakes.  there have been many along the road and I anticipate making many more.  it gave me a chuckle, and I hope I can be forgiven here, to read about a man with Parkinson’s who fell trying to something he wanted to do and yet most certainly knew it would not come out well in the end.  I laughed and laughed, not at him but at myself and how we give up such ideas only when faced with very real danger.  at times my physical being is so weak that I trip and fall quite easily.  last year while my husband was away it was my belief that I could go down the few stairs in front without holding on. what was I some invalid?  out I go and down I go, very hard it should be added.  over the front and into some hedges, as I lay thinking of my humiliation it occurred to me that the neighbors could not see me due to the hedge.  so taking my time I eventually made my way to a sitting position, drug myself to the stairs and in time back to the house.  a few days later, hubby still gone, it seemed reasonable to try again. of course I had learned my lesson and was prepared mentally if not physically.  was I none the wiser? well yes and no.  as I began to fall it occurred to me that the army training would be valuable about now.  so I looked to the side of the porch and pitched my body that way as it would be a softer landing.  it was farther down but it was softer.  the farther down part made it a bit more difficult to maneuver back to the porch, however being in one piece gave me spirit of heart.  until his return the garage became my exit and entry as it was easier and safer.  

 laughter seemed to be missing from her writing.  it is not that she didn’t experience laughter it just occurred to me it was absent in a way I can not explain.  although she was involved with good works, was able to continue as an artist and had time on her side, she must have been so sad.  not sad  in the common way we may feel sad but down in your heart and soul sad.    the kind too many are not able to recover from.  

this one time I will allow myself the what if question, what if this young woman had been able to wait, and our system of healthcare could have given her another option?  was she just destined to this end? that is one possibility, there is no hope in that answer. no hope is really what killed this young woman.  she will be remembered by many, for as many different reasons as there are people.  she will be remembered here in this house and her death has given me more  questions  than answers.  a life gone too soon. her choice.  I will respect it was her decision.  like every decision we make it will continue to affect others.  those that live are those that live with our decisions.

Permalink 1 Comment

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.

Permalink Leave a Comment

it is that easy

May 3, 2011 at 2:02 pm (choice, death, fear, feelings and thoughts)

“The concept of accepting my disease for what it is instead of feeling that I am at war with it has changed my life”. This is a response from someone with RA. I should make clear that being terminally ill is not so different from a disease you will never recover from.

It is really, in my opinion, how we think that rules how we feel. not that you can stop feeling pain, however, you can think of it in a different way. more than one dr. has asked me over the yrs. how I deal with my physical pain without “pain” medication. it is not my belief that everyone could or should go without medication if it makes their pain manageable. for me it has been an ongoing process.

while I was in the Army I fell off a cliff while under fire from, lets just say it wasn’t our side, and broke most of my body and sustained a spinal cord injury. up until that point I was career army and very physically fit. I loved running more than just about any other activity. there was freedom of mind, body and spirit in the act of running for me. it was much like horseback riding without the horse:) my mobility was never the same and my pain at times intolerable. my body had betrayed me and I was not happy. then one day I gave my pain a face, it became my companion.

as for death, one method I used when doing therapy was to take the person on a visualization. during this you give some vague directions and then based on what the client tells you, some things can be assessed and explored further. one of the visuals includes a bear, I ask the person near the end of the exercise to be aware of a bear. that is all the direction I give, based on that I learn the possibility of the client thinking of death. if the bear can’t be seen or maybe not even heard that is common. if the bear can be a possibility but was not seen nor heard that is still a good sign. when someone not only was aware of the bear running along the path/maybe in the woods, and could be heard, it could mean the person is feeling death more closely for some reason. this is not always true so it requires the full visualization and follow-up questions to make sure it is not the therapist suggestion that has made it more real.

as pain has been my companion, the impending death or bear is my companion of another sort. we respect each other and know each other but do not fear each other. she of course has no reason to fear me and I see no reason to fear her. she will be my companion to the end, past the point when humans can be my companion. for me it has been that easy. for others…. they have to find a way to embrace it. when she comes for me, and she does move closer, we will walk together and she will not leave me to fear.

Permalink Leave a Comment

fearing death

April 25, 2011 at 2:13 pm (choice, death, dying, family, fear, friends, religion and death)

first I have to say the title might be a bit misleading as I do not fear death. for some reason it has been on my mind today. from what I understand jesus had some fear at the time he was crucified, I could be wrong here and I am sure I will be corrected shortly. it is my understanding he asked why god had forsaken him at such a time. through the years of my own life I have witnessed more deaths than I care to remember. some were at combat, vehicle accidents and others were from heart disease such as my own or cancer patients. fear was not based on religion as some might think. I sat with people who held the bible to the last moment, had prayers, visitors that prayed with them and yet when they were alone I saw them cry. I sat with them while they begged not to suffer or to live a bit longer. some just requested heavy medication until their final moments.

my grandmother died from heart disease. she did not complain, she didn’t express fear. she was loving and kind until her last breath. she was not a member of any organized religion but lived what I saw to be a spiritual life. my husband’s mother was very involved with her christian faith. she read the bible, had many church friends who came and prayed with her and she was admirable to the last breath. it seems to me fear of death is not about whether you believe in god or not. this is one of those when the rubber hits the road kind of questions. do you ask “why me” or “why not me?” I believe and hope that I will die with dignity, some may think I am a lost soul because I do not believe what they believe. Not all who wander are lost. the strange thing is so many people think they know what I believe but I am not sure how they would know that since it is not a subject I have spoken to many about. I am content to believe what I do and for others to believe what they need to.

we are not born with fear and so we can die without fear. I think a lot of us are not so much afraid of dying as we are of not being remembered. it is only human to hope that our kids will have some fond memory, our grandkids, friends and maybe even some people who just passed through on the way to somewhere else. I would like to think there will be some fond memories of me. Chris is going to have a memorial at our home (I think) for me. I have asked for a celebration of my life. remember me as I am a real person with some good some bad and some … that should maybe stay in the vault:)

Permalink 3 Comments

“Do not go gentle…. by Dylan Thomas and other bad ideas

April 5, 2011 at 11:48 am (death, dying, gratitude, living)

So I am attaching the whole poem by Dylan Thomas and I am sure for some it is what death should be! some big fight! I used to hear that a lot in the medical and psychology field. relatives and friends say he/she put up a good fight, or they fought this thing to the end. that is one choice. just not mine. not that I don’t take meds and get lab work but as you read earlier if I want to go and be with my family or enjoy a romantic weekend with my husband I am NOT going to miss out because I am too busy “fighting” an illness that is going to take my life at some point. when it does I hope I will have left behind so much love and good/funny memories, that is my ‘fight”, it is my fight to live the best life I can right now. I want to die in my sleep at home or some great B&B with Chris by my side. pretty much I want to die anywhere but a hospital on machines.
As I have said before this is not a greek tragedy! I had a son at 17, spent the first 2 yrs of my youngest sisters life with her as more of a mother than a sister and we are still so close, i was a nurse in the army, a high school teacher for 3 yrs, clinical director of an agency that provided shelter, food, counseling and love to youths that their parents couldn’t or wouldn’t care for. I was a supervisor on the forensic units at a state hospital. I married the love of my life and also gained young women I love/adore a son-in-law and grandchildren. More recently I have made friendships that mean more to me than any of them would guess. Young women that I can share my limited wisdom with, share my love and get so much more back in return. growing up I was very different from others and although most would say I was very popular I would not agree. I got along with many different groups which was a great gift to me and I was able to use it over the yrs but it has not always been easy for me to share my deepest self.
I will not go out fighting! I will go out loving and hopefully being loved. that is the greatest way to do into the night for me. I will not rage, I am grateful for all I have had not what I haven’t.
the question is not why me, it is why not me? in my case there is no reason, i have had a rich and beautiful life. I intend to continue until the dark comes for me.
Do Not Go Gentle Into That Good Night by Dylan Thomas
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Permalink 3 Comments

elizabeth taylor

March 25, 2011 at 1:42 pm (death, dying, gratitude, leaving)

today elizabeth taylor died of congestive heart failure. she was diagnosed in 2009, I was diagnosed in 2008. it took a few minutes to process that she has died from the same disease that is taking my life. earlier I spoke to a friend that has a brother, diagnosed the same time I was, with a higher functioning heart and he has not suffered the kidney failure and multi-system failure that I have. His brother says he is happy, deteriorating as am I. It touched me to hear that he is moving in the same direction I am. We have both decided to make new memories every chance we get. are you the living doing that? I wonder and hope for you that you are. I take every opportunity to be kind and spend time with those I love. I choose to put on a happy face as some would see it, but I’ll be damned if I am going to be remembered as the sad one or the complaining one. the living will have time for sadness I do not. for valentine day my husband took me to a beautiful old large inn in the mountains for a valentine getaway. we had never done this before since we had so many ahead of us and it seemed like a waste when everyday is valentine for us. we went and I could be sad since I spent each day in our room, we had room service and napped and just hung out. the last night was the big “ball” and I had a new dress, shoes the whole works. my husband is a handsome man even at 20 yrs my senior. the beauty of the moment was that while so many look back and say if I had known this was the last time I would have ….. but I knew this was the last time we would go to such a beautiful place and it was the last time I would dance with the man I love more than my own life. How lucky is that?

Permalink 1 Comment

« Previous page

%d bloggers like this: