it has been a while

August 11, 2014 at 12:28 am (Uncategorized) (, , , , , , , )

so where to start? guess i will start with being so ill for a few weeks and still not where i was before it happened.  the dr said it could be bacterial pneumonia, sepsis or early kidney failure.  i made a recommendation about another possibility and he agreed. what i felt sorry about was he gave me this hopeless look and said i was asking him to guess since i would not agree to further testing.

after 10 days of antibiotics i still didn’t feel as well as i had a few weeks earlier but we all know this story isn’t going to have a storybook or fairytale ending.  today i was out for a couple of hours and that seems to be ok. the exhaustion is more pronounced than before, however, any time i am able to interact with loved ones i feel most grateful.

there is one thing i really want to address here and i know that some may not understand this but that is ok.  well actually there are two things:)

first i want to say that i am not afraid to die.  in times of weakness as well as times of strength i worry about my family.  chris says often that he does not know how he will carry on if i am not here.  of course i know that he will be fine and he has support from so many who love him.  i worry about my youngest sister.  i won’t say more about that here as i regard her privacy highly.  we all (bloggers) hold some things back as they are not for the public.  they may be someone else’s story that we feel is better left for them to tell.  as for me and death? we are old friends. we have come close over the years, we have even nodded at each other a few times.  we respect each other for what we are, our purpose.

second, if i can remember now what that second thing was??? oh yeah, i am an advocate for the right to die with dignity. i know some of you don’t agree with that and i respect your choice. i guess i would ask that you respect mine. i will make this decision when the time comes out of love for all those who are in my life.  the tricky part is making sure it is the right time. let me assure you i will err on the side of caution with this one.  i have made decisions that were life and death since i was too young to do so. the practice has not made me perfect but it has taught me not to act precipitously.  never pull that rip cord while still in the plane!

i have missed you my friends and look forward to talking to you more in the coming days, weeks and months.  keep looking forward but (i hate that word) don’t neglect the moment you are in at any given time.

we were both so deeply touched by the comments left for chris when he posted for me.  i want to thank you and tell you he was appreciative to those who reached out to him.  you made a difference.

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late night questions

October 15, 2013 at 6:03 am (Uncategorized) (, , , , , , , )

it is 6:30 a.m. and i have yet to sleep.  not because i am not sleepy but the pain is so intense it i start to ask myself questions.

when is enough, enough?  at what point do i say this is not how i want to live?  if i take pain medication does that mean i am defeated? why don’t the drs. tell us just how this is going to affect us?  there are others but i will stop at these.

when is enough, enough.  we have to decide that for ourselves. no one else can do it for us.  if the pain reaches the unbearable level and i am not a good partner or friend, is that the stopping point?  being a good partner is very important to me.  my beloved deserves someone who can be a good companion.  someone who does not add to his burdens.  at nearly 80 yrs old hasn’t he earned the right to the life he dreamt of?  i hate that my days are short, as i sleep sometimes 12 hours or more each day.  i hate knowing that he is lonely at times because i am not at his side. will i know when to say enough is enough or will i continue to say if i can just get some relief from this pain things will be better?  the truth is it is not going to be better.

i am going to finish this tomorrow if not later today.  the pain medication seems to be easing the pain some. so i will tell you a quick kind of funny tale from our trip.

we stopped just at the border crossing before going in to canada.  i took a picture of the bay, it was just so beautiful.  we bought some gas and used the loo.  as we were leaving a rather rough around the edges woman went out the door just ahead of me.  i reached to catch the door.  she said “i’ve got this, don’t worry i won’t let it close on you.” i responded with a thank you.  she went on to say “i just hate when people let go of the door half-way through.  they have one job, hold the door, and what, they can’t do that?  “one job!”

this was one of those moments when it feels like you have shared a joke with a friend.  she was just so funny.

in maine just at the border to canada

in maine just at the border to canada

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a different kind of night

October 26, 2012 at 3:03 am (dying, holidays, how does it feel to die, leaving, living, living with dying, peace of heart, shackelford ponies, the dr. says, waiting) (, , , , , , , )

tonight is very different from just a few nights ago.  my sister is stretched out on the couch and is leaving tomorrow.  yesterday we went to see Argo with ben affleck and it was gripping.   as we walked up to the counter to pay she turned to us and said “i can pay for myself.”  of course she can, she has a great job, travels, lives in san francisco on her own.  she has a ton of friends and an on-off boyfriend.  i don’t have any reason to worry about her, well …. except she is my baby sister and  lives on her own in san francisco!

 this evening we spent together took me from the moment, to the past and the future.  in that moment i realized she is going to be fine.  a few years ago she came to stay with us, at the time she was going through an awful lot of emotional turmoil.  we were sort of a resting place, a place for her to make some decisions about what she wanted to do without the stress.  since i was 14 when she was born and the mother  really turned her over to me, i have a very protective love for her.  hearing her say she could pay for herself brought me back to the moment and i was so proud of her. 

the down side is it feels like letting go of that baby girl i first held, the girl who called me in germany to tell me about the boys she liked, the time she had a fight with her boyfriend and through her tears came to my lap to sit and cry.  the upside is i can go and know that she will be okay.

knowing that everyone is going to be okay is important.  my sister has said and it is so true, we are good, we have said  everything we need to say.  our calls end with i love you so when i go there is no doubt that we have a good relationship.  my husband will be sad but he is going to be okay.  my step-friends will be sad and they will stand by their dad and help him if they need to.  my friends know that i care about them and that if something needed to be said i would have said it.

so now, more than ever, we are just waiting.  while i am waiting i think i will go to the ocean and see the wild ponies. then we will have a big family thanksgiving, after that a cruise to the islands, and round out the year with the traditional Christmas in charleston!  this very well may be my last one and if it is i am going out with a bang:)  life is good, yeah life is real good!

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treat your family

September 20, 2012 at 3:07 am (Uncategorized) (, , , , )

over time i have shared some of the advice given to patients, friends and students.  in my regular life it was my goal to never give advice if it was not asked for and to always remind myself and others that i would not want anyone to substitute my judgement for theirs.  many times i have watched friendships and families struggle with arguments and hard feelings simply because someone gave advice that wasn’t taken.

this is a piece of advise i have used once or twice in  my life.  it is always my intent to treat everyone with respect but i am after all human.  what are these words to live by? simple- treat your family as well as you would someone you want to be friends with.  when we are dating someone  we want to make a good impression so there will be no nagging, cussing them out or belittling them.

from experience i also learned we should never say something to someone we would not want to be the last words they hear.  there were a couple of times when working on oncology and the er i was witness to this horror.  a man says to his dying wife she is driving him crazy, she is selfish and he just needs to take a break.  within 10 min. she was deceased.  he had gone out the back by the dock to smoke so he didn’t hear us page him.  i will forever see his face and hear his sobs.  before this event in my life i had experiences to help me understand just how fragile life is. this really lives in my heart.

family is not always the people we are born to. we create family.  even when we are born in to this group it is our choice to create this bond we call family.  i have a very close bond with my ys and was blessed to marry the man who is my best friend, and the love of my life. through this i also gained my step-daughter friends.

there is so much on my mind tonight that i hope to share here over the next few days.  please think about what you say, once the words are said they can not be taken back.  someone may choose to forgive you but we all know forgetting is another thing all together.  so please never miss a chance to say i love you, never miss a chance to tell someone how much they mean to you. treat your family and friends like the treasures they are.  don’t wait until it is too late.

 

 

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pain in the shadows

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

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

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

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

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

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

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

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

 

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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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it’s really about living

May 17, 2012 at 2:17 am (being remembered, dying, how does it feel to die, living) (, , , , , )

yesterday we went to a little restaurant in town and we know a couple of the servers pretty well.  one is a lovely young woman who recently graduated with her BA.  she wants to be a writer or at least that seems to be her goal at present.  after being through a particularly difficult period we had gone to the grill for dinner and the conversation went to  why we had not been in for such a long period.  for people we have a long-term acquaintance with it seems fair to mention that one day he may be on his own.  for me it is another attempt to protect him in future.  if people know, then he will not have to explain what has happened. it will be enough that i am just not with him.

she is working as a ghost writer for a couple of online companies.  the hope is to someday write her book and we believe she will.  there has been mention of this blog and the content.  after speaking with her last night I realized that if asked my brief reply is, it is about dying.  on the way home i wondered why i referred to it  in that context.  yes, in my mind it was going to be about what it feels like to be dying.  my hope was to let some light shine on the subject.  having cared for countless terminal patients, during my nursing years, many expressed regret at not talking to their family more about what they were feeling.  this is an opportunity to share after i am gone.  in reading this he will be re-assured that i adore him.  anytime he wants he can read these entries and know that i felt blessed to have such a gracious loving man.

even as my thoughts are forming, an outline of activity or inspiration for a new post, the act of living distracts me.  there is more about life here than death and that is maybe the key for me.  this is more about continuing to live the life i can be most proud of and to ease the road of life for my loved ones when they are on the road without me.

from White Elk:

when you were born, you cried and the world rejoiced

live your  life so that when you die the world cries and you rejoice

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Do You See What I See? Do The Dead Visit Those Who Are Dying?

January 22, 2012 at 1:12 am (death, dying, how does it feel to die, Uncategorized) (, , , , )

Do the dead visit those who are dying or is it just me? another reason I would love to find blogs or books by people who are dying.  most of what I have read encourages others who are living disease free lives. it is inspiring to read about someone who knows they have pancreatic cancer and yet lives to that last moment with all they have.  so many brave souls have gone before me.  although I truly see them as brave it is not a word I would use for myself.  my life is ordinary and I like it that way.  we enjoy a day of eating soup/sandwich and browsing the book store.  watching old movies, sitting side by side reading and sharing what we are reading.  husband and I never seem to tire of each others company and yet we treasure moments with family and friends.  that is not brave, that is a gift I selfishly give myself.  some give lectures and include hand stands, others make movies, some write for magazines.  in absence is the appearance of loved ones who have gone before that come in dreams. 

for the past few months I have been dreaming of those I have known over the years who have passed on.  this is of interest to me and husband as I do not tend to remember dreams.  that is not entirely accurate.  when I remember a dream it is one so vivid and prophetic that if I had not learned at an early age to accept them it would be maddening.  these dreams are so moving and comforting, somewhere in my psyche lies the origins I am sure and at the same time not sure at all.  the last one was of a young man named Danny.  when we were quite young he was in love with me and I he.  not in the romantic way though, he had recently confided in me his attraction to the same-sex.  being evangelical born again christians he knew his family would never accept him as he truly was.  this was in the early 70’s, i was legally married to a man who was more brutal than I have ever encountered in all my years and that includes my forensic patients.  my son was 2 and loved Danny. Danny loved him and we had decided we would be married and raise son as Danny’s.  loving him the way I did it was hard to see him sacrifice his own happiness although in my mind’s eye it seemed possible he could live his life and i mine within the same house.  after much discussion it was decided that he would go on a short getaway with a professor he cared for.  several days went by with no word from him. this was so not like him, his mother called, his brother called and finally the park rangers were called.  he was found with his friend in the back of the camper, there had been a sudden unexpected freeze that night they were camping and someone lit the hibachi. the two of them died of asphyxiation during that cold night.  you can only imagine being found several days after death was not a pretty sight.  something not thought of in years and never consciously in regard to the condition of the bodies when found.  this being pertinent only as it pertains to my confusion by this dream. 

when I have these dreams, and the focus now is on these few dreams of late, there has been no waking thoughts of said visitors during the past few days.  deep in sleep which is rare these days except during my visits from the past.  we are in a park type setting with people all around, he is as he was that last day, young, smiling and little crinkles around his eyes even then.  there is a pool, we slip in easily and drift to one end away from the few that might hear our conversation.  the words are not important it is him and we have that ease of old friends.  people are moving away from us, they begin to raise their voices and point to the sky.  flies are everywhere, not oversized like a real nightmare but the sheer number is enough to quicken my pulse and as I reach for his hand ( we must move right?) he smiles and says “it wasn’t like you would imagine, it was just going to sleep.  I saw myself like watching some interesting show but felt no attachment to the body laying there.  yes there were flies and much worse, don’t worry it will be easy when the time comes.”  then he said “you have a sinus infection, wake up and take care of yourself.”  at that I woke and realized indeed the early symptoms of a sinus infection.  it seemed the most natural thing to walk into the other room and he would be there. he was not of course.  husband might have been confused if he had been:) 

over the past few months there have been others, each passed in different ways and shared with me their experience and seemed reassuring that my own is coming closer, the rest of the message is not to despair.  though I am not anxious to go I have not worried it would be traumatic.  my question is … have those before experienced this? have they been written off as hallucinations or too much medication?  in the medical field it was named intensive care psychosis. my own grandmother was given that diagnosis at the time.  she seemed unnaturally focused to me and it was difficult to believe what the staff wanted me to believe.  now I ask again was that really what happened?  I am here to tell anyone else who experiences this that they are not alone.  if no one has then maybe I am not as lucid as I think.  then again…

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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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