the irony of Being Mortal

April 12, 2015 at 4:21 am (Uncategorized) (, , , , , , , , , , , )

there are so many things i want to say.  the most difficult thought for me to impart is the physical pain and exhaustion i feel every day.  most days i sleep until the afternoon, or the early evening.  when i get up to use the bathroom, often with the hope i can get my day going, it takes so long i worry about making it in time.  that is a shameful thing to share here with you but how can you understand if i am not honest here.  there is pain throughout my body constantly now.  i can feel each and every fiber of my body, with the exception of the times that i have the numbness from neuropathy.  often i stagger and find it hard to prevent myself falling.

i was naive to think i could keep doing this blog at a normal pace when i am progressing with my heart failure. of course there is also the (non-alcohol) related cirrhosis of the liver. there is a long list of other complications that i find too tedious to list.  when i am awake but unable to actually get out of bed or out of the recliner i think of things that i want to make sure i say.  i often look at my laptop sitting a couple of feet away and am over-whelmed with the idea of actually picking it up. then there is the part of putting together comprehensive thoughts.

a couple of months ago we watched a documentary about a doctor who wrote  a book entitled Being Mortal.  he wanted to understand how to have better conversations with patients who were terminal and had reached the point where modern medicine could no longer enhance their life.  his own father was diagnosed with cancer and they found it difficult to have a conversation about what was about to happen.  the ironic thing was he said “what i found missing in every book was the voice of the patient.” yet here he was writing about the subject of dying and again there was not one patient voice. it was other drs explaining how they were handling talking to patients about palliative care rather than further treatment.

as time goes by i have more understanding. patients are just too damn tired and don’t want to use valuable energy to teach healthy people how to treat them.  for the second time in just a few months i have heard friends relay to me that they have not seen someone who they are friends with, and the person is terminally ill, as retreating.  i say to them is that person retreating or are you just not taking the time to go see them?

visiting someone who is terminally or even chronically ill can be frustrating.  sometimes in our optimism we say yes to  a plan one day but the day of the event we are unable to function.  does that mean we don’t want to engage? HELL NO! it means you are going to have to be understanding. it means you are going to have to be creative. it means if you are really my friend get your behind in your car and come to me.  it means you may be sitting in bed next to me or in the double recliner with me and yes you may have to make an effort to carry the conversation, you may have to bring pictures to share or read to me.  it wouldn’t matter to me if you just spent 10 minutes just sitting with me.  of course i don’t say this just for myself, there are so many others out there who are spending their last days alone.  i am blessed to have love around me, even saying that i must be frank and say he needs a break sometimes.  every time there is any opportunity for him to get out and socialize i encourage him.  what holds him back is that i will be alone and then what?

oh i will have my amazing, beautiful in spirit as well as on the outside, sister here in a few more months.  she will also need to go her own way in order to fully life her life.  i have some other ideas on the back burner though so no worries here.

just remember that your time will come and ask yourself what would you like from your family and friends?  now do exactly that for someone you know who is suffering from any type of illness and make their last days their best days possible.  when you give kindness it comes back to you.

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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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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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he asks

November 8, 2012 at 12:25 am (dying, end stage congestive heart failure, how does it feel to die, living with dying, peace of heart) (, , , , , )

last evening and night were one of the most difficult yet.  even with the excitement of the presidential election to distract me the angina pain, liver pain, leg pain and inability to breathe could not be denied.

he reached and held my hand. no words were necessary.  the warmth coming from his beautiful, loving hands said all that needed to be said.  love you’s as deep as the well and passionate as young love flowed from one side of the lounger to the other.

today in the car he asks “is there anything i can do when you are going through that?”  the answer? you are already doing it.  the comfort of your love is the only medicine i need now. it is the only medicine that can bring real relief from this eternal pain.  we both know this is what is supposed to happen.  that doesn’t mean it doesn’t stink! as a mist comes over his eyes and i fear he is going to cry….

look honey aren’t the trees amazing this time of year?  wow what a great day!

 

 

 

 

 

and just like that we are back to us and appreciating this day we have been gifted.

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while away

November 4, 2012 at 2:14 am (end stage congestive heart failure, heart failure and exhaustion, hurricane sandy, road trips, shackelford ponies, the dr. says) (, , , , )

though i did not post any updates on my own blog i was able to continue to check in on some of my friends here.  this is truly a miracle, a small one but quite handy.  through facebook, email and smart phones we are able to stay in touch and reach out to those we love.

hurricane sandy devastated so many it is hard to wrap my mind around it. while in the army we practiced  mass casualty situations. under certain circumstances we were fully prepared to take action and do the most good.  as we all know it is one thing to practice and another to be in the thick of it.

we left here on sunday for the “crystal coast” and stayed at a beautiful hotel a few hours away. the next morning we called the inn we were going to stay at and they said come one everything is fine.  when we got there it was extremely windy and i hate to say it but i was grateful.  i was able to rest and just hang out in our room.  the trip was so much more exhausting than i had expected.  the fluid retention was also more than i was expecting.  there never seemed to be a good time to take the pills that would ease the fluid retention.  not to blame, it just seemed everyday that maybe tomorrow i would take care of it.

here are a couple of pictures taken from the balcony of our room.

i am too tired to fix this tonight but for some reason the last paragraph did not post:(  ah there is tomorrow to work this…

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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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tonight

October 22, 2012 at 2:30 am (dying, family, how does it feel to die, moving forward, shackelford ponies, the dr. says) (, , )

has been a tough night.  for some reason my feelings have been as they say “on my sleeve.”  we did watch a movie that turned out to be a bit more sad than we expected.  i noticed the tears and took his hand, it seemed better to let him have his moment and take my cue from him.  we spent the next couple of hours just relaxing.  when he was ready to go to bed he asked “how are you?”  my response to this question has become so automatic with barely any thought, “i’m fine.”  a beat or two go by and then “if being exhausted and in pain all the time is fine.”  what came next made me walk away. “i should stop asking.”  it wasn’t his intent to sound like he didn’t care, i know that.  this was my first clue that i was being overly sensitive.

next i was looking at facebook, which i still don’t know why i am on, and saw some pics that had been posted.  this isn’t the first time i have felt a bit sad when looking at pictures being posted.  facebook has been a great way to keep up with my friends and loved ones, it has made bad days bearable.  seeing the family photos, fun in the sun, and of course the adorable babies (furries included).  tonight seeing all the love and fun that i am not a part of anymore was like ice water and a white hot knife all at once.  to realize that these are people i thought would always be a part of my life and now i question if they ever were.

what is my part in this?  whenever patients would talk about problems with other people, whether it was work, friends or family; my question was “what part do you think you played in this?”  if you can say, honestly, that you did everything possible then move forward.  if all my friends had moved on it would be obvious that the ball is in my court.  that is not the case here.

many people with long-term illness or long-term terminal illness relate to what is happening in my life.  in other blogs it is a familiar story.  from spouses to parents, the question is why. why do these people stop making the effort? the caretakers want to understand and know what they can do. sadly there is nothing the caretaker or even the person who is ill can do.

tomorrow i will have my feelings under better control. tomorrow i will be fine. i will leave it as fine and not be whiny.  tomorrow my sister will be here.  this time next week we will be on our way to the coast.  it may be time to evaluate if facebook is a good thing for me.  if you have people or  things  in your life that are not making you happy maybe it is time to ask yourself the hard questions.  what does it say about them? why would i even care about being friends with someone who is so shallow? who drops a friend because they can’t be as entertaining or spend as much time running around?  i want to spend my last days with people whom i respect and know what they are made of and where i stand with them.

tonight is now early morning and my sister is coming today.  next sunday we leave for the coast.  we will laze at the beach, watch the wild ponies, visit the lighthouse or just be together at the beach.

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reasons not to be admitted to the hospital

October 17, 2012 at 12:49 am (Uncategorized) (, , , , , , , , , )

this is one of those posts i started to write one night and then found i needed to give this more thought. except that isn’t really true.  i worry that others are not going to understand what i am trying to say here.

for me there are absolute reasons why i would not choose to be admitted to a hospital.  during this time my so-called mother died.  i didn’t want my sister to think i was judging our mothers’ choice to go to the hospital numerous times. in the past i have said and repeat here that i in no way want to make judgement of those who choose to go into the hospital.  this is my choice, under my circumstances.  we are not all the same and our circumstances are as varied as we are.

there is no reason for me to go for further testing, when i have new problems like the one with my  liver i look into what the diagnosis really means for me.  are there more tests that are going to clarify issues for me? in my case it was clear from the one test what the problem is and that there is nothing to be gained from further testing or seeing a specialist.  my regular dr., dr. salsberry reviewed the test results with me and we agreed that another test or another dr would not make a significant difference.  it was my choice to not see another dr. for my liver.  it was one of those side events to be expected with the heart failure.

unless there is something significant to be gained from further tests, new doctors or a possible hospital stay then i am just not thinking that is an option for me.  there are so many options available from home now that i see little need of a hospital event for me.  this of course is not the best course of action for many patients. it all depends on the condition and what they can gain from a hospital stay.

it is more important for me to be at home.  a bad ending for me would be to die in the hospital.  there are times when pain has played a big part and i have come very close to a visit.  due to my condition we all are aware i would most likely be admitted to the hospital if i were to go in for any reason. there are no cats to cuddle in the hospital, my husband will not share my bed, friends would see me in an environment i would rather not have them see me in.

the main reasons for me are just simply i do not want to end my life in an unfamiliar bed, i don’t want to be poked and prodded,  i want to choose when i am ready to go. i do not want to give up this last choice.  i am a firm believer in death with dignity. i believe this is a choice my husband and i make and he is ready to live with.  i can not think of a better way to end this adventure than kiss my love and go to sleep with him and my kitties at my side.

all the plans have been made, we know what will follow.  the cremation is arranged, the memorial is planned.  the business side of things are long ago planned, wills are done and business papers are signed.

the most important thing to know is chris and i are okay with the decisions we have made.  we have made this about us and not others.  it is about us and not just me.  yes we die alone and yet we can choose to die with love around us.  whatever you choose i hope that you are able to choose what will make your last moments here on earth the best moment yet. it needs to be the best for you and your loved ones.

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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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