we all get sad sometimes

February 27, 2015 at 2:15 am (Uncategorized) (, , , , , , , , , , )

most of the feedback i receive is so uplifting, supportive and means more to me than you can know.  there are times that i hesitate to voice when i am feeling sad.  to be clear, and this sounds odd even to me, i am rarely sad for myself.  of course when we have had family and friends pass on i feel sadness as most do for my loss. usually i find myself very quickly looking for the silver lining. there have been deep losses over my life time when it was difficult to let the sadness go.  the memory of those losses can creep up on me, and i allow myself to feel it in that deepest part of my heart the weight of the pain.

this has been a short month in days but not in pain.  of course there is always the physical pain. the injuries i sustained while in the army are with me daily. angina pain holds me in its grip and feels like it will stay forever. of course it helps to remind myself that physical pain will rise and fall so i just have to relax and let it flow out as it flowed in. my new device placement has caused discomfort. the doctor tried to move it over a bit and had to do some pushing that left my insides very tender.  some times it feels as though there may have been an internal stitch that pulls.  that has mostly passed but this darn thing will never be comfortable where it is. well it may be but i’m not:)

the psychic pain has been a bit more to carry than usual.  the bridge group he plays with on thursdays consists almost completely of women.  over time i have gotten to know some of these women and to even care deeply for them.  we try to get together for dinner after they play bridge and i so enjoy this time.  there have been days i wouldn’t have gotten out of bed much less out of the house if not for my anticipation of the good time and good company.  one woman brings her husband so chris is not the only guy, though i don’t think either of them would care if it is that way from time to time.  when we were returning from our trip his phone started working and i noticed he had a message.  we stopped to eat and he checked.  it was one of our friends telling us that another woman had passed.  she had been admitted to home hospice on wednesday and had passed on friday.  she was in her 90’s and believe me she had made the most of that time! she was a real character and had adventures few people would have expected from this petite, one armed, woman.

alice was not someone i had met in person but still cared for very much. she and her husband had a lot in common with the two of us.  we exchanged comments here, emails and a couple of phone calls.  again while we were away, another loss.  she passed on the sunday after our return.  my phone had stopped working on wednesday or even before maybe. there was bad weather all around us and we were in the mountains of west virginia so it was to be expected. we returned on saturday and attended our friends memorial the next day.  i have a picture of alice and for a few days i had been drawn to go back to that picture more than once. i thought i would call even if she couldn’t talk, i could talk to her husband. it was my plan to …… when we got home sunday i went for a nap and didn’t wake up until monday night.  this happens with heart failure, the exhaustion just takes over and there is nothing i can do about it.  for days i barely moved, my body was recovering from the drive home. i am ashamed to say that a week passed without me calling, something held me back. then i received an email letting me know that alice had passed. he had sent a text but it had not come through. how amazing he is to have gone through this loss and care enough to send a second message to me.  they have a beautiful story, it is not my story to tell but i will love them till i am gone.  i admire and respect him so.  he has given me food for thought and great advice. i hope we will truly remain friends until i am gone.

as hard as the loss from death can be i am going to share another kind of loss with you tonight that weighs on my heart.  all my life i have only wanted to be a good human being. everything else comes from that as i have said before.  part of being a good person, i thought, meant that when someone is your friend they don’t just drop you without a word.  over my years i have learned that is not so true.  we all do it, we outgrow the relationship for whatever reason, no harm no foul. except this time it feels like harm, it feels sad and confusing.  of course i know that life goes on and she wasn’t my only friend. somehow this feels different though. i was a friend to her when her own family didn’t want to be around her.  i tried to uplift her and be supportive. there were times when she needed financial help and i was there. whatever she needed i was there.  i always told her i didn’t expect anything in return and each time she told me how she would always be here for me and how she loved me like a sister.  well no one can step in to the shoes of my sister but i took her to be sincere.  maybe what makes this different?? a few months ago she “reconnected” with some friends she knew in school.  since that time things have been strained.  what seems funny to me now is people around me would ask about our friendship, we are very different people in many ways, and i would defend my loyalty to her.  the loss of a friend is just another death. that would bring the total to three in this short month.

i am sad for al and joe, they will miss alice (wife and mother), with all their heart.  i am sad for bronia’s family, they had her for a long long time, they lost their mother and grandmother. the loss of a parent no matter your age is a heartbreaking event. when i started writing this tonight i was sad for the loss of my friend, she will be missed.  i am happy for her and the new life she is making for herself.  i don’t fit in her world any more. maybe i never did and we just didn’t know it? tomorrow is her birthday and i wish her well and toast to her new life.  sometimes a new beginning, without old reminders of who we were before, is what we need.

i was given a new life and fresh start about 23 years ago.  it has been an amazing time full of love and life well lived.  sometimes we all feel a little sad, thanks to you i am feeling it less and less.

Permalink 19 Comments

britanny maynard replaced with the neighbors of the kardashians

November 4, 2014 at 4:48 am (Uncategorized) (, , , , , , , , , , , , )

it has not been more than 2 days since britanny maynard left this journey.  tonight i checked on the top stories and there was not one word about britanny, however, there was an article regarding the neighbors of khloe and kourtney kardashian in the hamptons.  seems they are not pleased to see these famous for being famous young women living in their neighborhood.

there have been times i have asked myself, has the world gone crazy or is it me?  this brave young woman put a face on an important issue.  “How It Feels To Die In Oregon.” was a great documentary and i remember feeling so inspired and hopeful that in time georgia would also have a similar law.

over time though what i noticed were how quickly people lost interest.  now i sit here wondering how this brave young woman could be so easily moved off the front lines to the back pages.  if you watch her video it is heartbreaking.  so much of what she said resonated with me and i would imagine with so many others like me.  she said she knew that her husband would grieve her loss, in time she wanted him to find love again, even have the children that they had planned for their future.

for myself i accept what is coming and feel no bitterness or fear.  as i have said many times my departure is no tragedy. of course my family will grieve and feel the loss.  however, in time they will move on and i will become an occasional story to tell.

this afternoon we were out running a couple of errands and having our usual chatter.  chris often forgets to tell me important information from conversations with family, friends and business related calls.  today he tells me while talking to kristen, the youngest daughter,he started planning a trip for spring break with the grandsons.  it goes without saying i am part of this plan he says.  i mention that realistically this is not a trip i can take, so he says his first priority is me and so he just won’t go.

although my heart melts at his love and consideration i feel it is up to me to now make him understand that he has to take this time for the grandkids now before they are too old to build a relationship with him.  luckily we have a wonderful relationship with kristen’s children but it has not been so easy with our other two who have been living in the bahamas.

they are always on our mind but their parents made the decision to live in maggie’s native home in the bahamas.  once a year they have come up to visit and so we have a relationship but not the one we would like.  the problem was i knew it was going to be a difficult thing to change his mind.

we went back and forth with the same stance. he saying he can’t leave me alone, what if something happened and he wasn’t here? me reminding him that children grow and we never get that time back.  plus! it is not like i do not have friends i can call to stay with me if i need them.  i watched this look go over his face, it is the face that realizes i am right.  so we put it on hold for a couple of days.

it isn’t that i want to leave while he is gone but i wouldn’t mind if it worked out that way.  so tonight or rather the wee hours i am thinking of britanny and how quickly her story left the front page.  i am also thinking i do not want chris to give up on living life to the fullest and being the grandfather he can be if he will let nature take it’s course and remember that staying home is not some magic spell that will keep me safe and alive.

being alive is experiencing all this adventure has to offer and not being afraid to take them.  recently our young friend liz bought a house and we are so proud of her.  this is a huge step for her. it is a huge commitment to where she is going to spend a large part of her life.  it is part of her adventure and she has had to overcome some fear.

my youngest sister is making a huge change in her life in just a few months.  she is going to take one of the biggest risks of her life to go for her dream.  i just feel so grateful to be a part of these huge life events.

one of my friends has struggled for years with an abusive relationship and then not being able to find a job.  she has found a place to live and two-part time jobs.  life is not easy but she is finding her way.

there are so many stories like these, events and changes that i am blessed to be a part of.  just as i think my world is growing smaller, i look around and realize that i have not been left behind. i still have family and friends who care very much about me and make the effort to be a part of my life even though it is difficult when i have 0 energy spend crazy long hours sleeping.  some days even though i am technically awake i struggle to walk without falling.

please don’t forget britanny or any of the others who have lived bravely and die bravely.  don’t forget about the masses who live with terminal or even chronic illness but push on to live the best life they can.  we will not forget you my loves….


Permalink 12 Comments

January 12, 2013 at 2:11 am (Uncategorized) (, , , , , , , , )

when hours turn into days, they seem to break me.  no sleep last night after a frustrating day of pain and itching.  today drifting in and out but never quite out all the way.  giving in to pain medication and not receiving the relief i had hoped for.   my eyes become like the lips of a woman in the sahara, so dry and swollen i expect them to crack open and bleed.  though i can’t hold my eyes open neither can i sleep.  the way my mind moves through this time restlessness.  why can’t i just drift off to sleep and give my body and mind a chance to re-energize?  it seems this would be the most natural thing to do.  the rash over my entire body constantly itches, burns and shows no sign of healing any time soon.  as i am trying to stay as still as humanly possible there is no way to not scratch. when i do although there is some relief of the itching my skin is bleeding and painful to the touch.  my mind tells my body to stay still, quiet your mind and let yourself drift. wherever your mind takes you, go with it, let it comfort you/amuse you.

the thoughts run the gamut of topics from – the meaning of life, or having a life of meaning all the way to the email received earlier from a dear friend.  my legs are so painful i can’t be still.  the only ease comes from moving them about.  all of this is going on and i am desperate to protect my love as he lies sleeping beside me.  it crosses my mind that there may be a time when we can no longer sleep together.  this breaks my heart.  the pain, the lack of sleep, even the final stages waiting for me don’t bring the deep sense of sadness that this one thought brings me.  strange to think this is what i fear.  it is not just knowing we may lose the intimacy i hold so dear. more importantly i am concerned i won’t see that it is time and  feel certain that he will not say what he needs.  the knowledge i could unintentionally make things more difficult for someone i love is difficult to bear.

my hope for tonight is very simple.  just sleep, even for a few hours.  longer term my hope is to recognize when/if the time comes to make the adjustments needed and not let husband suffer in silence.  tomorrow will be a better day and if i can’t be still tonight i will get up and sleep on my own.  he deserves a good night rest. he deserves a wife who knows he will not speak out and doesn’t take advantage of his caring.

Permalink 8 Comments

the expiration date is looming

January 10, 2013 at 1:13 am (Uncategorized) (, , , , , , , , , , , )

if i were a can of tuna no one would take me off the shelf.  heck i would put me back on the shelf.  when first given this news i remember thinking … well 5 yrs. isn’t tomorrow, the other thought was a rather defiant.. what do they know?  even  as someone who worked in research and having tremendous respect for data, i know that there is always an exception. well almost always. if you jump off a 20 story building i don’t think you are going to beat those odds.   so when i was first diagnosed with congestive heart failure the research  cardiologist brought out the reports to show me no one survives beyond the 5th year.  so that was 2008.  this is 2013, easy math.  i received this news on my birthday and that is 5 mos. from now.

a few things going through my mind as a result of this.  i want to have my defibrillator turned off. this is just a matter of when and not if.  if it is off there is a great chance i will just go to sleep and not wake up.  that would be my first choice.  there are other matters to consider and i feel that i have to make some choices on my own and not involve family or friends.  one of the blogs i read regularly is written by a woman whose daughter is dying. not just in the someday realm but in the very real now time.  tersia’s ability to share what she, her daughter and the rest of their family are going through has been of great benefit to me.  not only have i come to care very deeply about them i have come to see another side of this coin.  what we the dying choose greatly affects those we love and care for.  vic does not want to be sedated during these final hours and i can certainly understand how she feels. i might have even made the same choice.  now i am going to make sure my husband and family know that i do want sedation.   i am making this decision now in my present frame of mind.  who knows what i will think in the throes of my last hours?  it seems easier now to let everyone know my choice and i think it will be easier for me later to have in mind and abide by it.

other blogs have touched me and given me insight for which i am grateful.  when reading of a husband who is much-loved and loving , drives his beloved to tears, my heart has broken for them and i felt sure this loving husband would not want to cause such pain.   as much as i made every effort to anticipate issues that would create discomfort or pain, there has been much to learn from these generous of spirit women.  in writing for themselves they have made my path smoother.  in their pain, hopefully, my own family will endure less.  i want my family and loved ones to know, although i would prefer to die at home, i want what is best for them.

it is obvious he is thinking about this expiration date.  he makes as many plans as possible.  after december we had agreed to take a break and get some rest.  right away he started making plans and is pushing to make reservations over the next couple of months.  for a healthy person a trip every 6-8 weeks would be fun and it is fun to think about.  when it comes time to go, the reality of how tiring it all is comes crashing in.  i will try to make some of the trips and add to our memories, we have some friends coming from out-of-state in a couple of weeks.  i am looking forward to that.  we may go away for valentine day and if we are going to cumberland island it will need to be soon.  as far as the expiration date goes i know that it is down the road, i just don’t know how many curves are going to be along the way.

Permalink 8 Comments

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.

Permalink 7 Comments

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. 

Permalink Leave a Comment

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.

Permalink Leave a Comment

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


Permalink 2 Comments

instead I am buying curtains

April 26, 2012 at 2:01 pm (Uncategorized) (, , , , , , , , )

there is quite a history as there always is between mother’s and daughter’s.  as my youngest sister talks about our mother and we have agreed to her experience being different from mine.  that does not make mine less true than hers and there has never been any resentment on my part that there is this difference.  there were in fact times that my only coping mechanism was to think someday she would be sorry. the mother not the sister.  it never really came to pass although it was close once i think.  there was a letter that sort of started with how she may have done some things then took a sharp right turn to somehow she is the wronged party as she has been put in the position to admit to such wrong doing. it was laughable. and so i did laugh. somehow she did it again, that never really admitting to what was done and turning it to poor me look at what you expect from me.  first let’s be clear there was never a request for such admission as it was as expected to be and was most insincere.  the younger sister hasn’t been the one to express feelings of regret, remorse or such emotions to my knowledge.  this is a hard time for her and yet it would not seem that way to someone who does not know her.  the middle sister cries a good game but is not the one prone to these sentiments either.  the odd thing is they would most likely see me this way and themselves differently.  not that the different opinions would make any of our truths less so.  it would not surprise me to know that we have all cried over this woman for different reasons.  A, had from the outside a great childhood. M, would say that she was abused from day one and would not be far from the truth, yet she gave a good deal of abuse in return. 

there is nothing here of bitterness or recrimination. she is who she is and knowing her biggest deepest fear is to die alone gives me such sympathy, empathy and insight.  she is after all just human like the rest of us.  she is frail and vulnerable.  this is how it ends for so many of us.  we fear this and yet we create it.  one daughter 2 hours away, one 2,000 miles away and the other so full of hate she can not be reached at all even in the next room.  yet here we are, one daughter drives the 2 hours, the other calls and sends the money needed for her comfort, the third is forced to share a home with her and see her own son love this woman without limits.  he has grown to be a man of great kindness who was not treated with such by his mother or grandmother.  the grandmother used him for her own end and yet in his innocence he does not know this.  he is considered by our society to be the damaged and less than. he is considered by his aunt and uncle who live 2,000 miles away, admirable.

the mother has decided to forgo dialysis.  she is receiving the benefit of hospice care. the nephew is being guided by professionals who do not know or care what kind of woman she has been. the aunt and uncle speak to him, encourage him, let him know that they know how difficult this must be.  the aunt cries when she is alone and buys curtains for the mother’s room at the nephew’s home.  it is all i can do for her now. 

what i hope to do for others is bring some understanding to what can be expected if you or someone you love is dying from congestive heart failure and kidney failure.  here is some information I have put together for your convenience.

 Death from kidney failure is generally considered a gentle death. In fact, many physicians and nurses would choose to die of kidney disease rather than any other illness. Most symptoms of kidney failure can be easily managed or suppressed and pain is rarely a problem.

Physical Symptoms of Kidney Failure

The kidneys filter waste from the bloodstream and regulate the amount of water contained within the blood. When the kidneys fail to do their job, the waste accumulates in the body. This build up of waste may cause several symptoms.

Energy Level: The first thing you may notice is a loss of energy. You may become more sleepy or lethargic. Your sleeping patterns may change; you might sleep more during the day or have difficulty sleeping at night. As things progress, you will sleep more and more and eventually lose consciousness altogether.

Mental Changes: You might notice mild confusion early on that may progress to disorientation, anxiety, or delirium. Any discomfort from these mental changes can usually be easily managed with gentle reassurance from loved ones and health care professionals and the use of medications, if needed.

Muscle Changes: As minerals build up in the blood, you may notice muscle twitching, tremors, or even seizures. Medications can be given to prevent seizures and treat them if they occur. Gentle massage can relieve discomfort caused by muscle twitching or spasms.

Skin Changes: A build up of a chemical called urea in the blood may cause your skin to itch. You may even develop a fine white powder on your skin.

Appetite and Weight Changes: As with any serious illness, your appetite will decrease and may cease altogether. There is no need to force yourself to eat if your body doesn’t feel like it. Doing so may only make you feel worse. You may lose weight as your appetite wanes or you might gain weight as your body retains extra fluid. If you are not producing much urine but still drinking fluids, you might notice your feet, legs, abdomen, and other areas of your body swell with excess fluid.

Changes in Urination: You may pass little or no urine at all. If this is the case for you, limiting the amount of fluid you drink may improve your comfort by decreasing the amount of excess fluid in your body. As mentioned above, excess fluid will lead to swelling of the feet, legs, abdomen, and other areas of the body. The fluid may congest the lungs, making breathing difficult, and strain the heart. If you are not producing any urine, death will usually occur quite soon, usually within one to two weeks. If, however, you are still producing some urine, you could live much longer.

Breathing Changes: The build up of acids in the blood may cause changes in breathing. You may breathe faster and more shallow. This breathing is generally not uncomfortable. If fluid has accumulated in the lungs, you may have shortness of breath,

Death is rarely a welcome guest but death from kidney failure may be the most gentle and comfortable death any of us could ask for. If you have further questions about what to expect during your particular illness, speak with your kidney specialist or hospice physician.

add to this vomiting in the morning. not sure why this one is not at the top of the list for early symptoms of kidney failure.  for months prior to my failure each morning no matter how I changed my routine, i would throw up.  finally i saw it somewhere, but not until after i had been in intensive care with the kidney failure.

please remember I do not give medical advise here.  anyone who has experienced symptoms and has questions should contact your physician.  never substitute any advise here for what you think is the right thing for you or for advise given by a healthcare professional.

Permalink 1 Comment

the queen is dying

April 21, 2012 at 1:03 pm (Uncategorized) (, , , , , , , )

for many years the mother has been called the queen mother.  it was a bit of a joke and kind of stuck.  strange to think that she was diagnosed with congestive heart failure after me.  now she is in the final stages and there is much yet nothing to do.  it has been arranged for her to move in with my nephew.  he is such a good and kind spirit.  he has always been willing to do anything for her.  not many of us have someone who devoted. 

the dr says she is in kidney failure and though he is going to give her some new med to see if it will help he did not hold out any real hope to her.  she has decided against dialysis which i agree completely with.  it is not something i will be doing either.  strange to have so many of the same symptoms and yet i seem a bit behind the curve from her.  i have been on stronger diuretics for months and they are not working that well.  the fluid retention becomes confining and uncomfortable.  the swelling in the feet, ankles, hands are what most people think of but this goes to a point way beyond those.  all the joints swell so you can’t bend your legs, my abdomen becomes so swollen I look 9 months pregnant and have the same problems getting out of a chair or sitting position.  the feet swell so badly it hurts to walk.  it is only going to get worse.

i can not talk about her without thinking of my own situation.  i can not think about her without thinking about my own situation.  is that selfish? it is not meant to be.  it is like being beside a car that is out of control and you are making all the same moves.  you can’t help but wonder if you are going to come to the same end as the other car. 

my sister Angie is sometimes seen as a party girl or flighty.  she can come across that way.  indeed i have reminded the queen mother how her daughter has a very responsible job and has made a good life for herself.  in times of the rubber hitting the road she is firmly on the road.  she drove to Sacramento from san francisco prepared to handle anything that comes her way.  she is organized and has a plan.  we were stunned to hear the dr had not prescribed pain medication, hospice had not been notified, and the papers for a hospital bed have not been signed.  when i spoke to our middle sister we got the ball rolling for mother to be at my nephews ASAP.  for some reason that was on the calendar for may.  my nephew was glad to have the encouragement and backing needed to get her moved.

what is a bit sad is when i speak to her she can not remember what has been said.  “mom you are not to worry about anything, Angie is coming tonight.”  mom: what am I going to do with all my stuff?  how will I get it in storage?  reminding her what was just said she confides she can not remember much at all and not for very long. this worries her and is embarrassing.  i simply have her write down what we are saying and read it back to me.  ok now she can read this as she needs to, if she remembers to.

Angie is on the case this morning and i feel sorry for anyone who gets in her way.  she can be a real ball of fire!  we are doing what we can from Georgia. called the funeral home and are setting those details up.  really the only thing i can do is be moral support and a sounding board for them that are “boots on the ground.”

heather just called and once again my weakness comes when people are kind to me.  heather and Kristen are so dear to me.  it has been my great fortune in life to have them as family.  all of this sort of reminds me that i want to get those videos done. it is important to me to pass those on. 

feeling a bit overwhelmed, tired and having angina pain.  i want very much to be as much support to my sister as possible and that means putting aside my own looming health problems. 

hope for today is that she will not suffer any more than she can bear. hope for today is she is prepared in her mind and heart to move on to the next adventure.  hope for today is that my sister knows how much she is loved and admired for her ability to do what needs to be done and gauge her own needs.  hope for today is to treasure each moment today.

just got a call from angie and here is the beauty of hospice! she called them as planned last night and they are going to take care of everything.  she was trying to call drs. and get the bed along with a dozen other things. after talking to the woman at hospice (an actual person answered the phone) she can put that stuff aside and concentrate on spending time with her mother.  hospice is going to call her dr and get the order for hospice care, they are going to arrange for the bed, they are going to make sure she has pain meds and they are going to make sure her wish to not die in the hospital is honored!!  thank you hospice.  thank you hospice.  angie is going to take mother to get her hair washed, then for a drive and anything else she feels up to.  the move will take place tomorrow and now it is my turn.  i have been asked to intervene as the “oldest” sister.  this kind of situation brings out the best and worst in people.  unfortunately it is bringing out the worst of middle sister.  i will make the call, i am the oldest and beyond that it is the least i can do.  angie and i will get through this, with help from loved ones, friends and now hospice.

Permalink 1 Comment

Next page »

%d bloggers like this: