in the land of exhaustion

April 1, 2014 at 2:20 pm (dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)

blogging from the land of exhaustion is more difficult than i have words to convey.  even keeping up with comments and reading the blogs i love is more than i can expect of myself on most days.

my eyes are open but my body argues that it is not time to get up.  need to go to the bathroom? just wait a few minutes, the urge may pass and i can just keep lying here.  stay still and you will be rewarded with nothing more than the pain in your entire body.  i am now paying for falling off of that cliff when i was young and dumb.  that is not the only pain though.  some days i can literally feel my kidneys struggling to work.  they let me know with the pain in my back and occasional fever that they are doing their best but time is not on our side.

my darling man feels lonely and that hurts me more than the physical pain.  i encourage him to do things without me but he will not have it.  so i will move this reluctant  body to the living room.  in the living room we live, in the living room we are not dying.  just being in the recliner next to him is enough for today.  some days he wants to be out and i will move this weary body and mind to go with him.  all he needs or wants from me is  a few hours out. that is not so much to want.  it is at times more than i can do and he waits for the time when i manage it.

planning to visit charleston in a few weeks, i love seeing our family and spending time with them all. there is so much energy and love there.  i ask myself how i will do this but my mind answers “i don’t care, we just will” and so we will.

in the land of exhaustion i write a blog when i can.  plan trips with him when  i can.  love and am grateful for all my blessings.  in the land of exhaustion i have to stop now and try to use what little i have to give to give this moment to him.  in the end that is what we have, our moments.

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stop and ask yourself

March 26, 2014 at 10:00 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, no more tests, Uncategorized)

today i stopped and asked myself if this is “quality of life.” yes i am getting out to visit friends and run errands. this has actually been with more energy than even a few weeks ago.

i find this reminiscent of a pregnant woman “nesting” just before her baby comes.  i can sleep at the drop of a hat and yet i can meet a friend for lunch. of course i am dizzy and at times fear i may just collapse on the floor.

i can only say that most of the symptoms are from the low blood volume and severe anemia.  what did not concern me yesterday now concerns me greatly. not to pursue this with vigor now seems fool hardy.  the abdomen pain i am experiencing has increased and i don’t believe that is a good sign.

my mind wanders from get this taken care of now to don’t over react.  in time i will get the appts i need and surely someone will say how now is the time and let’s get going here.  i guess i want someone to say it is nothing to worry about but let’s get this taken care of.

sometimes we need to stop and ask if now is the time for action or is it better to wait?  let’s not jump to conclusions we are told and that may be the best advice at times. then how do we prepare ourselves to act when needed?  at these times we can turn to family and friends, listen to how they are feeling and any suggestions they may have.

when lunching with a friend i admire greatly, we spoke briefly of my decisions that lay ahead.  she asked if she were being pollyanna thinking that it will be an easy fix.  there are some other, more serious conditions these symptoms may be signaling.  while agreeing with her that looking at the most simple answer first is the way i like to look at things.. guess it goes back to those nursing and psych days.

what she did say that stuck with me was, she thought it should be more urgently cared for.   i don’t like to make a fuss so things have sort of fallen through the cracks and no one seems to get that this is becoming a crisis. it is time for me to step up and make some calls. it is up to me to get the care i need and if i need it sooner than later i am the one to make that happen.

guess i will not just fall on the floor and stay there. guess i will do what needs to be done and do it now. gotta go get some rest so i can get me and other’s moving tomorrow.  hope you have the moon and stars tonight, make a wish even if you don’t see a falling star.  it can still come true. you just may have to get some rest and then make it happen!

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a soft place to land

March 22, 2014 at 5:12 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, support system, the dr. says) ()

he does so much for me, though it is hard to say what i value most, i believe it has to be that soft place to land.  since we first started dating he has been the one i could go to with the knowledge that i would be embraced and supported, no words had to be spoken.

in my opinion, as we get older one of the most wonderful things we can have is a soft place to land.  whether that person is your life partner, family or a dear friend.

the physical landing i am blessed with is not the only loving, supportive soft place.  it came rather unexpectedly, first words of support and later words such as my dear friend, love and hugs. yes my friends you have blessed me with an alternative soft place to land.  some of you are going through almost the same situation i am, some have lost loved ones or are in the process of losing someone dear, some deal with mental health issues that make life more difficult than we can know.  but there you are, telling me you care. telling me i am accepted for who i am.

having the endoscopy and colonoscopy would identify where the bleeding is ( most likely) and then it could be stopped.  i see the benefit of having these tests.  i know i am not going to let anyone biopsy my liver or kidneys. there is no point. psychologically and legally i believe dr’s, although they care, are mindful of not being sued and may feel guilty if they are not offering “something’ to a person in my situation.

tonight when i have doubts about my decisions i am grateful for the comments that offer support and humor.  i am mindful and grateful of all you give me. to know that i am not alone in these late hours means more to me than you know.  i admire and respect that given you have your own life that you are trying to live, you take the time to catch me so i don’t fall.  from my heart to yours i want to acknowledge and thank you all for being a soft place for me to land and i hope that i am able to offer the same for you.

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distractions

March 21, 2014 at 12:14 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, no more tests, the dr. says)

most of us have them, distractions that is.  i am about average when dealing with distractions.  i seem to be able to focus on what needs to be dealt with and in an orderly fashion.  this is most likely due to my nurses training, being in the military and being a mom.

if we let them, distractions will drown out the cries of more important tasks.  being human, we the average, will set goals again and again with the desired outcome to be fewer distractions.  some, like chris, thanks to ADD are in an almost constant state of distraction.

pain can be a great distraction.  just day-to-day life when you are in chronic pain can be a distraction.  add to that the recent events in our life, chris having cataract surgery, my own hospitalization and some extensive business demands.  babies being born, birthdays, daily eye drops for him and decisions for some resolution to my own situation must be attended to.

i mentioned in a previous blog that my hemoglobin is now at 7.0 when the norm is 12-15.  my number had been 7.2 when i was admitted then declined a bit further.  at this point my own dr is saying i have internal bleeding and it has come time to take action.  the first step of course is an endoscopy and colonoscopy.  this seems like a no-brainer to some, however, i made the decision a few years ago to not have any further tests that were invasive.  the g.i. dr who spoke to me in hospital wanted to do further testing of my liver.  bottom line he would be able to possibly tell more about the extent of the  actual liver disease while offering no relief.

liver disease is part of congestive heart failure.  there is nothing that can be done to repair or even stop what is happening. further tests just feel like a violation.  despite the chronic pain and effects of congestive heart failure my quality of life is quite good. so the question became do i have these other tests? do i let the dr’s explore what may be causing the internal bleeding?

more importantly if i do this then where is the line? these are questions i wanted to ask myself in the quiet of the mountains.  these are the questions i wanted to ask chris.  we needed a couple of days without distraction and that is what we did last sunday.  we drove to the mountains of north carolina.  a few years ago we stayed at the inn on the biltmore estate and it was so serene and just lovely.  it is only a 3-4 hour drive from our home. we wind through wooded lanes, off the beaten path.

monday i will be calling to set up an appt with the dr my primary care dr has recommended.  we will take it one step at a time.  i only hope at this point that it will be productive.  since our return i have been experiencing such a level of abdominal pain not before experienced.  this could just be a distraction. we will find out.

inn on biltmorethe inn on the biltmore estate where we stayed.

 

 

 

 

lobby of inn

 

 

 

 

 

 

 

 

even on an over-cast day the sun managed to shine in one the lobby full of comfy old couches that provided private nooks for reading or conversation.

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no one else

March 13, 2014 at 4:04 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, support system, the dr. says)

chris had cataract surgery today. we started doing his drops on monday. it sounds easier than it is though.  every time i tried to get him as comfy as possible. the pillow just so behind his neck supporting it so the head would naturally drop backward.

almost immediately he would start saying “wait, wait, wait a minute.”  i would wait.  are you ready honey? ok go ahead. he squeezes his eyes shut so tight that i cannot pry them apart. sweetie you need to relax, what can i do to help?  just give me a minute. so about 5 minutes go by and i say “wanna try again?”  ok.

when we are done and he is laying on the bed letting the eye drops settle we joke a bit about the challenge.  he is looking at the ceiling and says so softly i almost miss it. “i will be a mess if you leave me.”  i start to re-assure him that he will be fine. he stops me. “no, i will not be fine.  i will be a mess and you won’t be here to fix things.”

i am here now and that is all any of us know for sure.  this isn’t what he wants to hear but it is all i have.  my love will be with him for his life-time. other’s can put in his drops if needed.  other’s can even love him. no one else can love him the same as me because we have a history that no one else has.

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it’s just an opinion and everybody has one

March 11, 2014 at 10:14 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, peace of heart, support system, the dr. says, words of wisdom) ()

last weekend my sister posted a question regarding suze orman. she wondered if anyone else found her mean-spirited (my words not hers).  angie stated she had stopped watching her when she really turned on some guy and pretty much told him his situation was hopeless.

i had seen part of the same show angie was referring to and had not finished watching.  i have not watched her for years.  not that she isn’t very savvy financially.  she just doesn’t know how to relay her message in a kind and caring way.  the times i watched her i believed she cared about other’s climbing out of the hole they had dug.  however, over the years her message has taken on a hardness and at times she ridicules those who have come to her in great need.

at the bookstore and costco i am aware of all the self-help books that cover a wide range of topics.  then there are the political books and religious guides.  some of you are going to be offended by this and for that i apologize.  i can not let that keep me from talking about my truth.

in the end these are all someone’s opinion. even books based on science are and can be tainted by the author’s point of view.  there is a better chance that science won’t be biased but most of us don’t want to read science alone.

we want to read books that support our way of thinking not those that challenge what we think is true.  over the years i have been a proponent of personal truth.  my grandmother started explaining this to me before i could really understand what she meant.  this woman who raised me in abject poverty with only a second grade education, will always be the wisest woman i have ever known.

her way of looking at the world brought her peace and contentment.  she shared this with me and i believe it has been my saving grace.  it is all opinion and that person’s truth.  we can take it or leave it. how simply beautiful, respectful and a peaceful way to live.

she passed from the same heart disease i now live with.  if i am moving down this path with more ease than some it is thanks to her.  if i am, and i believe i am, moving down this path with ease it is thanks to my family.  to have a family that loves, cares and understands how you need to make this walk is a great gift.  to have friends, including my friends here, that get you and love you regardless is a great gift.  to have friends who share their experience with you and trust that you can care about them regardless of your own situation, that is a gift.  for women who play bridge with your husband and have become shining examples of how to do this with grace, they are a gift.

suze orman could learn so much from them.  all of these people could teach her how to be supportive and caring while being an example of success.  you never need to belittle another human being.  if you want other’s to learn and hear your message be an example through love and kindness.  that is my opinion, love and kindness.  i have been blessed with these gifts from other’s and hope to pass it on.  what will you pass on? how will you share you wisdom? i hope it is with kindness and love.

my grandmother as a young woman.

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but first i have to help take out the recycle

March 11, 2014 at 9:33 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)

some days i don’t feel well. maybe i have a tremendous amount of pain or just have so little energy i am a puddle on the floor.

my eyes open and i realize it is early. i also realize that i can get up fairly easily.  this is when the list begins. oh the list may form on other days but i know the list will wait for a day like today.

mail a package to my granddaughter-in-law and hope she gets it before the baby comes in just a few days now.  pick up a prescription. call and make an appointment. start putting in eye drops for chris, he is having cataract surgery in a few days.  the windshield has a small ding that will need to be stopped before it gets worse.  don’t forget we need to go over to the rental, put up ads online.

new carpet will be needed for the rental. and so it goes as it does for you.  the difference maybe is that i am dying.  the thing we have in common is as long as we are living things will need to get done.

these are some of the things i let worry me.  who will make these lists and make sure they are done?  if left on his own he has a difficult time finding direction.  this is one of those things that i love and become frustrated with at times.  reading, drinking coffee, watching old movies and playing bridge or poker are much higher on his list than a clean house or garage.  it has fallen to me to be a bit of a taskmaster.  at times he will balk at this, i have found a way to make him laugh and at the same time see the need to put those things aside for a moment.

he is a big “recycler” and in california it was so easy.  they gave you plastic bins that were labeled and all he had to do was sit them on the curb once a week.  in georgia he gathers the recycle in our garage, no bins, just sort of thrown in the area beside my car. when i can’t take it anymore he loads it up in the rav and takes it to the recycle facility.  there he has to sort it again since he has put it all in big plastic bags.  the trick here is he has yet to take ALL the recycle.

i wake, it is early, i am making my list.  i am dying from heart failure.  we were reminded a couple of weeks ago that my time is winding down.  but first i have to help him gather and load up the recycle.  as long as we are living, we the living will have chores that need to be done.  i don’t mind, i don’t want to run out of errands to run or the simple things that give me purpose in life.

058at the most photographed view in yosemite. they were the view i cared about most.

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what they say is true

March 5, 2014 at 6:00 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, peace of heart) (, , )

“you can never go back” the rest of that quote is “home again.” With mixed feelings I tell you this is one of the lessons I came back with from our trip to California this past Christmas. We had such a wonderful time and I am going to include some pictures here. If you would like to see more I am posting them on my facebook page and you can friend me to see them.

We arrived in Sacramento, California rather late on Saturday night. It was great to be back and immediately felt like coming home. Things went fairly smoothly when getting our rental car and then checking in to the hotel downtown. Downtown Sacramento is nothing like downtown Atlanta. On Sunday we or rather I, slept in so I could be ready for dinner with friends. One of our favorite places to eat is a Chinese restaurant, chinois. In the past it was great food and great service.

for some reason i could not get the pics to load. i am sorry for this and if anyone can give me some pointers i would greatly appreciate it!

In the first picture is alexxa my heart child. That is a long story but she is much loved by us and it was beyond wonderful to see her again. Many tears were shed in this reunion. She has a very kind and gentle spirited partner mo who also came and we were happy to meet her. Alexxa has custody of 4 children through family situations that I will not share here. They were so open hearted and loving it made me sad to think I could not be present in their lives. It would bring such joy to be closer to this family, to be in their lives in a real and meaningful way. That is not to be so I will just hold them in my heart.

The second picture has our friend mary, I missed her husband Gregg who was to her left, and dave. Dave and chris have been friends for almost more years than I have been alive. They manage to keep that friendship over the years in spite of the miles between them. Mary and Gregg have been our friends for about 20 years. Gregg has gone through some horrendous health issues and continues to suffer as a result of cancer of the throat. Funny to see this retired history professor who used to insist on being called dr as he had his phd, being playful with the kids who were with alexxa. The children were so well behaved and a delight for all of us adults.

As much as we loved seeing everyone there is this realization that things have changed a great deal. No one was the same as they had been. This is actually a good thing. I was so proud of alexxa and the woman she has become. Dave seemed more at peace with his life than I have ever witnessed. Mary and Gregg also seemed more relaxed as evidenced in their interactions with the children.
Yes things were very different. Not in a bad way at all. We were happy for our friends and loved ones that their lives were on track and rewarding. If we moved back our relationships would not be the same as they had been 10 years ago.

It has been 10 years since we moved to Georgia. There have been many times over the years that we have talked about going back. Times when we felt we just don’t belong out here. Our politics and opinions are so different from the people who live here. Those are the times I have to start making a list of reasons we are happy here. The great gift from this trip was to really understand that we could not go home again because it was no longer our home. This is our home.

Chris has asked me at times do I miss this place or that, calling them home. My reply is always the same and I believe he is understanding that more now. My home is him. If I am with him then I am home. Home is not a physical place; it is a place in your heart. A place that brings you comfort, joy and contentment that is home. If I am with him then I have all of those things and more. If I am in his arms I am loved and safe and at peace. California is no longer our home. Georgia is our home. He is my heart and soul home. We are home when we are together.

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what’s in a number anyway?

March 2, 2014 at 2:47 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living will, living with dying, medical power of attorney, no more tests, rights of the dying, support system, testing for kidney failure, the dr. says)

yesterday before i was discharged the GI dr came in to see me.  he was being consulted to determine where i am losing blood.  at first he was smiling, bordering on jovial. then he says the familiar words “has anyone told you that your liver is cirrhotic?”  not meaning to, i laugh. he becomes not so jovial.  i explain that yes we have known that for about 3 years. one of the first tests, aside from blood work, i had ordered was a ct scan of my abdomen.  to his surprise my liver disease is much more advanced than my blood work reflected. this is no surprise to me as i have always been that way. years ago my white cell count had been perfectly normal even though my appendicts was  ready to burst.

he wants to know what i am doing about it.  when i tell him nothing he starts glancing at chris as though he will say something that makes more sense to him. that is not going to happen.  i explain that we have decided i am not going to have any more invasive procedures or tests.  if there is something you can do about it that would make sense wouldn’t it? he is asking and searching our faces, thinking this will make us come to agree with him. the silence grows and he is now saying that of course there is nothing anyone can do to “cure” my deteriorating liver but that is not so important to him is it?  for him  there is a disease so i must do something in response to that.  do nothing? that is not what he is trained to do.

once he realizes we are not going to stay and engage in more testing he is gracious. he smiles again and says he wishes us the best. let him know if we change our minds. if we want a dr closer to where we live he can recommend someone.  he is going to let the hospitalist know that i can be discharged.

earlier that morning met dr paul.  he is an exuberant youngish man who has all the answers.  this dr who makes the decisions over who comes and who goes clearly loves what he does and appreciates his status.  he has come here from another continent and is now living his dream.

dr paul stands over my bedside and insists i remain laying in bed.  he begins to outline all the testing i need.  we listen patiently. when he is finished i let him know that we appreciate all that has been done in the 2 days i have been in the hospital.  i look him in the eyes and say i am ready to go home.  yes i say, nodding, i understand everything he has said to me.  for the first time he acknowledges my love and asks how he is related to me.  when told he takes a tactic.  he will convince the man and i will follow. not so my husband assures him.

it became clear to me when i was being admitted that chris and i have more clarifying to do.  one of the routine questions i was asked, while filling out admission papers, was regarding an advanced directive. then i was asked if i was a dnr (do not resuscitate). i said yes, he started asking questions. something he does, that not everyone understands, is go in to detail that can be overwhelming.  there is seldom a simple answer for him.  over the years i have learned when to settle in and listen.  other times i know that we will have to save the discussion for later.  in this instance i started to explain the question so we could give an answer we agreed on. immediately he started coming up with different scenarios, any possibility.  i knew this was going to be a conversation for later.

i consider this sort of a dry run in some ways.  he now understands that being in the hospital is not where i want to be and why.  i know that i am going to need to give more time to explaining what the living will can do for us.  other family members are going to need to be a part of the conversation in order to give him the support he is going to need in the future.  as soon as the dr’s started asking us to make decisions he became withdrawn and like the deer in the headlights.  it would have been easier for me if he had been able to show more support.  not that he wasn’t supportive of me, he just couldn’t stand up to the professionals.

one of the things that sort of surprised me was the out pouring of love and support from family and friends.  my friends here have become such an important part of my life.  the words of encouragement, support and love were heart warming.  thanks to technology i was able to see comments and facebook comments.  if i had been there longer i would have taken out the computer and talked to you.  knowing you are on this journey with me eases the way.

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it does not come naturally

February 23, 2014 at 10:29 am (death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, life is random, living with dying, the dr. says)

i so wish that writing about myself came naturally. it would certainly make writing this blog so much easier.  it isn’t just writing though, i don’t particularly like talking about myself either. i like listening. that is what made me a good nurse and therapist.  there are times i try too hard to be social and that can be awkward. i end up feeling like a bore.  i am happy to sit quietly for hours.  sometimes i realize that this attracts people who love to talk and some like very much to talk about themselves.

understanding where a behavior originates can be helpful when wanting to change that behavior or for me to simply explain to myself or other’s why i am this way.  when seeing patients it was usually clear if they needed to know the origin in order to make changes.  psychoanalysis never appealed to me though.  to listen for years to the same conversation with the hope that eventually the patient would realize when, where and under what circumstances a behavior or habit started, was my idea of hell.

insight is a beautiful thing though and so i started thinking about my avoidance to say too much about myself.  the quick answer was i have always been this way and to a certain extent this is true.  my grandmother used to assure adults that when i had something to say, i would say it.  i grew up keeping quiet about things as not to upset my mother.  if she thought i was happy and asked me questions i knew it was going to be trouble.  i was a very serious child. laughter could mean her coming after me to make sure i had nothing to laugh about.

so the habit was formed. as a nurse and a therapist we do not share about our private lives.  our job was to be caring and not cared for.  this was our patients time to be heard.

i will admit that once i started writing this blog it became easier to write about myself as this is for my family and friends to have a record of this time.  to share with my grandchildren what i want them to know, when they grow up, who i was and how i coped.

after being away for a bit i am finding it hard to get back in the groove.  the trip to california was way too much and showed me what my limits are. even now i am not sure i have recovered nor am i sure i ever will.  would this change have happened regardless? my guess is it likely would have.

i have missed coming here. it was becoming more enjoyable and i looked forward to those who take time from their own busy life to listen to me.  of course my love listens to me. it took quite a bit to trust that he wanted to hear what i have to say.  he is so fascinating.   after all these years i can sit and listen to him as long as he wants.

or we can sit in quiet, just content to be in the same room with each other.  it is that way with my sister as well.  she can make me laugh til i cry, we can just sit and hang out.  my step-daughters are the same way and i can’t tell you how much this means to me.  i just started thinking of the people in my life that i have this with. my guy joe, we worked together in calif, never balked at the times i would just come to his office and say what i had to then say, ok I’m done.  i would then get up and walk away.  or i might come in and sit knowing he would start telling me stories or share information. i loved listening to joe. still do…

i have no doubt that the people who are my friends are so in spite of me and not because of me.  my family accepts me as i am and that is a gift above and beyond:)  hope i haven’t droned on too long.  you are all so kind and gracious.  i appreciate you, i love you and know i am blessed.  the whole heart thing is going as well as can be expected.  so far it is still beating.  sometimes i wonder how it does it but mostly i am just in wonder.  i have never been happier than i am right now.  life is just so good.

 

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