what i see

December 5, 2012 at 12:45 am (ask the doctor, being remembered, dying, hope, how does it feel to die, living with dying, road trips, the dr. says) (, , , )

what we see, really see, is up to us.  as we were driving home, less than a mile from our home, i looked over and saw what i have seen for the 5 yrs. we have lived here.  there are 3 buildings not far from the side of the road. one is a small shotgun style home, the second looks like a one room shack, the third is a metal  storage shed that has been converted to a home.  they are all very close together and through the seasons i have watched the people who live there coming and going.  i have wondered how they live, how do they do it?  these are not homes with central air, the converted storage shed concerns me.  i have seen the person who lives there and i wonder how they manage. they can’t have running water, heat in winter and air in the summer.

as we drive by i observe that it is remarkable our home, our world is less than a mile from the world the blue house people live in.  do you think about them and wonder what their dreams were?  the reply comes, no, can’t say that i have.  we both look at those little homes everyday we drive down that road.  i see what he sees.  yet there is something amiss here.  he is kind and generous, he is loving and socially aware of what goes on in the world. he does not see what i see.

you may ask, and well you should, what has this got to do with death or being terminally ill?  i have been asking myself that very thing for over an hour. i have sat here poised to write one thing and yet this thing keeps coming into view.  let me see if i can make the connection, bear with me please, i am not a great writer.  i am not a great speaker either so that would leave mime but you wouldn’t be able to see that would you? no, you would not see me.

we are to the universe what a grain of sand is to us.  the very thought of the entire universe is too grand to see in my mind. it is limitless and so it makes sense we would not see the edges.  the world is more visible to me, in my mind.  the world is such a vast destination.  so many people, cultures and countries. some i am sure i have never heard of even though i am considered a world traveler.  i drove across the united states, nearly three thousand miles.  even then i knew i was only seeing a small part of our country.  georgia is a beautiful state.  i was stationed here when i was in the army.  my oldest step-daughter lives in atlanta, the youngest in charleston s.c. so off from sacramento california we go to be with our family.

local people speak of this county or that ( i think there are a million or so here) and i still, after 8 yrs don’t know where they are talking about.  if we get down to it there are places here in this small town that i have not been to. some of these places we have driven by or maybe even been to and i did not really see where we were.  for some reason i see people not geography.  it was a joke in my platoon to never give me the compass.  most times i could find my way but not by the most trusted tool we had.  i saw a tree with a scar on it or the rock that looked a bit like my dads nose.

so as we sit at the local eatery and the man across from me cries, i see it.  from the moment it began i saw the familiar signs of what was coming. at first i have to confess i was a bit confused and not sure i was seeing what was right there for all of us to see.  afterward i asked, did you see him crying?  he answers he saw something but wasn’t sure what it was.  we are so used to seeing a woman cry that we are found wanting when it is a man.  whenever we go to dinner the questions are the same, what do you see?  what do you hear?  i wonder how can a room full of people not see this man’s pain?

i see the stars and know they are part of the universe.

i see other countries and know we are a part of a whole world.

i see the city limit and know that i am part of a country, a state and a town.

i see you and i see a future. a life with many years to live. a life with hope and dreams.

i know what i see, in the world, the country, my home and in your eyes.

the question is what do you see and do you really see me?  i will one day be as intangible as the universe, the stars and even the people down the road.

i want, no i need to know that i was really and truly seen. i need to know that i will be remembered.  i don’t want to be the people down the road who are never really seen.

i wonder if the blue house people want to be seen or are they happy with just seeing their own world?

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five regrets of the dying by bronnie ware

November 25, 2012 at 9:52 pm (being remembered, bronnie ware, death with dignity, five regrets of dying, living with dying, the dr. says) (, , , , , , , )

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.

There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try to honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

2. I wish I didn’t work so hard.

This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I’d had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

4. I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice.  They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

What’s your greatest regret so far, and what will you set out to achieve or change before you die?

 

 

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thoughts and words

November 4, 2012 at 6:56 pm (being remembered, end stage congestive heart failure, feelings and thoughts, heart failure and exhaustion, how does it feel to die, living with dying, pain, road trips, the dr. says) (, , , , )

last night is not the first time this has happened and it is so frustrating.  when all was quiet i knew i wanted to share some thoughts and feelings here. the problem was the thoughts could not find their way to the fingers.  fingers were at the ready, just come on brain, give them the words.  at one time i had a fairly good range of vocabulary, not now.  sometimes words are right there just waiting to jump out yet when i sit in front of the screen?  nada, nothing forms. at times i would swear that the words have a feel and taste to them, they are as real in my mind as they are when typed.  after this disappointment, more often than not, all the words and more come bouncing forward.  thoughts and phrases lost earlier are now rollicking through my ready for sleep mind.

it isn’t surprising with the lack of oxygen to all my vital organs of course my brain is affected. driving vacations are probably not the best anymore.  after only a couple of hours in the car my fluid retention is a hazard.  once we stopped i was too exhausted to take the medication that would have helped.  since i do not want to disappoint h or myself i push to get up and moving long before i have had enough rest.  we did take a nap every day except the days we were driving from point a to point b.  our room was separated from the marina by a small street. it seemed a shame to be so close and not walk over and see the boats.  when planning this vacation we had planned on spending time with ferry rides to the island for some sightseeing and hopefully an encounter with the wild horses.  the hurricane made it impossible for anyone to travel to the islands.  the state ferry was shut down to all except those who lived on the island.

walking a block to the coffee shop took 45 min. to an hour.  with much encouragement h did go out once without me.  his resistance to spending time on his own makes it tough.  i am no longer able to push through and wish we weren’t at this point but here we are.  in a short time we will drive to charleston and already have reservations for our bed and breakfast along the way.  we are both looking forward to thanksgiving with our family.

our next trip is in december, we are going on a cruise.  this should work out well since i can retreat to our room and put my feet up whenever needed.  of course that will be followed by our christmas in charleston.  this was most likely our last extended driving vacation. it had to happen sometime and i certainly have no complaints.  we have had some amazing trips in our years together and have our memories.  when i am experiencing extreme pain we go through those memories together.  it is my hope that although i am at times robbed of words that i will not be robbed of my memories.  if i think about it though, i have to say i probably won’t know that i am without those memories and i have family and friends to help me remember.

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success in life

September 12, 2012 at 3:50 pm (being remembered, end stage congestive heart failure, how does it feel to die, the dr. says) (, , , )

this being ill thing certainly gives  a person time for insight.  one question i have been asking of myself? most of us know who we are if asked.  is there some doubt though?  recently YS (youngest sister) and i were discussing our middle sister and our mother.  our perception of who those people are/were is a bit different.  it is clear to me that the mother had an idea of who she was and those of us around her most likely didn’t see her that way.  she was not a kind person.  if she were here and was asked i am sure she would have said she was kind.

am i who i think i am?  in psychology we say- i am not who i think i am, nor am i who you think i am, i am who i think you think i am.  say that a couple of times to yourself! now i am left wondering how i will be remembered.  am i going to be thought of as the person i see myself as?  if not, then ….?

like most of you i have ideals for myself and wonder if i have accomplished those goals.  as my grandmother said many times,  be a good human being and you will have been successful in life.  have i been a success?

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insert multiple curse words here

August 21, 2012 at 11:25 pm (angina, being remembered, choice, dying, gratitude, how does it feel to die, symptoms of angina for women) (, , , , , , )

we went to a movie today.  through most of the movie i had angina pain.  so here goes the whining, you have been warned.

angina pain is like a combination of the  worst pain just above your shoulder-blade in your back (for women). if you have had a toothache, strep throat, broken bones or migraine headaches you have some idea of what this is like.  it can last 5 min or an hour. it can stop hurting then 5 min later hurt again.  then the nausea comes and i am trying to decide do i call 911 or do i sit here and see what happens?  obviously i opted for waiting to see what happens.  afterward we went to dinner at a local cafe and started talking about life in general.  pretty soon he mentions that his fear is my dying before him and i laugh since my fear is not going before him or having a stroke.  as hard as i think he will have it, i will have it far worse.  so it is not even something i am willing to contemplate. he brings up the age difference and i remind him of how healthy he is and that his aunt is 103!

the angina just reminds me that this thing is happening. it is really happening and he needs to understand that wishing it away is not going to change anything.

my greatest fear is not dying but having a stroke that takes away my ability to make my own choice.  i am in no hurry to die and yet when i think about it even in the darkest hours there is no fear.  i am grateful and feel lucky to be at this place in my life.  at the end of each day i can honestly look into my heart and say if i died tonight i would be happy.  there have been years in the past where i felt unfinished and would have left with a heavy heart.  my love has given me a well lived life.  my love for you has brought me to this place.  just remember as long as i am in your heart i am not really gone.

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when the caregiver becomes the Care giver

August 17, 2012 at 12:44 am (being remembered, caregiver, end stage congestive heart failure, Uncategorized) (, )

there are cases where this does not apply of course so this is just an observation and concern in my own situation.

now that i have given the disclaimer let me share what has been on my mind for some time.  it is one thing to be called a caregiver simply as a result of being the loved one of a person  who is, ahhhh….. well the one who is suffering from, in general, an illness. it is another to actually be giving personal care to your loved one.

when doing therapy with couples one thing to watch for is does the couple share power or is there a one up situation?  in the beginning of our relationship we had to work some things out.  it was really on me to be responsible and though it would have been easy to let him take care of me, the way to earn his respect was to stand on my own feet.  now we enjoy a loving partnership.  he may be 20 years older, however, we are both clear on the fact i did not need a daddy.

being ill means there are so many things that i can no longer do or need help.  i do not accept any help with personal care.  once that happens the relationship changes.  the way you see yourself and the way you are seen changes.  when my grandmother was in the last stages of her disease i would have done anything for her. no limits, after all she had taken care of me when i was growing up.  she would let me wash her back, we had a deal that she would not get in the tub without me around in case of emergency.  in her wisdom she balanced being my grandmother and being a patient.  she trusted me with all her medical decisions and it was an honor to watch out for her.

i have been observing couples who are in a situation where one person has become the Care giver.  over the past couple of years i hear an edge in a voice that wasn’t there before.  an impatience and frustration has crept into their voice.  the  person who is ill can start to resent the person they love and who cares for them.  i read blogs trying to understand how someone feels becoming the one who carries the whole burden on their own shoulders.  my heart breaks when i read the stories of wonderful people who are in an impossible situation.

how do you give your love and support to the person you love and still have a life of your own?  these  stories give me hope and guidance in my own life.  it may be unavoidable yet i cannot let myself believe that.  i keep my love,  his health and happiness is my first priority.  i want to be remembered as the woman he married and i know it is up to me to make that happen.

 

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him without me

August 11, 2012 at 2:38 am (anniversaries, being remembered, how does it feel to die) (, , , )

do you ever wonder how life will be for those you love after you are gone? earlier in the week we were in savannah georgia celebrating our anniversary.  as this is most likely my last year (but who knows?) along with enjoying life and being in the moment there is this undeniable reality.  it is always just, right there, waiting for me.  like some shadow that is only visible when from the corner of my eye.  it does not overshadow our life, just waits there.

words fail me as i think of how to share what is attacking my body even as i type these words.  lying in the bed next to him as he sleeps, trying to ignore the rash that now covers almost my entire body, my mind wanders.  it wanders to the time to come.  that time when it will be just him without me.

in  the past my questions of that time to come has been met with resistance.  this, i realize, is how a majority of us react except when we think it is some vague possibility in years to come.  have you thought of this?  how will you be without that person who has shared your life.  that person who is like an appendage, that person who knows you as no one else has ever known you.

it crosses my mind how in many ways he will be in a better place.  no one to hold him back as he is now.  him without me may seem strange to him at first.  him without me is at times difficult to grasp fully.  him without me does not mean him without my love.  my love will live in his heart as long as he lives.  our family will remember this time of him with me.

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it’s really about living

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

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

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

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

from White Elk:

when you were born, you cried and the world rejoiced

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

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you made me laugh, you made me cry

March 26, 2012 at 12:10 am (being remembered, last message, peace of heart) (, , , , )

we all know that we have some friends that we can go long periods of time without talking and yet we can pick up right where we were.  there are friends that we have not heard from in a long time and yet we feel we can pick up the phone, get on fb or send smoke signals and they are going to pick up the phone, fb us back, or get out the matches.  I have been blessed by such friends although I am not always sure what I have done to be so lucky.  as a result of these relationships, and of course others, I have never respected the people who say they are your friend but don’t make the time or effort to be your friend, the people who say “let’s stay in touch, get together for lunch….” ad nauseam when we both know they don’t mean it. just be real people it isn’t like I don’t have friends and need your pity.  as a result I have said to people, I know it isn’t going to happen or that we both have very different lives and it seems unlikely we will see each other again.  one young woman said to me as I was leaving one job for another, “I would like to say I will keep in touch but I have never been good at that.”  it was all I could do not to applaud her or cheer for her honesty and thanked her for her candor.  she is a dear young woman and we both knew it wouldn’t happen.  all this is leading to a point.  first I hope that you are not the phony friend. second I hope that you have many friends that even though you do not talk everyday, you know and they know you are just one phone call away.

the phone for some time now has been an issue for me. text has been good to me. in the past, text was not my choice of communication mode.  with the shortness of breath and unpredictable pain/energy problems it has become a life-line at times.  even facebook has taken a backseat. several days or a week may go by without my using the computer. it is better now that I have a laptop.  oh we are so indulged by technology.  recently I received a message on fb from a friend in calif.  it has been 8 yrs since leaving my job in Sacramento.  we had a kind of family there at the agency, outsiders beware! we could say things to each other that we would fight (sometimes literally) anyone else who said the same thing.  one day one of the counselors was running the domestic violence (offenders) group and he came into my office obviously shaken.  he was quite angry and told me that this guy was sort of flexing and being disrespectful (more to it but not here).  within a beat i was headed to the group and stood toe to toe with this guy who was obviously quite fit, taller than me (that isn’t hard to do) and young.  he was doing everything he could to intimidate me and what he didn’t know was he had just made me more angry than most people will ever see me in this lifetime.  as I left the room, he had put away his cellphone and been humbled enough to return to his seat, another counselor was standing in his doorway.  another person was in the office and had heard the exchange but she had stayed next to the phone to call for help if need be.  she couldn’t see joe standing in his door.  he may be close to a foot taller than me and can look pretty mean for the softy he is. leaning against the door frame he says he was watching just in case but the way he saw it I was not in need of back up.  of course he laughed as only he can laugh and I smiled. the other counselor chose to finish the group and I had much respect for him for that.  i often wondered if that guy knew how close he came, i have taken verbal and physical abuse for years in the past. for some reason i could not stand up for myself, however, the thought of that guy treating someone i cared and respected with such clear abuse (guess he was in the right class) was intolerable to me.

there is no reason for anyone else to remember that.  being remembered is at the heart of us as human beings.  some people are sure that they will be remembered. some leave money or things behind trying to guarantee they will be remembered. sadly there are those who die alone and know they are not going to be on anyones mind or lips tomorrow.  this makes me sad.  a couple of nights ago I watched a really crappy movie called Sweet November. it was about a young woman who is dying from some unknown disease at some unknown future time. she does say one profound thing, “if we are not remembered it is like we did not exist at all.”  at times I have wondered if my grandchildren will remember me.  as time goes by we all fade from memory.  some families have pictures to look back on for reminders. the memories are in our minds though.  even 24 yrs later I can remember my grandmother like it was yesterday and am so grateful for those memories.

ok so I have to stop and give myself an injection and blow my nose, wipe my eyes (allergy season you know).

the following is a message I received on facebook from one of my calif. friends.  she made me laugh, oh that girl could make me laugh.  one of the great things about diogenes is that no one took “position” that seriously.  of course we all monitored ourselves somewhat around the executive director, other than that we knew the “chain of command” we just didn’t care!  so here it is-

   I admire you. I always have. Don’t know if I will ever get to see you again here on Earth, but I want you to know that you have impacted my life greatly. I remember admiring the way you handled the kids at Diogenes and how you gave such positive counsel to them and all of us. I will always have fond memories of you and how you have helped shape me into the therapist I am today. …..and your baggy pants.

I wish you well and will continue to follow you on this path. You are deeply loved, appreciated and admired by hundreds or thousands of people who have had the privilege to cross your path. I know I am one of them. I pray for you to have continued peace in this final journey we are all on. The reality is we all have a timed stamp. Some just know it sooner than others. I don’t know what your beliefs are but I pray that you find peace that are looking for as to what awaits you on the other side. I know I don’t fear death however it may rear its head in my life as I know God has been a constant fortress for me in my journey and I have peace where death will have no sting for me.

she made me laugh….. and now she has made me cry:) thank you dear girl for that.  I thank you for praying for my friend when he had surgery, it didn’t seem like the time to start praying. my friends husband was too important to his family to risk that conversation not going well.  with your faith I knew she and her family were in good hands:) yes I have been blessed in my life.  I say that I have peace of heart and there is no greater peace for me.  there is no fear of what is to come.  whatever it is I am ready and at peace with my path.  it led to a sister,  my child, my husband, my girls that have been shared with me, grandchildren and friends.  yes this has been a blessed life, no complaints here.  I just hope if I have to go to hell DiDi that I don’t have to wear tight pants:)   by the way, chris cried too.

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