no crying allowed?..

July 16, 2012 at 2:44 am (bravery, coping, death, dying, family, feelings and thoughts, how does it feel to die, leaving, living, love, truth) (, , , , )

even though I am tired all the time, and feel  as though a nap is calling to me, insomnia is a constant companion.  looking at the clock and knowing that morning is only a few short hours away the frustration builds.  finally it is after 4 a.m. and heading to bed with great hope and trepidation.

in some writings it is described as the “wee” hours of the morning.  it feels like something more to me.  as i lay in bed, and try to avoid looking at the clock,  everything is changing.  the bedroom goes from that pitch black that envelopes you and hides the hidden dangers to your toes and shins.  once in bed, eyesight adjusts and it is the room you know.  the room where you lay completely vulnerable.  this room holds your trust of safety while the body surrenders and the mind embraces the opportunity to dream and restore itself.  the light changes yet not dramatically. is this the wee hours?  as i lay next to my love who gave himself to the bed hours ago.  small snores, legs moving, grabbing and pulling sheets, it is an honor to be trusted with this time, while he dreams I watch.  loving the way his face looks so peaceful and boyish.  even in sleep he reaches for me, kisses my hand, whispers of love.  then turns away to slip back to his dreams.

feeling the change coming and knowing it is going to be full-blown morning soon.  my mind wanders.  asking the hard questions of myself.  all the arrangements have been made and there is a feeling of readiness and a wondering why it hasn’t happened yet.  there are a few things i could still do.  there is something about knowing i have entered that 5th year.  somehow that doesn’t seem like the underlying motivation.  fear is not a factor.  love of life has not changed, yet doesn’t prevent this feeling.

laying on my side, feeling the change from night to day upon me, it begins.  not even acknowledged until it becomes impossible to avoid.  yes, tears have been shed.  not great sobbing or even sadness.  just tears and then some harsh words for the eyes that would dare to betray me in such a blatant display.

from the onset there has been an all out effort to not cry, to not complain, to not impose on others and to make everything as easy for others as possible.

tears were shed and it was hours before sleep came.  no one saw the tears.  that somehow hurts and a part of me wants to complain or really just to be heard, wants to be honest about this weakness.

it is after 3 a.m. and there are new tears, clinging to  the edge, waiting to drop, they will be silent.  i will be silent…….

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the rights of the dying, do we really need it spelled out for us?

May 27, 2012 at 3:34 pm (death, death with dignity, defibrillator, doctors, dying, euthanasia, family, feelings and thoughts, how does it feel to die, meditation and pain, pain medication, religion and death, rights of the dying, truth, Uncategorized) (, , , , , , , , , , , )

the following is from another source and is sited at the end of the article.  my question after reading this is do we really need a book that tells us how we want to be treated and that in an ideal world this is how we would all be treated?  these are just some of my personal thoughts on the subject.  we all have some basic human rights and we know that not all in this world enjoy those rights for many reasons.  some it is political, religion or even on the smaller scale it is the world we as a family or community have created.  in other’s there are these rights and more, the luxury of being able to afford such rights.

my opinion is just that an opinion. the book itself may be of great value to some, just not me.  please make up your own mind if this book is for you.  my goal here is just to continue the discussion and not to critique this book in any way.

The Rights of the Dying

The right to be treated as a living human being

* we are born are we not with the right to be treated as a living human being? do this imply we must remind people we are living? in some cases it is easy  for our loved ones to stop asking our opinion about things, usually due to kindness and not wanting us to use our energy on the mundane.  most of us want the mundane. we want to know that we are still contributing on some scale no matter how small.  it is a blessing to me that my friends still seek my advice or opinion. sometimes they just want an ear and that is part of being a friend or sister or spouse.  would you check our account balance or has that check cleared? can you text since i don’t text? can you help? even in the smallest way is just part of being a living human being.

The right to maintain a sense of hopefulness, however changing its focus may be.

*in my opinion no one can take away your hope!! even if it is the smallest hope for the day. this is something that is personal to each of us. to say we can lose that right is ludicrous.  did the prisoners of the camps have the right to hope? of course they did. not even the Nazis and the extermination could take away their hope if they decided to make that part of who they were.  no doctor can change if i decide to hope, and if that hope is not that i live but that i die with ease that is my right too.  do i need a book to tell me that i have this right?

The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

*this one is a bit more tricky. by cared for do they intend that medical staff be required to stay hopeful?  do they have to be hopeful for me to receive good care?  if we can focus on medical staff first, it is certainly desirable for my dr. to remain hopeful and to let that change. don’t they also have to be able to be honest with their patient. i for one want to know the real deal and not some fairy tale.  not that long ago women weren’t always told the truth and in fact dr’s could make that decision for the entire family..  sometimes husbands were told and then it was up to them to make the final decision of what the little woman would be told.  my dr. does not have to hope that there will be a miracle for me.  i can hope for what i choose.  as a former nurse it makes sense that an attitude of supporting the patient in what they hoped for would be requisite.  it is of course what we would hope for in family that cares for us.  let’s not mistake what we would like and what may not be an option. if you are being cared for by family they may not feel hopeful.  do we then say they are not adequate caretakers?

The right to express feelings and emotions about death in one’s own way.

* there are rights and there are responsibilities that go along with these rights.  do i have the right to say whatever i want without regard for the feelings of others? this isn’t just a question for someone who is dying. just because you are dying doesn’t give you the right to disregard the feelings of others.  someone who is not dying has the right to say how they feel about their life and those around you have the right to say that is not acceptable to me. if you are hurting someone else with your words how is it so special that you are dying?  the reality goes beyond this, if you were to say to your doctor i can’t take this and i am going to go home and end it all he then has to take steps to protect you.  this may not be the result you want however if you say whatever you want without thought to consequence it may not lead where you want.  telling someone they have the right without explaining the consequences seems a bit irresponsible.

The right to participate in all decisions concerning one’s care.

*this is a patients right and not just for the dying.  you may have guessed by now that it annoys me for someone to “write” a book without having some new or crucial information.  books cost money, people buy them thinking the person writing has some expertise unless it is just a personal account of events/your own life.  it does leave me wondering who is being denied this right? years ago elderly patients were not routinely being asked to participate and since they grew up in an era of the dr. knows best they often gave up this right willingly. it is sad to think this was happening, the good news is our society is making strides in rights for everyone.

The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one’s needs.

* is this a re-hash of previous rights?  were the writers being paid by the word here? again in an ideal world and we would hope this goes without saying.

The right to expect continuing medical care, even though the goals may change from “cure” to “comfort” goals.

* we have entire specialties now that focus on the comfort.  hospice is the go to for this. they also

The right to have all questions answered honestly and fully.

* we should expect this not just as a patient with a terminal illness.  if we are not getting honesty from those around us this may not be a new problem.  my hope would be that we deal with dishonest relationships before we arrive to this gate.

The right to seek spirituality.

*this doesn’t seem to be a problem now if ever. when in the hospital a chaplain came to my bedside each day.  my issue was the opposite, it was assumed that i am christian and even when i explained as kindly as possible that i am not christian he pushed to come anyway.  he was a nice man and i couldn’t bring myself, even in intensive care, to assert my right NOT to seek his prayers.  oh well, i decided it wouldn’t hurt me so no harm no foul.

The right to be free of physical pain.

* one would only hope but i am here to tell you it may be a right, however, you are going to have pain and will have to decide how you want to handle this as an individual. my choice not to take meds may not be your choice.  pain is a part of living, again this is an individual choice. toward the end many change their mind about the comfort meds can offer. some decide to keep their awareness and forgo that aide.

The right to express feelings and emotions about pain in one’s own way.

*this is just filler. this has been addressed in earlier points.

The right of children to participate in death.

* again not sure why we need to be told that our family has the right as do we to be in their loving presence at the end if that is what all concerned choose.

The right to understand the process of death.

*each death is different and dr’s can give you some information based on previous cases but keep in mind your experience may be unlike others.

The right to die.

* we have the right to die but not with dignity except in a few states.  we can refuse life-sustaining measures but in doing so we give up the right to be pain-free.  those who oppose death with dignity say we can just stop taking meds or nutrition/water. in doing so we will eventually die a long and sometimes suffering death.

The right to die in peace and dignity.

* this is a legal right in some states but not in the majority. this is a shame on our society.

The right not to die alone.

*again this is not really a right as i see it. it is our wish for those who do not want to be alone at the end.  too many do die alone and lonely. until we have a society that does something to change this, it is an ideal and not a reality.

The right to expect that the sanctity of the body will be respected after death.

*if forced to call 911 as you are not under hospice care the 911 team must do everything possible to restore you to life.  that is not being respected as i see it.  we can expect it and need to understand it is a possibility that it won’t happen.  just remember that your family is going to do all they can to ensure this.
“The Needs of the Dying” by David Kessler


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you look good

June 3, 2011 at 12:27 pm (choice, lookng good, love, reality therapy, truth)

interesting that people almost seem compelled to tell someone they know is ill, how good they look. it does confirm my theory that one reason I am still alive is I don’t look tragic enough to die yet:) yes I am joking and yet not completely. sometimes people say I have good color which I know is supposed to be reassuring, if I were really sick would I have good color? maybe, being native american I do have a natural although light color to my skin. so basically unless I needed a transfusion as I did a few yrs ago I am gonna have some color. the bloating keeps me from looking like, or actually losing weight, along with the drugs I take. although, I can remember people coming into rooms on the oncology ward and telling patients how great they looked. as Cody in the documentary, how to die in Oregon says, people think if you lose weight you look great since that is the standard for looking good in our society, being thin. she actually did look pretty good right up to the end. she was tan and had all her hair. she didn’t look as thin as she probably was due to the bloating. if there is some transformation, which I have heard rumored, where people become almost translucent just before their time, I kind of like that. I have never been a pretty woman so to think that in my last moments I could actually be seen in that way is nice to think. my guess is I will still be just as I am, and it is in the eye of the beholder, as it is in our everyday life. oh well, at least I wasn’t an ugly baby! you know the ones I mean. we’ve all seen them.

tomorrow is ct scan day. I am hoping to go alone. Chris usually wants to go to all appts with me. I need some time to think about this situation and process the possibilities. when he is with me I feel I have to distract him and keep him from thinking about what is happening. in the documentary some families went in for appts together and they had no buffer between them and the stark reality. that just seems so hard to me. I want everyone to stay positive and hopeful, that is so much harder when you hear the words for the first time. when I tell Chris what was said it is after hearing the news and deciding how to say it to him and what to share or not. some things don’t need to be said as far as I am concerned. it all goes back to what is your motive for telling someone the whole truth. if it is just to make yourself feel better, then I want to think twice about that. there are times when I wish I felt it was okay to just give in to the sadness for a little while. not long really, just long enough to acknowledge it is not what I would choose. of course that goes without saying doesn’t it? I guess that is what it comes back to for me, does it need to be said?

in reality therapy the theory is we have a thought that leads to a feeling and we can choose the thought and therefore the feeling that follows. that is simplistic but for my purpose here you get the idea. I am a believer in this theory, we choose to catastrophise a situation or not. so we can either make this a huge deal and feel overwhelmed by the event or we can look at it in context where it becomes more manageable. for me this is just another time of my life. I have had some great times and for the past 20 yrs my life has been amazing. since the day I saw Chris, and we grew into our love for each other, I have been blessed to know what real love is. I was talking to a couple of girlfriends today about love. we all have our own idea of what love is for us. for me I know it is love, over the yrs one thing has never changed, I smile inside and out every time I see him. I look forward to seeing him every time we are apart for even a few hours. not to say we don’t have our moments, of course we do, we are human after all and we have opinions that are not always going to agree. I have a lot of respect for him, he is very kind and loving to all. if you have read previous posts you know that we are friends with Susanne his first wife. sometimes he calls her and I love that about them both. after all these yrs that they can still communicate is a wonderful thing. she had some surgery not long ago and if she had needed him he would have gone to help her. of course the girls took good care of her but the fact he is so caring leaves me proud of him. I know it is going to be to difficult for him when I am gone, there are times that he talks about how much I do that he wouldn’t know how to. when he first told me this I didn’t think it possible since for the past couple of yrs I do very little except rest. most of his concerns are about the things I do for us on the computer and, when we have issues with tenants I step in and let him stay the “nice guy”. when he is confronted with anger or highly emotional people he freezes. I have been through too many events in life to be bullied or frightened by amateurs:)

tomorrow I hope the scan “looks good” that is the only kind of looking good I really care about right now. if not being as beautiful as a starving model worries you, or has a negative impact on your life please read up on reality therapy. how you think really can change how you feel.

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optimism vs realism

April 24, 2011 at 6:35 am (family, friends, humor, optimism, truth)

Chris loves Costco, so today even though I am still dealing with some allergies and sinus issues (like most of this country) I ventured out with him. actually it is more about self-preservation when it comes to him going to Costco alone. we were discussing plans for the coming months, because of the heat and my heart not being a good mix, we have several months that are planned around.

we have talked about the whole do you plan for the future when it is going to be cut short? the answer for us is hell yeah! if I had listened to drs. I would have completely missed the past holidays with my family, Chris and I would have been okay with staying home, but neither of us would have preferred it. this is not something we just go on about, we have come to a place where there is an understanding of what works for us. over the years I have teased Chris for having a little dark cloud over his head and there have been times he thought I wasn’t worried enough. however, during this ongoing situation he has been very optimistic. when I met with the research cardiologist and he gave me 30% chance of living til 2/10 I made some adjustments and got things organized. everyone should do this, make a living will and let people know how you feel about what happens under various circumstances. When last february came around and the cardiologist wanted me to get the defib, I thought why not since Chris really wanted me to. in november of last year I was advised to stay close to home and both my drs. were surprised when I came back the next week and seemed to be improved. not really better than before but not worse.

maybe that is part of combination that works for us. we are realistic enough to know that I cannot do things today that I could even 6 mos. ago. we are optimistic enough to plant plants I will not see grow, we make plans for when summer heat is over and where we want to go and what we want to see. we keep redefining what is a good day and new ways to deal with the bad days. when people ask me how I am, the answer is I am fine, but this is a new fine. sometimes when asked how I feel, I reply the way I am supposed to be feeling.

I saw the dr. yesterday and we discussed how our society has become intolerant of pain and stress. we medicate and alter our mood through drugs and alcohol. of course that does not mean everyone, I hope that is obvious. however, with the big “pain management” industry developing it makes me wonder. I am a believer in pain meds when they are needed. we are living longer and our bodies are suffering longer as a result. he (my dr.) says he will know that I need medication if I ask, since he has not yet been asked. he has asked me on occasion and I think I can go a bit longer. that is what gets me through, I think I can make it a bit longer. I know someday that will stop being the truth. I will stop making it, my life will end.

in the meantime, we are off to Costco and looking forward to visits from family in june. we remain optimistically real:)

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life goes on if you let it

April 14, 2011 at 12:16 pm (choice, dying, family, friends, gratitude, living, truth)

just spent some time on the phone with my sister Angie. some days when I have the breath we have our little girl talk. this all goes back to the people in my life being the people I want in my life not just “associates” or people who really don’t get you. even before I was diagnosed I didn’t let myself waste time with people I knew clearly had no real relationship with me. We all have those people we know and see on occasion but are also aware the “let’s stay in touch” is just so much bull. That would be a great birthday wish! no more people lying to my face that they want to stay in touch when they know as well as I do they aren’t going to.

A friend told me this is one reason I am her “hero”, I just say no. when someone asks and I don’t want to I just say no thank you but thanks for asking. she thinks this takes some sort of courage but I learned many years ago that saying no is fine. don’t be rude or hurt someone’s feelings on purpose but if you know they are just playing the game, well they will have to play without me.

for more years than I would like to admit I was a people pleaser and I let myself be unhappy and do things I did not respect myself for. I would say I had no choice and at the time given my skills I believe this was true. when I found myself a widow living in california I kept trying to please and just got more and more enmeshed in things thinking it was my duty to fix things. Now I realize I really had taught people how to treat me. I made the decision at that time I would stop doing this. it doesn’t happen overnight but you can change this and your life goes on and gets better. when I met Chris I didn’t want anything too serious, I even told him I obviously did not know how to pick a man or had a loser magnet that needed to be removed. He obviously hung in there and didn’t push too fast so … here we are today.

so this all really goes back to choice and realizing it is okay to make those choices. the people who really care about you will understand and support you. we were supposed to go to Charleston this weekend. I have been looking forward to it and think how much fun to see everyone, however, it has been a tough week and I feel a bad time coming on. I can usually tell it is coming and try to just stay home and go through it quietly. we had to call and cancel with Kristen and she was wonderful as usual. said no problem we will get together soon. my sister is flying out from SF in june and she is making her way to us rather than us driving to Atlanta to pick her up. on he phone she said she was bringing a book and looking forward to just hanging out. I appreciate this more than she knows. she is the A type who is on the go and the life of any party but she knows I can’t do that now. she doesn’t make a big deal out of it she is just going to make it easier for me and I could not love her more. she knows I want to talk about fun stuff and make jokes, we both know what is happening but we both know that life goes on if we let it and we are going to let it!

to the people I love and have let me get on with my life, however long or short, you are amazing and I appreciate you. I wish more people in my situation had someone like you to help them live they way they want and to die the way we want.

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it is what it is

April 13, 2011 at 5:49 am (dying, friends, living, truth)

sometimes I may seem a little too practical. Chris worked as an engineer with the California dept of transportation and his degree is in business so most would expect him to be the practical one and in most situations he is. it is one of the things I admire most about him. he can be impulsive and we have had some great times because of it.

I need to replace a personal item that can be from very low-cost to very expensive. Chris first told me and I believe him when he said this, we will pay whatever it takes to make you happy. so I got the first consultation and came away with a staggering 40,000! yes that is dollars. today I am going to get another consultation and as I told Chris it’s not like I am gonna be around another 20 yrs to make that kind of investment make sense.

His face tells the story, he knows I am right but what can he say? should he say those words? should he say yes you won’t be here at best another year and so it would be a waste of money. I would never make him be the one to say those words! over time most people have heard me say “it is what it is” and “it will work out……or not, it always does.”

He is looking at me and I say it, it is what it is. we both know this and I do not want to leave him not only mourning my absence but I do not want to leave him with a lot of debt incurred that was unnecessary. I have donated my body to science so it will be returned to him cremated or if they don’t accept me for some reason I have found a cremation service that is within the cost the V.A. will repay him. I have made him a folder with this information so he or more likely the girls will be able to see him through this whole thing as easily as possible.

In some books I have read , caregivers are mentioned but they deserve more than that. as the person to soon leave I feel I want him to be cared for during this time and afterward as much as I can. He deserves that and so much more. There are many terminally ill out there and you know what I mean. Well people sometimes think I am brave and kind because I think of others and how they must be feeling. What they need to understand that most of us on this side want to care for others, we don’t want pity. we want to enjoy life and that means telling me about the joy in life, share that with me. yes I am dying, but it is what it is, and my best friends and family know I don’t want to wallow around in this, I want to cover myself in their joy and funny stories or having them share with me the way they did before this thing came along.

After all “it is what it is” but it is not who I am.

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April 12, 2011 at 11:25 am (dying, friends, gratitude, living, truth)

when I worked with families of teens and the parents would lament they only wanted their teen to tell the truth I always had to hold back my first reaction. Really? You really want to know everything they are doing and thinking? NO you don’t. second if you want the truth then you have to be what I call “truth friendly.” most parents would say tell me the truth then after hearing it they would proceed to react to said truth in a less than encouraging way. the lesson for your kid? do not tell them the truth they cannot handle it and are lying when they say you can tell them anything.

Of course this is true in many circumstances other than parent/child relationships. do you really think telling your boss the truth is going to be appreciated? what about telling someone you love 99% of the time what you are feeling that other 1% of the time? would you want to hear that? my guess is no.

I have tried to use this gauge in telling or not telling people about my illness. Who do you tell the absolute brutal truth to? What is the point in telling them? I used to ask clients what they hoped to gain with the truth. was it simply to unload and feel better about yourself for the moment? in the long run are you gonna be feeling this way? once the words have been said, even if the person forgives you, the words have been said.

while drawing up a list for my husband of people to contact when I die and how to contact them, I sent out an email to people I considered friends and some family. some people were shocked, even though I thought they knew my condition, others were obviously touched and definitely wanted to be notified, understanding my purpose. My youngest sister is pretty casual about the whole thing which is just fine with me. Kristen has cried at times and I hate telling her these updates, however, Chris and I talk before and agree on whether or not to share any update. Heather is practical and yet manages to let me know that she, like Kristen, would come to cartersville if she was needed. They all react differently and yet I feel loved by all 3. They have given me more strength than they can imagine. They all love differently and I love them all for it. I want to add I have the best son-in-law any woman could have. Bill is married to Kristen and they have 2 children. Bill is so funny and I always enjoy being around him. stairs have become a big obstacle in my life and I have found ways to avoid them. Bill and Kristen have stairs at their home. we usually stay in a great room upstairs and I can hear the kids in the morning and it brings me such joy. a couple of times we stayed at the hotel so I could rest and avoid the stairs. when I spoke about missing the sounds of the house bill said we’ll make it work, just come. last holiday we came and yes the stairs were a bear and yes I was exhausted, however, the time I did get to spend downstairs was so worth any problems and there is a bath downstairs so I know I can sleep down there if I have to.

Lately I have a few women who have come into my life as friends and they are each so different and offer me so much. One I met the first day at a new job and I don’t think anyone could have foreseen us being such close friends, except for us. it just works and that is all I am going to say about that. another is a trainer and first met Chris then I met her and just told her straight out what I could not do and why. she was amazing, I saw a small flinch but then a determination to go with it. turns out her mother died when she was young so hearing this could not have been easy. she is in my life for good and brought a couple of friends with her, one has the cutest baby and I am so grateful to have these women in my life. there are many others so if you do not see yourself here now you will in the future. I will never forget any of you.

You are all my truth and honestly…. you make this easy:)

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