a different kind of night

October 26, 2012 at 3:03 am (dying, holidays, how does it feel to die, leaving, living, living with dying, peace of heart, shackelford ponies, the dr. says, waiting) (, , , , , , , )

tonight is very different from just a few nights ago.  my sister is stretched out on the couch and is leaving tomorrow.  yesterday we went to see Argo with ben affleck and it was gripping.   as we walked up to the counter to pay she turned to us and said “i can pay for myself.”  of course she can, she has a great job, travels, lives in san francisco on her own.  she has a ton of friends and an on-off boyfriend.  i don’t have any reason to worry about her, well …. except she is my baby sister and  lives on her own in san francisco!

 this evening we spent together took me from the moment, to the past and the future.  in that moment i realized she is going to be fine.  a few years ago she came to stay with us, at the time she was going through an awful lot of emotional turmoil.  we were sort of a resting place, a place for her to make some decisions about what she wanted to do without the stress.  since i was 14 when she was born and the mother  really turned her over to me, i have a very protective love for her.  hearing her say she could pay for herself brought me back to the moment and i was so proud of her. 

the down side is it feels like letting go of that baby girl i first held, the girl who called me in germany to tell me about the boys she liked, the time she had a fight with her boyfriend and through her tears came to my lap to sit and cry.  the upside is i can go and know that she will be okay.

knowing that everyone is going to be okay is important.  my sister has said and it is so true, we are good, we have said  everything we need to say.  our calls end with i love you so when i go there is no doubt that we have a good relationship.  my husband will be sad but he is going to be okay.  my step-friends will be sad and they will stand by their dad and help him if they need to.  my friends know that i care about them and that if something needed to be said i would have said it.

so now, more than ever, we are just waiting.  while i am waiting i think i will go to the ocean and see the wild ponies. then we will have a big family thanksgiving, after that a cruise to the islands, and round out the year with the traditional Christmas in charleston!  this very well may be my last one and if it is i am going out with a bang:)  life is good, yeah life is real good!

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

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

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

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

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

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

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

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check please

October 17, 2012 at 7:56 pm (the dr. says) (, , )

although we knew there was a serious problem i have to say we were surprised 4 yrs ago when my kidneys failed and we found out this was common for heart failure.  after 10 days intensive care followed by 4 on cardiology unit we had a more clear picture of what lay ahead for us.

tomorrow i am going for a blood test as once again my kidneys seem to be ready to check out.  this was always a high probability and not the worst or best way to go.  thinking i will wait until i get the results to say anything as i could be wrong. there could be another reason for these symptoms.  if you have kidney issues here are some symptoms to watch for:

The following symptoms may occur with acute kidney failure. Some people have  no symptoms, at least in the early stages. The symptoms may be very subtle.

  • Decreased urine production
  • Body swelling
  • Problems concentrating
  • Confusion
  • Fatigue
  • Lethargy
  • Nausea, vomiting
  • Diarrhea
  • Abdominal pain
  • Metallic taste in the mouth

Seizures and coma may occur in acute kidney failure.


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reasons not to be admitted to the hospital

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

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

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

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

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

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

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

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

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

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i’m a believer

October 13, 2012 at 1:32 am (believe, choice, end stage congestive heart failure, hope, how does it feel to die, living with dying, pain, the dr. says, Uncategorized) (, , , )

today we had lunch with friends.  we haven’t seen each other in a couple of months although twice arrangements were made. each time we had to cancel due to  my health.  there are few people who hang in over the long haul, whether friends or family.  marge is about my husband’s age and her husband is a few years older than both of them.  age is not our only difference, they are republicans-we are not, they are church goers-we are not.  yet we find plenty to laugh and talk about.  part of the laughing may be the alcohol consumed when we go to their home.  our usual pattern is lunch, then on to their home.  we usually eat near their home since we have some concerns about their driving.  at first i was not sure if they drank but they had alcohol at their christmas gathering so i carefully brought up the subject. not wanting to look like a total alcy i told them about a drink my sister made for me years ago and how great it was.  marge almost jumped for joy! they were not sure if we drank so didn’t want to bring it up.

the drink my sister made is called “keoke” coffee. it is brandy, creme de cocoa, kahlua and strong coffee with whipped cream on top.  wow it is so delicious!! that very day we stopped at the store on the way from our lunch to their home. now marge keeps the works on hand.  she loves to bake and had made pumpkin pie from scratch.  the conversation rambled from one area to another and they had endured a scare regarding her heart health.  they know that i have a medical background so all the questions their dr. should have answered was answered over keoke coffee.  at some point her older sister came up in the conversation.  her sister, who is about her husbands age, has made plans to visit them next year.  marge said she thought this was optimistic at her age.

taking a moment and choosing my words with care i responded.  i have to believe, i have to make plans and hope to see them come to fruition.  maybe that is how your sister feels.  if she doesn’t make plans ahead of time what will she look forward to? if she can’t follow through for some reason she might be able to get a refund if she has paid a deposit or maybe she hasn’t paid a deposit it is just the fun of planning a trip to see her sister.  it gives you both something to share and talk about.  there are so many things i can no longer do, i choose to continue planning for trips in the future or holidays with family and friends.

a few days ago chris asked me if i wanted to go to the biltmore for new years eve. we went there a few years ago and had a really good time.  he went right on to plans for valentine day.  my throat tightens and the words are stuck right there.   let’s just get through the holiday season and then decide what we want to do, how’s that?  he agrees and yet it is in his eyes, why not make plans?  since i seem to no longer have really good days, as just a few months ago, it takes more consideration to make a commitment for any kind of travel.  new years eve at the biltmore is quite expensive and i don’t want to be stuck paying for a weekend that we can’t enjoy.  besides our little celebration at home is more to our taste.

i am going to admit and share something now.  sometimes my writing takes a path i was not expecting. that has happened tonight.  chris is going to augusta tomorrow, he will be gone until sunday mid-day.  i am so happy he is going and want him to know that i support and encourage his participation in taking pictures which he loves. of course being with our grandchildren will be great.  for weeks i have told him not to worry, it is only one night away so just go and have fun.  tonight sitting next to him i am still encouraging him and just when he is feeling comfortable, the pain and fever come.  if i go to bed will he notice i have fever? at times he is hyper-vigilant, other times he is go with the flow.  at one point the pain became excruciating and i let out a little cry, quickly covering by saying, “never mind, i thought i saw something but i was wrong.” ok that worked, it is good he leaves early so he won’t think of changing his mind.  this will pass….. or it won’t. either way he is going to have a good time and i will hope for the best.  i am a believer in making the most of every moment and making sure my love is as happy as he can be under the circumstances.  we are believers.

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ebbing tide

October 10, 2012 at 11:12 pm (choice, death with dignity, dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, moving forward, shackelford ponies, the dr. says) (, , , , , , , )

for a few weeks now it has been more and more obvious that this adventure is progressing.  there are some things that people can sympathize with but not having experienced them that is as far as it goes.  the constant pain is one of those things, the exhaustion is another.  when with other people i can easily be left behind.  it is so annoying that i move at a crawl, if i try to go faster i start coughing and have trouble breathing.  going faster is just not an option.  other people don’t think  about slowing down until they realize i am not there beside them. that happened today, he is taller and a great walker.  he can walk as fast as most people jog.  there we were with him almost out the restaurant door while i was still not quite in the lobby.  those moments are perfect pictures of what is happening.

as others continue to move ahead and therefore away, the days ahead are illustrated.  some days while sitting in the recliner, though my love is at my side, i am aware of feeling the life going out like the tide.  it is a gentle ebb and flow, it is the life light flowing from my being.  the tide has been a slow one but make no mistake the tide is going out.  we are going to the seashore in a couple of weeks.  my hopes are high for this trip.  my love of the ocean pulls me and it is a blessing to be able to go.  my energy level is almost non-existent yet my will is strong and i am counting on this will to get me there and to afford me the joy i believe awaits.

in the past i have been able to see myself at the next event or holiday. now things are a bit foggier.  the time to make some choices is closer.  of this i am sure and feel no doubt.  i will not let my husband suffer more than i feel i can bear.  my family is my greatest love and i have a great life.  when the time comes  to go i will pack lightly and will not worry about security checks not allowing more than 3 oz of fluid!

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it is what it is and it is good

October 6, 2012 at 3:39 am (death, death with dignity, dying, gratitude, how does it feel to die, living with dying) (, , , , )

while searching the internet i came upon this post, unfortunately he did pass on and yet he left us all these words.  sometimes words are all we have, then we don’t even have them….

If I have eight months to live, there is a lot of fun to be had. Once I am too sick or tired, I can watch movies, read books and have friends over. When I become too weak for that, I can enjoy the peace of our sweet home and the hugs of my wife. Not a bad way to spend the rest of my life.

My mantra of “it is what it is” means more to me now than ever. Regretting anything left undone would be a waste of time and energy. I will enjoy what is left.  LEE LIPSENTHAL, M.D

just this afternoon my love and i were discussing this topic.  he had asked me how i was and my reply was the standard “fine.”  he looked at me and said “you are a lot of things but you are not fine.”  at the time i was almost lying in my recliner. it was a hard day so we were here just hanging and talking.  lots of times when i am feeling pain it helps to think of all the comforts in my life and how happy i am.  not that it eliminates the pain completely but it really helps me.  one of the great things about us is we really get each other.  that is one of the best gifts we can receive.

when i reply that i  may not be fine in the literal sense yet i am fine with my life.  what better place to die than here?  who better to have at my side during this adventure?  i am sad and happy all at once that he will not be with me on my next adventure.  we will have to do the hardest thing two people in love ever have to do, we will have to let go.  we have held each others hands for 20 yrs.  it has been a good 20 yrs.  life is good.

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