the irony of Being Mortal

April 12, 2015 at 4:21 am (Uncategorized) (, , , , , , , , , , , )

there are so many things i want to say.  the most difficult thought for me to impart is the physical pain and exhaustion i feel every day.  most days i sleep until the afternoon, or the early evening.  when i get up to use the bathroom, often with the hope i can get my day going, it takes so long i worry about making it in time.  that is a shameful thing to share here with you but how can you understand if i am not honest here.  there is pain throughout my body constantly now.  i can feel each and every fiber of my body, with the exception of the times that i have the numbness from neuropathy.  often i stagger and find it hard to prevent myself falling.

i was naive to think i could keep doing this blog at a normal pace when i am progressing with my heart failure. of course there is also the (non-alcohol) related cirrhosis of the liver. there is a long list of other complications that i find too tedious to list.  when i am awake but unable to actually get out of bed or out of the recliner i think of things that i want to make sure i say.  i often look at my laptop sitting a couple of feet away and am over-whelmed with the idea of actually picking it up. then there is the part of putting together comprehensive thoughts.

a couple of months ago we watched a documentary about a doctor who wrote  a book entitled Being Mortal.  he wanted to understand how to have better conversations with patients who were terminal and had reached the point where modern medicine could no longer enhance their life.  his own father was diagnosed with cancer and they found it difficult to have a conversation about what was about to happen.  the ironic thing was he said “what i found missing in every book was the voice of the patient.” yet here he was writing about the subject of dying and again there was not one patient voice. it was other drs explaining how they were handling talking to patients about palliative care rather than further treatment.

as time goes by i have more understanding. patients are just too damn tired and don’t want to use valuable energy to teach healthy people how to treat them.  for the second time in just a few months i have heard friends relay to me that they have not seen someone who they are friends with, and the person is terminally ill, as retreating.  i say to them is that person retreating or are you just not taking the time to go see them?

visiting someone who is terminally or even chronically ill can be frustrating.  sometimes in our optimism we say yes to  a plan one day but the day of the event we are unable to function.  does that mean we don’t want to engage? HELL NO! it means you are going to have to be understanding. it means you are going to have to be creative. it means if you are really my friend get your behind in your car and come to me.  it means you may be sitting in bed next to me or in the double recliner with me and yes you may have to make an effort to carry the conversation, you may have to bring pictures to share or read to me.  it wouldn’t matter to me if you just spent 10 minutes just sitting with me.  of course i don’t say this just for myself, there are so many others out there who are spending their last days alone.  i am blessed to have love around me, even saying that i must be frank and say he needs a break sometimes.  every time there is any opportunity for him to get out and socialize i encourage him.  what holds him back is that i will be alone and then what?

oh i will have my amazing, beautiful in spirit as well as on the outside, sister here in a few more months.  she will also need to go her own way in order to fully life her life.  i have some other ideas on the back burner though so no worries here.

just remember that your time will come and ask yourself what would you like from your family and friends?  now do exactly that for someone you know who is suffering from any type of illness and make their last days their best days possible.  when you give kindness it comes back to you.

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my eyes

October 12, 2014 at 11:33 pm (Uncategorized) (, , , , , , , , )

though i do not presume who else will read this i am hoping my dear husband, sister and a few other very special people will read this and know that it is for you and yes you too.

there is something written, i can’t quite remember who or what, that has the phrase “if you could see through my eyes.” although i am sure it is much used it comes to me now and then over the years.  whether with family, friends, patients or just casual acquaintances, i find myself thinking if only you could see yourself through my eyes.

tonight at dinner we were chatting about this and that at our favorite comfort food restaurant, it was then i wished you could see you through my eyes.  when i asked how you see yourself it made me sad when you answered.  for when i look at you i see who you are in your heart and soul.  i see the man of my dreams, the man whom i dare not dream of at one time in my life.  i see sparkling eyes that gleam with mischief, the kind seen in the eyes of a young boy who has grown into this man i am blessed with loving today.

i see a caring, loving man who has chosen to stay with and care for a woman who is taking too long to leave. those are my words, i can hear you saying you never wanted me to go at all, and i love you for that more than you can know.  through difficult times you have never said or even made me wonder if you would leave me, some would you know?  you have taken such good care of me over the years and i dearly want you to recognize what a gift that has been not only to me but others.  you don’t have it in you to turn your back on another human bean that needs sunlight.

you are the man who casually said to my sister, you can come and live with us. the man who wanted to be there for his kids even when they had kids of their own or were old enough to be  just slightly  annoyed when advise was offered.  in my eyes you are still the tall, handsome man i first saw walking rather jauntily toward me so many years ago now.  if i step back it is there and i have an intellectual part of me that understands the various stages of life and what to expect.  that doesn’t change the heart though does it?  no, i see that in you too.  the acceptance and the effort to push back time.  reading about the aging process and experiencing it are all mixed up in my mind and heart.

i have seen you struggle with decisions made in the past, my heart sometimes breaks for you when i hear this.  we have all made our mistakes, we all have our fears and demons that we must tame to have peace of mind.  if we are fortunate we have others in our life to love us and hold us.  someone who will hold that soul of us and keep it safe until we are ready to receive it for ourselves.

in my eyes you are all that i would want or need.  to those of you reading this, i wish you could see you through my eyes.  you would be proud of who you are, you would know what beauty you carry and bless others with.  that you have blessed me with in this journey. in my eyes you will see the love i have for you now and always.

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a good day?

October 5, 2014 at 2:57 am (Uncategorized) (, , , , , , , , , , , , , )

as he does every night, he gives me a kiss on my lips and hand. then he says “as always thank you for a great day.”

oh dear it has been a great day indeed.

i fell asleep about 8 am and woke at 11:45.  moving about in a bit of a haze i decided to make he and i eggs. that should be easy, right?  as long as i can keep all my fingers and not fall over one of the cats. work in the insulin and pills, heat the pan, slice, whisk and then there it all is.  i notice it is not cooking evenly but my balance is getting worse so we never liked hard eggs anyway.

eggs served and eaten, nap time, i wake again very late and he goes for take out.  we eat and watch a saved masterpiece mystery.  he rubs my legs that have been giving me great pain. oh his tough is still the thing that can bring me to my knees.

a couple funny shows and then he is off to bed.  it is nearly 4 a.m.. and i will soon join him. i am hoping for sleep. no not that peaceful eternal sleep, not until i decommission this badge in my chest. just sleep, may be i”ll be able to spend more time with him.

that is a great day to look forward too. yes looking forward is what we do a lot of these days. the nitroglycerin will make times easier though i think his leg rubs may beat them for effectiveness:)

 

a coffe at starbucks after visiting our favorite place barnes and noble:)

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our first road trip where we learned we really enjoyed each others company!

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the dr. said

October 2, 2014 at 4:04 am (Uncategorized) (, , , , , , , , , , , )

for some time now i have been feeling as though there is a difference in how my heart failure is progressing.  the strange thing with this condition has been my symptoms will stay stagnate for a period of time and then there will be this jump forward.

i’ve said a few times that i need to get in to see the dr.  honestly i know things are getting worse and that i need to see the dr, however, i see the look on his face and i put it off once again.  i say it’s not an emergency and nothing they can really do for me so what is the point.  he nods and we both put it on the back burner.

yesterday i realized i seriously needed to see my doctor.  aside from the regular stuff i was suffering from a raging sinus infection and heart related issues such as more frequent angina attacks along with more fluid retention.

my most recent excuse for putting this visit off was his big birthday. after that i needed no excuse since i have not had enough energy to get out.  over the past week we have gotten out a couple of times for a couple of hours and i was able to go out to dinner with a friend. this encouraged me to spend the day seeking out some answers.

what is that saying? be careful what you ask for, you just might get it.  dr. s is now at the urgent care and i was hoping to see him, my trust was rewarded with him being on duty this day.  it was his last day on for a while.  the relief and joy at knowing i would see him made the wait well worth it.  while sitting in the waiting room i saw him and he waved with his big smile.  when checking in i had asked to see him rather than the other dr. but knew that might not go well. once in the exam room he joked telling me that he had warned his co-worker that he did not want to see me with all my list of health problems.

my blood pressure was quite high, especially for someone on medication and with a pacemaker.  it has been well controlled at times but in the danger zone at others.  after the usual review of life and limbs he prescribed an anti-biotic along with fast acting nitroglycerin. the cardiologist may want to prescribe a once/twice a day longer acting nitroglycerin. that is if i see him.

we have to come to the point where i ask “the” question.  what can i expect now with so much change so quickly?  he stumbles over the words at first, then he slightly leans back in his chair and looking me in the eyes, well what we hope for is a quiet passing.  that you will go to sleep and …..

i can not help but lower my head in thought. i won’t have the luxury of a quiet death as long as this ICD is active.  do you think it is time for me to have it turned off?  he is candid in a way that surprises me. in the past he has been so optimistic and encouraged me to hold on as long as possible.  we had discussed chris’s birthday a couple of weeks ago.   i tell him i fear the longer i am here the harder it will be on my love.  his last advise was to do the things we want to do now.

the most difficult thing for me is i had no time to think about how i would tell him what the dr. said. if only he would have let me come on my own so i could be sure to find the kindest way to tell him this latest news. although it is not really news.  we have never taken any of our time for granted and are as grateful as any two people have ever been.

it will be cooler weather here soon and in a couple of weeks the leaves will be changing. in a couple of weeks we will be going in to tennessee and spend a couple of days at a bed and breakfast just enjoying the beauty of the season as well as each other.  we are as prepared for life as we are for death. each comes on its own terms and it is up to us to embrace them.

it is nearly 5 a.m. and i am going to try for a few hours of sleep, today is thursday and that means he will be playing bridge, then i will join the group for dinner.  i wasn’t able to go last week but i refuse to miss another week.  i so look forward to this weekly outing, seeing friends and catching up on what they have all been doing.  ahhh gotta go, he is coming down the hall to remind me it is time to join him.

just another reason to love him and to know how lucky i am, after all these years he still wants me beside him.  good night/morning my dear family and friends.  don’t be sad of this news, we all knew it was coming and who knows how long this phase will last? it could be weeks, months even years!

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to my step-friends heather and kristen, the best son-in-law and most wonderful sister ever!!

September 19, 2014 at 2:52 am (Uncategorized) (, , , , , , , , , )

so much to say and so little energy to say it. much has happened over the past couple of  weeks and i think about sharing it and how i am feeling. the problem is i am so exhausted even typing is a great effort.

it has been just over a week since my last fall.  there is no denying something is off here. life goes on though as we all know.  a few days later my sister arrived to help celebrate chris birthday.  it is a big one, his 80th.  we have invited all the kids and grandkids to come for a few days.  rooms rented for most with angie staying here at our home. one of the most wonderful parts of this gathering is how all the kids play well together and our adult kids get along with each other plus my sister fits in like one of the family.

as usual sleep is the great clown in my life.  there will be days when i just need to sleep almost constantly then i will be awake all night and not collapse until late. i had prepared one dish that would cook for most of the morning and afternoon. angie decided she would cook some fried chicken. it all seemed to be coming together. our understanding was the family would all arrive around 2 p.m., well it didn’t work that way.  the oldest son who has just returned from the bahamas and was a bit worried about the drive as he had not driven in large towns such as atlanta for years.  his wife maggie is so funny as she tells me joel wanted to leave at 3 a.m. to head to our home.  she put her foot down and they didn’t leave until 5 a.m.

chris was up already when they arrived at 9 a.m. angie and i were both just getting into the shower when they arrived.  it turned out great though since it gave us time with  this part of our family after only seeing them once a year. i have to say i am quite in love with my bahama boys and their parents.

kristen, bill and their 2 kids showed up exactly on time. heather was taking it slow and didn’t want to come until 3. our kristin is quite the planner and it is a little joke between us. she says “want me to put on the headphones?” that is our joke for her to take over. she gets people moving.  meanwhile my sister is cooking chicken. there were some cocktails consumed i must admit.

let’s not leave bill out.  if you are a Facebook friend you may notice that bill woodward and i have some back and forth on political issues.  some might think we couldn’t possibly be in the same room together. well you would be so wrong! when we are together nothing matters except our love and respect for each other.  he is the best father and i could not ask for a better son-in-law. he is quick to do whatever he can to make life easier for me. his kindness is limitless

the angina has kicked in and i can barely breath. the pain takes over and i have to take a few minutes in our room to rest and try to get my breath back.  heather notices my hands are shaking as i take something from the fridge and she just grabs it without making a big deal out of what she sees.  later i try to pick up the ice cream and it drops to the ground making a mess. bill grabs a wet rag and cleans the floor with a joke and puts me at ease.

chris is so happy and all the work has been worth it for me and for the rest of the family.  i am able to take short breaks and the next day when bill and kristen make breakfast i am unable to eat with them but do get up to say goodbye.

saying goodbye is tough. there are going to be many goodbyes in the near future.  i can feel the pain in my liver, then my kidneys, the angina pain sings it’s song and let’s not forget the back and legs that suffered severe injury while i was in the army.

on monday, his actual birthday, my sister was flying home and so another goodbye.  i just want her to stay. she has such great energy and is  a loving sister.  she is funny and has great plans for the future.  i love that she is including me in those plans.  it implies her belief in my life is not over and then we hug.  after a sleepless night i head to the historic hotel in atlanta where i have made reservations for the night.  we check in without baggage and i feel a bit naughty.  i had taken my insulin but not eaten so we head straight for the restaurant.  it was difficult to eat and all i wanted was to curl up and sleep.

with apologies and regret i send him off to dinner with our girl heather at our favorite place in atlanta.  i get room service and get cozy on the couch of our suite.  thanks to heather stopping at cvs and getting my back heating pad i am able to get through the pain and sleep.

looking back i see so much activity with a side of pain.  it was a group effort and i feel better about leaving him.  they are going to take care of him. all i have to do is make sure all the information they need to move things along for him.  he will be ok. he has many who love him and want to take care of him.  what a relief, i can go when the time is right. he will be good, he will be loved. he will always has my love and i hope he never forgets that.

 

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this is for you, gratitude and relevance

July 15, 2014 at 2:14 am (Uncategorized) (, , , , , , , , , )

i hope i am not over-stepping here and i don’t intend to tell someone elses story.  that has never been ok with me. well i have told a little about my sister and probably will again even in this post.

you asked me how i found gratitude and said you are so angry.  well my friend you have every reason to be angry but i would ask what does that get any of us? not just you but any of us.

let me confess that having humor and gratitude are the easy way out of dealing with this disease that is going to end my life sooner than later.  it takes  no effort to smile, it’s relaxing and releases good hormones in your body.  the psychology is if you behave a certain way the feelings will follow.

just tonight my ys(younger sister) was calling for a bit of advice.  it brings me such joy to know that she trusts me to support her and love her no matter what.  i am able to offer that view from the other side when she is trying to understand what others are doing.  that keeps my mind working and i appreciate that.  there are times in our conversation when i have brain freeze or can’t talk so she is patient with me.  we can text or she just waits to help me find the word or another one that will do the job ok.

every morning i take stock of all i have to be grateful for and that starts with the fact i opened my eyes.  if i am lucky chris is still in bed and i see that tousled boyish hair and just marvel that he is with me.  so many people leave when a loved one becomes ill and frankly just waiting and watching for the time that is coming must be so hard for him i can barely stand it.  but he is here and he treats me with love.  any of us and especially those of us  with health problems who have loved ones standing by us have a lot to be grateful for.

gratitude has always come easy for me and so has humor. my sister can testify to my sometimes wickedly funny make you laugh humor.

we have been blessed with family that care. my 2 step-friends are so wonderful and they understand i don’t want to focus on this. they ask how i am but understand i am not going to go in to any detail.  i just want to enjoy my time with them.

we have all been blessed with this thing called life.  we can be angry and i don’t judge that.  if i lost a child i would be grateful for the time we had but i cannot imagine the other emotions i would experience.  we all have our burdens and we have been given the ability to say i am gonna be grateful for this moment or lose it to our anger and depression.

anger and depression are a normal reaction to lose and some of us have lost loved ones and some of us are going to be lost to our loved ones. it’s ok to feel this way, it is not healthy to stay that way. we each have to find our own path and walk it. how we walk it is up to us.

just a side note here. after my last fall we have decided on a shorter bed since even with the stool i sometimes can’t make it up there and other times when getting down i simply slide to the floor.  i am also going to put something nice and soft to the left of the bathroom door as that seems to be a problem area.  it’s  a bit like baby proofing the house:)

so i hope i have not offended anyone or hurt feelings with my post tonight. i love you all and only want the best for you. goodnight and may we all open our eyes in the morning!

 

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the rolls royce in my chest and other thoughts

November 27, 2011 at 4:46 pm (dying, family, feelings and thoughts, gratitude, holidays) (, , , , , , , )

in feb of 2012 it will be 2 yrs since I had the Rolls Royce of devices planted in my chest.  as I lay on the table waiting for the procedure to begin a man started talking to me. he started saying how lucky it was that this device had recently been found to extend the life of patients with this particular problem. it seems that even though I am a rather good therapist the left side of my heart has been refusing to communicate with the right side of my heart. this has caused my heart to be out of sync and with all the problems it already has this is not good news.  it is freezing, did I mention, in the OR room? it always is, a nurse brings me a heated blanket and she has quickly become the kindest person I have ever met.  this man’s voice is coming from somewhere just beyond my line of sight.  he is saying it is the golden Cadillac, no wait it is the rolls royce of the implanted defibrillator devices.  mine, he says, has not just two wires but it has a third to force my two halves to speak to each other.  yes unlike humans my heart can be forced to communicate in a healthier way. I can’t help but wonder if a little shock now and then would make people open up and talk in a way that moves them forward?  this device I have not only shocks you if and when your heart stops, it is a pacemaker and the real coup is how it makes my heart beat as one, as it is intended to. 

stay with me here, it all becomes clear how these thoughts are connected, at least I hope so.  we have just returned from our brief trip to Charleston, s.c.   coming home is always long and tiresome. going, we break the 7 hour drive into two parts, we stay at a bed and breakfast the first night and then on to our destination. the idea is to be as rested as possible getting there and drive straight through coming home.  it doesn’t matter to us if I need a few days to recover once home.  the memories of the last few days are more than enough to compensate me for the down time.  each year the grandkids get more ….. everything.  they are becoming these interesting people with ideas and interests to share and questions, lots of questions.  of course it is great to see their parents, Susanne ( Chris’ first wife) and Heather.  my relationship with them all has come so far and is so gratifying.  these are wonderful people and I am so grateful for them, I quite literally can die happy now.  there is something about my life that releases me from any angst at what lies ahead for me.  my sister and I have a relationship that makes me proud of us both.  living so far apart can make it difficult to connect but we can pick up as though  no time passed.  it is my great fortune to have friends that feel like family and their texts and calls raise my spirits daily. 

aah the connection?  just a few months ago I decided to have the rolls royce disconnected. not that  I am giving up, I simply  do not want my dear man or anyone else for that matter having their last memory of me involve this device shocking my body even though my heart has given up the call to battle.  in the past my request has been to live a few more days, just long enough for one more memory.  long enough for my grandchildren to know me, love me and remember me.  that is so much and I dare not ask for more when I am so blessed.  maybe it is my optimism that brings me to the point of delaying this decision.  the timing is what I want to feel.  in the next few months it may once again feel like the right timing,  for now I am looking forward to another Christmas with my loved ones.  anything seems possible at this moment. maybe that is magical thinking as they say in the psychology books.  frankly my dear I don’t give a ….  ( Gone With The Wind was on)  it is still my intention to get disconnected, to visit the funeral home so I can do whatever paperwork necessary so Chris does not have to go through the drama of an autopsy.  do people generally know that if the loved one has been ill and under a drs. care an autopsy is not required?  we can talk about that later. now I am going to recline, wait for my heart to start behaving, and dream of all I have to be thankful for.  I hope you had much to appreciate this year, I hope you realize how much you have to be grateful for!

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