October 20, 2014 at 8:37 am (Uncategorized) (death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living will, living with dying, the dr. says, waiting for the end)
once again a mainstream program, 60 minutes, has approached the subject of death with dignity all too briefly.
the following is a brief conversation between the reporter anderson cooper and barbera mancini. the conversation started with the discussion about brittany maynard, a young woman with a brain tumor that moved to oregon in order to end her life with dignity:
A young woman with brain cancer named Brittany Maynard made news recently when she spoke about her decision to end her life rather than succumb to the last ravages of her disease. Maynard moved to Oregon because it has a law that enables terminally ill people to obtain a lethal dose of barbiturates.
Whether doctors and caregivers should be allowed to help someone like Maynard hasten her own death is the subject of a long-running, state-by-state battle. Our story tonight is about a woman who was prosecuted for allegedly helping her 93-year-old father kill himself. Barbara Mancini lives in Pennsylvania, a state that does not have a law like Oregon’s. Her father was terminally ill and in pain and had repeatedly said he wanted to die. One morning while she was caring for him, Mancini says he asked her to hand him his bottle of morphine.
after she did so he drank what was in the bottle then said he wanted to go to sleep. if possible, take the time to read this touching story that led barbara to a possible 10 year sentence and sent her dad to the hospital where he was “revived” and lasted another four days. those four days were some of the worst of his life. all the things he had wanted to avoid were done to him in that time.
cut from ms. mancini being vindicated to a dr. who opposes such laws and sited the “death squads in europe.” this has been proven to be erroneous information time and again yet it is still used.
what i took away from this is do what you think is right for you and don’t involve you family. they may know but unless you drag them in to your plans no one knows for sure other than you.
this is a real hot button for many, including myself. so what do you think? do we have the right to end our life with dignity or do we lose those rights as we become more infirm? that is the question. Read the rest of this entry »
October 12, 2014 at 11:33 pm (Uncategorized) (developmental stages, gratitude when dying, heart failure and exhaustion, how does it feel to die, in my eyes, living with dying, sisters, the dr. says, waiting for the end)
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.
October 7, 2014 at 1:09 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living will, living with dying, the dr. says, waiting for the end)
the dream ended and i became aware that i was no longer in a deep sleep. my eyes aren’t open yet. i can remember just a few short years ago my eyes would have been open and i would have been making my way to the shower. that was then and this now.
strange but my limbs don’t seem to want to move. these days i can only lay comfortably on my left side. guess it has something to do with my heart and the ICD. it has been years since i was able to lay on my back. while in the army i had an incident where i sustained a spinal injury along with some broken bones. this left me with a limited number of positions. there are times when out of frustration i sleep in the chair. this is not my favorite thing to do as we miss each other. at times he will come out and sit next to me. he never complains about this disruption.
even though my eyes are closed i can see where everything is. i know the pictures on my side of the wall. four of them were taken in one of those photo booths about 20 years ago. just a few weeks ago, while at the movie, we saw a photo booth and decided to go for it. odd to look at the younger couple so many years ago and the people we have become.
as i lay in the bed i said in my head,
i am dying
i am going to die
i am going to die and it doesn’t upset me
how does someone live with this?
how do you go on with your life for today?
how can you be so calm in the face of this very real fact?
we are going to see leaves changing in the great smokey mountains next week.
we will be staying at the grove park in which we love.
we are choosing 2 queen size beds instead of a king because even after all these years we want to be able to reach over and touch the other person, to say i love you and to sometimes hold hands.
this is also a fact. unless of course i die before we go. that would not be cool. of course this thing is going to happen sooner than later so i will in fact die before, during or after one of our trips. at least, i am hoping that it will not be during. that would be a real inconvenience!
i need to add a note to my living will that is in the car. there need to be directions for him to follow. there need to be phone numbers, he won’t have any and doesn’t know how to use my phone that has everyone’s number.
yes i am dying.
i just really need to write that note first.
October 5, 2014 at 3:16 am (Uncategorized)
Originally posted on Vic's Final Journey:
Our Hearts Will Always Touch by Ranja Kujala (Changed)
When I laid there beside you,
Could you feel me there?
My arms were wrapped around you,
And I was stroking your hair.
I was talking about all the good times,
For me they were every single day.
I wanted you to feel love and comfort,
Be happy in some way.
I watched your every breath,
And prayed that each one wasn’t your last.
The time we got to share together,
Went by too quick…Too fast.
I wanted you to wake up,
Please Vic…Open your eyes.
Tell me this is a nightmare,
And not our goodbyes.
As your last breath grew closer,
We lay there peacefully together.
My heart continually breaking,
Because I wanted you forever.
Then there it was,
Your final breath of air.
I didn’t want to believe it,
It was so cruel and not fair.
I held your beautiful face,
View original 180 more words
October 5, 2014 at 2:57 am (Uncategorized) (a great day, congestive heart failure, death with dignity, disconnecting the defib, gratitude when dying, heart failure and exhaustion, how does it feel to die, implanted defibrillator, kidney failure, leg rubs and hope for better days ahead, living with dying, making memories, the dr. says, waiting for the end)
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:)
October 2, 2014 at 4:04 am (Uncategorized) (congestive heart failure, death with dignity, end stage congestive heart failure, gratitude when dying, heart failure and exhaustion, how does it feel to die, implanted defibrillator, kidney failure, living with dying, making memories, the dr. says, waiting for the end)
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!
September 27, 2014 at 4:01 am (Uncategorized) (congestive heart failure, death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, making memories, the dr. says, the journey, waiting for the end)
not long after we started dating chris brought home this training film. it is outdated and the actors are so stiff it made me laugh. he was working for the california state highway dept. and this was a tape he had used when he worked in recruiting and training.
the basic story is a group of people, somehow related and some maybe not. it is a sunday after church. they live in a small town about an hour away from abilene, texas. texas is huge and during the summer quite hot and windy. during the time this film is from either air conditioning was not available or only for rich people. they are drinking iced tea and the fact that the ice is melting and the glass sweating are the focus. these have to be some of the most boring people even for texas.
someone brings up going to abilene, the big city(?), and having ice cream. i am not sure how far they drive but let’s just say it feels like hours. they are testy and no one seems happy to be in this heat, traveling in an un-airconditioned car. once in abilene the ice creams is melting and no one seems happy to have made this trip.
at the end, everyone is safely back on the small porch of one player, there ensues an argument regarding the trip to abilene. you learn that no one wanted to go but thought the other’s did.
the moral of the story is don’t just go along with the crowd. speak up for yourself and you may not be the only one feeling this way.
so as i watched this training film i knew that only love would make me not regret the 30 minutes i would never get back.
that is until today. for several years after seeing this, chris would compare situation after situation to the “abilene paradox.” of course i would not see the comparison but would nod to avoid an explanation of why it was indeed like this training film.
we have been planning a trip for october for several months. the cool months are the best time for me to travel so in the past we have made our once a year big trip in late fall or winter. last year our trip to yosemite certainly had it’s challenges and since then i have to say we both know i have declined in health and ability to travel.
some time ago i explained to chris, who has never had more than the flu, that this was much like having the flu all the time. last night i thought was the time to coax him into firming up whatever travel plans we are going to make. originally we wanted to go back to california only this time drive along the coast and maybe over to napa valley. all very beautiful and cool places. we have also talked a bit about more local short trips to see the changing leaves.
my goal is not just for myself but to get him out and enjoying life. not wanting him to regret not getting out and making memories of his own. needless to say we would have to make adjustments according to my health needs on any given day but i am prepared to push through when need be.
he takes my hand, looks at me and says, if i felt like i had the flu everyday i would not want to go anywhere. i would want to rest, sleep and lay in bed. on a good day i would want to sit in the living room with you and drink tea, play with the kitties and maybe watch some good masterpiece mysteries. isn’t that what you need? isn’t that best for you?
it feels like failure to me. it feels like with enough love i could do what is best for him. he is right. i don’t feel like traveling for weeks. not even days. so we are working this thing out. we will play it by ear. we will have small adventures. we will take a day or two if we feel like it, or we will curl up on the couch with the kitties and watch masterpiece mysteries.
this could have been the abilene paradox, the funny thing is he never once made the connection. think i will keep this one to myself. maybe you have to love someone enough to say no this is not a good idea. that is the kind of love i have been blessed with in this part of my journey. my sister will travel to sweden in may and she will send pics for us to be in awe of and tales of all the people she will meet. at this point that is enough.
this part of my adventurous journey will be sitting or laying with the man i love, three cats that i am allergic to and visiting with friends who care enough to drop in and spend some time with me. all in all this part of the journey is not as bad as one might think. no it is not bad at all. life is good and we are going to make the most of it, right until the end. whenever that may be……
September 24, 2014 at 11:19 pm (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says, waiting for the end)
a few years ago we adopted two cats. chloe is the most beautiful cat i have ever seen. she is a bit of a clown and we just enjoy her. rascal is a “tuxedo” cat. he is black with the white chest and paws. both of this cats were adopted once before we took them and then returned. they had spent more than a year with the people who adopted them and we are not clear on why they were returned. over the years we have gotten so much joy from our fur babies.
unfortunately rascal was left with terrible anxiety. he shifts from one foot to the other which is a classic symptom. i saw it in my human patients on a regular basis. chris sometimes teases me that i could always be a cat psychologist. he isn’t necessarily wrong. though i think most people who are observant get to know the cues their pets give them.
the last few days have been a bit rough. chest pain, shortness of breath, headaches, blah blah blah…
earlier i had taken a long nap, not because i wanted to but because my body demanded it of me. after several hours i get up and know i need to take my insulin. the syringes and small vial are kept in the kitchen for convenience.
he stands in the entrance to the kitchen. i notice a slight shifting and fidgeting. he is feeling anxious. he offers to give me my shot.
i remark that i appreciate the offer, however i have not even drawn up the insulin yet.
ok, i’ll give it to you if you want.
thanks honey but i’m not ready yet.
are you ok? do you need something?
no, it’s just hard to know that you are suffering and there is nothing i can do to help.
i understand. you do so much for me but i know i would feel the same way. even if you get a cold i feel like i just want to make you feel better. just knowing you care this way means so much to me.
with the insulin drawn and ready i ask him to give it to me. he is so proud that he can perform this task. i know that he does it with love. it means so much to him that i ask for his assistance though i am quite capable of doing it on my own. sometimes i think those of us who have spent our life giving must now learn to receive. maybe this is our final lesson? maybe there is so much more for us to learn that we must leave ourselves open to these opportunities. i find this comforting and inspiring.
this is rascal and chloe
September 19, 2014 at 2:52 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, gratitude when dying, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, sisters, the dr. says, waiting for the end)
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.
September 9, 2014 at 1:45 am (Uncategorized) (congestive heart failure, death brings clarity, death with dignity, end stage congestive heart failure, how does it feel to die, living with dying, steve jobs organizing life, the dr. says, waiting for the end, warren buffet organizes his daily life)
dying has many affects on us that we may not notice ever or at least for some time. i look back on my life and can say looking back that i lived much of my life this way. any of us can be struck with a chronic or terminal illness without notice. so i say to you, as my husband often says, carpe diem! it is one of his many tried and true, life theories.
after reading this i really wanted to share it with others. knowing that my death grows ever closer does change how i think, how i prioitize my waking hours. to do things that bring joy and pleasure to us hits high on the list. i do not want to waste precious hours with people who don’t give back. after years of giving of myself and even now i find i want to give when i can. the difference is now i think about getting something back. of course volunteering or donating is done purely with no thought other than making a difference for someone else when and where i can.
1. THINK ABOUT DEATH
Reflecting on death might not be what comes to mind when you want to tackle your to-do list, but studies find it helps you re-prioritize your goals and values. Buddhist teachings encourage reflections of death with the idea that a better understanding of mortality also helps us better understand our purpose in life.
IF TODAY WERE THE LAST DAY OF MY LIFE, WOULD I WANT TO DO WHAT I AM ABOUT TO DO TODAY?
Steve Jobs believed thinking about death helped him make better decisions. In his famous 2005 commencement speech at Stanford University, Jobs said that he looked in the mirror every morning and asked himself, “If today were the last day of my life, would I want to do what I am about to do today?” If the answer was “no” for too many consecutive days, Jobs knew something needed to change. He told the graduates that year:
“Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything–all external expectations, all pride, all fear of embarrassment or failure–these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”
In 2012, artist Candy Chang gave a TED talk titled “Before I die, I want to…” where she explains how easy it is to get caught up in the day-to-day and thinking about death is a way to bring busy people back to clarity.
though i have been blessed with clarity it is an honor to watch some of those around me also embrace this new outlook.