growing up these were words i dreaded. it was always in the back of my mind that someday my grandmother and i would go to california and i would have to stay. i knew i was going to say goodbye to my grandmother and it would be painful. when the time came it was more painful than i had imagined.
now i know that there will be a time when goodbyes are going to be needed. there is a good chance that i will simply die in my sleep. well that is if i get the defibrillator disconnected. if things do not go that gently, goodbyes will most likely need to be said. this is not something i have given a lot of thought to. i have found that writing here helps me process and the feedback gives me food for thought.
one possibility i have been pondering would be to say goodbyes through letters left behind or the videos i plan to make. an amazing woman who shares the plight of her family and her daughter who has a terminal illness, made the remark (the daughter) that she thought she had more time. it turned out she does have more time, however, the remark made me start thinking. we always think we have more time until we don’t.
there have been times when my heart was failing, my kidneys were failing, and the last thing i would want to do is say goodbye at those times.
is there a kind way to skip goodbyes or make some alternative arrangement?
so I have had a couple of days to think about what happened the other night. after seeing the video about the man being eaten by the orca and then immediately hearing about my friends brother, it was really just overload. my emotions seem to be affected more lately. everything I read says that happens, however, I had not experienced it so maybe it was wishful thinking but there you go I was hoping to avoid this one. would it be so much to ask? just one little symptom. there haven’t been any complaints from me to this point and not to be a baby here but I have suffered some fairly intense pain and without much fuss. so far it has just been the annoyance of canceling an event or evening with friends or family. sunday we were going to have the occupants of the moonshine mansion over and had to cancel. it worked out well in the end as something unexpected came up on their end as well. monday was a total loss and yesterday was not much better.
tonight though we had dinner with our friends and it was so enjoyable that even the pain from the angina could not bring me down. my sister Angie called earlier and we gabbed a bit. I told her about the video and the friend’s brother. it occurs to me the statistics may be right and we are wrong. maybe I am not going to be the exception. research shows I will not live to see year 5. February marked my 4 yr anniversary. my angina is now unstable and that is not a good sign. it moves me closer to setting a date to have my defib turned off. she asks if his was off and i say no. she says this time next year I will remember this and celebrate that we are right, I will make it.
this brings me back to my list making. i have a clear understanding of what his stuff means to him, that is not the issue here. he becomes overwhelmed and as he gets older it is harder for him to lose anything. even a sock. he was cleaning out drawers ( I have to laugh here) and as i came in the door a single sock flies across the room and into a drawer that was supposed to be the object of his attention. why keep one sock? i may need it. honey really? okay the other one is in there. show me. no. please show me. no, you can take my word for it. please just show me. okay, there is no other sock. then maybe you can let this one go? for you.
if he can not part with a sock how will he part with my things? so I try not to collect anything he will need to decide about later. my hope is our girls , all of them if need be, can help him move through this difficult time. one other way of handling this is for me to designate people to receive certain things. i am sure there is going to be a lot of “what the hell?” and she must have been kidding when they see the list. all I can say is I hope they keep their sense of humor! this stuff has to go to people who will do with it what he would not be able to … let it go.
back on track and making my lists again. there are still some things to be done. in between we are still living life to the fullest. tonight my love said I will make it longer than anyone expects because I am loved. i know he means to encourage me to stay positive. the truth is people die everyday who are loved. people who have a great support system and the money to buy the best care possible. this is another gift i enjoy, we have great insurance so that isn’t a problem. just knowing there are no worries about money and seeking medical care gives me an advantage that so many don’t enjoy. we all deserve it. everyone deserves to have the best medical care and not have to worry about the bills or can they even get in. we do live in a great country but we are not done! we have far to go. maybe if our elected officials would be required to make a to do list and show it to the public we could judge them on what they are actually going to do in their service of us. they are supposed to represent us aren’t they, I mean all of us. not just the republicans and not just the democrats. ok I am way off track here.
my life will be gone in the blink of an eye. if no one is looking will anyone know? will I be missed? these are questions that come to me and then I think …
why would people not want to have healthcare for everyone, how can people be better informed about hospice care and what about that Rush Limbaugh calling that girl a slut and saying it is “entertainment” these issues will be here after i am gone. they seem to move me from the small world of me to the real world of us.
Davey Jones died suddenly of a heart attack at the age of 66. how did this happen? although The Monkeys were popular when I was early teens they were not my favorite. I hope it was sudden and he had done the things in life that he wanted to do.
one of the reasons I want to de-activate my defibrillator is to give myself the opportunity to go suddenly if that is what is supposed to happen. with the defib that can’t happen, it will try to jolt my heart back into action even if my heart is ready to quite. there are other reasons but I don’t think it would bring any comfort to those I love to discuss it here. what I would hope is you know that I have not made any decisions without fully weighing the pros and cons. this has not been an emotional response to my condition. be assured that any choice made by me has been given much thought.
recently I joined a page on facebook that gives an opportunity to talk about your bucket list and to see what other people are hoping to do. it has been a joy to read some of their comments. this weekend I posed the question “if you knew you only had a year to live what would change on your list?” (keep in mind they do not know my situation) and the answers had some commonalities. the major thing in common was spend more time with family, one was to beat down the door of a relative who had not been in their life for years. many wanted to travel, there was one getting a tatoo. my question would be why would you wait to make these changes?
since they do not know my situation someone asked me what would be on my list. I will give some acceptable response as this seems the best way to behave. in truth there is nothing profound on my list. the reason for this? my life has been my bucket list. there are few things left undone and what I work on now is more day-to-day plans rather than plans to be completed at some future date. over the years I have traveled to most of the places I have wanted to see and some I had never dreamed possible. the whole idea of a bucket list fascinates me. not sure I totally understand the concept, is it a list for when you retire? is it something younger adults make and try to do these things? technically it means “before you kick the bucket” and that can mean different things to different people. if you think you are going to live , not forever, to an advanced age it makes sense to save things to do during those retirement years. my dad retired and had made plans to go to canada, to visit family and travel some more. sounds good? of course, unfortunately he died before getting on the road. would he have done this sooner if he had known?
maybe knowing your on borrowed time is an advantage. over the past few years I have often wondered if it is a blessing or a curse to know. for me it is a blessing. to be able to say the things that need to be said, to get things in order so those I love are not left wondering what needs to be done. hopefully enough has been done to allow chris to take a breath before dealing with the next part of his life that won’t include me.
to do lists have been my salvation for many years. usually there are so many things to get done or want to do that if I don’t write them down and prioritize, they wake me in the middle of the night. even though I have a great memory it has been a fear that I will forget something that wait. even now with little to do other than get up I find a way to have a list. there always seems to be something that I would like to get done and though now the list is more of a suggestion than a have to it gets made and gives me something to focus on.
monday the list was get your hair colored, go to the funeral home and make sure to pick up some cat food. to an outsider that might seem like an odd list as no one item has more importance than the others. well actually there is one more important, getting my hair colored. no way am I walking around with those roots:) over the years I have considered letting it go grey, I am old enough to be grey now so it would be perfectly natural. it is a gauge for me in some ways. if I ever stop caring about my roots or think I am too tired to take care of it then I am in trouble. as I told my hairstylist there is no way I am dying with grey roots.
after checking off the hair appt we are on to the funeral home. this is my idea and chris trusts me that it is wise for him to go. the idea is to make him as comfortable as possible. let him meet the guy who will be handling things. this way when the time comes he will not feel so disconnected from the people who can help him manuever through the process. we sat down with dave and told him what we wanted. there was that moment of awkwardness when he thanked me for my service. his father had served in the military and he was a self-proclaimed army brat. he gets the forms and starts filling them out. I do not want the super-deluxe casket that is just going to be burned with me, no I am opting for the nice cardboard box. much more practical I say to him, my eyes are meeting his but my attention is on my love and how he is doing. a few jokes and soon chris is asking if I want the one with the sunroof. then there is talk of leather upholstery but it makes me hot and it is going to be hot enough I say. david is not sure what to think, I see it on his face, he is not my concern, chris is. david is fine with the basics, once he knows I am entitled to more than the 200 or 3oo most v.a. customers get he is telling us all about the different options available. we had originally decided not to have any military honors when the time comes. david made some points to us that i now feel were a gift. as the son of a veteran he talked about what an experience it had been to attend his fathers funeral with the honors. chris who had been in agreement with me now says maybe we should for our grandchildren and my son-in-law. maybe they would find that meaningful. david had been ready to be a one man funeral until that point. he actually said if we would let him he would take part of my ashes and intern them at the national cemetery. he showed us pics and it is really beautiful. rolling hills, trees and headstones that look like Arlington. the “niches” are behind very respectful and simple plaques. my answer was that chris should do as he feels with my remains, the service or memorial is for him and my family, it makes no difference to me what goes on as long as I am cremated. it was interesting to watch as chris started to think more about what others in the family might want.
we talked about not wanting to call 911 at the time of death and he agreed. at first he thought we could just call the coroner’s office but after doing some checking he came back and said we will have to call 911 unless I am signed up with hospice. this seems ridiculous to me but there you have it. the law used to be if someone was under a drs care for a terminal illness the ambulance and all that entails could be skipped. so now I will talk to my dr about what can be done. hospice for me is a waste of resources. it is still my intention to go at home not in a hospital or hospice if at all possible.
have to go take care of my last list item for today, go to the bank. so the new list will be see the dr., make an appt with the cardiologist to disconnect the defib, buy a new tablecloth and check when we can visit with family. lot’s to do and naps to take. better check on cat food.
having the defibrillator implanted brings with it some questions of its own. at what point to unplug and go “au naturale” there was some hesitation on my part to have this thing installed in the first place. not to say I regret it now as that is not the way I think about things or try not to. once the decision is made my goal is to make that work. if it doesn’t it can be re-evaluated. over the years many decisions have been re-evaluated, fortunately not as many in the past few years. at the time of this decision I was not alone in the dr.’s office. husband sitting, leaning forward in that anxious fight or flight mode. cardiologist determined to have this device implanted in my body, sitting there it struck me that these two men had the same goal but for very different reasons. the man I love says we have to do this, it will give me more time with him and he with me. doesn’t that make it worth doing? what to say to that? of course it must be done, if not then the conclusion will be made that more time with him is not what I want. of course I want more time with him. who would say no to more time? like the commercial who wouldn’t want more money? there is of course the fine print. it is in fine print for a reason, much like the wizard of oz and “pay no attention to the man behind the curtain.” here the fine print is the surgery itself, the everyday problems with the device, and finally how does it work in the end? picture this, you are at the end of your life, peaceful and accepting of what is coming, you are surrounded by family, your loved ones or even just your cat. you close your eyes ready for the big sleep, then a horse kicks you in the chest. yep the defib does not go so peacefully into the night. the mission is to shock your heart and keep it pumping. there is no off switch. forget about drifting off to sleep and being at peace. no you have the rolls royce in your chest my friend so there are a few more kicks to come!
this does not appeal to me. timing is everything they say and though I have still not met “they” it is my opinion in this case they are correct. not wanting to do this too soon and miss even a day of life while it is still so sweet to me, not wanting to wait too long and be denied the option of disconnecting this device, timing is everything. this is the 4 yr anniversary and there is (statistically speaking) not to be a 5th anniversary. there is always the first or the exception to any situation. there may have been people who did make it to 5 and beyond, they may not be a part of the group used to establish the statistics. there is an equally good chance that I will not make it to next february which would be entering my 5th year. no one has made it to year five, end stage congestive heart failure…. no still not tragic:) sorry I had to give it a moment.
strange how we all react so differently to the same stimulus. for myself this is no tragedy. life has been an amazing gift. whatever comes now I don’t really mind. there have been so many moments of sheer delight and even today when I am physically struggling, my life is rich. when done here will make my way to the double recliner bought so we could sit side by side. just being there, talk or not, cats on the lap, texting with friends or family, just being. days like today are a reminder of how serious this really is. no denial here. the body does not allow for that and that is not what I want. it is what it is and today it is challenging. ahhhh but there is tomorrow and hope for a better day! going now, to sit and just be. will keep thinking a bit about whether or not to turn this device off.