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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Dr. Peter Goodwin was an activist and used the law he helped to pass in his own death. Goodwin gave lectures and interviews as long as he was able about the importance of advance directives at the end of life as well as open and frank discussion with loved ones. He wanted the end of life to be as gentle as possible and within the patient’s control. He was also a big advocate of allowing dying people to receive hospice care early, rather than letting doctors continually try to cure them. “Physicians are taught to treat, and they often go on treating and treating and treating,” he said. “It’s very, very difficult because they have so much in their armamentarium — so many new ways of treating cancer, so many new ways of treating heart disease — it’s very difficult for physicians to give up.”
Read more: http://healthland.time.com/2012/03/14/peter-goodwin-the-dying-doctors-last-interview/#ixzz1xGEBQm11
a man named joe klein wrote an article describing the journey of his parents deaths. in one part he discusses the hospital his father was in and how it was such different experience since the drs are not fee based. as goodwin mentions in his interview and article, there is a push for drs under fee based practices to do tests that are not really of benefit except to make people feel like “more” is being done. at some point there is no more to be done. drs at the hospital in PA told him his father was in kidney failure and even if they could pull him through this time it would only be a matter of weeks before he would be in the same situation and there would not be anything to do for him. it was left to them to make a decision of how they wanted to move forward. standard procedure requires patients or families to decide whether they want a “do not resuscitate” order or not.
a so-called reporter alex jones who rants and raves about the article does his best to mislead the audience. after just minutes of watching this rush limbaugh want to be, it was clear how uninformed he truly is. what makes me sad is to think of the people who will see him and take his word rather than investigate or read the article. it is merely a tirade on “socialized” medicine. which of course we already have so ????
more nonsense can be found in online sites that misrepresent themselves such as the health ranger. this is their lead in: The Health Ranger discusses the new TIME Magazine issue entitled, “How to Die!” which promotes death panels, killing the elderly to save money (and earn bonuses!).
mr. klein observes that the drs who were not being paid to do more procedures and consult with yet another dr without asking the family. the same family that will be paying for all that consulting. the level of candor, sanity, and humanity from these drs he dealt with was stunningly high.
this is something some will not benefit from. the drs will order more tests and more specialists until the last breath is taken or it is too late to preserve the patients dignity. one of my many blessings has been to have a dr who puts the individual patient and their desire before anything else. he is honest and candid, my trust in him has been earned. it would be hope for all terminally ill patients to have a doctor like mine. he understands who i am and how i want to die. he also knows how i want to live.
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while we were gone the dvr was running. on these long nights where sleep is more than elusive and even with 400 channels there is nothing to watch! just before chris goes to the dentist i turn on the recording of dr. phil. this was not your every day dr. phil. for once he did not give any advice. the only commitment he made was to say he would not want to live the way this mother’s adult children were living. both of this woman’s children suffer from a debilitating disease. it all began when they were very young, it gradually took them away from what most of us would consider a life worth living. this is a question each person must ask and answer for themselves, what does it mean to be living? video was shown of her adult son and daughter. both have feeding tubes and can not eat even puree food. the bags are hung and over several hours each receives all the nutrition needed to sustain life. the son has not eaten in 17 yrs and the daughter has not eaten in 5. the mother asserts that they do not have any pleasure and may not even have pain.
the mother does not go to visit her children regularly as it is so upsetting to her. this is understandable and until someone walks in her shoes please don’t judge her. she was accompanied by her attorney, he was dr. kevorkian’s lawyer. obviously he is an euthanasia advocate. the problem here as i see it, she let the feeding tube be inserted when she had the option to withhold feeding for them. now she wants to give them a lethal injection to end their life. many would say she should have then and could now remove the feeding tube. she doesn’t want to see them suffer any more. it may also be a factor that she is getting older. does she worry who will care about them when she is gone? they are blind, maybe deaf and have little brain activity if any. one woman in the audience just kept saying “these are your children.” well she knows that.
since most states consider ending your life with dignity illegal ,the only way to legally end their life is to withdraw the feeding tube. a slow torturous death at best. to ask her to watch her children die this way seems cruel and unnecessary. the same argument was made on the dr. oz show. many disabled individuals see this as a slippery slope and after watching this show I have a new understanding of what mr. peace tried to share with me. since the feeding tube was inserted at the time and there was full knowledge of what lay ahead for these loved ones it seems to have reached a point of no return. this is not like teri schiavo since she had made it known to others what she wanted and her husband just carried that request to its end. as children they could not say we do not want to live this way. they depend on the kindness of loved ones and indeed strangers. the law allows her to remove the feeding tube and yet not make the end easy and loving.
the question for me is if for some reason my own family was faced with the decision to take steps to keep me alive would they be able to say no? even dr. phil made the observation he would not want to live under the conditions that these two people are. why aren’t we having more discussion about this? how do you have this discussion with those you love? is there a segue to, do you think I have the right to end my life with dignity? it is not an easy conversation and yet one that could make things easier.
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a few weeks ago I had to go for my usual check-in with the dr. and told him of some new symptoms. well not exactly new as they have been going on for a few months. this was not news to me, I have already done the research for any new information. there is always the hope that new and improved treatments have come along since the last time I was current with what goes on in the medical field. there are 3 types of angina, stable, unstable and the third only happens to a miniscule percentage of the population. for at least a year I have had the stable angina. the pain usually comes on after some type of exertion, it doesn’t last too long, especially if I go sit down and rest. my symptoms have changed and now most likely has become unstable angina. it can last up to 30 min or more and is accompanied by nausea, abdominal pain and some of the others that are going to be listed below.
some good news though I was reading my living will and medical power of attorney and it states that my appointed rep (of course that is my husband) has the right NOT to call 911. if he knows it is my wishes then he is required to follow those instructions. I still have some concern for him and know that he may call just out of concern for me. this can not be easy for him, to know that he may be faced with an incident similar to the one 4 yrs ago. he just couldn’t decide whether to call 911 or not. of course he didn’t know then just how serious this was going to be. if he had not called that day I would have died. in some ways I can not help but wonder if that would have been for the best. just a matter of a few hours and this would not be an issue now. so that is his point now, he called and they were able to treat me and here I am some 4 yrs later. whatever he decides will be the right thing, it has to be what he can live with. I have hoped to keep his and my loved ones best interest in mind always. if I have ever made it difficult for them I hope they will forgive me.
this past weekend the two of us and heather went to see “Following the Fleet” at the High Museum in Atlanta. heather is a daughter that anyone would be proud of, I am so fortunate to be a part of her life. in april we are going to charleston, it is our granddaughters birthday and a good excuse to visit. we bought her birthday gift already, saw a cute dress and couldn’t resist. I have been buying gifts for family and friends and putting them away. chris hasn’t asked me why I am christmas shopping just a couple of months after the holidays. I like the thought of still giving gifts after I am gone.
this is the High Museum
I have tried to upload a slide show that was forwarded to me and I have kept it and look at often. it is not only beautiful but has some great life advice. hope it works:)
snow
read my horoscope in the t.v. guide and thought this was interesting, the support of friends and family is fuel in your tank. ”sharing your process will inspire them to take better care of themselves, too.” I have never been a big believer in horoscopes and not sure this changes that, however, if this is true and even one person makes the effort to take better care of themselves I will gratified.
so here is a list of the information I mentioned:
Stable Angina
The pain or discomfort:
- Occurs when the heart must work harder, usually during physical exertion
- Doesn’t come as a surprise, and episodes of pain tend to be alike
- Usually lasts a short time (5 minutes or less)
- Is relieved by rest or medicine
- May feel like gas or indigestion
- May feel like chest pain that spreads to the arms, back, or other areas
Unstable Angina
The pain or discomfort:
- Often occurs at rest, while sleeping at night, or with little physical exertion
- Comes as a surprise
- Is more severe and lasts longer than stable angina (as long as 30 minutes)
- Usually isn’t relieved by rest or medicine
- May get worse over time
- May mean that a heart attack will happen soon
Variant (Prinzmetal’s) Angina
Variant angina is rare. A spasm in a coronary artery causes this type of angina. Variant angina usually occurs while you’re at rest, and the pain can be severe. It usually happens between midnight and early morning. Medicine can relieve this type of angina.
Microvascular Angina
Microvascular angina can be more severe and last longer than other types of angina. Medicine may not relieve this type of angina.
if you know there is something wrong with your body and your dr. does not listen find a doctor that will.
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as the world watched the tragedy of Terri Schiavo and what her husband and family went through, I decided then and there my family would never go through that. it was beyond sad and at times I felt such anger at the system that let her life and the tragedy of her death become a t.v. event and sideshow. this young woman had said to her husband and friends she would not want to be kept alive by artificial means and yet that is exactly what happened since she did not put it in writing. the anguish her parents went through hoping that somehow she would recover when several reputable neurologists stated that would not be the case here. her husband going through years of struggle with the same people he had once been family with. this was not an easy event for anyone involved, and those of us on the sidelines had some pretty strong opinions.
the one thing I hoped would come of this is more people taking care of business before it was too late for them. no family should have to go through this especially when it can be prevented. too many think oh I can wait I am still young, and healthy. well she was young and she thought healthy. beyond the group in Oregon and their fight to have the right to die with dignity are the cases like Terri’s. if she had just left her husband the medical power of attorney he could have made the necessary decisions and not fight with her parents, if she had left a living will her desires would have been crystal clear and no one would have been the bad guy making the decision to let her die with dignity.
don’t we all deserve to have some dignity left to us at the end? I certainly want to have my choices respected. more people need to understand the value of these documents and how easy it is to take care of now vs. letting your family deal with it during their most vulnerable moments. I understand for some it seems unnecessary, they will never be in that situation, but I am sure the young Terri didn’t think she would be either. we never know what is going to happen so accepting we are not safe from all things and that we are indeed frail human beings may be difficult but not as difficult as what the Schiavo/Schindler’s went through!
I would not have the energy today to take care of this so I am grateful to have it behind me and know that all of my family, whether they agree or not, know what my wishes are and that Chris has the power of attorney and my living will. this Wednesday I have to have a ct scan of my liver and possibly surgery to follow. for the past few weeks I have felt pretty good but the exhaustion is back along with the pain so we will see what happens. I am prepared for whatever comes good or bad. that is the best any of us can do. I don’t know whether to wish the growth is large enough to be removed, since this would ease some problems it is causing, or hope for it to be too small for removal. either way we will deal with it and be happy for whatever comes. we just celebrated our 16 anniversary, each milestone I am here for gives me such joy! now I am hanging on for the holidays:) I know they are months away however if I think how close they are it makes me feel like yeah I can see myself here for another thanksgiving, another christmas, another birthday for my dear grandson and son-in-law. I hope to continue to look forward, although looking back and remembering what a great time I have had makes looking forward even better! I wish for you all to take care of business like the living will, and take care of yourself, keep looking forward with anticipation and looking back with no regret.
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this is the High Museum
