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LET'S TALK ABOUT IT  / Let's Talk Archive /Discussion Forum / Carenotes

Let's Talk

Welcome to Let's Talk About It.  In this special section we will feature the question/topic of the month and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to participate, just follow the link provided at the end of the question/topic and add your comments and thoughts.

Question/Topic for September 2009

What end-of-life planning have you put in place for yourself or your loved one?

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Name: Sandy
Location: Kansas City Metro
Date: 09/07/2009
Time: 06:46 AM


I'm one of the few who has had an opportunity to experience what "holes" I had in my end of life planning...and rectify it. As a nurse, and very aware of the need to prepare for the expected and unexpected, I have had a Will and Living Will since my first pregnancy. I have also discussed my desires for what should happen, upon my imminent death and/or thereafter, with my husband, children, friends, the executor of my Will, my pastor, and my doctor. I have a Living Will as part of my hospital and medical records and even travel with it. My driver’s license lists me as an organ donor. One such provision that I have always felt strongly about, was that my organs be donated. I even said that, should I be in an accident and be deemed brain dead, that my body be kept alive only for the purposes of donation. I didn't want certain drugs given that would harm my organs for donation. However, I failed to have this discussion with my parents, who I rarely saw, didn't call (and any calls were initiated by me), and who had never come to see me during any other time of difficulty and/or crisis in my life. My mom didn't come when I begged her to come stay with my children for a week, right after my divorce, while I went on a business trip (so I wouldn't lose my job), just a year or two before this. She also hadn't come the 4 1/2 mos. I was on bed rest, incubating my son, had premature labor and high blood pressure, and then, when I almost died in childbirth, and only stayed 10 days of the 10 weeks I was so ill with PIH, a bleeding problem (and my baby screamed from 8:00 pm - 0400 am every night) so it didn't occur to me, when making out my Will, that I needed to define who "family" was. I had also filled out a Living Will at that time. In 2004, I suffered a sudden death at age 41. I had lost my job a year and a half, prior, after an accident that caused a protrusion of a disk in my thoracic region (which is rare without causing paralysis and therefore could not find anyone who knew anything about treatment). I was taking numerous pain pills and could not get any relief. Without an income, I didn't want to go see the doctor just because I had the flu. I had been ill, with the flu, for 4 days, and on the fifth, dropped dead in the kitchen with a respiratory arrest (I didn't realize I had pneumonia that resulted in a collapsed lung) and then a cardiac arrest (from not breathing and an electrolyte imbalance from the vomiting and diarrhea). Just by chance (and I'm sure, God's doing), it was a "snow day" and my children were home from school. Long story short (but I mention this because I counted 7 miracles as to how I sit here today, typing this), as I lay in the coma that my doctors said I would never recover from, and by the off chance that I did, would be nothing more than a vegetable (which, when one relies only on medical truth - was the truth. However, I am blessed, by God, to have been given the miracle of a second chance), my son contacted not only my best friend, the executor of my Will (and nurse, lawyer, and the one I desired to take my children to rear if I died prematurely), but also my parents. When my parents arrived, they and my best friend (who knew about my desires for end of life and how and who should care for my kids intimately) had differing ideas of what should be done and how it should be done. My daughter still cries when she talks about what my mom said and did to her, during that time. I am forever grateful to my friend/s who stepped in and tried to protect her. In the end, luckily, the papers did get signed for the donation of my organs. I still feel somewhat badly for the families that were expecting them, though, and hope they have been able to get them, in time, from someone else. It was an incredibly stressful time for my children, not just because their mom was dying, but who also witnessed the arguing between my parents and my friend. So, while I have extremely limited memory of this time, I only remember my friends being there - not my parents. I have only two memories of my parents, after waking from the coma, both were of the day before they left -with anger (because my Dad thought I wasn't rearing my children well because I hadn't cleaned out the car during the 6 weeks we had below freezing temps just prior to the incident) and hurt (because my mom, again, said she "couldn't" stay any longer, despite me having two young children and could barely walk to the bathroom, still recovering from the coma, CPR, and chest tubes), and I haven't seen them since (not even for the following two hospitalizations, necessary for the nosocomial infection I contracted while hospitalized during my coma, requiring an additional total of 3 weeks of hospitalization only a few days after they left and the following month, where my neighbor and friend, bless her heart, helped care for my children). Afterwards, I changed my Will and Living Will to distinguish who I included in having the ability to make decisions for me, should anything like this happen again (but I hope I go in my sleep next time - lol). "Family" is quite vague when one is thinking of an immediate family vs extended family. As I sit here now, I am also reminded that I should change my Will again (I have since married a wonderful man - and no, although invited, my parents didn't come to the wedding). One should also have a Power of Attorney. After my 24 year old friend, a month before their baby's due date, lost her husband, and couldn't access her bank accounts, all my bank accounts have my children and/or husband on them, as well as having them named as beneficiaries. I have a life insurance policy (term, of course) that covers my salary x 10 (so it can be put into a mutual fund and my kids/husband can live off the interest, as historically, the market has proven). And, about 2 years ago, I went and prepared my funeral and cremation arrangements with a local funeral home. Although I could not pay for a prepaid plan (it took over 5 years to obtain Medicare and disability - as I can no longer work with the deficits and brain damage that has occurred, as well as still dealing with other health issues), they allowed me the ability to write everything down and plan it. I encourage everyone to do this...since most people think you have to have the money for pre-paid plans. My husband has an extremely difficult time facing my current health issues in view of a good possibility that I may "go first" and hates to talk about it. So, although I keep trying (and encourage EVERYONE to do this), I have made sure to let him (and my son, who is now of legal age) know where to find the paperwork and which funeral home has my info. The home also gave me a packet I could use to write even more personal things down (like songs I'd like sung at my funeral, anything I'd like read, favorite scripture, etc.). I have actually been planning more of my funeral (not in a morbid way, but as a celebration of my life and the gifts He's given me and the desire to thank those that influenced my life) because I have come to realize how difficult it would be for my husband and children, and how it is something I can do for them, because I love them so much, and want to spare them from having to make these decisions during a time of grief. It's not because I feel the need to control those decisions (except the organ giving part) because I don't believe I'll care - my body only houses my soul, which I believe, will be with Him. And, God willing, should my parents still be alive, I really don't want them planning it because they don't know me. After I'm done, I'll give the papers to my Pastor and save him the effort as well! I think it is the least we can do for our families...and those who could so benefit from our organs. Also, it is important to discuss all your plans with a lawyer, get info on estate planning, etc. The laws surrounding Medicare, Medicaid, Estate Taxes, Taxes, etc. are always changing and always complicated. Do not believe everything you hear from folks who said they heard it from someone who said.... Just recently, I learned someone had not applied for Medicare because they thought they had to loose everything (their home, etc) before they were eligible. Nonsense. Someone else I spoke with thought that their belongings automatically went to her children on her death because she had no husband. WRONG. When you die without a Will, your stuff and money go into Probate - which means someone ELSE gets most of it in fees and taxes, before your kids see any of it...and it will take a long time. Educate yourself. And, plan for your death and the possibility of it taking a nursing home, home health, etc... . As long as we don't have a government run health care system, you still get to have some choices. Find out what they are and how you want to use them. Another thought about planning... PLEASE realize that the doctor you choose is working for YOU. If you do not believe he/she answers your health care questions to your satisfaction, refuses to tell you all the options and their consequences, or believes they are God, find another doctor! When you go for an appointment, write down all your questions. These questions should include (not with every appt. but definitely when it comes to the serious ones), "Are there any other options? What are the side effects and/or consequences of those options (in addition to the one he believes is best)? If you were in my place, what would you choose? Do you believe yourself to be an expert in this field? How many of these procedures have you personally done? Will you personally be doing this or will you be supervising a Resident, medical student, etc.? How will this decision affect the time and quality of my life? How long will it extend my life? Is this a cure or a delay of the inevitable? What are the statistics regarding this procedure, treatment, etc? What's the worst thing that could happen if we do nothing?" Get a second opinion any time there is an invasive procedure suggested (and do not ask your doctor who he/she recommends- they suggest doctors who think like they do). Do not rule out "Alternative methods" like accupuncture, chiropractic care (honest - there are some great ones out there), etc. Consider a combination of both Eastern and western medicine. If you do not agree with your doctors (especially moms when it comes to your children...your gut feeling is your God-given instinct talking), see another. And, PLEASE, understand, what it means when you say,” Do everything you can". The first code I ever saw was on a 90+ year old granny whose family said, "Do everything you can". I watched, in horror, has she was given, not only meds through the IV's (that caused her fragile veins to blow and the only way to give them was to start more...and finally, a main line to the heart itself), but also defibrillating her, doing CPR while I heard her old bones breaking (and I can attest that even when one is younger, CPR HURTS - your chest will feel like an elephant jumped up and down on it for several weeks), shoving a catheter in her so she could urinate and they could assess her kidney function, shoving a tube down her throat so the ventilator machine could breathe for her, and another person, taking blood, blood gases, and various cultures from every orifice, and it was all in vain. I felt like I'd witnessed a rape. I had to go to the bathroom so no one would see me vomit, shaking, and crying. Then, I came out and removed all signs of it, so the family could come in and say goodbye to her, without seeing all the tubes, Iv's, vent, catheter, machines, etc. Is that really what you want to have happen in the last few hours of your or your loved ones life? Granted, all that is worth it when someone has a chance, but on a 92 year old? Sometimes, it is just time to let go. Sometimes, it's just better to hold a hand, ask God to help you let go, and let someone go in peace. I want to be very clear, though, that I do NOT condone euthanasia or keeping treatment from someone based on financial reasons. But, each person, I believe, has the right to decide for him or herself, how much fight they have left in them and to know, if they are willing to fight, what the medical chances are...and then pray and expect miracles. And, I believe, that when the miracles don't come, understand that God knows your pain and is there with you. And, that God can take any "bad" thing and make something good come from it. And, if you believe in Him, and your loved one did/does, you will get to see them again and it's not over. And, take time to grieve, and understand that everyone grieves in their own time and way - there cannot be judgments as to a "right way or a wrong way". . And, as a last note to anyone struggling with emotionally unhealthy parents, I believe I can also pass on this advice - let God heal them and only He can. Realize that they are just humans...imperfect and unable to meet your needs the way you'd like them to. And, I do believe they can love you only as much as they know how. If they haven't been taught or have issues with pride, you cannot change it. Above all, find that fine line between that continuation of trying to maintain a relationship and sharing the Gospel (by sharing how God changed your life - but don't "preach"), and letting their toxicity affect your self-esteem - and do not allow them to abuse you. Set limits, and if they cannot stick with them (i.e. "do not call me names and do not call my children names", or "do not promise my kids anything you cannot or will not deliver"), let them know what the consequences will be (i.e. "I cannot allow you to hit me or my kids, or to talk to me that way and until you can have a conversation with me that doesn't involve name calling, my short-comings, etc... I'd rather not talk with you.). Be prepared that it might be years before they talk to you again - but never stop praying for them...and ask God to heal you. We are just so fortunate that He can and will. I just feel sad that they have missed out on getting to know and have a relationship with my kids, who are wonderful people and bless anyone who knows them. And, they missed out on getting to know me and I'm not so bad either! Don't put this off another day. I have seen way too many folks who thought they had more time. And, I sure didn't think I'd die on the kitchen floor in my undies, feeding the cat. Gee, after 4 days of the flu and not being able to shower, I'm not sure my undies were even the cleanest. But, that isn't the part that was talked about. How it affected everyone else, my kids, my friends, me, is what we talk about...and that's what your friends and loved ones will. Don't make them remember you as the one who didn't care enough about them not to prepare for the expected...because, I promise, you TOO, WILL die. Sooner or you might as well prepare for sooner- and it isn't something that will never be used...and is always useful...and always loving.


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