Table of Contents

Table of Contents............................................................................1 INTRODUCTION...............................................................................1 Step 1The Living Will....................................................................3 Step 2Choosing Your Health Power of Attorney..............................7 Step 3Choosing your Doctor..........................................................9
Step 3AThe Step You Wont Take.......................................................11

Step 4VSEAD..............................................................................14
Introduction........................................................................................14 Legal / Moral Issues.............................................................................16 Dementia / Depression.........................................................................18 Saying Goodbye...................................................................................21 Hospice...............................................................................................23 Giving Care.........................................................................................25

Links............................................................................................28 About the Author..........................................................................29

INTRODUCTION
OKlets be analytical, first. The nursing home industry is big. How big? Google it, as I did. In 1999, over a decade ago, there were 18, 000 skilled care facilities (there, youve read itthe official nameand Ill now drop it), 1.9 million beds, and 1.6 million people living in these institutions. In 2004, the estimate was 1.4 million. Today? Nearly two million, of whom 30,000 are in permanent vegetative states, being kept alive by feeding tubes. Money? 75 billion dollars flows into these facilities from state and federal financing. Another 35 billion comes from the individuals themselves. Socall it 100 billion dollars. Annually. Average length of stay? About two and a half years. Sex? Two thirds of the residents are women. Discharge? 38% of those admitted to nursing homes are releasedor freed? from the facility. The rest dieeither there, or at a hospital following a transfer from the home. Who pays for it all? Medicaidabout 45% of the total. Medicare picks up another 11%. The rest? Private insuranceif anyandyou got it, the individuals themselves. A third of nursing home residents lose all or most of their savings. Abuse? 90% of nursing homes have staffing too low to provide adequate care. I could go on, but thats not my purpose here. You know nursing homes, as do I. Youve visited your parents, your friends, your family in the facilitieseach time squaring your shoulders as you walk in, adopting the hearty cheerful attitude, chatting with the staff. And counting the minutes until you could escape.

And in the parking lotwhat did you say? Not meIll never go through that! or words of the sort. GoodIm with you. And not just me70 to 95 percent of the general public would prefer not to have aggressive medical treatment if it resulted in a prolonged, incompetent condition. There is a way to cheat the nursing home. I know someone who did itmy mother. And you can do it, too. Heres how.

Step 1The Living Will

Or the advance health care directive. Or the health power of attorney (POA). It will be called different things, depending on what you sign and where you sign it. Essentially, the living will specifies your wishes and desires; the health power of attorney is the document that allows you to appoint the person (known as your agent) you wish to make decisions about health care, if youre unable. The idea started in 1969, when Luis Kutner, an Illinois attorney, proposed it in a law journal. It has since evolved, and following the way of cell phones, we are now in generation 3. What is it? Its a legal document thatimportantis unique to each state. It establishes your desires for health care if you are no longer able to communicate. A health proxy, or medical power of attorney, establishes the person you wish to make health care decisions for you if you are unable to do so. It should be easier than it is to get one and sign one. There should be a single form, valid throughout the nation. But theres not. There is, however, a nice alternative for people living in 42 of the 50 states. Called Five Wishes, its a form available for a small fee (5$ at the time of writing) through the Aging with Dignity Foundation. The Five Wishes form is both a living will and a health care proxy. Heres the link: http://www.agingwithdignity.org/index.php . And what are the five wishes? 1. The person I want to make health care decisions for me when I cant. This is the health proxy, or health power of attorney section of the document. 2. The kind of medical treatment I want or dont want. This is the living will. 3. How comfortable I want to be. 4. How I want people to treat me.

5. What I want my loved ones to know. As you can see, the form covers a lot of ground. You dont want your sister-in-law saying the rosary over you? Wish fourhow I want people to treat me. Want your hair done every week? Wish threehow comfortable I want to be. Want everyone to remember your favorite songCarefree Highways? Thats wish five. There are various criticisms of this form, not the least of which is that in eight statesAlabama, Indiana, Kansas, New Hampshire, Ohio, Oregon, Texas, and Utah its not valid. What do you do if youre living in one of those states, or choose not to spend 5 dollars on the Five Wishes? The US Living Will Registry is a good source. In addition to a lot of good information, they provide a page with links to download living will forms in all fifty states. Heres the link: http://uslwr.com/formslist.shtm . You could also drive by your hospital, and ask for a form (hospitals are required by law to provide it). You could ask your doctor. In theory, you might be able to write it in lipstick on a white linen table cloth, sign it, and get two friends to witness itbut I dont advise it. The most important thing? Have one! Why? Because you DONT want to end up a Terry Schiavolying in your hospital bed, while half the family battles the other half, arguing what to do with you. Anything you have will be better than nothing. OK, and you change your mind? Revoke it. Dont feel comfortable anymore with having your nephew be the health agent? Change it to sister Anne. Just get one, and sign it. Once you have it, and once its signed, what do you do next? Give it to your doctor, and tell her or him to put it in the front of your records. Give itof courseto the person youve assigned to be your health agent. Give it to all of your kids, if youre close to them. Lastly, register it on line. 4

Look, most people cant find their car keys. What chance is there that your nephew Billy can lay his hands on Aunties living will at three oclock in the morning, when the phone call comes from the hospital? A simple way to register you will is by clicking on the link above for the US Living Will Registry, but there are other resources online as well. Once youve signed it, given it to all concerned, and registered itis that the end? Well, you might want to review it, occasionally. You should be sure that the person youve chosen as your health agent still understands, stills agrees with, and still can carry out your wishes. And most important, you should be wary of signing another living willthe new document may nullify previous wills. The last scenario happened to my mother, after the first hospitalization that lead to a stay in a nursing home. Did we have a copy of Mothers living will, over which we had slaved, adding well over twenty stipulations? Yes, Mother didat home in some drawer. My copy was 3,000 miles away in Puerto Rico (we were in Wisconsin). Oh, said the nurse cheerfully, well just sign another one. Another form to sign Did I read it? Of course not. The ambulance was waiting in the subzero cold. That will nullified the previous willand all of our planning went down the drain. Was that a bad thing? Perhaps not. Oddly enough, the old will, with all of its stipulations, could conceivably have worked against me, as my mothers health agent. We had written, for example, that Mother not be subjected to any invasive procedures, or any procedure that took over 20 minutes (or some such thing), and that involved a potentially painful transfer from bed to a cold, hard surface. In retrospect, Im not so sure that was wise. Every situation is different. Technology is always changing. If I had needed to authorize a brain scan to determine, for example, the extent of an injury and the chances for recovery 5

would I have been able to? Theres something to be said for giving the health agent enough room to make decisions. And that brings us to the next stephow to choose your health agent.

Step 2Choosing Your Health Power of Attorney

Before you automatically choose your favorite child to be your heath agent, here are some things to consider: 1. Are you on the same wavelength, in terms of your wishes and desires? Have you spoken with him or her repeatedly, and explored a number of what would you do if situations? Is the person stable, and likely to maintain his, and your, beliefs? 2. How strong is the health agents character? Your favorite son may be the sweetest guy on earthyou love him dearlybut maybe your son-in-law (the used-car salesman) would be a better choice. At some point, your health agent may need to be standing up to a slew of doctors, nurses, and hospital personnelnot to mention other members of your family. You want someone with backbone. 3. How much healthcare knowledge does your health agent have? This is a specialized world, difficult to navigate even if you have knowledge. Maybe it would be better to have someone less close to you but with a medical background. 4. Geographical considerationsif the ideal person is 3,000 miles away (as I was), does that help if youre in the emergency room, with your cherished niece present, but not your health agent? 5. Physical and emotional healthsome people do well in emergencies, others not. Some of us are clinically depressed, or chemically addicted. And some of us are challenged by our own chronic health problems. 6. Consider also that you may have another power of attorneythe legal POA who can authorize financial / legal matters should you be unable to do so. Should your health agent be your legal POA? My feeling is nobut each situation is different. How well does your health agent get on with your legal POA? On this point, however, my lawyer / brother disagrees, pointing out that it may make life a lot simpler if one person is both legal POA and the health agent. 7

7. Lastly, if you are gay or lesbian, your partner should be some sort of POA unless youre married and living in the (currently) five states that allow gay marriage. Why? Because despite the Thanksgiving dinners youve served up to the family for the last 20 years, you are legally nothing when your partner is comatose in a hospital bed. Grim words, yes? But necessary, and when youve done all this, you can forget about it. And go on to step 3.

Step 3Choosing your Doctor

Your doctor is crucial. Why? Because she or he can make your opting out of the nursing home very easyor hell. Doctors are trained to save and sustain life. Thats what they do. They see a patient go into cardiac arrestand they jump on the chest and start the CPR. Yes, theres a sign in big red lettersDO NOT RESUCITATEtaped above your bed. It might send someone scrambling to get your chartwhile the CPR continues. But Ive worked in hospitals. Until somebody locates the document and starts screaming, the resuscitation goes on. Your doctor, thenexcellent as she or he may beis coming from a life-at-allcosts tradition. Doctors also have personal / religious beliefs, which may prevent them from acting on your behalf. So you are not going to just give the living will / health agent form to your doctor. You are going to discuss it, preferably with your health agent there with you. And youll start (as least, I would) something like this: Doctor, youve been an excellent practitioner and I deeply appreciate all of your splendid care over the last years. (You say this if you are deeply afraid of conflict and dont want to ruffle feathers.) This is my living will. If I am unable to make decisions about my health care, Im appointing Jimmie here to do so for me. I dont want to live in a state in which my quality of life is reduced to the point that I cannot enjoy living. I dont want to live in a nursing home. I want minimal medical treatment if I am not able to live a quality life. Ive discussed this with Jimmie, and he knows my wishes. When the time comes, I want to stop taking my medicines, except those that provide comfort; I want you to refer me to hospice care; and I want to stop eating and drinking. Ive read the literature, and I understand the process. Are you OK with that? Whew. In fact, a lot of doctors are good with this. An excellent doctor, of course, would have asked you before about your wishes for end of life care. But the majority of 9

doctors wonttheyre waiting for you to bring it up. So a good doctor will have questions, and youll have a discussion, and youll get a sense of whether in fact you allincluding your health agentcan work together. What if she or he says OK, Ill put this in your chart. Now how is your gout today? Not good enough. Or Im sorry, but I believe only God can make the choice of life or death. Find another doctor. Yesshop around. Call your friends. Call your local hospice to see if they can recommend a doctor who is sensitive to your concerns. Go on line, and contact Death with Dignity; heres the link: http://www.deathwithdignity.org/. There are doctors and there are doctors. But its critical that you change doctors if she or he cannot support your wishes. No matter how good he is, how close you are to his wife, and how many years youve sung together in the church choir you have to find another doctor. My mothers doctor, for example, was excellentyoung, fresh out of medical school, thorough and skilled. But when my mother wanted to die, her doctor felt that she was suffering major depression, and wanted to refer her to a psychiatrist. Good point, right? We pointed outactually, my mother said emphaticallyIm 89 years old. Im blind, Ive lost a lot of my friends, I cant move or walk around as much as I did. Im done. I dont care if I take more medicine and feel better. What will I have two or three more years? And what kind of life will I have? Not good enoughsee a shrink. We chose to see another doctor. An older, infinitely more lived woman, she nodded, asked some questions, passed me the Kleenex (thats a tough speech to hear your mother say), and referred her to hospice. Donein half an hour. But it might have been easier had we done all this before we were in the situation. 10

Step 3AThe Step You Wont Take

Suicideand I dont advise it. Aha, you think. Why bother with all this? Ill run out to the shed and get the . 22! Hasta la vista, baby! Or, I have my little stock of Valium! Heres why its not a good idea: Its surprising hard to kill yourself. A window washer survived recently from a fall of 22 stories. The bullet through the brain may not kill you, but incapacitate you fullythe very fate you want to avoid. Valium almost NEVER kills anyone. The garage window lets in a nasty draftyou never got around to fixing itand all that lovely carbon monoxide leaks out. Ive both read the literature and worked in hospitalsand a surprising number of people survive what should have been death blows. And the time would be? When the doctor diagnoses the Alzheimers? When the pain gets too bad? After one too many lonely nights? Or after you are blind, feeble, and too weak to load the gun? Which has now rusted shutor whatever it is that guns do? Most people wait too long, and then are unable to commit the act. Are you going to do this alone? Yes, because if you involve anyone else much less throw a big farewell partyyou are putting them in a murky legal situation. Somebodythat brother-in-law you cant standwill call the DA, and then your loved ones are up against an assisted suicide rap. What is your grandsonage 27 and going through a rough patchgoing to think? I completely believe you have the right to kill yourself. The problem is that it sets a precedent, opens a door, so to speak. And you may have every right to go through that door, but it may not be the right option for those close to you. Moral issuessuicide is a sin in virtually every religion. Not a problemif you dont believe. Certainly an issue, if you do. 11

Sosuicide is not an option. Or is it? There is, in fact, one almost fool-proof way of killing yourself. Its cheap, fast, legally obtainable, and best of allpainless. What is it? Gassing yourself with helium. Heres how it works. You go to a party store and buy a small tank of heliumthe same tank you would use to blow up balloons. You go to the grocery store and buy a turkey roasting bag. You go to a medical supply store and get tubing and a mouthpiece. You hook everything up, put the bag over your head, secure it tightly around your neck to prevent any air from getting in, and turn on the valve. Death comes in less than a minute. You can see a demonstration of how to construct all this onwhere else?YouTube. A nice thingyou do not have the sensation of being smothered, or of fighting for air. What are the problems with helium? Well, the bag (and it has to be a baga mouth / nose device wont work) has to be airtight. OK, a person in good health can do thatyou have your duct tape at hand, ready to wrap around your neck. But can you do that with your aged, feeble hands in your eightieth year? What happens if you release a lot of helium at once, and the bag blows? And dont think about asking anyone else to do it for you thats minimally assisted suicide. In addition, someone is going to have to discover you, and make a decision quietly remove the bag, and then call 911? Leave the bag on, and have a great alibi for the time of death? Do you arrange all this before handDrop by the house tomorrow morning, honey, and discover my corpse, if you dont mind. Or do you videotape the whole affairso that the DA can see you do it with your own hands (after first making a statement that you are mentally competent and that you are doing this of your own free will)? Laws vary from state to state, but to me, anyone watching you (and taping you) is potentially guilty of assisted suicide, even if they didnt put the bag over your head and turn on the gas. So you can only do this alone, which may or may not be your preferred way to die.

12

Unless the DA or pathologist chooses to do some very special tests, the helium will be untraceable. Assuming that you are old and in poor healthand thats why youd be doing thisyour death would seem natural. (If cousin Vinnie did get rid of the bag and canister of helium.) But still, there is a theoretical chance that the state could find out. Speculating further, the DA might like to know who took the bag and helium tank awaywhich might be tampering with a crime scene. And if Vinnie took the mask away, mightnt it have been Vinnie who put it on? And what if Vinnie was quietly at home at the time of death, and has no alibi? My last objection is simply aestheticaldo you want to die with a bag over your head and the worry that someone will have to discover you, and may face legal problems as a result? Not me. And paradoxically, not for my mother. She bought virtually the first copy of Final Exit, Derek Humphreys book advocating euthanasia. She studied it and knew how to end her life if needed. She donated money to right-to-die organizations, and followed Dr. Jack Kevorkians struggle for years. She collected her Valium. Plastic bags had a special meaning for her. And on the day of her death, the book remained on her bookshelfunused, unheeded, mockingly gathering dust.

13

Step 4VSEAD
Introduction Legal / Moral Issues Dementia / Depression Saying Goodbye Hospice Giving Care

Introduction
It seems crazy, cruel, and impossible. Thats what I said when I first heard of it. What is it? Its called Voluntarily Stopping Eating and Drinking (VSEAD), and its just what it says. Well assume that you have come to the moment when you no longer want to go on. Maybe you have cancer, and dont want to fight to the bitter end. Maybe you are old and weak, and your childrenhowever lovingare far away. Maybe, like my mother, youre simply doneshe was 89, fragile, blind. Why go on? Well assume that you are not depressed or demented (see below). And well assume that you have a living will and a health proxy, and that you have done the first three steps in this book. You will go then, with your health proxy, to the doctor, with whom you have discussed all this before, and who, you know, will be supportive. A good doctor will ask a number of questionsmainly to determine if you are depressed or demented. Shell want to know why. She may play devils advocate 14

dont you want to stick around to see your favorite grandchild get married? In the end, if shes satisfied, and if indeed youve discussed this with her beforehand and she sticks to her wordsshell agree. She will give you orientationdescribe the process, and especially stress that you can STOP the process at any time. Nothing is irrevocable. If you want a cold Coca-Cola on day four, go ahead and drink it. That will, of course, prolong the processyour goal is dehydration. But legally, if you request fluids, or even indicate that you want them, your caregivers MUST give you food or fluids. (She will look the health proxy sternly in the eyes as she says it.) Shell tell you that the sense of thirst and hunger fade after three days or so, and that youll be comfortable. Shell say that the body may produce endorphins natural painkillersthat will add a sense of serenity and peace to the process. Shell say that many people undergoing this process experience it as deeply spiritual, as do loved ones and caregivers. And no, she will NOT sedate you so that you are senselessly groggy through the whole time. Shell discuss what medicines you should take, and what you should discontinue. Though counter-intuitive, she may want you to continue some medicines that are meant to prolong life, such as heart medicines. Why? Because if you go into congestive heart failure, youll be quite uncomfortable, panting and struggling for breath. Shell give you a time framedeath usually occurs within two weeks, if you are rigorous about drinking and eating nothing. Shell discuss the need for excellent oral care, to avoid having a dry mouth that will increase the sensation of thirst. Shell ask if you have questions. Then, shell make a referral to a hospice, which (we hope) is available in your area. And youll leave the office not believing it can be so easy.

15

Legal / Moral Issues

Yes, its legal. To date, no state in the US, or country in the world, can force you to eat or drink. Its your body. Nobody can compel you to nourish or hydrate it. Saying which, I will make the usual disclaimers. I am not a lawyer. I have not investigated nor read every state statute, nor do I know what the future will bring. At some point, a state legislature may enact a law criminalizing VSEAD. Check with a lawyer if you have further questions. What is illegal, of course, is to withhold food and fluids from a patient who requests them. Thats why your doctor gave your health agent that mean look. The other issue is mental status, which means are you able to make an informed decision? Are you depressed? Are you demented? Thats why your doctor asked all those searching questionsshe needed to know that you were lucid and not suffering from a mental illness. (And she will document that very well in your records.) If you are demented / depressed, see the section below. Now, is it moral? Well, thats trickier. Yes, I think it is. Most of the major religionsincluding the Roman Catholic Church, not known for being a pushover on moral issuesthink it is. Why? Because VSEAD is not suicide, it is hastening death. A natural death. OK, time to come out of the closet. I am an official atheist, as was my mother. That said, the distinction between ending a life versus hastening death seems silly to me. But you may be very religious. In that case, talk to your spiritual advisor especially since he or she will want to be involved with you as you end your life. One last thingyes, my mother was an atheist. She was alsothough she sniffed at the ideaa very spiritual lady, deeply connected to nature and the world. (One of her friends, in fact, stoutly claimed that she was religiousin the original sense 16

of the word: religion comes from Latin and means to tie people and things together. And that would be my mother.) And I am secretly a Buddhistthough a bad one. But I can tell youthe experience of ending her life was indeed deeply spiritual for all concerned. In the last week of her life, my mother flowered and culminated her life. She resolved three old issues with her family. She reviewed her life, and cherished it. She said goodbyefully, actively, and with great curiosity. And she moved even casual acquaintances deeply. In fact, even after death, she affected people. The guy from the funeral home who came to collect her body couldnt believe the story of what she had done, and how easy and beautiful it was. Wow, he kept saying, she did WHAT? We spoke for half an hour or so, until at last it began to feel a bit surrealwas this a social visit? Didnt he, ummmh, have something to do? I gently nodded at Mother and said, Ummm? At last, he moved into action. Dont believe me? Well, check out the link that follows. Its from The New England Journal of Medicine, and it reports on the impressions of hospice nurses who have gone through VSEAD deaths as opposed to doctor-assisted euthanasia. They report that the experience of VSEAD is more spiritually charged than euthanasia. http://dying.about.com/gi/o.htm? zi=1/XJ&zTi=1&sdn=dying&cdn=health&tm=154&gps=656_469_1276_605&f=1 0&su=p736.13.336.ip_&tt=2&bt=0&bts=0&zu=http%3A//content.nejm.org

17

Dementia / Depression
Heres the deal10% of people over 65 have Alzheimers, and 50% of people over 85 have the condition. According to the CDC, life expectancy in the US is 77.9 years. What does that mean? Well, we dont all get born, live our lives until just shy of age 78, and then die. Some kids die of crib deaths, or childhood leukemia; adolescents die in car crashes or murders; death comes to people in their middle years. And that means that there are a LOT of people surviving into their 80s and 90s. And theres no reason to think that, with every year past 80, your chance of succumbing to Alzheimers doesnt increase. You can read about Alzheimers on line, and probably should. A good place to start would be http://www.alz.org/index.asp I should also state here that there are many types of dementia, and that I use Alzheimers as a catch-all term for any long-term, progressive, confused state. What does all this mean for you? Well, the first thing to do is take care of yourself. Yup, its time to start eating right, getting physical exercise, curbing smoking and drinking, and doing exercises for the brain (Sudoku, Rummikub, crossword puzzles, etc.). Its also time to be going to the doctor routinely, and getting checked for blood pressure, vascular studies, etc. But lets say that you do all of that, is it going to be enough? In my mothers case, she ate well, exercised, didnt smoke or drink, and loved Rummikub (and routinely beat us at it). The ugly truth is that no matter WHAT you do, youre fighting (the current thinking is) genetics. There may not be much you can do. So one day you go on a business trip, and go through the conference, and wake up the next day, and check out of the hotel. and discover that its Saturday, not Sunday, as you had thought. And now, trembling, you have to go back and check in again. 18

Youre getting confused. Youre losing some memories, especially of recent events, not your childhood. You have a strange feeling that things are unreal. Your mood and affect change. Alzheimers, right? Could be. But it could also be major depression, which in the aged population mimics many of the signs of Alzheimers. In fact, distinguishing one from the other is a major diagnostic trick. And a trick that only a very few doctors possess. In my mothers case, she was on a waiting list for months to see an Alzheimers specialist, and died before ever seeing him. Or is it a reaction to your medication thats causing the symptoms? Already, in my 50s, Im swallowing a handful of medicines every morning and night. How many pills does the average 78 year old take? And what about the interactions? And whos monitoring it all, as you go from one specialist to another, each one blithely prescribing another new pill? Reading the product information should help, but virtually every medicine lists confusion and death as an unwanted effect. The wise course might be to go on anti-depressants and see if you get better, since, unlike Alzheimers, depression is quite treatable. Unfortunately, youll have to wait 2 to 4 weeks to notice the effects. And if you dont notice the effects? Then you have to try another anti-depressant, because quite often one medicine works when another doesnt. Nor can you just discontinue the old medicine and start the newyou have to taper off. And youre 78time is running out. And each day, your depression / Alzheimers / whatever-it-is is getting worse. This is no fun. And it creates a BIG legal / ethical issue. The good news is that Alzheimers takes a long time to develop. You can go onto a few drugs that may slow the progress of the disease. Youll have good days and bad days.

19

But at a certain point, I believe you must act, as my mother did. Alzheimers? Major depression? Who cares? She felt, I think correctly, that it was time to go. She had done it all, and didnt want to go on. Time to say goodbye. And most critically, she didnt want to wait until she was drooling and tied into a wheelchair at Sunny Hill Nursing Home. Heres the thing. Even though she had stated quite specifically in her living will that she did not want food and fluids if she were demented and could not enjoy her life, and even though she directed me, her health proxy, to order that food and fluids be withheld in that condition, it presents BIG problems. Its a pretty hard thing to ask a loved one to do, for one thing. And if youre in a nursing home, its going to be a hard sell to get the facility to do it. And what about the night nursethat old demonwho feeds her and gives her Ensure at 3 AM, because she doesnt buy in? And what about youcompletely gaga, and screaming for water? The legal question is whether a younger, competent self can bind an older, incompetent self. And to my knowledge, nobody has answered that. But you can be sure that someone will raise the question. Which is why my mother took a deep breath and made the decisionnows the time. Im not waiting until I dont recognize my children, or know where I am. And thats what you, and I, and all of us should do.

20

Saying Goodbye
OK, youve made the decisionno more food, no more fluids, you will await your death. The doctor is on board, the hospice people (see below) are involved, now its time to say goodbye. Why? Well, most of us have unresolved issues, things that havent been said, scores that need to be settled and apologies that need to be made. So now is the time to call your brother, with whom you fought over Watergate, and say, look, that was pretty stupid, and Im sorry for the years we didnt speak, and you know, I never stopped loving you and thinking about you. I used to suffer on your birthday, and think about calling you, and I was just too damn stubborn. Im sorry. Forgive me. Hard, right? Yesbut the nice thing is that in almost every case, the person responding will say, Oh God, Frank, Im just as much at fault as you. I love you too. Or words to that effect. So youll have that cleared up, and that will mean a LOT. Saying goodbye is also reviewing your lifethe good moments, the bad, your favorite things, the people you have loved, and perhaps lost. The mistakes you made, which, I suspect, will not hurt so much. And here its time to say that nobodyto my knowledgehas ever concluded at the end of their life that they wish they had spent more time at the office. Saying goodbye means that your friends and family are going to come, be with you, and say goodbye. And that will be immensely moving, as well as painful. But very, very necessary for them, and for you. In my mothers case, she didnt wantinitiallyto see her friends, who were many and tremendously loving. Her friends, however, were having none of that. One of them took the bull by the horns, brought food and wine for us and a big pot of white geraniums for my mother, and got into the car. 21

What were we going to domeet her at the door, take all that stuff, and send her away? Of course not. We brought her in the house, both she and my mother dissolved into tears, and they said goodbye. And after one friend broke the ranks, could we prevent any of her others? Of course not. So we made the calls, and they came in half hour periods. We took pictures. We went through a lot of Kleenex. But it was indisputably the right thing to do. As the last friend departed, it occurred to me that my motheran overachiever all her life with a great sense of pridehad painted herself into a corner. Well, I said to my brother, shes gotta do it now. If she calls any of her friends in four days time and announces that shes changed her mind, and is eating a steak with a good slug of bourbon, theyll come back and kill her There was thatbut also something else. Those last visits sealed her decision, in her mind. It was official, it was going to happen. Every important momentwell, most of themhad been shared with her friends. This was no different. Oh, and a last good thing. All but one of them were very supportive. Only one, quivering, said, oh, I know its right for her, but I wish she wouldnt We understood.

22

Hospice
If hospice care is available in your area, by all means involve them. How? Get a referral from your doctor. Why? Because if your experience is anything like mine / ours, theyll be godsends. The hospice movement started in England with the work of Dame Cicely Saunders. Later, Elisabeth Kubler-Ross wrote her famous book, On Death and Dying. Both contributed to a sea change in thinkingaway from curing / fighting-death-at-allcosts, to supporting and caring for patients, on their terms, in their final days. What does that mean? The hospice teamthere will likely be a nurse, nursing assistants, a social worker, a bereavement specialistwill do an initial interview, in your home. Theyll see what you need, in terms of equipment, nursing care, family support, etc. Their job is to give you anything they can to help you have a good deaththe death you want. Some hospices have their own buildingswhich have equipment but DONT feel like hospitals. Some do not. They will give you a telephone numbersomeone you can call at any time. They will visit you in your home, and monitor your progress. They can draw blood, if theres any good reason to do so. Importantly, they can and do advocate for the patientcalling the doctor, getting orders, etc. But most important, they will orient you, and your family / care givers. Theyll tell you whats going to happen, and when. Like the doctor, theyll explain that stopping eating and drinking usually takes two weeks, that the sensation of thirst / hunger fades after several days, that you may have a release of endorphins, that youll weaken gradually, become drowsy / somnolent, and pass on. Theyll give a lot of support to your caregivers and family. How to position a person in bed, to ease breathing (on the sides, not on the back). How to give medicine if a person cannot swallow (rectally, or even vaginally). How to give 23

oral care (little pink toothettes, every hour or soand sure, dip it in bourbon if you want to..). In short, theyll be amazing. I was a nurse for over a decade. I have NEVER seen better health care professionals than the team that took care of my mother. Care giving was easy for me, and also part of the spiritual process that we went through. I would, however, strongly urge you to do as we didhire a nursing assistant or someone with medical experience for the night shift. Why? Because there is nothing better than getting a good nights sleep, and waking up rested the next day. Expensive? Well, yesit may be. An RN from a private service is pricey. But there are alternatives. In Wisconsin, there is a group of people called The Good Peoplemostly Eastern Europeans, who will live in or come for the night, and give care. They were far less expensive, and utterly reliable. And very kind. Even if you spend 100 dollars a nightthe final cost for two weeks is going to be 1400 bucks. Well worth it. Sell your old Woodstock poster on eBay, and get some sleep. One last thingthe hospice people can usually pronounce death. That means no coroner, no calling and waiting for a doctor. Its directly to the funeral home for you.

24

Giving Care
Theres something very special about it. Especially if its someone very close to you, as it well may be. In my case, it was my mother, the woman who had borne me, washed me, fed me and got me into something like adulthood. And now, I was doing it all for her. Assuming that the dying personlets avoid the word patient, right?drinks nothing but the sip of water necessary to swallow pills, death will come to him or her in about two weeks. The first days will be unremarkablewhatever level of care and mobility will be essentially the same. Let your loved one call the shots. If he or she wants to be out of bed, sitting in her favorite chairdo it. She wants a spin in the country? Put her in the car and go. But at a certain point, the weakening starts, and the care giving will be more pronounced. Obviously, the mouth is your first concern, from the word go. Give the little (hideous) pink toothette dipped in water (or bourbon) about every hour. Do NOT give ice chipsthats water, in solid form. If he or she can spit, brush the teeth, rinse, and spit. Keep the mouth as wet as can be, without actually ingesting water. Sadly, even with what I thought was great oral care, my mother developed a blocked salivary gland on the seventh day of her fast. It was very painful, and not easy to treat. The hospice nurse came, and suggested giving Vicodina very strong painkiller that my mother happened to have in the house. That reduced the pain, and also sedated her greatly. If you possibly can, avoid cooking food, with all those wonderful smells, around your loved one. In our case, we had an upstairs kitchen, and could cook there. But you may have to do deli, for a while. Even with the kitchen upstairs, I ate a LOT of potato salad during those days. Theres going to be some equipment youll need. Get a hospital bedugly, but very useful, and itll save your back, and help make the dying person more comfortable. Generally, youll want the head of the bed raised a bit at the end, when he or she has weakened and is not getting out of bed. Itll help with 25

breathing. Get a bedside commode, and learn how to do a simple transfer. The hospice people can show you how, just as I taught my oldest brother. Why? Well, bedpans hurt, and you need gravity to fully drain your bladder. How, you ask, can anyone be urinating without drinking? Wellsorry, Mombut I have to tell you; against all odds, my mother was putting out urine even at the moment of death. They said it wouldnt happen; I can tell you that it did. Youll want some of the famous blue padsthe plastic things that absorb urine and save you a complete bed change. You put these under a towel, and youll do a lot of laundry. In the final days, youll want to keep your loved one on his or her side, in bed. It makes breathing easier. It also, of course, prevents bedsores. To me, a bedsore didnt seem like a big dealI knew my mother would die in days, by the time she was bed-ridden. But it is importantthese are the last moments. Finally, medications. Give them by mouth, when possible, with a very small amount of water. In fact, I would routinely give my mother half a glass of water, and she rigorously returned it un-drunk. As the person grows weaker, you give medications rectally. And here, I will confess. After the eighth day, when my mother finally took to bed and was unresponsive, I gave her Valium every four hours, on the dot. Yes, it was prescribed as neededbut why stint? Why wait around to see if she starts moaning and thrashing? She had said goodbye, she was on the way out, death was imminent. And death came. And we washed her body, finally using the expensive soap we had given her, and which she had never used. My niece on one side of the bed, I on the other, we began the ancient ritual. I brushed her hair from her brow and peered into her blue, unblinking eyes. The room grew silent, and time expanded there was nothing more real. Dipping my hand in the washbasin was a shock. And so we started at her face, so lined and loving, and washed her mouth, which had

26

given me a thousand smiles. Then her neck, then the breasts which had suckled me half a century ago, then the pubic area. The circle of life had turned.

27

Links
http://nreionline.com/seniorshousing/hcp_nursing_home_0831/ 2009 article on acquisition of HCP for 720 million http://www.highbeam.com/doc/1G1-120292889.html Georgia says largest nursing homes run worst operation. http://www.hospicepatients.org/ilaswan/largest-nh-chains.html list of top twenty nursing home chains http://takingnote.tcf.org/2008/06/how-much-do-we.html excellent blog entry re chains and businessgreat references re Vanguard founder Bogle and NY Times articles http://www.nytimes.com/2007/09/23/business/23nursing.html?pagewanted=1 NY Times article from 07 on nursing home chains http://www.wikinvest.com/concept/Nursing_Homes 2007 article on size of industry http://www.newyorkparalegalblog.com/2009/11/nations-largest-nursing-homepharmacy.html 112 million settlement from Omnicare Inc., the biggest supplier of medicines to nursing homes (kickback for contract)

28

About the Author

Marc Newhouse is the author of Life, Death and Iguanas, a soon-to-be-published e-book about the life and death of his mother Frances Newhouse.

Copyright 2012 by Marc Newhouse

Please feel free to share this document. All rights reserved. No part of this book may be altered in any form or by any means without the written permission of the author.

Cover photograph: Frances Newhouse in May 2010, five days before her death. Photo by Rafael Fernndez Toledo. Cover design by Ta Fernndez Toledo

29