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When the Time Comes (Part I)By Virginia Cheek with Pam e RossYou and your spouse each sign an advance directive. Like many people, you request that you not be kept alive by artificial means. You name each other to make medical decisions when you are unable to do so yourself. The chances are one of you will have to face making the final decision for the other. But how do you tell them to end the life of the one you love?My husband Bob has a cold. It doesnt seem as bad as the cold hed had a few months earlier, but he is wearing his coat and hat in the house, and he isnt washing or shaving. I get upset and yell, I cant bathe you. I cant do everything for you.And then I stop to think: what am I doing? This isnt like me; I always try to help him.Its a holiday weekend. His doctor is not available Saturday, Sunday, or Monday. By Tuesday afternoon there is still no return call. I help him get his shoes on and drive him to the emergency room. They take us right away. The say it looks likes pneumonia and he is admitted. Because I dont drive in the dark, I leave him in their care and head home. I call one of my friends from church. He calls another Elder. Later that evening we return to the hospital together. They give him a blessing. Bob looks half dead.Either it is the blessing or the drugs, but by the following morning he is a lot healthier. The nurse takes out his dentures. He sits grinning, toothless, with a weeks worth of gray stubble. He tells me funny stories he heard from the nurses. The following day he is weak again. They try to get him out of bed. He is unable to stand. He barely eats. The next two days when I visit hes asleep. I cant wake him. I sense something is wrong, but also think the medications they have him on must be causing this.My daughter Pam calls daily to check on things. On Saturday she meets me at the hospital. When Bob does not respond, she calls in a nurse. The nurse cannot wake him but tells us he is fine. We wait hours for the doctor. When the doctor arrives, he cannot wake Bob either. He blames it on Bobs age and his recovery from pneumonia. It is only after Pam insists something is terribly wrong, that the doctor orders some tests. The hospital puts a feeding tube through his nose for nutrition. Two days of tests later, Bob is still not responding or eating on his own. When the doctor arrives today I plead, What else can be done to help him?There is nothing much else we can do. Perhaps you should consider putting him into a nursing home with a permanent feeding tube, he answers.When I burst into tears the doctor responds, I didnt mean to upset you. Good God, how could this news not upset me?When most people cry they shed tears. With me mucus pours from my nose. A male nurse hands me wads of tissues. Then he gives me a full box. Then, because he could see I need it, he retrieves yet another full box. I receive a call at home. They tell me Bob is being sent to another part of the hospital where they are familiar with stroke. What stroke? No one officially explains to me that Bob had a stroke. Is this why the doctor says to consider a nursing home? Pam and I with help from her nurse friend, have the doctor dismissed from the case. My other daughter flies out from the east coast to be near her dad. I am really worried about her. Audrey is Daddys Little Girl. On her wedding day she says, Dont play Daddys Little Girl or Ill cry my eyes out. But now she is strong...for me. She says she did all her crying before she arrived. The right side of Bobs body is paralyzed. He cannot speak or swallow. Yet he manages to pull the nasal tube out every chance he gets.Over the next two weeks we lose count on how many times my daughters and I make the decision to remove his tube and let him go. But glimpses of my husband return and we back out. Audrey returns home. When she calls I give her the grim news that her father has not improved and we must let him go. She says she waved goodbye to her Dad on the way out. When he waved back she knew it was probably for the last time. What a brave girl.I have this Guardian Angel, or Spirit, or Genie. Sometimes she makes things stop working for my benefit, or to protect me its happens so often I no longer dismiss it as coincidence. After we make this final decision, I sit down with Bob. I tell him about the stroke. I explain that due to the paralysis, he has a feeding tube because he is unable to eat or swallow properly on his own. He doesnt hear a word, turns out his hearing aide isnt working.In the meantime arrangements are made to have a permanent feeding tube place in Bobs stomach. A caseworker from the hospital calls to set up a conference about Bobs care.The attendees of the conference are Dee, the casework, Pam, myself, plus Bobs two doctors. Dr. M is Bobs neurologist. He is a big kind man and the only one who tries to explain Bobs stroke to us. Dr. G is Bobs new lead doctor. Dee, the caseworker is in agreement with me about the mishandlings of the first doctor. Yet, she herself is negative about everything. She tells us, You are mistaken when you say Bob is aware and can communicate. She reminds us that Bob is 88 years old with severely blocked arteries and is a good candidate for another stroke. She spouts all of the problems of surviving on a feeding tube and says it will all be downhill from here.Dr. M. talks of Bobs past condition before the stroke and his present condition. He gives his opinion that Bob can be rehabilitated.Dr. G, the replacement for the doctor we let go, is brand new to the case and doesnt say much.Pam and I sit and listen to them all, but of course we cannot let go of hope that Bob can improve.After the meeting, Dr. G comes to check in on Bob. She attempts to speak to him. He appears to be in a stupor with his mouth hanging open. She says, When they have that look theyve had enough. He really wants to go. How can I let him go? I love him so much. 63 years of marriage, I dont think theres enough Kleenex in the whole hospital for this. Dr. G. leaves and the negative caseworker comes in. She tells Bob he will be going to Hospice. Just then Dr. M arrives. I can see the disapproval on his face as he walks out of the room.No one remembers to cancel Bobs operation for the gastric feeding tube. I watch as two orderlies come in and wheel him away. I dont try to stop them nor do I tell them Bob is going into Hospice. I cant open my mouth to say anything.Why it is no one tells them of the change in plans? This is the second time something stops us from ending it. The next day Bob is moved to a nursing home. Bob has an expression he uses whenever he disagrees with you, Who Sez?The caseworker says we are dreaming when we say Bob understands us. The next day while in Bobs room, the television is on. With his good hand he manages to scribbles on paper 58. He points to the TV. Channel 58, the Move Channel, is his favorite station; it has no commercials! Pam and I jump for joy. Who Sez he doesnt understand anything?Although he is in nursing home, it is just a matter of time before the caseworker will call to tell them to put him on Hospice. A young therapy worker with the right attitude says, We have received no orders about that. This is a rehab facility. We're going to rehabilitate him. Bob uses every bit of strength to sit up or pull himself straight when he falls sideways. Who Sez he wants to die? Now I am happy they put in the more-permanent feeding tube.Once again, I explain to him his situation. I tell him the gastric feed tube is what is keeping him alive. I ask him if he wants it removed. This time he lifts his good arm waving it sideways, giving me a definitive No." Good, I say, Because I dont want you to go. Things go smoothly for weeks and then...I just know it is time to let him go. I decide to go tell the doctor, who I know is in the building. I will call the girls later.I let go of Bobs hand and stand, only I cant leave. I am blocked in a corner. A heavy-set patient sits in a wheelchair in front of me. His feet are up against the bars of Bobs bed. His arms hold onto the back of my chair. No matter what I do, I cant force him to move. There is a large oxygen tank on my left. There is no way to get out. I sit back in my chair. I am between laughing and crying. However, I get the message. Angels, Guides, Spirits, whatever you want to call them. I guess they all joined forces this time to stop me. Within days Bob shows improvements again. This time even some of his speech returns.It is now 5 months since the stroke. Bob still needs the gastric feeding tube, although they detach it daily from noon until 4 PM. I go with him to the dining room. I have lunch. He is allowed a small amount of mashed potatoes and gravy. They wont allow him to have anything more solid than that, as it still too hard to swallow. The female RNAs who assist with his monitored eating joke with him and he laughs. However, its the only time he shows much life lately. He no longer wants to watch T.V. or read. He is unable to maneuver the wheelchair with one hand.A month later: I dont know whats happening. Bob hardly says a word any more. I am admitted into the hospital myself for some tests. I dont see him for four days. Yet when I visit today he doesnt ask me a single question, nor does he talk at all. It seems each day his speech is getting worse. He knows what he wants to say, but he either cant find the words, or its hard for anyone to understand him, and then...Over the months a woman patient, Ginny Rae and I have become very friendly. She tells me, After you left yesterday, Bob perked up. He had a long conversation with the two male nurses. When they ask him where he wanted to go he answered clearly wherever my wife went. Today when I arrive his voice is good. There isnt much to talk about since we are together most the time. All in all I call it a good day.Just days later when I arrive Bob speaks in a very natural voice. He tells me all about his roommate. His speech is good all day. He has another swallow test and is able to answer all their questions. The test goes well. The results show he still cant eat solid foods. He can have liquids now that dont need to be thickened Great day.Today starts out O.K., but by now I should know better than to expect three good days in a row. A male nurse tries to wedge a pillow behind Bobs shoulder. He screams. When they try to get him to use the pedal machine to exercise his legs, he has pains in his ankles, later pains in his knees and then pain his back. He is moaning, loud, painful moans. Nothing I do helps. I start to weep. No Kleenex handy, so I use a lot of rough paper towel from the bathroom. Im unable to turn off the waterworks.I call Pam to see if she can visit him so he wont be alone. She cant get down until evening. She tells me to ask the nurses to keep him occupied until then. She orders me to do something fun. She is right. I need a day off; I am not much help to him blubbering. Since the second swallow test there are no more good days. The nurses take Bob to the dining room two or three times a day. Im there at lunchtime. He only eats a couple of spoonfuls of food. But I am glad he gets out of his room and is with other people part of the day. When I arrive today I hear his moans from way down the hall, one moan with each breath.I know we are not being punished but it sure feels like it. I know from problems in our past that God and his angels are always there, but Im running out of Kleenex. What is Bob thinking? What is he feeling? He is never one to express his feelings much. Now its hard for him to speak at all.A woman I know had a similar stroke when she was younger. She tells me it was painful for her to see the hurt in her familys eyes. So I try my best not to let my sadness show. Actually, when Im around him Im feeling better anyway.I hear that people have a spurt of good health shortly before the end. I recall the last time I visited my father in the hospital: It is evening time. He is all smiles and jovial. I think to myself hes the handsomest man Id ever saw. The next day when I call to speak with him I am told he is in an oxygen tent. He died soon after.I think the day of the third swallow test is Bobs spurt. It is the best day since the stroke. Since acing the swallow test he isnt interested in eating. If given food, he pushes the dishes away. I tell him we had been hoping and praying for six months that he would be able to swallow real food, so he would be safe if there are complications with the gastric feeding tube. He says he wasnt aware of that. For days Bob continues making sounds with every breath; sometimes like moans and sometimes more like yelling. The doctors and nurses try everything to help. They offer pain medicine, but he says he isnt in pain. I am praying for solace to handle it better. When I beg him to please stop he says, I cant help it. Finally they try another medication. It is for agitation. The new medicine takes hold. The moaning stops and he is speaking more. Days later the heat wave breaks. We sit outside in the olive garden all afternoon. We hold hands and enjoy the breeze. As I wheel him back into the building he says clearly, This was a wonderful day, and I feel the same way. Today when I arrive he tries to say something. He cant get it out. He tries a few more times and nothing comes out but a noise; he laughs. By the end of the day it isnt so funny. He is very agitated. He keeps pulling on his gastric tube. Ginny Rae and another patient named Ron try to calm him down. Ron pats his hand to soothe him.Today when Bob see Ron he blurts Ron! Not a word after that. Bob is agitated again, all day. Ginny Rae ducks into Bobs. Hows it going? she asks.Holding back tears I walk out of the room. She follows. We are talking in the hallway when a nurse informs me. Your husband is crying. I return to Bobs room. 63years of marriage, two of our daughters died at a young age. I am sure he cried by himself, but I never saw tears rolling out of his big blue eyes until now. I take a short walk outside. When I return Bob is covered with liquid. It is spilling all over from the PEG tube. The nurses and nurses aides all try to help. The charge nurse says, We need to replace the device. Its a very simple operation. It wont take very long. I blurt, No! Dont put it back. From that point on, Bob is officially on Hospice. They give him medication. Most of the time he sleeps peacefully; I hold his hand. I tell him I love him.09/08/2009: Pam comes and spends some time alone with her father. She leaves around 5 PM. He starts to run a fever shortly after. A nurse who knows I dont drive after dark offers to drive me home when her shift ends at 11. A friend can drive me back the next day. But I decide to stay all night.At 3:30AM I call Audrey. It is 6:30 her time. I put the cell phone to Bobs ear. She talks to her dad. Then I go back out to the couch in the lounge area. At 5:30AM a male nurse comes in Mrs. Cheek, he says, your husband is gone. I say goodbye and kiss him. I tell him our daughters Barbara and Carole will be there to meet him.There are no tears, no Kleenex. I thank God for the extra seven months.God how I love you Sweetheart.Thank you Lord for the borrowed time.Thank you for the wonderful day.You sign an advance directive and so has your loved one. Now youre faced with the final decision. What do you do? No matter what you write ahead of time if its not the right time, something or someone will stop you. Whatever you decide will be right.

When the Time Comes (Part II)By Pam e RossMy dad taught my mom to walk. At least that is how I always heard the story. And they have a black and white photo to prove it: A six-year old boy standing behind a baby girl donning a bonnet. He holds onto her hands as she struggles to take a step.Tuesday: Mom phones to say Dad is so sick she is taking him to the emergency room. The E.R. doctors tell her they think it could be pneumonia and they admit him. Pneumonia can be dangerous for anyone but with Dads advanced age I am very concerned. Should I come down? No, wait until tomorrow, she says.Wednesday: Good news. Mom says Dad is doing much better and even walked down the hall. Should I come now? I ask again. No, let him rest.Thursday: Although she still sounds optimistic about my dad, it concerns me when she says that she is unable to wake him. Maybe I should get there? I am sure the medication they have him on is making him sleep. Wait until he is sleeping less.Friday I hear, Let him rest. Wait another day before you come. On Saturday I meet mom at the hospital. Dad is sleeping. She tries to wake him but to avail. I try to wake him. He is very hard of hearing and does not have on his hearing aids, yet despite yelling in his ear and trying to jar him, he doesnt respond. I go to the nurses station and bring back a nurse. She yells, Mr. Cheek, Mr. Cheek. Then she also tries to nudge him. Although he doesnt respond she claims hes fine and that she just fed him breakfast that morning. What did he eat? I ask. Applesauce. How could he eat if he was like this?The nurse checks his mouth. It is full of applesauce that he never swallowed. Mom asks her to call the doctor but she says we must wait for him to do his rounds. I speed dial my nurse friend who I have known since childhood and who knows my dad. I ask her, Doesnt this sound like hes in a coma? She agrees that something is terribly wrong. She recommends that either my mother or I stay in the room because sometimes doctors on their rounds pop in and out quickly.Hours later the doctor arrives. We tell him about Bobs non-responsiveness. This time the doctor yells in his ear, Mr. Cheek! Mr. Cheek! Then he nudges him as we all had done earlier. And although the doctor also does not get a response he says that this is because my dad is old and is recovering from pneumonia. Is this recovery or is he comatose? I blurt. I am not really sure of the difference between someone being in a coma or being comatose, but because my mother is in the room I think comatose sound less threatening. My father has ankylosing spondylitis. Over the years his back has become more and more hunched over. People stare at him when he walks down the street. Yet despite this, even in his late seventies and early eighties he continues doing physical work as a tractor and farm equipment mechanic. The only heat in my parents home is a wood-burning stove. The landlord provides chopped wood, yet most of the wood needs to be axed down into smaller pieces to fit into the stove. Dad chops and lugs wood into the house daily all winter long. Whenever I visit I am tempted to take over this task, perhaps get them set for a week or two until my next visit. But realizing it is his only physical activity since his complete retirement a few years back I think of the rule: If you dont use it, you lose it. I bring in the wood only when he is not feeling well. Perhaps due to my abrupt response the doctor decides to run some tests. They place Dad on a gurney on his back. Due to his hunch, his head bobs as they wheel him down the hall. It is hard to see him like this. Upon Moms and my return on Sunday the hospital hands us pamphlets on how to recognize the symptoms of a stroke. A stroke, so that is what happened! I feel like throwing the pamphlets back at the nurses and doctors and telling them perhaps they should read them.I am back at school on Monday when Mom calls balling, The doctor says there is nothing else he can do for Dad. They want to put him into a nursing home. I do not find out until much later that she didnt understand that he had a stroke, and rightfully so as the stroke pamphlet given were our only indication.We learn the stroke has paralyzed one side of his body. He is unable to swallow and is receiving nutrition from a tube through the nose. But what if his body doesnt recover at all? His advance directive states he does not want to live by artificial means. And with his good hand, he keeps pulling it out. Is this just a reflex because it is uncomfortable, or is he trying to remove it because he does not want it?When I arrive on Monday evening Dads eyes are open for the first time. He seems to recognize me but is unable to speak.Tuesday Mom calls to say hes doing a bit better. I arrive to the hospital room late. I have a bottle of water in my hand. Dad grabs for it and croaks water. His first word! We are delighted to hear him make a sound, yet the nurse tells me I cannot give him any water. They say he cannot have anything to eat or drink as he could easily choke to death. Cant you do anything? Hes parched, I plead, and feel so bad that I have to deny his only request in over a week.The nurse uses moist swabs on and around his mouth. He thrashes for it. I think his requesting water and grabbing for the swabs are good signs. I ask the nurse to give him the swabs and allow him to moisten his own mouth. She reluctantly allows this. Yet once the swabs are in his hand, he doesnt seem to know what to do with them. Eventually they make it close to his mouth and lips.Hearing about the stroke my sister Audrey from the east coast arrives. Audrey and Mom are there before me on Wednesday. Again they have a hard time to wake him up. He looks dazed and confused, not nearly as good as the day before.Dad squeezes my hand, my sisters hand, and my moms hand when we hold his. But I notice he also grabs for and squeezes the nurses hand the same way. Does he even know the difference? Audrey and my mom believe, or want to believe he does while inside I am mourning the loss of my father. That night when I go home, my boyfriend finds me in a terrible state. What can I do to help? He asks. It is after nine in the evening, but I say, I want to see him while no one is around. Maybe I can get through to find out what he wants. Lets go, he says. We make the hour plus drive. When we arrive I go into his room alone. I am surprised and quickly disappointed to see my sister and mother there. I know my mom does not drive at night. It doesnt occur to me that my sister could take her. But at the same time, when I walk in they are both elated. Remember yesterday when you gave dad pen and paper to try and get him to write? Well, a couple of hours ago he wrote the words bath and room.Now I am smiling with them. He has made a normal request for someone who has been strapped to a bed day and night. I find out Mom has also been thinking of telling them to remove his nutrition, but now we know he is cognitive. Once again we have hope that he can improve. Yet he continues to pull out the nasal tube. Eventually the nurses tie down his good hand to keep him from doing this. With most of the rest of his body not functioning, this seems like torture. I am more confused than ever after receiving such conflicting opinions at the hospital meeting. I feel the caseworker actually works for the insurance company and just wants to do what will wind up costing the least. Alas, my mother tells me that my father will be going into hospice. Days earlier, before he showed signs of communicating and letting us know he really is in there somewhere, I might have agreed. Now I am not so sure.My dad is sent to the nursing home and miraculously shows signs of improvement. My mom explains to him that he now has a PEG tube, which he cannot live without. He is able to indicate to her that he wants it. This is such a relief. It is no longer a decision that we need to make for him, and one that goes against his advance directive as well.While growing up, my dad works long days. He doesnt communicate or relate well to his all female children. He never discusses with us his service throughout WWII or his work as a mechanic or any of his other mostly male interests. I move out young. We are practical strangers. We live thousands of miles apart for over twenty years. It is not until his old age, when I live closer that I get to know him a little. I come to see him at the nursing home. They prop him up, as he is unable to maneuver himself much with the right side of his body paralyzed. Luckily he is left-handed. We try to communicate with notes, although his writing is hard to decipher. It becomes a guessing game of charades and sometimes he is able to laugh. I ask him lots of questions. Sometimes I also answer for him so he can just scribble a Y or N. He is in a big room with three other men. The smells of food fill the air as lunch is delivered to the others. My dad wants food but knows he cant have any. I can tell he looks at some of these other men, who make noises and dont seem coherent, like they are worse off than him. Yet these same men look at my dad with his hunched back, who cannot eat or speak, and I believe they feel pity. Another day when I arrive, at first my dad seems happy to see me. He holds my hand. We play our game of charades. I can tell something is wrong. I ask if everything is okay and he scribbles Y. I ask if I can get him something and he writes N. Then I finally say are you sad and he nods. I can tell he is mourning his losses; the loss use of his arm, his lost speech, the loss of even being able to turn himself over in the bed. I fill the blanks in for him and we share some real moments.On some visits I try to get him to work on his speech. I feel terrible that he has to wear an adult diaper because he cannot communicate to one of the many nurses, assistant nurses, and orderlies that he needs to use the bathroom. We spend two days on the two-syllable word toilet. The toi comes out okay but the let is unrecognizable.After weeks of learning or relearning to pronounce the word, it is again a shame as it takes two or three people to assist him to the toilet. Winding up that many available orderlies and assistants often takes over an hour or two. Even then it is not a great situation. They have to maneuver him into a wheelchair. Wheel him to the bathroom and maneuver him onto the toilet. Two people must stand by the entire time and one must hold him up to prevent him from falling sideways. After a while even he learns, that they often dont get there on time, and there is not much more dignity in this then there is in having to have your diaper changed.Now that once again we officially decide that dad will not be going into Hospice, he is sent to another nursing home that my mother and I find. We feel good about the place and atmosphere. It is also within the range that my mom feels comfortable driving to daily from her home. At one point my mother changes her mind. It is too hard for her to see him like this. She tells me she wants to put him in hospice. Each time we face this decision we are in total agreement. This time I dont agree. I feel he knows his plight and he wants to keep going. But this is her husband. The man she has been married to for 63 years. How hard it must be see the 6 3 strapping young man she remembers in this condition. I keep my silence. By the next day, completely on her own she changes her mind back. Probably due to stress my usually always-healthy mother has a few health problems of her own. She has to go into the hospital. I visit her there and then I spend extra time with my father, who is used to his long daily visits from her. One day, due to school and work I cannot make it down until evening. I walk into his room and say loudly, How are you doing today? I almost have a stroke myself when he answers, Not too bad but I have a little bit of a headache today. 16 syllables and clear as can be!!! Then my dad proceeds to tell me all about the nursing home: What goes on at night. How he doesnt like one of the male orderlies because he is very rough when he maneuvers my dad in or out of the wheelchair or the bed. He asks where my mother is and I tell him she needs a little break. He nods in agreement. When I get ready to leave he asks if my mother will come tomorrow. I tell him I think she needs more of a break and he says, Yes, she deserves a break. His speech seems to come and go, yet between writing, and charades, and some hard to decipher speech we are able to communicate. I buy him an Easter card and flower. I also buy an extra Easter card and flower and tell him to give it to my mother when she comes the next day. We practice him saying, Happy Easter. We spend an hour on trying to get him to say it clearly so my mother will understand him. Then when I get ready to leave I give him one more shot, What are you going to say when mom arrives tomorrow. He answers Hap-py Tan-giv-ing.Great! I say, That was really clear. But wrong holiday! He realizes it too and we both laugh. I warn my mother that while she was in the hospital, dads speech has improved. The next day my mom is elated when she walks in and hears my Dad say Happy Easter.Another day my dad is having trouble with his speech. He keeps repeating two undecipherable words. After much ado I get that he is saying check and book. Why do you want your checkbook? I ask. Then after another long while, I understand he wants his checkbook to pay for his room. I assure him between his insurance and Medicaid, the room is covered and he looks relieved. When his speech is good enough I see what his main concerns are: Does my mother have enough gas in the car. She must get going because it gets dark early this time of year. You probably have something better to do. And, I need to pay my bill for this room. Old school is the conclusion I come up with to describe him. And I am happy to know I come from someone like this.Other days things are not so good at all. I must wait as the nurses give him an enema or change his diaper. I am just outside his room and I watch from the distance as the male assistants get him into his night clothing and into his bed for the night. These tasks are not done easily and my father often moans. It takes 2 or 3 of them to maneuver him and turn him over. I try to put my self in his place and I think today might be a good day to die.For the last couple of months I visit less often as it is harder than ever to communicate. I find it hard to watch. I also know that my father understands his plight. I know it is his choice to keep going. Yet, like us, he has hopes of improvement.My mother calls to tell me about the dislodged feeding tube. I half wonder if my dad pulled it out himself. This time I fully agree with her decision not to replace it and put him into Hospice. He gets to stay at the same nursing home. He sleeps most of the time probably due to the medications. I come down to visit and happen to catch him awake. There is no more communicating. But my dad reaches out. My long hair is clipped up and I take it down. He tugs on it like he always has since I was a teenager. In some way I feel he knows its me.Two days later he is gone. I cry. I mourn. And I am grateful for the extra time: for the opportunity to get to know him better and learn more about his character. His family is not the only ones grateful for his extra time, some of his caregivers cry as well.