Poems and Prayers and Promises

In 1969 a book written by Dr. Elisabeth Kubler-Ross was published called "On Death and Dying" in which she introduced her theories on grief. She states that people who learn they are dying, or who have suffered great personal loss or tragedy, go through five stages of grief: denial, anger, bargaining, depression and finally, acceptance.

I do not want to write extensively on her model so I am including a link to a Wikipedia article on the subject for those who wish to know more. I certainly do not want to give incorrect information.

Kübler-Ross model - Wikipedia, the free encyclopedia

I learned about these stages of grief in nursing school and I saw examples of them often in my work. Kubler-Ross says that not everyone goes through all of the stages but they do go through at least two of them. They may not always be experienced in the order given either and some people go back and forth between the stages.

In a previous posting I mentioned that Papa and I have not really discussed his condition or his wishes in depth. Well... until thinking about this today, I believed I had not seen those stages of grief either. Now, reflecting on this, I believe I have seen at least two in him: denial and depression, and some in me too. I feel he is in denial because he doesn't HEAR what the doctors say, and also what they do not say. It's as if he is saying... they have given me this diagnosis but I know they don't really mean ME! It's not really as serious as they say it is.

As for anger... he has not really shown that. Maybe inside himself he does feel angry but there has been no outward sign... no rending of clothing, no screaming or throwing objects or wrecking furniture or punching holes in walls. This to me is unusual because I have always considered Papa to be an angry man. All of our lives together I have seen him be quick to anger and usually for no good or apparent reason and often out of proportion to whatever offense may have or have not happened. Perhaps this in it's self is a sign of grief because it is unusual behavior.

Bargaining is the same, I have not seen it but I do think this is something that people internalize. I'm sure he has done his bargaining... I can not imagine him not praying to God... please let me live long enough to see Lia and Mae and Noelle get married, I promise I will do better, go to church, treat my wife better, love my daughter unconditionally like You love me, give to charity, notdoallthebadthingIknowIshouldn'tdo... just give me five more years, three more, one more, please God.

Depression is a given with Papa. Just like anger, I believe he has lived with depression on and off for many years, sometimes worse than other times. I have even suggested several times that he ask our doctor about medication for depression but he never has. I think he doesn't take that suggestion seriously. I ask myself, how could he NOT be depressed, knowing that he may die soon, may die painfully? It would depress the hell outta me, I can tell you that. His days now pass with him sitting on the couch, in the favored spot where he can best see the TV. He has control of the remote most of the time but he does share. Daughter complains seldom when her father wants to watch MMA or yet another karate type movie. Mae-Mae brings her books and toys to her "Ming-o-ma" and he helps Eli get over his qualms about eating by praying for him to ease his fears. Right now he is not really down-and-out sick. He is tired most of the time and he has nausea now and then but he is not having the vomiting and/or diarrhea that so many chemo patients do. But that is his activity, sitting on the couch watching TV. We go for short rides around the countryside once or twice a week and we go to chemo. Other than that he is on the couch or in bed.

Yesterday he asked me to make him a sandwich. For many weeks now I have been trying to get him to do more for himself and finally I had just had enough. I yelled at him... you are not that sick Mike. You are quite capable of making your own damn sandwich. My work here has increased ten-fold since you have been home all the time and since the kids have moved in. It's a lot more work for me and for Melanie and you are perfectly able to do things for yourself.

I tried not to get angry with him but I was very angry, and out of proportion to the offense too. One thing about those stages of grief... they happen to family members too and I am also going through them. You know what? I feel like a real bitch right now, complaining about this. For the last several postings I have been getting responses from readers about what a good wife I am, how loving I am, how lucky Papa is and I feel guilty. I do not feel good or loving. I am angry on so many levels and for so many reasons. I am not ready to be his care-giver. I do not want to have to take care of him like I took care of his brother. I resent having to give up all my free time and the loss of my privacy. I was used to being alone and I rather liked it. My kids visited and then they went home, my husband was on the road and while I saw him most every day and he was home every weekend and several days during the week, still I had time to myself... time to read or sew or just do what ever I wanted. I feel I have earned these rights and now they are gone. This kind of thing was supposed to be years away yet, not now. I feel betrayed. I almost feel like he (Papa) did this to me... how incredibly wrong is that anyway? Remember what I said before? Humans plan and God laughs.

God, how horrible a person does that make me?? I am not sick... well, who knows? I could be...but I am not facing known death, albeit death that could yet be years away. I have not had my belly cut open and a large part of my insides removed, left with an enormous scar and a new abdominal topography. I am not the one that has had to endure the rigors of radiation and chemotherapy. I think I am a very selfish person. I need to remember that I am in my marriage for life, for better or worse, in sickness and health... all that stuff. We have had a lot of ups and downs, some very serious, and we have always managed to get through it. We will get through all this too. I will get through this.

So, grief... denial, anger, bargaining, depression and acceptance. I think we actually arrived at acceptance before we hit those other stages. After all, there is nothing we can do about the fate that has been handed us. We just have to learn a way to deal with it.

Papa and I have always loved the singer John Denver. I remember so clearly one vacation we took when we had our motor home. We went to Virginia and West Virginia and I remember driving through the Appalachian's listening to the 8-track ( see how long ago that was? lol) playing John Denver. I have been thinking about him for some reason, while writing today, and I remembered a song he wrote that I have always felt was as much about contemplating death as it is about contemplating life. I hope you will take a minute and read it.

Lyrics to Poems, Prayers And Promises by John Denver

I've been lately thinking about my life's time
all the things I've done and how it's been,
and I can't help believin' in my own mind
I know I'm gonna hate to see it end.
I've seen a lot of sunshine
slept out in the rain spent a night or two all on my own
I've known my lady's pleasures
had myself some friends
spent a time or two in my own home.

Days they pass so quickly now, the nights are seldom long
time around me whispers when it's cold.
The changes somehow frightens me, still I have to smile
it turns me on to think of growing old.
It's tho' my life's been good to me there's still so much to do
so many things my mind has never known
I'd like to raise a fam'ly
I'd like to sail away
dance across the mountains on the moon.

Ref.) I have to say it now it's been good life all in all,
it's really fine to have a chance to hang around.
and lie there by the fire and watch the evening tire,
while all my friends and my old lady sit and pass a pipe around
and talk of poems and prayers and promises and things that we believe in, how sweet it is to love someone, how right it is to care,
how long it's been since yesterday what about tomorrow and what about our dreams and all the memories we share
[ Poems, Prayers And Promises Lyrics on http://www.lyricsmania.com/ ]

Prognosis?

They have never given Papa a solid prognosis. When he was first diagnosed the doctor painted a pretty grim future, at least I felt it was. Papa either did not really hear what the doctor was saying or he chose to ignore it. I think the surgeon was somewhat flustered. How does anyone get used to telling people they are probably going to die and suffer while doing it? I know that I felt a lot of empathy from him and he tried to be as straight forward as he could be. I understood him but Papa did not.

Immediately after the surgery the doctor told me he thought the cancer was already stage III. When our family doctor and I discussed this, she said if it was her, she would go home and spend as much time with her family as she could... she would not prolong things with radiation and/or chemo. Our oldest son, the RN, felt the same way, as did I.

I believe in life. I believe in God and I feel our lives are a gift from God. I also believe that death is a natural part of life. After all, no one gets out alive. Now, this does not mean that we should not fight for life when we have a chance. God has given us talented doctors, miraculous medicines, surgical techniques and tools that in other times would be considered witch craft, we should employ these gifts and thank Him for them. But as a nurse I have seen people waste what meager energy they have left, I have seen them waste resourses and exhaust their families, all in the hope of one more year, one more month, week, day... when there was never any real hope or because no one had taken the time to be honest with them.

When do we draw the line and say this is where I stop? This is where I make my stand? For me it means no ventilator if there is no hope of recovery, no CPR in an unwitnessed cardiac event, and if I am considered vegetative, no chemo, no radiation, no tube feedings, no dialysis, no antibiotics... just please keep me pain free and for God's sake, give me what meds it takes to be pain free and forget worrying about addiction to pain killers. People need to take their collective heads out of the sand and give this thought before it becomes a necessity and please write it down, make it known, review it once in a while too.

When I ask Papa what he wants, what his advance directives are, he always says "I want the same as you do," but he never specifically mentions any directions. We never really talk about him possibly being terminal either, he skates around the issue like he is on thin ice and I guess he actually may be. After the specimens came back from the lab Papa's cancer was declared to be in stage II. In our minds this announcement gave us the "go-ahead" for his radiation and chemo. The doctor said that given the size of the tumor, that Papa has about a 20% chance of making it to the 5 year survival point. That means an 80% chance that he won't make it to 5 years. Those are not very good odds. But people have come out of the woodwork telling us about their neighbor or uncle or sister-in-law's mother's brother, who had pancreatic cancer in stage IV and is now 82 and rakes his own leaves and does his own shopping etc. So one day prior to the beginning of treatment I point blank asked the surgeon what he would do in this circumstance and he said he would go ahead with the radiation and chemo so that is what we have done.

Was he honest with us? Part of me says yes, he was honest, part says no, that he felt an obligation to tell Papa to fight as hard as he could so that horrid, painful surgery that he had inflicted on Papa would not be in vain.

Last week at chemo I met an elderly woman, 75 she is. She had cancer many years ago, it was thought gone but it came back. She is very frail and also very forgetful but she said to me... "I don't want this, I'm too old for all this, but what can I do? They say I have to." She indicated her son. This is the reason for making sure your wishes are known. If my children were to ever do that to me, I would come back and haunt them.