Reflections

Reflections
Thomas Allen

What follows are random thoughts about life with Deborah.

‒ I am glad that Deb and I did not court much. I was not very good at courting. Most of our interaction was through letters and telephone conversations. Before we married, I visited her in Connecticut for about five days, and she visited me in North Carolina for about five days. I did turn out to be an excellent husband for her. Likewise, she turned out to be an excellent, even ideal, wife for me. Courting and marriage are like campaigning and performing the duties of an elective office. They require two different sets of skills, attributes, and abilities. Because a person is good at one does not mean that he is good at the other.

‒ As paradoxical as it sounds, until Deb was gone, I never realized how much she guided me and told me what to do without ever saying a word. She seldom right out told me what to do or not do. Yet without speaking, even with body language, she was the guiding influence telling me what to do and not to do. Perhaps it was because she gave everything purpose and meaning. Perhaps it was because she came to surrender herself totally to me that I could not help but to follow her unspoken instructions.

‒ Deb was, so to speak, my security blanket. I did things, such as speaking against issues at public hearings, that I would not have done without her. Her presence gave me courage even if she were not with me. When the children were young, she did not accompany me because she remained home to watch them. After they became old enough to look after themselves, she went with me. Whether she accompanied me or remained home, she gave me courage, direction, and purpose. I knew that she was there behind me and for me.

‒ When Deb was ill, I commented that wished I could have borne her burden to spare her the suffering. Now I am having to bear a burden that she will never have to bear. I am having to bear her loss and the void that it has created. Deb, it hurts! I am not having to feel the physical pain that she endured. Nevertheless, I am having to endure an enormous amount of pain. By her dying first, at least I am sparing her this pain. However, I am convinced that she could have borne it better than I am. She was my superior at such things.

‒ One reason that I love Deb so much and so deeply is that she never rejected me. She always accepted me. She accepted me as I was, and I accepted her as she was.

‒ Deb was always easy going and rarely demanding. She did have to run off to visit her sister occasionally. Also, every year or two, she had to go to the beach with the children after they were older.

‒ This year, 2011, was the first year in the last 29 years that I was not with Deb on my birthday (she died a few hours before) or her birthday. It was the first year in 30 years that I did not eat Thanksgiving dinner with her or celebrate Christmas with her.

‒ Before Deb got sick, I usually had little patience or compassion for sick people — especially myself. After Deb became ill, I soon acquired a great deal of patience and compassion for her. I was honored with the privilege of serving her during her illness. Although I did not always succeed, I tried to serve her the best that I could. My biggest regret is failing to defend her against and protect her from hospice. That failure resulted in her premature death. Hospice took weeks and maybe months off her life. Now I have to live with that failure for the rest of my life.

‒ When she was in the hospital, Deb bragged to the nurses and aides about having such a good husband. (I enjoyed hearing her say that.) I was there because I had a better wife. While she was in the hospital, I spent nine to twelve hours a day with her. While she was in the hospice house, I was with her 60 out of every 72 hours. I was with her because of her.

‒ When I first met Deb, little did I realize that I had found paradise on earth — or at least as close as a man can come in this sinful world. Wives can either make a marriage heaven on earth or hell on earth. Deb made it heaven. Not that everything always ran smoothly with no disagreement, they certainly did not. However, over time discord faded and harmony grew. Being married to Deb was a blessing and much more than I deserved.

‒ Deb and I came about as close as sinners can come to following the directions of Ephesians 5:24-33. She yielded herself to me and made me her head. In return, I tried to love her as Christ loves the Church (although no human can so fully love) and gave her all that I could. We also strove to follow the instructions of 1 Corinthians 7:3-5 and tried not to withhold our bodies from each other.

‒ I do not recall if it were the first turkey that Deb cooked for Thanksgiving, but it was one of the first ones. We had forgotten to get a pan in which to cook the turkey when we bought the turkey. Back then most stores closed on Thanksgiving. So I could not go buy one. I ended up sawing off the upper part of a big enamel pot for her to use. Later we use the resulting pan as a dish to feed the dog.

‒ Although we had some arguments, I only remember one. Like most of our arguments, it dealt with money for the school. The school that our children went to usually waited until the day before money was needed for a field trip or whatever before asking for it. Waiting to the last minute to ask for money really irritated me, especially since they knew at the beginning of the school year that they would need the money. I like to budget for expenses and do not like surprises, especially when the people wanting the money knew far enough in advance that I could have budgeted for it if they had told me. Anyway, Deb took money that I had allocated for another purpose and gave it to the school. That set me off. I ranted for sometime. After I finished my rant, I felt bad. Although I did not admit it, she did the right thing under the circumstance. I resolved the problem by setting up a borrowing and repayment system. (Now that I look back, probably much of the argument was my frustration with the school.) I do not recall us ever arguing about money after that.

‒ One of the many things that I admired about Deb was that she trusted me in the position of being the head of our relationship and marriage. She forced me to take on that responsibility whether I wanted it or not. I must admit I was somewhat reluctant at first, but she knew what was best. For any relationship and marriage to be highly successful, the man must take the responsibility of being the head. That is a major reason that our marriage was so happy and successful.

‒ Deb saw something in me of great worth. She saw a goodness and greatness in me that no one else ever did or has since. Whatever it was, I did not know and still do not. Most likely, she would have difficulty explaining it. It was more something she sensed and felt than something she could articulate. Nevertheless, she saw it and brought it out. She made life worth living and got things out of me that I did not know were possible or even existed.

Copyright © 2011 by Thomas Coley Allen.

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An Unappreciated Woman

An Unappreciated Woman
Thomas Allen

[Editor’s note: This article was posted on Deborah’s birthday. If hospice had not killed her prematurely, most likely, she would have lived to celebrate her 58th birthday.]

Two weeks after Deborah died, the Franklin County Arts Council had its ribbon cutting opening of its remodeled arts building. Regrettably, Deb did not live to see this change. The remodeled building would have brought joy to her heart. It was what she had argued for for years.

Until about three years ago, the chief promoter of the Whistler’s Convention controlled the Franklin County Arts Council. He controlled it either directly or from behind the scene. Deb wanted to change the focus of the Franklin County Arts Council from the Whistler’s Convention to promoting Franklin County art and artists. Her arguments were ignored, and she finally gave up.

Her criticism the chief promoter of the Whistler’s Convention almost got her sued. He demanded an apology from her. So, I drafted a letter of apology for her to send to the newspaper. In the letter, she thanked him for proving her point by his action.

When the State threatened to withhold grant funds if the Franklin County Arts Council remained involved with the Whistler’s Convention, the two separated. Under new management, Deb started seeing the Franklin County Arts Council moving in the direction for which she had for years argued. It now focused on promoting Franklin County art and artists.

(Deb’s family has lent the Franklin County Arts Council a self portrait of Deborah. This portrait is hanging in the Franklin County Arts Council’s art building in memory of her.)

The Christian school at which Deb taught art as a volunteer for several years certainly did not appreciate her. The students appreciated her; they loved her and enjoyed her classes. However, some people at the school often seemed to consider her an unwanted intruder. At least they treated her as such. At best they considered her a nuisance. The administrator did little or nothing to resolve the conflict. When he did do something, he usually sided with the teachers against Deb. Eventually, they began attacking her daughter. These attacks were more than Deb could stand.

Before her experience with the school, she was active in the church that sponsored the school. Her experience at the school poisoned her enthusiasm for the church. (Many people at the school were also involved with the church.) After the school forced her daughter out, she endured the church another year for the sake of her eldest son, who still attended the school.

Except for a small church (a dozen attendees were a big crowd) that she attended for several years until it ceased operating, she lost all interest in going to church. With this exception, the few churches that she did attend reminded her of the school church. Such a reminder caused her to lose interest in them.

I came to appreciate her greatly. Deb was a great source of brilliant ideas although many people rejected her suggestions. I soon learned that when she suggested something: do it. She was usually right. Nearly every time a project stumped or frustrated me, her suggestion almost always solved the problem.

Deborah had a brilliance and wisdom about her that few recognized. Her premature death is an irreplaceable lost to me and the world. I hope someday people will recognize how great she really was. Maybe one day she will be fully appreciated.

Copyright © 2011 by Thomas Coley Allen. 

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Trust and Submission

Trust and Submission
Thomas Allen

Deborah did not trust a person until that person gave her reason to trust him. I do not know what I did or did not do to earn her trust. Whatever it was, she came to trust me so much and so completely that eventually she unhesitatingly and unquestionably submitted herself to me totally. Whatever it was, I am glad that I did it or did not do it. Her unhesitating, total submission to me caused my total devotion to her and my complete loyalty and faithfulness to her. Her submission drew us ever closer together. No longer will I enjoy the pleasure of her submission and all the goodness that it drew out of me toward her.

One of the things that made Deb and me so close was her total dependence on me for her financial needs. She trusted me so much that she submitted herself to me completely to take care of her financial needs. Such trust and submission devoted me completely to her. Only her unhesitating, unquestionable, unconditional, and unlimited love for me could have caused such total trust and submission. Such love for me resulted in my unhesitating, unquestionable, unconditional, and unlimited love for her. It caused me to be completely devoted to her. Although I will love her forever, I no longer have the privilege and honor to support her.

Deb also came to trust me enough to submit completely to me to take care of her emotional needs. I believe that I was ahead of her on this one. I had completely submitted to her to satisfy and protect my emotional needs before she reciprocated. Our total trust and complete submission to each other to satisfy and protect each other’s emotional needs drew us ever closer together. No longer can I submit myself to her to take care of my emotional needs. No longer will she submit to me to take care of her emotional needs.

Deb’s complete submission was a powerful glue that made our marriage so strong and beautiful. It drew me ever closer to her as it drew her ever closer to me. Our marriage was built upon the foundation of her trust in me that led to her total, unhesitating, and unquestionable submission to me. So strong and enjoyable was our bond for each other that neither of us ever did anything that we thought would jeopardize the trust that we had for each other.

Closely related to trust and submission was her complete and unconditional commitment to me. In return, I committed myself completely and unconditionally to her. Out of this commitment to each other came our unconditional love for each other. Our commitment and unconditional love for each other created a marriage that only death could dissolve — but it could not end the love.

Copyright © 2011 by Thomas Coley Allen.

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No longer

No Longer
Thomas Allen

Not in any particular order, the following is a list of some little things that I did for Deborah, that she did for me, and that we did with each other that made our lives together more enjoyable. This list also includes other thoughts.

‒ When Deb was in the hospital, I wonder how I would take care of her and get my pruning done. Taking care of her would have had priority over pruning. If it got done at all, the pruning would have gotten done whenever I could have gotten to it. (Until her last day in the hospice house, I always thought that Deb was going to come home. The last day I began to realize that hospice and the atheists were going to win.) I no longer have to neglect my pruning to take care of her.

‒ When Deb was in the hospital, I wondered how I would get her to the front door during the winter. After the first winter snow or heavy rain, the yard turns into a mushy sponge and can remain that way for more than a week. She was using the front door instead of the back door because she had fewer steps to walk up. (The last time that she was home, she could walk up and down the front steps by herself.) I will no longer have to be concerned about that problem.

‒ Nearly every Sunday morning since our blueberry bushes began producing prolifically (about 20 years ago), Deb would make blueberry pancakes. She started making blueberry pancakes to use up blueberries. No longer will I eat her blueberry pancakes.

‒ On weekends, days that I did not work, and every day after I retired, she would fix breakfast while I attended the animals. The only exception was when she was not at home. I would often find breakfast waiting for me or nearly ready when I returned. Never again will I eat a breakfast that she has fixed me.

‒ After we returned from our trip to the mountains in April, I began thanking about us taking a trip to the east in October — probably to Edenton. Never again will I have to think about taking a trip with her anywhere.

‒ Obviously, I expected her to come home because I continued to give her pocket money until the end. Never again will I have to give her any pocket money.

‒ I was going to buy Deb another curio for her bird collection. The two that she had had become crowded. For some years when I bought her a bird, I would tell the clerk that wanted a small bird because my wife’s collection had out grown her curios. Usually, I gave her a bird for our wedding anniversary, Valentine’s Day, her birthday, and Christmas. Now I no longer have the joy of buying her presents.

‒ I used to rejoice along with her when her ACEOs sold — especially when one got into a bidding war and sold for more than $2. She would rejoice along with me whenever someone ordered some of my books or booklets. Such rejoicing is forever gone and will no longer occur.

‒ We used to enjoy hugging each other. No longer shall we hug each other.

‒ Most nights Rug the cat would lie on Deb’s lap as she watched television. No longer does Rug have her lap on which to lie.

‒ Around the time that Deb became ill, she made a comment about dying. I told her that she would break my heart. What I did not realize was how severely she would break it. No longer can I live without a broken heart for her.

‒ Deb wanted to start painting large pictures again. I began cleaning up the trailer so that she would have room to work on her paintings. That is one project that I will no longer have to finish.

‒ Every time Deb received her annual statement from social security, she worried about not receiving any social security because she did not have enough quarters to qualify. Each time I would have to remind her that she could draw off mine. Now she no longer has to worry about that, and I no longer have to remind her that she did not have to worry.

‒ Deb liked a good deal of stroking and reassurance. I am not good at that. However, I did let her know that I wanted to show her off and that I wanted to be with her as much as possible. I was proud of being with her and being seen with her. After I retired (and on days off when I was working), I asked her to go with me everywhere that I went. The exception was the dump and barbershop; she did not care about going to these places. No longer am I able to go places with her and show her off.

‒ Whenever someone or something really irritated me or one of my projects frustrated me, I often yelled. If Deb were near me, as she often was, she would usually ask me why I was yelling at her and said that she had not done anything. I had to remind her that I was not yelling at her. She just happened to be around when I was yelling. No longer will I have to remind her.

‒ I do not recall Deb and me having any real arguments during the last 10 or 15 years. Over time we learned what was important and what was not. We learned that harmony was much better than discord. We also came to view issues from the other’s perspective. Deb learned quicker than I did. At first, whenever I disagreed with her, she would often resist. Later, she would usually let me vent without resistance. She had learned that most of the time she was going to get what she wanted. By not resisting, she got it quicker. I eventually learned that lesson too. Over time my arguments with her faded away. I came to realize that what made her happy, made me happy. Now all of this is a nonissue. No longer will I have the joy of giving into her. (She was never a demanding woman, so letting her have her way was a joy and not a hardship.)

‒ Deb and I never really tried to change each other. We accept each other the way we were. However, we gradually moved toward what we thought the other wanted. No longer will this movement continue.

‒ I always encouraged Deb in her art because I knew how important art was to her. I went to every show that she had after we married. When her art did not sell, I think that I was more disappointed than she was. Whenever I made a critical remark at one of her shows, at first she thought I was criticizing her work. I had to remind her that I was not criticizing her work. I was criticizing the viewers for not seeing the value of her work and buying. Eventually, she understood that I was not criticizing her. No longer will I go to a show with her or encourage her in her art.

‒ Deb liked to cook with onions and garlic. In September when she was home, I planted two beds (about 100 square feet) of garlic for her — one bed was a French garlic. She will no longer use the garlic or onions that I grow for her, and I will no longer need to grow garlic and onions for her.

‒ No longer will Deb and I go to the post office together. We went to the post office to mail her ACEOs and my books. No longer will we shop for groceries or Christmas gifts together. No longer will we go to the hardware store together to pickup a part to fix something around the house.

‒ After I retired, many mornings Deb would stand on one side of the stove cooking my eggs. I would stand on the other side cooking my grits. No longer will we stand together at the stove cooking my breakfast.

Copyright © 2011 by Thomas Coley Allen.

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A Remarkable Woman

A Remarkable Woman
Thomas Allen

Deborah was the most remarkable woman that I have ever known. She was the only woman whom I have loved who returned that love. Not only did she return my love, she returned it with interest. No matter how much I loved her, and I loved her intensely, she always loved me more.

I always tried to return her love for me with interest. She always tried to return my love for her with interest. We both strove to give more love to the other than we were receiving. Thus, our love for each other escalated. (Such love made the flaws that we used to see in each other fade into insignificant nothingness.)

Deb did more for me than anyone can imagine. I doubt that she ever realized how much she did do for me. Figuratively speaking, she found me in the gutter and carried me to the highest peak. She made me what I became. She did it without nagging or pushing. She did it with love: her love for me and my love for her. With love she molded me into someone far greater than I imaged that I could be.

I was nothing when Deb found me. Fortunately for me, she saw something in me that no one else ever did. With her loving care, she picked me up and carried me to heights that I did not know existed. All that is good that I became, I owe to her. Now that she is gone, I just hope that I do not regress to where she found me.

When we first married, I resented her not doing certain things. As I learned what was really important — her happiness and well-being — that resentment faded away. I adjusted to her, and she adjusted to me. We were always becoming closer to each other.

The longer I lived with Deb, the more important she became. During the last twenty years of our marriage, I seldom did anything important without considering how it would affect her. Her welfare was of upmost importance to me. If what I was considering did not benefit her, and especially if it might harm her, I did not do it.

Many things I should have done for her, but I fail to do them. I regret not doing all that I could have done for her.

The longer we were married, the more we became one in thought and action. Over time, Deb became more and more of me. Eventually, she became more of me than I was of myself. She became the most important and significant part of me.

She was an easy-going person who seldom complained. When she did complain, I knew that she had a severe problem that needed immediate attention. I regret not being able to solve all her problems. Some were beyond my control, such as those connected with the church school. However, others were not; these I failed too frequently to solve.

Deb needed a good deal of stroking and encouragement. Regrettably, I was never good at that.

However, I always tried to encourage her with her art. I knew how important art was to her. Every art show that she had after we married, I was there with her. She liked that. Moreover, I never complained about her buying art supplies.

At times, I had to persuade her to buy things for herself. She was a very frugal woman. I would have bought more for her if she had asked. She seemed always to place the welfare of her family above herself.

Most of the time she seemed to place me above herself. As a result, I tried to place her before myself. Perhaps that is a major reason that we were so happy together and enjoyed each other’s company so much. Both of us strove to place the other first. We did not always achieve that goal, but we worked at achieving it.

Before we married, Deb and I decided that she would stay at home and rear the children. Although we did without some things, that was one of the best decisions that we ever made. It made our family stronger and made us closer to the children. Because it forced us to be dependent on each other, we bonded much more. I became more responsible because I had to take care of her and the children. She graciously reciprocated by fulfilling my needs as only she could. We grew closer and closer to each other.

Since that Deb has left me, all that I can now do is write about the most remarkable woman that I have ever known. She is at least as remarkable as her Biblical namesake, Deborah. I love you Deb and always will. My love for you can never die.

(As I go through Deb’s papers, I realize that I did not appreciate her enough, that I did not support her enough, that I did not do enough for her, and that I did not give her enough. So far I have not found anything that she has written about me. However, I am finding the dreams and fantasies about which she wrote. Some of her dreams, she achieved, and some she did not. I wish that I had helped her achieve more of her dreams. She certainly helped me achieve many of mine — most of which would never have been achieved without her.)

Copyright © 2011 by Thomas Coley Allen.

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My Experience with a Hospice House the Last Week

My Experience with a Hospice House
Or Thirteen Days of Hell
The Last Week
Thomas Allen

Friday, October 28. My wife began the day with a shower around 5 a.m. She enjoys the showers, but they are extremely fatiguing. She seems more fatigued today than yesterday. She is extremely weak and slept most of the day. (I don’t know if her sleepiness is from fatigue or changes in her medication.) She tries to push the control buttons on the bed, but usually does not have the strength to do so. Overall, my wife seems to have regressed today. Although she is beginning to eat some, her consumption is less than half of what she was consuming last week before hospice got a hold of her. Hospice policy seems to be that food does a cancer patient no good — at least that is what the doctor said. Hospice has certainly brought her down.

My wife’s pain seems to be increasing, so they are now delivering her pain medication through an automatic drip. When the hospital put my wife on a pain medicine drip, it fed the drip through a saline solution, which kept the body hydrated. Here, hospice is determined not to provide the body any kind of hydratin unless the patient is conscious enough to drink. Its drip is just pain medication. Also, the amount of pain medication has increased from a few days ago.

One of the comments made around here when I expressed my concerned about dehydration was that a cancer patient can go for weeks without water. (When the doctor told me that a lack of food does not lead to starvation because of the process of the body dying from a lack of nutrients differs with cancer from that of typical starvation, she did not address the dehydration issue.) An internet search shows that 7 to 10 days is about the limit for a healthy person under ideal climatic conditions. According to one site, the record for going without water before death is 11 days.

Looks like they are moving her back to a drugged out zombie. It is nice when she is alert and can communicate her needs, eat, and drink.

I feel like I am in a tag team wrestling match. I cannot get back to my corner, and the other side keeps bringing in fresh wrestlers and often more than one at a time.

The social worker is certainly pushing to get my wife planted, or at least she comes across that way.

P.S. Until my first-hand experience at this hospice house, I had a high opinion of hospice and have even given money to hospice. However, my experience here has turn me 180 degrees. I do not believe that hospice deliberately tries to kill anyone, but its action or inaction certainly seems to shorten life. For example, it could keep the body hydrated at least until hydration becomes dangerous when medication keeps the patient a zombie so that he cannot drink.

Saturday, October 29. This place can be nosier at night than the hospital was during the day. Around 1 a.m. they changed my wife’s sheets. I guess if you are a drugged out zombie, it matters little when the sheets are changed. Around 2 a.m. and 5 a.m. I gave my wife a little water to drink. Also, around 5 a.m. My wife complained about her back; the nurse gave her a dose of pain killer. Hospice’s solution for everything is more pain killer. Could my wife’s back ache be caused by the pillow they put under her back? Or by lying on her back so much? Don’t know. (In the hospital when she got tired of lying on her back, she could turn herself on her side. She has not been able to that since hospice got her.) They have returned her to a state where it is hard for her to tell another what the problem is. At least hospice is again happy. It has her in a drugged stupor. My wife slept most of the day. I have been able to give her a few swallows of water now and then.

I know that she is thirsty, but she is not wake often enough to keep her thirst quenched. Two days ago, she could pick up a cup of water and drink using a straw. This morning she could no longer hold a cup or use a straw. (This afternoon for the short time that she was conscious, she could drink with a straw, but was too weak to hold a cup.) I have to hold the cup to her mouth and slowly pour the water into her mouth.

The two days that she was conscious much of the time, she drank a quart, and perhaps more, of liquids. The days that she is a zombie, she drinks perhaps 8 ounces, and I give her most of that.

If I were not here giving her something to drink whenever I can, she would be in worse shape than she is. Unfortunately, I have to give her water under less than ideal conditions. Most people around here seem to believe that they have quenched a thirst by swabbing out her mouth, which they do about twice a day. (People who come here and do not have family or friends around most of the time to assist them, I am convince will die a week or two sooner.)

My wife’s urine has become extremely dark.

If a person cannot drink, if IV hydration will not cause more harm to the body than good, and if the care givers withhold IV hydration, then to my feeble mind they have certainly contributed to the person’s death and may even have caused it.

I have seen only two aides take the time to feed my wife. I am typically here 60 hours out of every 72. She cannot eat when she is a zombie.

This afternoon, they bathed my wife in the bed and changed her gown. Bathing is usually a trying task for her. Surprisingly, she was alert after the bath and watched some TV for about 15 minutes before dozing off again. She woke up again around 5:30 p.m. and stayed awake for about an hour and watched a little TV.

One commentator noted, “Don’t be surprise when you ask a surgeon about a health problem, he recommends an operation. Surgery is all he knows.” Likewise, with hospice, all it knows is pain killers. All problems can be solved with pain killers. A surgeon says you need an operation: What is your problem? Surgery solves all problems. Hospice says you need more pain medication: What is your problem? Pain medication solves all problems.

I feel like I have hired someone to remodel the kitchen, and they have misaligned everything. The pipes leak, and all the appliances have shorted out.

After observing all these doctors over the past 4½ months, I conclude that a well-trained technician could do 90 percent of what they do. I have yet seen one think “outside the box.” They all stay “within the lines.” Whatever does not fit their preconceived cooky cutter mold, they force into the mold.

Sunday, October 30. My wife was awake and thirsty when I arrived. I gave her some water to drink. A few minutes later, I gave her some more. She wanted to hold the cup and put it to her mouth. She could hold the cup, but hospice has gotten her so weak that she could not get it to her mouth. Watching her try to put the cup to her mouth was heartbreaking. With a straw, she did manage to drink some. However, she is having difficulty drawing through a straw. I usually have to hold the cup to her mouth and slowly pour, but I have trouble judging whether I am going too slow or too fast. It was nice last week when she could do this for herself. She said that they pumped her full of drugs earlier today. Last night, they made her potty in a diaper. This morning she used a bedpan.

Unless hospice is trying to hasten the death of its patients, I don’t know why it allows them to get so dehydrated. If my wife and most, if not all, of the patients here were dogs, these folks would be cited for animal cruelty for providing inadequate water.

My wife has not eaten anything since Thursday. They have her in such a stupor that she cannot eat. Since she has been here, she has consumed less all totaled than she did in her last day in the hospital.

She has gotten so weak, she can hardly talk. I don’t know how much longer she can last. I hope these people are proud of themselves. They are killing her quicker than the disease. I don’t know how they can sleep. I suspect that if a good autopsy was performed on deceased patients, the findings would show that most patients died of causes other than the disease.

I wonder if it would do my wife any good to claim that she is a Catholic. The Catholic directive is that patients should be provided with adequate water and nutrition, even by artificial means if necessary, to ensure that they die from the disease and not from a lack of the necessity of life. “A person should die from one's illness and not because a basic necessity of life was denied them.”

Monday, October 31. When I awoke this morning, I found my wife just like hospice likes to keep its patients: in a drugged stupor. The nurses worked on my wife several times during the night. Once was to treat her hemorrhoids. I am surprise that they are not treating the hemorrhoids by just giving more pain medication. Pain medication seems to be hospice’s solution for everything. I did manage to give her a few swallows of liquid just after midnight. She thought it was Friday. She must be extremely thirsty by now; she has less than two cups of water per day for the past several days.

I found a wet towel on my wife’s forehead when I checked her this morning. She had developed a fever during the night.

Here is the Catholic position on providing food and water to hospice patients:
http://www.catholicsun.org/2009/sept3/local/directives-text.html
My comment is posted. Here is the comment:

The hospice house that my wife is in does not believe in providing any more food or water than what the patient can take orally. I expressed my concerns about my wife starving and becoming dehydrated. The doctor claims that nutrition does a cancer patient no good. She also claims that cancer patients do not starve because the mechanism by which the cancer deprives the body of nutrition differs from typical starvation. About dehydration, one of the administrative honchos told me that IVs were not used for hydration because in the last days additional fluids may do more harm than good.

I wonder if my wife would fair better if she reclaimed her Catholic roots. Would this place abide by this directive?

After I complained about my wife being thirsty all the time, the nurse gave her some water with a syringe. Later, I was able to give her about 2 cups of water. I keep telling these people that my wife is thirsty, but most act like they don’t believe me. Most give her a few swallows and believe that they have solved the problem.

When the doctors were talking about sending my wife somewhere for pain management, I naively thought that they meant having her pain minimized while maintaining her alertness, awareness, and as much mobility as possible so that she could go home. I never thought that it meant keeping her in the zombie state of a drugged stupor.

According to the doctor, my wife does not need any additional fluids beyond what she can orally consume. An IV would make things worse. She also noted that my wife’s skin is showing signs of not being able to repair its — a lack of protein. (No food, no protein for skin repair other than what the body can cannibalize from itself.) My wife’s dark urine is a sign of improper liver and kidney functioning. Judging by the doctor’s comments, my wife will not make it to her 58th birthday. If she does, she probably will not be in a conscious state. The doctor said that her fever this morning is a sign that the body is losing the ability to regulate its temperature. This doctor seems so focus on death, that everything is a sign of imminent demise.

The nurse fed her a little bit of ice cream, but she had some difficulty in swallowing. They were able to shift her in the bed without additional pain medication.

I asked DHHS a simple “yes” or “no” question: “Are hospice facilities required to keep the patients in their facilities adequately hydrated?” This is the answer that I got: “The expectation is to hydrate patients within reasonable care. Hydration should be based on medical decisions. Thank you for your inquiry.” This person has the makings of a good politician. He answers “yes” in the first sentence, and voids his yes answer in the second sentence. In other words, whatever the doctor declares adequate is adequate because the doctor will always claim that his decision was a medically based decision. The hospice doctor claims adequate hydration can be achieved orally and that hydration beyond oral consumption is not only medically unnecessary, but is dangerous. Not unexpectedly, DHHS sided with the doctor.

Tonight my wife wanted to turn over on her side. She tried to turn herself, but could not because of her weakness. Ten days ago when she came in here, she could turn herself to her side without aid.

Tonight, my wife asked the same question that I have been asking. How can she excrete anything if she has not eaten anything.

Tuesday, November 1. I was up several time after midnight and gave my wife water. She was moved several times to get her off her back. They finally got her on her stomach so that she could not roll back on her back. She has been complaining about her back hurting. We are trying to get her off her back for a while to see if that will cause the aching to cease instead of giving a dose of pain killer every time she complains about her back. Thirst and backache have been her biggest complain recently. My wife sleep most of the day, even more than yesterday.

Today, the social worker asked me if had started making funeral arrangements. I told her that I had requested some information. She seems eager to plant my wife although she probably views her actions as getting me prepared for the inevitable.

My wife has a slight fever.

My wife has been wearing a diaper for the last several days. She has found it highly irritating and has tried to push it off. If she had the strength, she probably would have gotten it off. They left the diaper off today after they bathed her. The nurse said her face look much more relaxed without the diaper. I believe she is more comfortable now.

My wife seems to have gotten to the point of giving up. She also seems to be losing her awareness.

Considering that I got about of cup of water into her and finally got the nurses to get her in a position to sleep relatively comfortable, I regret not spending tonight with her. Who will take care of her and give her water?

The social worker put a humidifier in my wife’s room. That should help her dryness. The room is dry, and I wake up extremely dry and thirsty. My wife sleeps with her mouth open, which drys her out more.

I have just about giving up on fighting the system, but not for my wife’s life. Everywhere I turn, I am blocked. I never thought that when we left the house to go to the doctor’s office about 6 weeks ago that my wife would never again see home — the place where she has lived since April 1982.

The doctor said that she was ordering some artificial salvia for my wife to keep her mouth from becoming so dry.

They are still working on shrinking her hemorrhoids. The nurse found that my wife’s catheter was obstructed, so she fixed it. My wife still has not gotten use to the catheter; she wants to get up and pee like a human.

Ten days ago before she entered hospice, she could pick up a cup and drink all the water she wanted. Now she is totally dependent on others to provide her water. For two days last week, she could pick up a cup and put it to her month. Moreover, her voice is now usually so week that understanding what she wants has become difficult.

Nearly every doctor that I have encountered during my wife’s ordeal are certainly believers in “better living through chemistry” as my wife said about her oncologist.

Seeing what a invalid my wife has become is heartbreaking. Actually, she became an invalid shortly after entering the hospice house on Friday, October 21, and has continued to deteriorate ever since except for some improvement the middle of last week.

Wednesday, November 2, 2011. When I arrived this morning, my wife was asleep or semi-asleep, it is hard to tell which at times, and the aides were in the process of washing her off. She is sleeping more and is seldom in a state of full conscious. Except a few brief moments, she slept all day — even in the afternoon when she is usually more awake.

My wife and I certainly were mislead on the hospice trip. We thought that she was going there to find the proper dosage of pain medication, and then she would go home in about a week. That was the goal that they were working on at the hospital, or at least that is what they lead us to believe. Why else would they have wanted to send my wife to a skill nursing home for more adjustments to the medication? The reason she ended in the hospice house instead of a nursing home was the insurance company. It rejected the nursing home, but accepted the hospice house. Apparently, it believed that hospice would kill her much quicker than the nursing home and thus reduce its expenses.

The doctor felt my wife’s feet and knees and found them warm, which is suppose to be a good sign.

My wife remains thirsty, but is beginning to have difficulty swallowing. I am beginning to fell like Elijah’s Baal priests.

Barring divine intervention, my wife will never see her new refrigerator. I will be surprised if she will see my next birthday much less hers. I plan to spend the night with her on my birthday; most likely, she will be unconscious the whole time.

While I was going through the interview stage at the hospice house, I commented on my wife being able to walk to the bathroom with a walker, about putting her in a wheel chair and letting her sit in the sunroom, drinking Ensure, etc. I keep getting looks of amazement and “you got to be kidding.” Now I know why I was getting those looks. Apparently, they knew that my wife would be turned into an invalid when they got their hands on her.

Thursday, November 3. According to the doctor and nurse, my wife has only a few days left at most and perhaps only a few hours.

When I woke up, my wife was as I left her when I went asleep: She was asleep. When I left about 8:00 p.m. Tuesday, she was asleep and, except for a few brief moments Wednesday morning and when the aides shifted her, she has been asleep ever since — or at best only semi-conscious. I don’t know if she will ever awaken again except for a moment here and there.

The nurse said that my wife’s knees were cool this morning and showed some change.

In this battle that I have been fighting with and for my wife, I feel like that British regiment whose commander disliked the amount of time his troops were taking to move through the trenches to the front line. So, he sent them over the top. By the time the regiment almost reached the British front line, 90 percent was gone.

My wife’s illness certainly has put things in perspective. Everything fades in importance compared to her. She gives value to everything. She is truly the good wife described in Proverbs. The writer of Proverbs must have had her in mind.

I believe that my wife would have been much better off if I had taken her home instead of letting hospice get its hands on her. If I had taken her home, most likely she would still be alert and able to feed herself, pick up a cup of water and put it to her mouth, go to the bathroom, etc. instead of being the zombie that she has become and unable to eat or drink, much less feed herself. If I knew what hospice was going to do to her, I would have taken her home. When she arrived at the hospice house, it was as though she stepped out of a window on the 50th floor and fell into the sub-basement. She certainly could not have faired any worse at home than she has here.

The nurse told me that my wife’s feet are starting to turn blue and are swelling. Her heart beat is rapid, and she has some congestion. According to the nurse, she may have only a few days left at best. The doctor concurs: At best my wife has only a few days; it could be only hours. She also has a fever. They are trying to keep her bowels moving.

Hospice is winning. Barring divine intervention, my wife does not have much time left.

My wife has been moaning a good deal this afternoon. The nurse has been giving her more dosages of pain medications.

This afternoon, the nurse examined her and found her feet and knees in worse condition than this morning.

I noticed that the company for which my wife’s oncologist works has a commercial that concatenates a collection of “c” words, such as “compassion,” “caring,” and “comradery.” It fails to contain “cure,” which is what its customers really want. Most would cheerfully forgo the other “c” words for the omitted “c” word.

I expect all the children to be here tomorrow. I hope she lasts that long. Time is short.

Tomorrow is my birthday. I am hoping for the best birthday ever, but am preparing for the worst birthday ever. The spark of hope and faith grows dim.

I left my wife in the afternoon (Thursday) to restock my supplies so that I could stay with her Thursday night through the weekend. Also, I talked with the funeral home about arrangements in case of the miracle that I am hoping for and expecting fails, and also to placate the gently nagging social worker. Barring a miracle, the current plan is for her to go from here to the crematory. Later we will have a service at the funeral home with her ashes in the urn.

My wife’s breathing is beginning to come somewhat choppy. Later it became faint. I continue to talk to her and hopefully give her encouragement.

I know that I am among the dullest of knives in the drawer, but I though something was strange when one of the first thing hospice did was to connect up my wife’s port and give her a shot. I had thought, and my wife also thought, that she had come here to continue the work of the doctors at the hospital. At the hospital, the doctors were trying to find the appropriate dosage of oral pain killers to keep her pain under control so that she could go home. We thought hospice would continue that work. When I returned Saturday and found my wife as zombie, I begin to realize that hospice’s objective was not to fine tune my wife’s pain medication and send her home. I soon realized that its objective was to send her to the morgue as quickly as possible. From what I have heard from other sources, two weeks seems to be about the time hospice takes to kill a patient. I am still convinced that hospice shorten my wife’s life by weeks if not months.

My wife has past over the great divide. She died sometime between 9:30 and 11:30. I am glad that I changed my plans and stayed with her tonight.

Hospice and the atheist won.

Concluding remarks. I finally did get to bring my wife home. Her ashes rest in an urn in our bedroom.

If at all possible, do not let anyone about whom you care enter a hospice house. It is like the roach motel: they check in, but they don’t check out.

Thanks to hospice, I will have to live the rest of my life with the guilt that I failed to fight hard enough to save my wife from hospice’s covert euthanasia. I must live with the guilt that I am responsible for my wife’s premature death. Thank you hospice for all you have done to my wife and me!

First week

Copyright © 2011 by Thomas Coley Allen. 

 More articles on Deb.

My Experience with a Hospice House the First Week

My Experience with a Hospice House Or Thirteen Days of Hell
The First Week
Thomas Allen

Introduction. My wife entered a hospice house about 4:00 p.m., Friday, October 21, 2011, for pain management. Every day or two, I sent an e-mail to family and friends reporting her condition and my observations and experiences and conclusions drawn on those observations and experiences. What follows are my observations, experiences, and conclusions contained in those e-mails. They are presented for each day.

Let me preface this article with the following background. First, for the most part the nurses and aides provide my wife good care.

Second, we were deceived. We thought that my wife was going to the hospice house to fine tune the work that the doctors had been doing at the hospital. At the hospital, the doctors were trying to find the right regime of oral pain medication to control my wife’s pain so that she could go home. We thought that work would continue at the hospice house. Were we surprised! Either my wife’s oncologist and colleagues changed their goal without informing my wife, or the hospice doctor ignored their goal.

Third, when my wife left the hospital, she could with the aid of a walker get herself out of bed, walk to the restroom, take care of her bodily needs, walk back to bed, and get into bed. Moving obstacles out of the way was the only real assistance that she needed. Also, with the aid of a walker, she could walk to a chair, set herself down, and get herself up. Moreover, she could converse, watch TV, change channels, read a newspaper, call a nurse if needed, bathe herself with a wash cloth, feed herself although she did need someone to open some of the containers, etc. Within hours after arriving at the hospice house, she could do none of these things. Hospice quickly turned her into a zombie. She remained an invalid for her brief 13-day stay. Except for about two days, she did not eat anything, and then she could not feed herself. She could seldom watch TV or converse, and most of that was during a two-day window. Hospice had made her a totally dependent invalid and killed her weeks sooner than she would have naturally died.

Four, until this experience with hospice, I had always believed that hospice’s objective was to ease the passage to death. I have learned that its objective is not to ease but to hasten death. It practices a covert form of euthanasia.

Five, if I had known before my wife entered the hospice house that hospice would covertly euthanize her, I would have taken her home instead of letting her enter the hospice house. By the time I figured out that she was being covertly euthanized, hospice had debilitated her too much for me to take her home. Hospice had trapped us.

Friday, October 21. My wife has moved to the hospice house. They give my wife zero chances. The cancer has reached the point where chemotherapy will do more harm than good.

[These paragraphs, except the third paragraph, describe my wife at the hospital just before she came to the hospice house.]

Tuesday she ate more than I have seen her eat in days. Wednesday she regressed back to normal. She was so drugged that she sleep much of the day. Thursday was a little better; she sat up some and was more active and awake than Wednesday. Friday was another drugged out sleepy day until about 2 p.m.

Before entering the hospice house my wife could with the aid of a walker get herself out of the bed, walk to the bathroom and take care of her bodily needs, walk back to the bed and get herself back into the bed — all with little or no help. She could feed herself, sit in a chair, watch TV and change channels, bathe herself with a wash cloth, and take care of many of her needs with minimal assistance.

The hospice doctor discussed the bad news with us (both of us knew things were bad; now we have a much better idea of how bad). My wife is weak; I don't know how much is caused by the drugs and how much is caused by not eating enough. Because she has difficulty eating (drinking Ensure), she consumes a little at a time. But the drug stupor that they have her in keeps her from eating. I guess keeping someone in a drugged slumber is what they call pain control.

Although a nutritionist talked with my wife at the hospital several times (expecting to see several hundred dollars on the bill for that consultation), she didn't do much good. They gave my wife some soups that were greasy or tasted like water in which some vegetables had been soaked. No extra vitamins or minerals that I saw other than potassium. The only real nutritional concern that I saw was maintaining the sodium-potassium ratio. With my wife consuming only about half of the RDV, she surely needed supplements. They should have been giving her 5 to 10 times or more RDV for her optimum needs. At least when she had a room in which the sun shined, she was getting her vitamin D. I guess these people buy into the official medical industry policy that vitamins and minerals are mostly irrelevant. The hospice doctor sure does; she claims that nutrition is irrelevant to someone with advance cancer and that healthy food has no beneficial effect (although people have used foods as the primary cure for cancer).

I am glad that she is out of the hospital (and more important, so is she; she is tired of being in the hospital). Most of what they have done, such as feeding her sugar, seems to have made her cancer worse. If they are going to give her sugar, which is hard to avoid as it is almost ubiquitous, they ought to be giving her something like BLA. At least they started giving her a probiotic after I mentioned doing that when they were giving her antibiotics. Hopefully, at the new place, things will improve, and we'll have more freedom and fewer interruptions.

I am beginning to feel like the fellow on the train who was not allowed to blow the whistle, drive the engine, tell the train when to start or stop or where to go, but if anything went wrong, he got the blame.

Friday, October. 21. So far, this place has under impressed me. It is as regimented and institutionalized as the hospital. They even have the bed rigged with an alarm so that you cannot escape. When I left my wife, she was in a drugged stupor. I don't know what kind of drugs they are giving her (the nurse did tell me, but I forgot; it starts with a "d"). Besides making her groggy and sleepy, it causes involuntary muscle movement and slurs her speech.

I have virtually no confidence in most doctors, but the one here hits new lows. She declares nutrition is of no value to people suffering from cancer. Worse, she gives the impression that her objective (job) is to get the patient to the morgue as quickly as possible — apparently by starvation or dehydration as they keep her so drugged she can hardly eat, which she was already having difficulty doing. As they keep her asleep much of the time, she is not awake enough to drink all the liquids that she needs. Did this doctor study under Dr. Death?

The doctor has discontinued her Lovenox shots for blood clots — I guess she plans on my wife dying before blood clots become an issue again. (Can you tell that this is one doctor whom I would avoid especially if I were at death’s door.) As long as no clots form and cause problems, my wife will certainly not miss these shots.

When they were discussing putting my wife in a nursing home, I did some research on nursing homes. When touring a nursing home, several sites recommended observing the patients to see if they were sedated. If many patients were sedated, that was a good indication of a nursing home to avoid. After the interview, the first thing they did was to sedate my wife, and they have kept her sedated.

Moreover, at the hospital, the doctors were working to get my wife off pain medication that were injected and totally on oral medication so that she could eventually go home. The first thing the doctor here did was to take my wife off oral medication and put her on shots. I guess the hospice doctor is not planning on my wife ever going home. She seems to want to send my wife straight to the morgue without passing home.

Saturday, October. 22. When I arrived my wife was in a drugged stupor. At least the aide offered to get her something to eat. She spent nearly all day sleeping — a hospice success story. So, she ate nothing and excepted for a few swallows drank nothing.

When my wife was in the hospital, she could at least walk to the bathroom with the aid of a walker. Now she cannot — they gave her a bedside commode to use. When she was in the hospital, she could hold her cups, etc. without difficulty. Here she has difficulty doing that, and she has been here less than a day. At the hospital she could walk around with a walker and sit in a chair for an hour or two. In less than 24 hours, they have her bed ridden; it takes two aides womanhandling her for her to get any where and all of this in less than 24 hours. Hospice is doing a great job! They will have her in the morgue in no time, which seems to be their primary objective.

They also are using a catheter. At the hospital, she had no problem urinating. Everything for the convenience of the staff I guess. She has not been here 24 hours, and she has deteriorated noticeably. I am beginning to have doubts about hospice.

Before she left the hospital, my wife was drinking 1½ to 2 Ensures and a cup of orange juice and eating a cup or two of yogurt, ice cream or pudding. Hospice has manage to stop her from almost drinking anything in less than 24 hours. If they cannot starve her to death, they will kill her with dehydration and of course blame it all on the cancer. (At the hospital, the staff showed much more concern about my wife eating at least until the hospital/insurance company decided to kick her out.)

They gave her a shower this morning. This is the first shower that she has had since August. After the shower they knocked her out, and she spent the rest of the day asleep.

When I arrived, the social worker gave me a booklet that contained signs of approaching the end. Many of them seem to be drugged related. How much is caused by the drugs and how much by the disease? The day before she left the hospital she showed none of the signs described in the booklet. After less than 24 hours, hospice has gotten her to the point of starting to show some of the signs. I suspect that they are blaming the disease for what the drugs are doing. Are they getting a kick back from the pharmaceutical companies? I am also beginning to suspect that the insurance company pays certain people bonuses under the table to get people to the morgue quickly. This booklet seems to be a cover for their actions.

There are just as many interruptions here as in the hospital. However, the patient is not as aware of them because she is so drugged out.

I was somewhat looking forward to coming to the hospice center if my wife could not come home. I thought it would be better for her. I naively thought that she would at least be as conscious as she was in the hospital — that she would be awake a good deal of the time and aware of what is going on around her. What stupid ignorant thoughts! Most of the time she is either asleep or semiconscious. Now I beginning to believe that she would be better off in a nursing home, even a low quality one. Is the reason that the insurance company rejected the nursing home option because it has a deal with hospice to get patients in the grave as quickly as possible via starvation and dehydration? (It they keep patients so doped up that they cannot eat or drink, they are not going to be around for long.)

My wife left the hospital alive. After 24 hours of hospice care, she is all but dead. They drugged her so much that she slept most of Saturday. They seem to want to hasten her death.

I had the misconception that hospice sought to improve the remaining days of a person’s life. In my distorted way of thinking that includes ensuring that the person is well feed or at least given as much nutritional nourishment as he can tolerate and ensure that he remains hydrated. It also includes remaining alert and aware of what is going on so that the person can spend as much time as possible with relatives and friends. The hospice way seems to be make the patient sleep as much as possible until he dies from starvation or dehydration.

Within 24 hours my opinion of hospice has gone from a highly positive one to a highly negative one. I hope that they can turn things around; I will be happily surprised if they do. These people seemed to be deep into euthanasia. Where is the quality of life when you go for days or weeks unaware of what is going on?

It is hard being in the room with her being unconscious most of the time. I cannot talk with her and cannot do things with or for her. This place restricts partner assistance much more than the hospital. They have her so drugged that two people are needed to do almost anything with her. I was hoping that she would be conscious so that I could converse with her some.

I am exhausted, beaten, defeated and dying along with her — if not physically (and that is probably occurring) at least emotionally, spiritually, and every other way — and am overwhelmed with a sense of loss, defeat, hopelessness, helplessness, uselessness, etc.

I had a lengthy chat with one of the social workers here about various things. She said that the goal is still to get my wife home, hopefully next week unless she takes a turn for the worse. If she goes home, hospice workers would visit the house several time a week to work with my wife.

Sunday, October 23. I woke up around 5 a.m. and found my wife still in a drugged stupor. She was semiconscious, so I gave her a swallow or two of liquid. Whenever I catch her is such a state, I try to give her some liquids to drink.

Since I spent the night with my wife, I slept a little better than I have been. More important, spending the night with her gives me more opportunities to give her water. I had brought about a half dozen bottles of Ensure and Boost foolishly thinking that they would want to try to get her to eat something.

They must have a policy of keeping patients unconscious as much as possible. The drug that they are giving my wife puts her to sleep for about 2 hours. About every 2 hours a nurse will check on her for pain. If my wife is showing too much awareness, she gets another shot to put her out. (My wife is on a schedule such that she gets a shot of pain medication every 4 hours.) Last night when the nurse check on her midway between her scheduled shots, my wife was semiconscious. She said nothing about pain, but the nurse “assumed” that she was in pain and gave her a shot, which put her out. (After my complaints, the doctor changed my wife’s drug regiment to give pain medicine only when she asks for it, so she is awake a little more though not really alert or active when she is awake.)

On Friday, about 3:15 p.m., I left my wife and the hospital and drove to the hospice facility. When I left my wife, she was mobile. Although weak, she could walk around, feed herself, go to the bathroom by herself, sit up, watch TV, etc. Around 4:00 p.m., my wife arrived at the hospice facility in the same condition as she was when she left the hospital. By 6:00 p.m., they injected her with something. Since then, she has been either asleep or semiconscious. She quickly lost her mobility and the ability to feed herself or go to the bathroom. She lost all these capabilities within a few hours of the injection. They are blaming all these losses on the disease. (Some are admitting that the drugs may causing at least some of the stupor.) I find it hard to believe that my wife’s disease would cause such total devastation in a few hours.

My question is: Is it hospice’s official policy or its unofficial policy to keep patients in a drugged stupor so that they cannot eat or drink and by that die from starvation or dehydration while hospice and the medical industry blames the death on the disease. That must be its policy, either officially or unofficially, because that is exactly what it is doing.

Around 7:20 a.m. she regained enough consciousness to drink. One of the aides gave her about a half cup of water. I had given her a few swallows earlier. At least she is finally getting a little liquid.

Just before she left the hospital, my wife could hold my hand with a good grip. Now I have to pick up her hand and all I get is a limp “grasp” with no closure. If I do not hold her hand, it just slides away.

My wife was admitted as a general inpatient for pain management. General inpatients are treated and then sent home. The objective is to get the inpatient out within a week.

After seeing what they do here, I don’t know how her pain could be managed at home. But I do want her home. I, and I believe that she agrees, would much rather her die at home where she has spent more than half her life in a house that she help to build than in some strange institution.

For the most part, the nurses and aides do seem to be caring people who try to make my wife comfortable. When she calls for a nurse, she usually gets a response here quicker than she got at the hospital.

Nausea continues to be a problem. I have seen her vomit more here in 2 days than I saw her do at the hospital in a week. She is getting weaker and weaker — hard to keep one’s strength when one is not eating or exercising. Bowl movements are becoming painful (not from the movement but from the aides struggling to get her on and off the pot and to clean her up afterward), but at least she is not currently constipated. Her bowls are loose. I am not sure what she is excreting because she has not consumed anything to excrete. She deteriorating quicker under hospice care than she was under hospital care.

She has been a little more conscious today than she was Saturday. She has expressed feeling more pain, which is expected because one does not express feeling pain when asleep. It seems as though they would have developed pain medication that could deaden the pain without deadening the patient. It would be nice if she were alert without pain.

As much as I would like to have her home, hospice has debilitated her so much that I am beginning to doubt that she could fare well and that one person could take care of her when things get as rough as they were this morning. She has been having a rough time this morning vomiting and with her bowl movement. She had two and at times three people working with her. This episode begin after they gave her a nausea pill, which she threw up, and a shot of pain medication.

When my wife was in the hospital, she watch a program on animal cruelty in Houston. Some of the people that were charged with animal cruelty were in the little league compared to hospice. Since she has been here, hospice has fed her nothing until late this afternoon when they finally fed her a cup of applesauce and has given her little to drink. Actually, they almost immediately put her in a condition where she could not eat and could only occasionally drink small amounts. If hospice fed and water an animal as little as it does its patients, it would be fined for animal cruelty. What it does to prevent patients from eating and drinking is like caging a dog without food or water. (Based on the comments made by the doctor that interviewed us when we came in, she seems to believe that food and water are irrelevant to extremely sick people.)

I talked with the nurse this afternoon and expressed my concern about my wife dying from starvation or dehydration long before she does from her cancer. She said that they would work with her pain medication to see if they can find a level that will keep the pain under control and at the same time allow my wife to be conscious enough to eat and drink.

The nurse reduced her medication some, so by late afternoon, my wife woke up enough to eat some applesauce. At least we are getting a minute amount of improvement.

They have given her enough laxative to get large messy bowel movements from her. They have her in diapers; even so, she usually messes up the sheets. When she has a bowel movement, the assistance of two people are needed to move her and clean her up. Bowel movements are rough on her. She is much weaker now than she was two days ago when she came in.

Not having much else to do Sunday afternoon other than listen to my wife snore, I posted negative comments about hospice in general and this hospice house in particular on several web sites and gave this hospice house a one star rating on sites that had a rating system. The message was as follows although for some sites I had to modify it slightly:

When my wife enter a hospice facility for pain management, she could converse, walk short distances with a walker, bathe herself with a wash cloth, fed herself, sit up, watch TV, etc. With a little help, she could take care of her basic needs. A few hours after entering a hospice facility, hospice managed to turn her into a bedridden zombie that can no longer do any of these things. Since she has been here, hospice has feed her nothing and has given her little to drink. Actually, they almost immediately put her in a condition where she could not eat and could only occasionally drink small amounts. Of coarse they blame this rapid, almost instantaneous, decline on her disease. I have become convinced that the policy of hospice is to kill its patient as quickly as possible by starvation or dehydration and blame the death on the disease. If hospice feed and water an animal as little as it does its patients, it would be fined for animal cruelty. Is hospice getting a payoff from the insurance companies to get the patient to the morgue as quickly as possible? Don’t let hospice get its hands on anyone you love — especially at one of its facilities.

Monday, October. 24. My wife was somewhat conscious when I arrived this morning about 9:30 a.m. I gave her a little to drink. She can hardly talk. I brought her i-pad and played her the music that she has on it through my radio so she can listen to it. Unfortunately, I forgot to bring her battery charger, and the battery gave out before I finished playing all her tunes.

I use to think that hospice sought to maintain the patient’s dignity and as much quality of life that the patient had as long as possible. Now I believe that hospice does not care much about the patient’s dignity or quality of life, but seeks to get the patient in the morgue as soon as possible. (Not unsurprisingly, the doctor and social worker strongly disagreed with my assessment.)

My wife is now using a bed pan. That is easier on her than using the bedside commode.

I talked with the chaplain and social worker today and expressed my concerns and disappointment in the hospice facility. I doubt they will do much. The social worker mentioned moving her somewhere else. I don’t know where else to go. She might could go back to the hospital. However, most likely, the hospital would soon declare that she was ready for discharge; then where would she go? She could go to a nursing home, but it probably would keep her drugged up like here and probably is not as good at pain control as this place. Hospice has her in such shape now, I cannot take her home. She is too weak for one person to manage. (Last Friday, I probably could have managed her alone as she was able with a little assistance take care of bodily needs herself.) Hospice recommends three full-time care givers at home, each working an 8-hour shift.

The chaplain asked how I was coping and what I was doing to help me through this ordeal. I told him that I was recording my observations, feelings, etc. and sending them out to relatives and friends. I find that it helps me with my frustrations and anguish.

I talked with attending facility physician. According to her, a person failing to eat anything in the late stages of cancer do not undergo starvation. The cancer just draws all the nutrition from the body. The body cannot not be supplied enough food or liquid to keep the body living. I must be a victim of jargon because to my ignorant mind, starvation is the body not getting enough food to survive. What the doctor described was the body not getting enough food to survive. Besides, not giving the patient food from which the cancer can steal nutrition makes it steal nutrition faster from the body.

The doctor tried, but failed to do so, convince me that the cancer has caused my wife to go from an alert person who could take care of her basic needs with a little help to a bed ridden zombie in a matter of hours. Nothing that they did caused this dramatic change. As I suspected and expected, the cancer would be the blame.

The doctor claims that my wife is in the state that she is because she has given up the will to live. In the doctor’s mind, the doctor is completely innocent of any of my wife’s problem.

This doctor seems unable to hit a happy mean or optimum amount of pain medication. She goes from too much, thus keeping my wife unconscious or semiconscious most of the time to too little (to spite me?).

This doctor acts like I am a medical expert. Unfortunately, there is much friction between her and me. She doesn't think much of me, and she senses that I do not think much of her, and I don’t. For my wife's sake, I have refrained from telling her how I really feel about her other than telling her I am dissatisfied with the treatment. (I am afraid if she really knew, she would take it out on my wife.) She keeps asking what I want to do. I keep telling that I want my wife to have maximum alertness and mobility with minimum pain. Although she is supposed to be the expert, she seems to expect me to tell her what to do.

She developed a low opinion of me when I said that my wife was being put out to pasture. She apparently took my comment to mean that my wife was coming here to be euthanized. I did not mean that although it does seem that they are in a hurry to get her to the morgue the way hospice so quickly debilitated her. I meant that she was being sent here to die, and hospice has not refuted that. I developed a low opinion of her when she said that nutrition had no value to cancer patients.

To use a computer analogy, I have a broken computer and take to the professional repairman. I may not know how to fix the broken computer, but I know when the repairman has not fixed it.

According to the nurse, the facility can prepare meals onsite. They have not brought my wife any prepared food, but then she could not eat it even if they did. However, an aide did feed her a cup of applesauce and a small carton of apple juice, which must have been better than that at the hospital, which tasted like it was watered down.

Now that my wife is approaching the end, the medical industry wants to shift all the decisions to me on the treatments to use. I guess that they want to free themselves from any blame and shift all the blame to me for whatever happens. (Of coarse, if by some miracle, things change for the better, they will take the credit.) This is the first time a doctor wanted my say in anything. I don’t even think that they really asked my wife what she wanted. If any discussion of options were presented, and I am not sure that it was, my impression is that it was the doctor’s chosen way or no way. It has been mostly the doctors telling my wife what they were going to do, and she went along for the ride.

They did not give my wife any nausea medicine today, and she did not vomit. She has not vomited since they stop giving her nausea pills. They are now giving her pain medication when she is in pain.

I spent Monday night with my wife.

P.S. 1. She seems to have done a little better today. Her most trying times today have been bowel movements — the moving around and cleaning up shakes her up a lot and often causes much pain. I had a discussion with the chaplain, social worker, and doctor about what has disturbed me so much here. Not unsurprisingly, the doctor is completely innocent. The problem lies with my wife and her disease; that is what caused her almost instantaneous deterioration from an alert, mobile person to a bed-ridden zombie, who can hardly talk.

P.S. 2. The doctor and social worker said if I were dissatisfied they could send my wife somewhere else. But where? To the hospital? It would soon discharge her again, and then where would she go? To a skilled nursing home? With the shape that hospice has gotten my wife, the nursing home would most likely keep her a drugged up bed-ridden zombie and the insurance would not cover it. I cannot take her home. Hospice has her in such shape that I could not manage her. I probably could have handled her if we had gone home Friday instead of coming here. If we had gone home, I am convince that today she would be doing as well as she was when she left the hospital. I don't know about the pain; it probably would have been no worse than at the hospital. Hospice has her so knocked out that she doesn't seem to feel much although she occasionally gets a sharp pain. I feel like I am caught between "the rock and the hard place": Damned if I do and damned if I don't.

P.S. 3 Here is a message that I sent to a radio program:

Please warn your audience about the dangers of going to a hospice facility. When my wife enter a hospice facility for pain management, she could converse, walk short distances with a walker, bathe herself with a wash cloth, feed herself, sit up, watch TV, etc. With a little help, she could take care of her basic needs. A few hours after entering a hospice facility, hospice managed to turn her into a bedridden zombie that can no longer do any of these things. Since she has been here, hospice has fed her almost nothing and has given her little to drink. Actually, they almost immediately put her in a condition where she could not eat and could only occasionally drink small amounts. I use to think that hospice sought to maintain the patient’s dignity and as much quality of life that the patient had as long as possible. Now I believe that hospice does not care much about the patient’s dignity or quality of life, but seeks to get the patient in the morgue as soon as possible. I have become convinced that the policy of hospice is to kill the patient as quickly as possible by starvation or dehydration and blame the death on the disease.

I have no compliant about the nurses or aides here. As you know, nurses are a higher caliber of people than doctors. I have little confidence in doctors, but when the doctor here said that nutrition did not matter to cancer patients that hit an unbelievable low.

P.S. 4. I lost both my parents to cancer, so I have seen how people decline with the disease. I have never seen one go from being alert and capable of taking care of his basic needs with minimal help to a bed ridden zombie in a few hours.

Tuesday October. 25. Last night was not a smooth night for my wife. She woke up about 1 a.m. thirsty and in pain. She woke me up around 5 a.m. moaning, but said she did not need any pain medicine, just water. They have weakened her so much, she is having difficulty communicating. My wife seemed to have lost her sense of reality — what is going on and why. This morning she wanted to pull the catheter out. It seems like whenever she has the urge to potty, she soon has a sharp pain attack.

Afterwards, she became more alert than she has been since she has been here. Her speech improved. She has been able to tell us more clearly what she needs. She can more clearly tell us if she needs pain medicine. If the doctor stays out of the way, maybe we will find a regiment that keeps her comfortable and alert. (Can you tell that I would not trust this doctor to remove a splinter.) She complains more about being thirsty than the pain. The aides and I have been giving her liquids to drink. She doesn't seem to have trouble drinking, but she cannot drink too much at a time. It is sad to see her becoming dependent like a baby.

My parable. You want to build a bridge. You get an engineer and tell him that you want a bridge to go from here to there and to carry so many vehicles. You wanted it built with minimal cost. Then the engineer, presumably the expert, asks you how much steel you want to use. That seems to be what the doctor, presumably the expert, has done. I told her that I want my wife as alert and mobile as possible with the least amount of pain. The doctor asks me how much pain medication I wanted to give her. How would I know. She is suppose to be the expert; she should figure that out.

Anyway, the doctor reduced the dosage, and my wife is given pain medication only when needed instead of all the time as earlier. (I wonder if she has put my wife on minimum medication because she figured that it would not be enough and she is using my wife’s pain to get at me.) In any case, the current regime seems to be working for now.

It seems like now I must give approval for each shot of pain medication that my wife gets. Or at least the nurses check with me before giving her a pain shot to see if I object. Looks like the doctor has put me in charge of my wife’s pain management. I guess that I am now an expert on pain management. I don’t know what they will do on the nights that I am not here. At least the nurses and I are beginning to figure out when she needs pain medication.

The 9-11 truthers have a saying: Are you going to believe the U.S. government’s official conspiracy theory about 9-11 or are you going to believe your own lying eyes? Hospice has taken a similar stand: Are you going to believe hospice’s explanation that my wife’s almost instantaneous deterioration from an alert, mobile person into a bed-ridden zombie was all her and hospice, especially the physician in charge, had nothing to do with it or are you going to believe your own lying eyes? I for one believe my own lying eyes.

Since Sunday, they have been bathing my wife in the bed with a washcloth. They have to change her sheets while she is in the bed. It is amazing how fast hospice can bring someone down.

The doctor said that my wife’s knee was cool. According to her, the cool knee could be a sign that the end is near or it could be a random event. They will be checking for coolness for several days.

Tomorrow, I am scheduled to talk to a bigwig in administration about my complaint.

Wednesday, October 26. The nurse gave my wife two shots of pain killer last night after midnight. During the first one, my wife was able to carry on a simple conversation with the aide. When I got up, she was thirsty, so I gave her some water. The nurse checked her shortly thereafter and gave her a pain shot.

Fortunately, my wife moves around a good deal in her bed. Unfortunately, she works herself toward the foot of the bed; they have to pull her up from time to time. Last Friday, she was able to pull herself up. Now two people are needed to pull her up.

My wife has been sleeping more today than yesterday. However, she was awake enough in the afternoon to watch some TV; this the first time she has watched any TV since she has been here. She has been thirsty today. Since midnight she has drank little more than a can of Pepsi and more than 3 cups of water. They certainly have dehydrated her.

Some of the people here prefer moistening the mouth by swabbing it instead of giving something to drink. I wonder how long patients who have no one with them can go without water. Well, according to some here, a person with advance cancer can go weeks without water. Apparently, people with cancer do not need water.

They do not feed patients here. Apparently, hospice’s motto is that food does no good, so why give it. So far, only one aide has offered my wife anything to eat and has feed her anything. I asked her did she want anything to eat this morning, and she said no. I did feed her a little pudding this afternoon. They should be offering patients food, and let the patient decide if he wants anything to eat. But then, most of them are probably in such a drugged stupor as my wife was a few days ago and cannot answer and cannot eat even if they wanted to because they are so drugged out.

The way hospice has treated my wife since she has been here has taken days if not weeks off her life. I am still convinced that hospice wants to get its patients to the morgue as quickly as possible.

I don't believe that hospice is in the euthanasia business in the sense that they deliberately poison people — if one assumes that the medication that it gives is not poison. However, it is in the sense of withholding food and water. Instead of practicing overt euthanasia as Kevorkian advocated, it practices covert euthanasia

The doctor here seems to be of the Kevorkian school. (I wonder if she was one of his students.) She seems to looks forward to someone dying.

Hospice gave me a booklet that describes the symptoms that appear as a patient approaches death. I could achieve the same symptoms in a healthy person if I put him in a drugged stupor and did not give him anything to eat or drink.

One reason that I wanted my wife consciousness was so that she could tell us if she needed pain medicine, food, or water. She knows better than anyone else whether she is hurting, thirsty, or hungry. The hospital had gotten her trained to call for pain killer when she started to feel uncomfortable pain. She had gotten pretty good at doing that. At the hospital, she could call for a nurse if she needed pain medication. Here, because hospice immediately made an invalid of her, she cannot. Someone must be with her to find out if she needs any. As she is now able to communicate orally, when she starts making sounds or movements like her pain is beginning to rise, the nurse or I can ask her if she needs pain medication. Some times she does, but at other times it is because she is thirsty. More often than not thirst is the reason. At times she has gone four hours or more without any pain medication and maintained her comfort level. At other times she needs a shot two hours after the last one. The frequency at which she needs pain medicine varies. We do know that when she starts to feel the urge to potty, she most likely needs pain medication. When the nurse and aide bathe her or change the sheets, activities that will cause her to be moved a lot, she should get pain medication before the activity.

P.S. 1. Here is a message that I sent to people warning them about hospice:

Some of you know, but most of you may not. Last Friday afternoon about 4:00, my wife was placed in a hospice facility. Based on my experience since then, I strongly urge you not to allow a love one to go to a hospice facility if at all possible. Here is my commentary:

When my wife enter a hospice facility for pain management, she could converse, walk short distances with a walker, bathe herself with a wash cloth, feed herself, sit up, watch TV, sit in a chair, look at a newspaper, etc. With a little help, she could take care of her basic needs. A few hours after entering the hospice facility, hospice managed to turn her into a bedridden zombie that can no longer do any of these things. Since she has been here, hospice has fed her almost nothing and has given her little to drink. Actually, they almost immediately put her in a condition where she could not eat and could only occasionally drink small amounts. Of course they blame this rapid, almost instantaneous, decline on her. Hospice claimed that it was completely innocent of this immediate decline. After I complained, hospice reduced the medication, so now my wife can tell someone that she is thirsty, hungry, or in pain. Unfortunately, hospice had weaken her so much that she remains an invalid. Hospice’s policy seems to be to get the patient to the morgue as quickly as possible. It seems to be practicing a form of covert euthanasia. I am convinced that hospice has taken days if not weeks off my wife's life. Don’t let hospice get its hands on anyone you love — especially at one of its facilities.

P.S. 2. I don't believe that hospice is in the euthanasia business in the sense that they deliberately poison people — if one assumes that the medication that it gives is not poison. However, it is in the sense of letting patients go without food and water.

Thursday, October 27. When I arrived this morning, my wife was awake with eyes open. However, she did not look as good as she did when I left her Wednesday. I learned that she had had a shower. Such movement wears her out. She can now grip my hand. For the first time since last Friday, she can hold a cup. She held a cup of orange juice as she drank it. She also turned the TV on for the first time and changed the channel. Moreover, she was able to feed herself some ice cream. As this is the first time she has eaten anything other than some applesauce, she has been eating too much. She is trying to do more things for herself, but is too weak to do much. Stopping them from keeping in a drugged stupor seems to have helped her. She may feel a little bit more pain, but she is having a higher quality of life.

One of my wife’s friends, who is a nurse, visited her Tuesday. The friend was surprised that my wife did not have an IV. I ask the hospice honcho about the lack of an IV. He said that hospice seldom uses IVs because they may cause compilations, such as fluid in the lungs, in the last days. So, hospice does not use IVs even when the benefit out weighs the risk because some time in the future, the risk may out weigh the benefit. I consider this response more evidence that supports hospice hastening death with dehydration. I followed Mark Twain’s advice, “Do not argue with an idiot they drag you down to their level and beat you with experience.” Thus, I did not pursue the IV issue. Not wanting him to beat me with experience, I avoided argument and confrontation with him about anything. I just expressed some of my concerns and observation.

My comment to him about offering patients something to eat may have gotten some return. Today, an aide has asked my wife several times if she wanted something to eat. For the first time since Friday, she drank some Ensure.

Based on my observations and comments that some of the people, not the nurses or aides, have made around here, I have come to the conclusion that hospice’s mission is not so much to ease the passage as it is to hasten the passage. It is essentially practicing covert euthanasia.

My opinion of hospice has turned 180 degrees. I had always thought that its mission was to ease the passage to the other side. I have come to learn that it is to hasten it. Its concept of easing the passage is to drug the patient into a zombie so that he does not know what is going on. To make the trip to the morgue more quickly, it withholds food and water unless the drugged zombie, who can hardly talk at all, asks for some. Hospice seems to treat everyone as though he has only days left to live although he may have weeks or months.

I feel as though I am deep behind enemy lines defending my severely injured companion and trying to keep her alive. Although not enough, I find myself fighting harder for her than I ever would for myself.

The aide worked with my wife to get my wife to pull herself to her side.

The nurse and I discussed my wife’s pain medication. Considering the frequency that my wife is receiving pain shots, we decided to go back to a shot every four hours with break through shot whenever needed — the doctor approved this change. This should smooth out the pain and reduce the shots. Hopefully, it will not make her a zombie as she was earlier this week. According to the doctor and nurse, she should receive less medication if no pain break through shots are given.

Their favorite excuse for my wife’s sudden collapse is that she finally got a chance to relax and sleep away from the bustle of the hospital and its interruptions. (Her interruptions were cut significantly in the last week after the hospital disconnected the IV.) However, here they were given her a shot every four hours. So the nightly interruptions were just as frequent. During the day, the interruptions are about the same albeit for different reasons. Moreover, she never displayed such a collapse when she came home from the hospital before. Home has a much more relaxed atmosphere than the hospice house.

For the first time in several days, my wife was able to use a bedside commode. She finds that better than a bed pan.

Dilaudid is the pain medicine that they are using on my wife.

I am spending tonight and tomorrow night with my wife.

Last week

Copyright © 2011 by Thomas Coley Allen. 

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