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. 

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