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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