In discovering this website I have also discovered the relief of anonymity. I don’t need to appear loving, kind, long-suffering, loyal, or compassionate. I can let my dark side show. So hear goes-
How many of you have thought about killing your AD spouse? I know I did. For one thing, my husband was a man, even more than most, that hated beyond anything the idea of being incapacitated in any way. I felt and still feel that killing him would have been an act of love and mercy.
And reading so many posts from so many of us about violent, angry, abusive behavior. This disease makes so many so miserable for so long – why can’t we just put them to sleep? In my opinion we treat rabid dogs better than we treat AD victims.
I know, without a shadow of doubt, he would prefer to be dead. At one time, because of his heart condition, I had access to morphine. I could have done it. The only reason I didn’t ? I was afraid I’d get caught and spend the rest of my life in jail. I don’t love him THAT much.
beenthere- very personal decision. To me there is a huge difference between with holding treatment and letting someone die and actively killing them. My husband was never tolerant of anything that got in the way of what he wanted to do. I used to joke that he would want to be shot if he broke his leg and couldn't play tennis. He was not tolerant of others' ailments. He is in a dementia ALF. Does not know me, is incontinent, has no purpose in life. He is his own nightmare. His care is taking all that we worked for. But he is here and I have to believe there is a reason. Perhaps it is to teach me the value of life and to live it as well as I can.
Everyone thinks deep dark things. I have thought "I wish she was just dead so I could be done with it" more than once. It doesn't make me a bad person, just a person who has been through a lot.
Beenthere, I know how you feel. I see her at her NH, down to the weight of an Auswitz survivor and looking like a skeleton on legs, and I think how can anyone let this go on? What kind of people would keep my wife alive to suffer, when those same people put a dog out of its misery because it's the kind, humane thing to do?
I see stories about murder/suicides of little old couples who could no longer bear to go on through the daily misery they are enduring, and I wonder if we couldn't have had some compassion to let them end peacefully instead of forcing them into violence.
Mercy or murder? I don't believe it's as black and white as we'd like to think.
I have to agree w/bludaze. I know that if my husband was aware of his incapacitation he would not want to live. I also think there is a reason why this is happening. Sometimes I find myself believing he is in stage 7 and it can't be much longer. I even pray that it will all end soon. Then again when he was running the fever and so sick w/his UTI I found myself praying that it wasn't the end. So many mixed emotions!! hugs, Mya
Most of us, i think i can safely say, here are still in the throws of hanging on to whatever part of our dear spouse that is left to us. and that being said, my own personal decision is that i could never become the person who would accelerate his death by my own hand. i can admit i have wished that when his time comes it be cut short and peacefully and not linger in pain or dispair. other than that i will continue to cherish his being here on earth with me, regardless of his demise and loss of functions and will regret his loss as soon as it happens every day after--. you said in another post, that in the end stage, holding rocking and singing works to calm their poor souls and so i hope to be able to offer that comfort when the need arises. i do believe that hospice is a sort of a way to mercifully help them along when the inevitable is at hand- divvi
I have to agree with divvi and bluedaze, but yet at the same time I wonder where the line is drawn when speaking of withholding treatment. Hospice will treat pneumonia but yet they say pneumonia is the friend. I do not understand this. How do you know when you are going beyond the line with treatment. Some say do treat pneumonia in the 7th stage and others say do not. Do we even have the right to decide? Is it ethically and moraly wrong to withhold treatment like that? Is it even our choice.
I think if Hospice says treat then you must. Hospice is for comfort care but yet they do advise treatment. Then with treatment comes the longer life span allowing them to go right into the bedridden and zombie state. What is right , what is wrong??????
I agree it's a huge difference between witholding treatment and actively killing someone. I'm just saying I have felt it would be the most loving thing I could do for him.
I will not ask them to treat him if he gets pneumonia other than to keep him comfortable. I have no doubt that is the right thing to do, although, like Trisinger I can't help feeling putting him out of his misery would be more moral and humane.
Before antibiotics, we wouldn't even have these questions. My feeling is - when you can't take care of yourself at all, nature means for you to die.
I am very surprised that Hospice said to treat pneumonia. As you say, they are for comfort care at the end. What is right? What is wrong? It is an individual decision, and unfortunately, the main caregiver is the one to make it.
How ironic that advances in medical science keep us alive longer so we can suffer longer.
Joan-our local hospice chooses to treat Bill as a comfort measure when he developes chest congestion. They actually put him on one of the most expensive antibiotics.
Beenthere...I remember only too well when I wondered who I was going to kill...him or me! He was driving me crazy....I was not a good caregiver and all I wanted to do was get the hell out of this mess. He begged and cried for me to kill him.....he knew what was coming and he didn't want to participate. This was back in 2000..he lived for eight more years. But, I do think that we sometimes keep people alive much longer than is humane.
My husband got pneumonia in February of this year. I called the Home Health Nurse in and he confirmed my suspicion. My husband had been bedridden and unresponsive for almost five years at that point. The doctor and I agreed not to treat and I called hospice in and we provided comfort care and he passed very calmly and in no pain. If not for the pneumonia, I am afraid he would still be alive in a fetal position.
The only experience I've had with this is my former father-in-law, who is a world renowned scientist who everyone here would recognize not his name, but the drug he invented (talk about a run on sentence) had a 1st wife who was dying of cancer. He in a very serious moment admitted this to me. He loved her with all his heart. I mean, they were truly soul mates. Knowing what he knew of her prognosis, he slipped into her hospital room one night & gave her extra morphine which ended her life. He did this out of love, not wanting her to suffer anymore.
When my mother was dying, I asked her dr. if he could give her more morphine. She was having seizures for God's sake. I don't think someone who is having seizures is 'resting comfortably." He said no, that would be like killing her. Well? So do you want a long drawn out death where someone suffers, or let's cut to the chase since she's dying.
A friend of mine & I have made a pact. & we have enough to do it. I always thought that perhaps that's how Jackie O went. So convenient to have her entire family around at her death. I think she had enough money to have a dr. do as she wished.
I couldn't do it myself to someone (except my friend, where we have a mutual pact.) I believe in Karma. But I would be oh so tempted to put someone who I loved out of their misery. Like my former father-in-law. I guess there were no inquiries. He continued practicing medicine.
I've already told my stepson I want him to come and shoot me if I end up in a nursing home where they expect me to play Bingo! But, seriously, Oregon is our home state and the only one wise enough to have Death with Dignity as a law. However, it doesn't work for AD because of the mind issues. There is another group called Compassion in Dying (I think that is the name) that my cousin contacted for her husband who suffered from EOAD for 15 years and wanted to commit suicide. (Luckily, he had a heart attack about a month ago and died.) I was really surprised such a group existed. We also read Final Exit - and for me, I don't mind putting a suffering dog to sleep, but I just couldn't do that for a spouse or anyone else. Thankfully we have Hospice these days and I don't think most of them treat pneumonia, but I might be wrong. Right now I feel as if I have my DH's life in my hands while I struggle with what is best regarding removal of his gallbladder. It looks as if we have some time to make a decision, thankfully, since right now I'm not sure how to procede.
In my spiritual beliefs, you have to ask permission before doing anything. (I hope I will be forgiven for drugging my husband after he raged at me over nothing.) So, unless you have a person's permission to "let them go" I couldn't do it. But on the other hand, I love my cat so much, but if she were in pain & no hope for survival, I would agree to have her leave the earth plane. She has no way to communicate her wishes.
In 1983 my sister and I decided not to treat our mother's pneumonia. We didn't let they put her on a respirator. She had been very sick for a long time. Major heart surgery. Congestive heart failure as a result of the surgery (back then those surgeries didn't last all that long). Colon cancer. And finally two major strokes.
They had checked her out and every system in her body was failing. Pneumonia was kind.
I believe in benign neglect. There are things I will not treat even now. Other things we are treating because they improve my husband's quality of life. But I have set limits on myself. And in Pennsylvania they have a requirement that the patient advocate sign off on the fact that they know what the patient wanted and they agree to do what was requested. My husband wanted no heroic efforts if he was terminal. I'm going to do what he asked.
Bluedaze, your comment brought me to tears, me a person who doesn't cry. Yes, you're right. And as I cried, she came up to comfort me. I think she feels my emotions. She got in my face & meowed. I needed a good cry. Can't believe I have tears on my face.
I agree re Jackie O. Indeed, at a hospice facility near where i live there's an understanding that the length of stay is something like 9 days. Lotsa morphine. This is mostly cancer end-stage.
I always used to tell new mothers that the measure of your sanity is NOT that you want to pick up the screaming baby and throw it against the wall. Everyone wants to do that one time or another. But the measure of your sanity is that you do not DO it.
And I think the same may be said for us. However much we may want to help them out of this life, we can't really, in the end, do it ACTIVELY. But passively, yes indeed.
But when the nurses said, fairly point blank, that I wouldn't be able to care for him at home and should put him in a NH, which would in my mind without question hasten his death, I couldn't do it.
Joan, I also was very surprised when they told me they advise treating pneumonia. I had a discussion with the nurse yesterday, in fact we have had two different nurses tell me that. She was going over things that would happen as my husband progresses and I asked her do they treat pneumonia, she said yes, I could not believe it.
I told our daughter and she and I both agree, in fact my husbands whole family agrees, we will call his Doctor if he does contract pneumonia and no one will be allowed to treat him unless his Doctor recommends it. I will go by what he says. I thought that was why you had Hospice, comfort care, not life saving treatments. Why would you want to treat someone in the severe stage of this disease for them to go on and on to a worse state. I am having such a problem understanding this and then I wonder if I am wrong to think that it should not be treated.
Sid and his cousin were the legal guardians of their 92 year-old aunt when she was in the final stages of Alzheimer's Disease. ( She was in a NH) When she contracted pneumonia, the doctor called them to ask if they wanted him to treat with antibiotics. He recommended against it, but said it was their decision, and he would abide by it. They declined treatment, and she died a short time later.
It is a personal, family decision. It's rough, but no one can make that decision for us. We're stuck with it.
Re: Jackie O - She went into the hospital; they sent her home saying nothing more could be done; and then every relative she had was "visiting", and the next thing you see is her son giving a news conference saying that his mother "lived and died on her own terms." No one needed to be a rocket scientist to figure out what her decision was. She made that one herself. Unfortunately, AD patients are not able to make the decision - we have to do it.
Well Joan, our Hospice did not seem that they would be asking me, they said they treat it. I wonder if the patient has to be bedridden and my husband is not, maybe that is the reason, not far enough along, although he is in stage 7b and severe enough to have Hospice. I would think that is pretty far along.
also adding to my above post, final stage is actively dying but yet some people call final stage when they are in stage 7 but yet that is not so. Maybe they have to be actively dying in the final stage before the withhold treatment. That sure is not what our Doctor suggested when he first called Hospice in for us.
that may be the reason Jane since hes not bedridden and on his 'last legs' so to speak.i know when my DDad had a massive heart attack 2yrs ago, they asked if we wanted to continue to do the IV to keep his heart working. his BP was going so low etc. i had to make the decision to stop the IV and then they increased the morphine drip alot and then he went peacefully after that. i think it depends on that particular dr and or hospice. divvi
Joan, Hopefully I'll be able to live & die on my own terms. I thought she had assistance. Are you saying you think she simply took her own life? I always thought a dr. gave her enough drugs to do it.
Yes, the AD spouse has to do it, and may it be swift & merciful.
Jane, did they specify what they meant by "treatment"? Having difficulty breathing can be very scary, so they typically use medications and supplemental oxygen to help the patient breathe more easily and be less fearful. They may not have meant treating with antibiotics.
Jane - Do you have a choice of hospice in your area? I recently switched to a different one, because I was not happy with the attention my husband was receiving with our first hospice. Different ones may have different philosophies.
Val - that is a truly amazing story about your father-in-law.
I think in many, many instances terminal patients are given a little help over the threshold with morphine. My cousin cared for her mom in the last stages of ovarian cancer and felt troubled about the amount of morphine she had given towards the end. The hospice nurse told her "Honey, YOU didn't kill you mom, CANCER killed her." It help alot with her feelings of guilt.
Thank you all for your responses. It helps to know we aren't alone in our feelings.
beenthere, we had the same dilemma with my Grams, she had a massive heart attack and their was nothing that could be done, plus it was her wish. The doctor asked us if we would like to up her methadone to let her go quicker.... it was hard but we all agreed.
As for Euthanasia..... I remember when my Uncle was dying.. a long horrific battle with cancer. During the last two weeks of his life, it was all I could do not to put a pillow over his face to smother his screams and end his misery. So yes, I do believe in giving the humans we love, the same respect, compassion and kindness we show our animals. It is tragic how we treat our terminal loved ones in this society... IMHO
At first when my Neurologist said Lynn was terminal and I didn’t have to treat things like pneumonia or an infections I was totally floored. I thought he meant now, and that would be so wrong in my eyes. Though Lynn is in late stage 6/early 7 ... he does still have quality of life. He can still laugh, cry, love. He still dresses(with help) and eats by himself etc etc….We talked more and what he was doing was letting me know, when the time came, and he said trust him, I WOULD KNOW, then he wouldn’t have to be treated. My sister has worked in NH for some 20 odd years, she said when the time came I would be begging that he got sick. Having read some of your stories, Sandi’s comes to mind… I have to say I know I would!
No, I didn't mean that she did it herself. I figured as you did. She said goodbye to everyone, and told the doctor to turn up the morphine. Just my opinion, but I think that took a lot of courage on her part.
I hunt mushrooms from time to time with a friend. There's a certain amanita, the "avenging angel" which is fairly easy to distinguish from others and one of the few which is really, truly, surefire deadly. It's also said to taste great.
We've thought we should fry some up and freeze them, just in case...
One of my fears of suicide is what if you don't go a good job of it and wind up worse. I knew a despondent young woman who had a stroke and was paralyzed on one side. She jumped out of a window to kill herself and fractured her good leg.
When I signed my Mother up for Hospice last winter I had to fill out a questionaire and one of the questions was did I want antibotics administered if she got pheumonia or just made comfortable. She was 92 and quality of life almost nil but it was still a hard decision to make at the time and place. I worried about it and asked the nurse what most people put down and she said to make comfortable. I did and 6 months later as she got to the point of almost being a vegetable I was glad I did. She did not get pneumonia. They gave me packs of morphine with instructions to not use unless advised by the nurse. During the last month the nurse suggested I might want to give her the low dose of morphine to be sure she was comfortable, although she wasn't exibiting pain. I did as prescribed on the bottle.
My FIL had advanced AD and in a NH. He developed prostate cancer. The urologist asked DH if he wanted FIL to have the surgery, radiation, chemo??? DH said "NO. Just keep him comfortable. I do not want him in any pain." FIL lived another 3 years in practically a vegetative state. Very hard decision for DH to make at that time. I do believe that's what he would want me to do if or when the time comes. I just hope I have the same resolve that DH did.
briegull, may I suggest you find something that may not taste as good, but is a bit gentler? "General paralysis. Violent bearing-down pains. Pains are accompanied by sensation of cold, numbness and tingling. Sensation as if pierced by needles of ice. Sensitive to pressure and cold air." And so on and so forth.
The "avenging" part is due to the very awful, lingering death that it produces, not just the fact that, sooner or later (often much later) the person who ingests it will die.
I believe most of us have those dark thoughts, especially as things get worse. I've also thought of coughing or sneezing directly on him, so he'll get pneumonia! Also thought of smothering him. But of course, you can't do those things! Nor would you really want to!
Fortunately, he left a power of attorney for health care. His poa is very clear - when he is at the point that medicines will only prolong the inevitable, take him off all medicines. In California, that is called comfort care. So he has now been off meds 2 1/2 months. The only thing they will give him is pain medicine and oxygen, if and when he needs those things. He is rapidly going downhill and we are not expecting him to live through the winter.
I had a friend tell me one time that we are more humane to our pets than to our people. When animals get so sick and there is no quality of life, we do euthinize them, but of course, we don't do that to people.
There have been 3 times when I have had to make a decision about care for a member of my family:
1. My grandmother, age 88, was in a nursing home after a stroke, blind and deaf. Her only words were "let me die". The home called me to say she had pneumonia. When I suggested they call her doctor, they said he was away and I was his covering doctor. Also, my parents (her daughter) were away with no telephone contact. Thus I was both her doctor and the only relative available. I decided on no antibiotics. She recovered and lived another 10 years!!!
2. My wife's aunt was in a nursing home in Philadelphia (we live in Maine) and had stopped eating. They wanted to put in a feeding tube. We (the only relatives) decided NO, but they went ahead anyway, cancelling her "Do Not Resuscitate" during the surgery. She pulled the tube out. Again they wanted to replace it and I said NO. They again went ahead, and she pulled it out again. This went on for three insertions, and she pulled it out three times. Unfortunately, my wife and I could not get to Phila to confront them face to face. Finally she died.
3. My mother, age 100, was in a nursing home after a brief hospitalization. She was alert and talking. She stopped eating and drinking, and refused all attempts to get her to eat and drink. We continued supportive care, but no feeding tube or IV. She lasted 2 weeks and died peacefully with her family at the bedside.
While these decisions can be hard, we try to do what we know the individual wants. Withholding treatment is quite different from actively ending someone's life. With regard to the use of morphine in cancer, the correct dose is enough to control the pain, even if it shortens the patient's life. This is not euthanasia, but rather symptom relief.
When my Mom was receiving hospice care from me, in my home, she was on Morphine. I, being a nurse, knew the "control" that was in my hands every time I picked up that syringe, drew from the multi dose vials, and administered a dose. I wanted her comfortable, yet I feared making that decision the one time that could be her FINAL dose. I think, because I loved her so dearly and didn't want to see her go. The hospice supervisor even told me that I was very much underdosing, compared with what they see the typical cancer patients using. My Mom never appeared to be in excrutiating pain in her last 3 days, THANK GOD!!!
Question. what if your spouse has had allergic reaction and paranoia to morphine? in the end stages what do they use, in that case? or would it matter anyway? divvi