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My aunt, who is 97, has chosen to die at home, without any drugs. I'm her sole caregiver. She has Stage 4 heart failure, scoliosis, glaucoma with blindness, and bouts of recurring and painful shingles. She is also bedbound. She has three Advanced Directives signed - a Living Will, a MOLST form, and a DNR, all stating that she is not to be given artificial nutrition/hydration or intubation and has adamantly stated multiple times, on video, that she does not want to go to the hospital, engage with Hospice, or be given morphine at the end; she wants to "tough it out" - her words - and die a "natural" death.
Over the last month or so, she's slowly lost her appetite and eventually was only able to drink small amounts of Ensure and water. She began to show signs of dehydration. I called her doctor, and he reassured me that it was normal and natural and suggested we call Hospice. I asked her if she would mind if Hospice came in and she said she would prefer they didn't - probably based on our bad Hospice experience four years ago. Hospice service in our area is not good and at that time had actually made things worse for her.


About ten days ago, after a course of Valocyclivr prescribed by her doctor to combat what we thought was a dangerously spreading case of shingles, she appeared to have a mini stroke. Because of her directives, and because our hospital does nothing for minis but send you home with aspirin therapy, I didn't transport her. After about 24 hours she was able to speak, drink, laugh and consent so I told her what had happened and asked if she wanted to be hospitalized. She refused "no matter what happens."


Over the last three days, her condition has degraded. She's unable to swallow. She has bouts of erratic breathing. She can't speak. She is asleep most of the time, but wakes up once in awhile and makes a small groan/grunt at which point I give her licks from a water pop until she pushes it out of her mouth and goes back to sleep. She has told me she feels no pain. The last time I asked her if she wanted morphine, about two days ago, she angrily said "No, no, no, NO! I SAID NO." So I guess that's a no. Because we knew she was dehydrating, I asked her if she wanted to be put on IVs. Again she refused.


The night before last, she managed to speak long enough to lash out at me and tell me she felt "like a fool" and she guessed I was going to throw her "one long pity party right up to the end." I guess because I was trying to comfort her. We've had a pretty good relationship over the last five years of caregiving. Although she could be emotionally abusive and throw unwarranted guilt in our younger years, we had grown close through this and I didn't expect her to "turn" on me although I know that can happen at the end. I'm not so much concerned about that as I am about the fact that I feel neglectful, guilty, scared, and confused by the results of her adamant insistence on dying naturally - as if I'm causing her death, as crazy as that sounds. I cry a lot privately. I do have siblings for emotional support who trust my judgement. I'm not pretending to believe I'm the perfect caregiver, I give myself about a B+ through the whole thing. But her doctors, lawyer, relatives, and my friends have all said I've done my job and well.


So my question is: Why, in spite of all of her wishes, do I still feel responsible for this outcome? I don't have a problem letting her go; we've said all that needs to be said and love each other very much. But how is this "natural death" superior to being drugged out of your gourd in the hospital? And I'm not being flippant here at all. I really wonder if this is better, and am I doing the right thing? If she is really really struggling at the end, should I give her morphine in spite of her wishes? Thank you for any insight you can give.

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Do not give her morphine in spite of her wishes. That would be assault. You must not do that.

Do have morphine available and make it clear that if she gets exhausted with pain or frightened it is there to help her, and you will give it to her and not have a single comment to make about it. This is not a test or a competition. She has nothing to prove.

Detach, in this context, means remembering that hard though it is for you to witness this experience, it is your aunt who is dying and not you. You are supporting her to her end in the way that she wanted you to. I think you deserve a higher grade than you're giving yourself for that reason alone!

Mood swings and lashings out you'd best ignore as far as you can. Goodness knows what changes are taking place in her brain, and you really can't regard anything she says as her true feeling or belief. It could be fear, anger, or despair speaking.

I think it is also important to remember, though, that your aunt can choose for herself, but she can't choose for you. If at any point you cannot bear to continue, you are entitled to call for help. Not for her, for you. You have that right. She can't be left alone, but she can't insist that you are the one who stays with her.
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Myownlife Jul 2019
You have such wonderful insight, Countrymouse :)
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Joy--
I am really, really sorry for what you are going through. You must be one tough cookie to be dealing with the dying process with someone who is still, while actively dying, a force to be reckoned with.

Frankly, she's being a little selfish--but that's not here nor there.

Sadly, you ARE doing the best you can, and you need to be told that by many people. Your aunt is dying and you are accepting that--good. But how hard to fight each day to simply stay alive with absolutely no QOL.

Dying can be very painful, and as aunt's organs shut down, her body will reject even water--it will hurt too much. It isn't pleasant to watch.

I, personally, WOULD give the morphine, but that's just me. If you want to adhere to aunt's wishes, you shouldn't do it.

Choosing hospice makes the dying process easier on everyone--first and foremost, the patient. The family all being secondary.

You have supportive sibs? Lean on them. We here on the AC boards don't know your particular dynamic, so it's hard to make a suggestion.

May I ask why she is so opposed to the hospice route?

Again, I am sorry for what you are being put through.
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Musicismymuse Jul 2019
You would really give morphine to a person who adamantly refused it? Dying does NOT have to be painful. I've personally known many members of my family and parents of friends whose deaths have been incredibly painless without morphine despite cancer, etc.
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My grandmother died a ‘natural’ death in the hospital. She had Chronic Leukaemia. She refused any medical intervention.

She was given O2 and kept pulling off the mask. I asked the nurses why, they said that as long as she was breathing on her own, the O2 was not considered an intervention. The only other thing was a catheter. That was far easier than being diapered and changed. At that point her skin was so thin, it tore in contact and she bruise at the slightest touch.

She did not have any drugs, nor an IV. She died 2 days later in her 82 birthday.

My step dad died last November, he too was in hospital and riddled with cancer. It was in his spine and the pain incredible. He had enough morphine to keep him comfortable, but not drugged into a stupor.

He too lives to a birthday and a few days later. He lost consciousness about 48 hours before passing. We could tell when he was in pain, grimaces on his face and one arm would flail. When we called the nurse for more morphine, each time it turned out to be when it was scheduled. He did not lose consciousness due to the morphine, but do to his body shutting down.

A few hours before he died he was give a medication to reduce the fluid in his lungs. It was administered via eye drops. I am not sure if the name, but it eased his breathing.

Is there a right way to go? It sounds like your Mum has decided how she wants to go. Remember you do not have to be there if it causes you distress. She may not Hospice, but you may need it.
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Joy, I wonder if your Aunt thought that to her a natural death meant going to sleep one night and not waking up? Simple for her, and simple for her love ones who are surrounding her.

Could be that your Aunt is not realizing a natural death in her case isn't going to be peaceful, that it will be filled with panic and pain. Ok, that is her choice, but is she being fair to you? Is this the last moments that everyone wants to witness and not be able to shake from their minds?

I can't imagine what you are going through. And here you know you can help her transition peacefully but she isn't letting you. No matter what, you will feel guilty if you do what she said, and feel guilty if you take matters into your own hands.... [sigh].

Just keep telling yourself, this is Aunt's choice, not mine.
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As of two days ago she expressed her wishes for no morphine which seems consistent with her documented advanced directives and she even went so far as to put it on video, which tells me she is quite adamant about this. In pain and quite ill, she is still unwavering. I think the best thing you can do is to put the wishes of your loved one first, even if it is not what you would chose, and it sounds like you are doing that. She had a prior bad experience with hospice, so does not want to invite a similar experience again. While it must be gut wrenching, I think you are staying on the course she wants. You can keep asking her if she wants morphine so she knows it is an option if she changes her mind. Same with water. She may get irritated at you, but at least she will not feel denied anything. I agree with what others posted here to perhaps contact hospice for yourself. I am sorry for what you are going through. Prayers to you for clarity and peace.
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I would tell her one last time that you will now follow her instructions for no medications and allow her to do it her way. I would tell her to let you know if there is anything you can do for her. Otherwise I would simply be there for her if she wishes to make a need known. She is actively dying now, and as a nurse I can tell you that the dying are busy dying. The separate from the living as a part of that, as well as stopping to take nourishment. Do not force fluids, as it will prolong this for her. Offer a small gauze soaked in ice water for her mouth and lips if she would like it. Leave her be. She is busy moving on to the end of her life. She has made her wishes clear. Please do her the honor of honoring them despite your own strong feelings. Thanks for being there for her. There is, quite honestly "no superior death". Death is never a lot of fun, no matter what. She is doing it her way the last time she can.
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cherokeegrrl54 Jul 2019
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countrymouse said...

“I think it is also important to remember, though, that your aunt can choose for herself, but she can't choose for you. If at any point you cannot bear to continue, you are entitled to call for help. Not for her, for you. You have that right. She can't be left alone, but she can't insist that you are the one who stays with her.”

This is very important and bears repeating. She can ask to die her way, but you are not obligated to handle it all yourself. You are the one who has to live with the memories... there is nothing wrong with getting help.
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Joy, I'm so sorry you are going through this, but I'm also glad that you are there because your aunt obviously trusted you to follow through with her wishes, as hard as it must be. No, she can't be alone, but it doesn't mean that you have to sit at her bedside 24/7 if that's too hard for you to do. It doesn't sound like there is much to do as a caregiver, only as a loving family member. It's ok to go into the next room and wait, as she is waiting. Once she is gone, you will know that you did right by her. Hugs to you, no one can ask for a better niece than you.
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What do YOU want? Do you want her to die in the house? Or in a professional setting such as hospital where others will help you? Perhaps hospice care place? She just wants you there, so you can be at her side at the end. Hospice can also help you. This is something that you don’t want to handle by yourself.
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Musicismymuse Jul 2019
Hospice should not be called if a loved one objects. I found it helpful to speak to a counselor on the phone over the last few days of my mother's life. One caveat: hearing - even if impaired - seems to be amazing at the end, so don't talk where you might be overheard!
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I want to thank everyone for their kind and thoughtful answers. My aunt passed away peacefully Wednesday evening, on her own terms, with no drugs and no real struggle. She just stopped breathing in her sleep as family and I were visiting a few feet away from her bed. I'm grateful that she's at peace. Thank you again and take care.
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BarbBrooklyn Jul 2019
(((((hugs)))))), Joy. I'm so glad that she's at peace.
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I am glad that she passed so peacefully in the end, Joy, and thank you for letting us know. Best wishes and all sympathy to you and your family.
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my Condolences Joy to you and your families. I came into this thread late but I salute you for sticking by your aunt and her wishes. It takes a very strong person and she knew that you would do right by her (although maybe you didn’t feel that way at times. It’s totally understandable). This end of life experience with a loved one makes each one of us think about how we want to be handled near the end. I never understood hospice but I do respect that concept now because suffering is not fun for anyone. Although you were tortured by her choice, your conscience should be clear of all guilt debris. Kudos to you💕
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She's made her wishes known. She claims she is not in pain. Her way is not superior to using drugs to ease the death. But it is not inferior either. For whatever reason, she feels that it is the right way for her. I don't know if she thinks it is being stoic or brave, or if she is religious, that she believes it is the way God wants her to meet him.  If she is unable to swallow she will not be able to take pain medication in pill form and since she doesn't want IV, what is left is a pain patch. I'm wondering if that might be more acceptable to her At any rate, the longer she goes without water the quicker she will pass away. When my mom stopped taking water, she only lasted 3 days. Do not feel that you are neglecting her since you are honoring her wishes. Good luck.
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mavisgm Jul 2019
A pain patch is not the only solution. Morphine is administered in liquid form, by drops, under the tongue (sublingual), where it is absorbed directly into the blood stream.
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My heart goes out to you. Such dedicated kindness.
I am dealing with thoughts that my 93 year old Mother in law would not want to be kept alive with meds’ now. She was living independently until April of this year when she had a vascular stroke.
She currently can’t speak,can’t see , can’t dress herself. We have put DNR in place ( after speaking with various nurses re what happens when an elder person has to be resuscitated) I can understand how you must feel in your situation, however, to keep someone existing ( no quality of life) on meds can be deemed as brutal as not administering meds 🤷‍♂️
Sending a big hug your way 🤷‍♂️🤗
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Musicismymuse Jul 2019
My heart goes out to you. Rest assured, everything is progressing as it should. Your calmness, peacefulness and love for her will make it All Right. Be good to yourself.
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Your aunt was truly blessed to have you care for her. Rest in the knowledge that you’ve done your best and she’s at peace
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First of all a hospital is not going to admit her so let go of that option. My question is why is a natural death so scary or distasteful to you. Remember it IS her right to choose how she dies. I am going to suggest you seek a counselor to help you figure this out. Death is part of life and it’s actually a shame we don’t have more say on how. I agree with assisted dying if that’s what is wanted but most states don’t. Please go to a therapist and talk this out.
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MJInslee Jul 2019
Thank you, Harpcat, you "took the words right out of my keyboard". It's very important we are allowed our choices at the end of life. The aunt made her wishes known in writing, and has spoken them. I hope the niece can find the peace she wants by examining her feelings with a therapist.
Would the niece want someone to interfere with her own choices? She has been a wonderful companion and care giver for her aunt. May that be her consolation.
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You feel guilty and responsible because this is what a good person feels. I still 2nd guess myself over my now deceased DH - I believe it is because there is no end to the love you have for your Aunt and you also know there is no cure for old age and eventually she must pass on. Her comments weren't meant to hurt you, she was trying to make you feel better.

My DH's endstage only lasted 3 days, he was almost 97. I'm surprised your Aunt is hanging on - and yes, she is hanging on. You might try telling her that you know she must leave you and you understand. But I'm not sure it will help since she is lingering. You can also tell her that people who passed ahead of her will be coming for her and she doesn't need to be afraid. They will not hurt her.

Years ago I was told that hanging on and lingering are normal human traits - and I was advised to tell my DH that it was ok that he had to leave me. I did the same with both my parents and they seemed to pass a little more easily and didn't try to linger.

My DH was in the death-coma when I told his son that I knew he was lingering and I would tend him for as long as he wanted to stay. He passed about 10 minutes later.
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I'm glad she passed comfortably while you and your family were there. I don't think any of us know how we will be and feel witnessing someone dying, as you did, unless we've been through it. I wish everyone would verbally make their wishes known to their loved ones well before the time for this comes. The DNRs, etc. are important, but it makes it easier if someone actually tells you what they want. My mother did this and although her passing was difficult, her children were all well aware that she did not want to linger in a nursing home. My mil on the other hand, although she has all the legal documents, never discussed or talked about any of her wishes with her son, my husband. She is now lying in a bed in a nursing home and I really wish she'd told him what she wanted beforehand. I think it would have made him feel better about some of the decisions he's had to make and know that he was carrying out her wishes. As difficult as that must have been, I think you can be thankful to your Aunt for being very specific about her wishes and be comfortable with the knowledge that you carried them out.
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Oh, Joy, my condolences on your great loss. Despite the stress on you, your aunt went to her final stage on her own terms. For that a huge hug to you, dear. May sweet memories of your aunt bring you peace.
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I'm glad the aunt's passing came uneventfully and on her terms. However, while reading the original posting and the earlier comments I was thinking "what part of 'no' don't you understand?" The aunt said she felt no pain (if she was being truthful). Death itself isn't necessarily painful--painful health conditions and diseases are what cause any pain.
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GinnyRuth Jul 2019
thinking the same thing
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I think you should still call the Hospice, just tell your aunt that it is the doctor’s nurse checking up on her.
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Isthisrealyreal Jul 2019
Her aunt has made her choices and desires well known, it is not okay to disregard someone's wishes for their end of life.

Tha aunt was upset by that very idea, that her desire was not going to be followed through and she was going to be subjected to care she didn't want.
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Countrymouse always has wise advice.

BetseyP
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OkieGranny Jul 2019
She has a cool name, too. :-)
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Joy, you did not do anything to feel guilty about. Your Aunt gave you a gift by making sure her wishes were known.

I am sorry for your loss. Praise God she was able to go out as she wanted.

Take care of you and know you followed her choices and that was the gift you gave her.
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Dear Joy, my sincerest condolences. You've done a beautiful thing and there is nothing to feel badly about.
My mother passed at home almost three years ago. Because of her religion, she, too did not take any medication, etc.
Believe it or not, I think it was harder on me than it was on her. Once she stopped eating, and then drinking, it was difficult to watch her dear body start to disappear. It was less than two weeks from not being able to really swallow anything - even with thickeners. I just kept on telling myself that it was not about me - the ultimate objective was for her to have a good passing. When the time came, it was everything a person could wish for: at home, in my arms, no pain, no medication or Hospice, Beethoven in the background. I even think I got a 'warning' as there was a ladybug in the bathroom with me and I heard an owl hoot at the same time; an hour or so later, she was gone. This is the truth!
Console yourself by treating yourself gently. VSED (voluntary stoppage of eating and drinking) is as old as the hills and virtually painless. A friend said to me (and we are perfectly sane people) that I should watch for 'signs.' I did, and it was a very surreal period of time when I felt Mom's presence in little things that happened. Be comforted.
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Joy, I agree with all those who acknowledge that you have done your caregiving job well. You have supported your aunt in her choice to die at home on her own terms. Dying at home without drugs or medical support or interventions is not necessarily easy and there’s no time frame to indicate how long the process might take. The way I see it, her refusal of these interventions, while her choice, takes away the support that you, as a caregiver, could receive from hospice or hospital staff that could shoulder some of the load. It sounds like an awful lot for one person, especially at this end-of-life stage. You have been your aunt’s support, but who is yours? If you don’t already have some regular breaks, you are going to need some respite. In order that you can take the best care of your LO, of course, but also for your own rest and well-being. Please find some ways to care for yourself, and keep us posted!
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my heart goes out to you, it really does. I know what you are going thru as I went thru it with both my parents at the same time. dad passed and mom passed three weeks later.
my parents 93, decided that they had enough of medicines, doctors, tests, etc. they knew and accepted the fact that their life was coming to an end for both of them and they wanted to give every thing up and let god take over from there.
It may sound horrible to some but you are doing the right thing by her. you are making sure that her final requests are for filled. no matter how bad it hurts you, you are doing what she wants. don't feel guilty or anything but proud that you did it for her as she asked.
the only job you have now is to be there by her side thru the good days and the bad. you give her your shoulder to lean on and enjoy the time she has left with her. don't worry about the negative remarks she may give you, as I got them also from parents , its not meant to hurt you , shes just blowing off stream for whatever reason. laugh, talk, love, enjoy her as you are very limited with time . stop asking her if she wants to go to doctors, get medicine etc, accept the fact that this is what she wants.
it tore my heart out also but you know what, after time I realized
I did the right thing by them. I let them die the way they chose to and I was there for them till the very end.
you should be proud of yourself for giving your loved one the end of life that she wanted, and being with her thru it all.
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Musicismymuse Jul 2019
Bless you lizzy1952. I feel as though I, too, need to let people know that to die a natural death is NOT the worst thing. Yes, it's a bit tough for us who have to watch, and I'm sure that's what well-meaning people want to spare their friends from when they advise a NH. But you and I know that when all is said and done, we wouldn't have had it any other way.
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Let her go the way she is telling you. I think the agony is with you. She is getting her wishes. If she is sleeping and not in pain or visibly suffering, honor her wishes. According to your write up, she still doesn’t want to be drugged. It is hard though I know.
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Nancynurse Jul 2019
I'm so sorry you had to go though all this turmoil with your Aunt. I pray when the time comes for me to do this with my mother that I have the strength to follow though to the end. My Mother has been very adamant about her DNR, Health Care Proxy and end of life wishes in the past when she was still mentally with it. Now that she is in the end stages of her dementia she seems to be doing a reversal. Whenever the doctor or nurses speak with her she indicates that she wants treatment. She has cancer and we decided together that she would only do comfort measures and nothing more. Now she seems to think she needs to do whatever they recommend including surgery, Chemo and radiation. I don't know if it is truly how she feels or just the dementia and not understanding that it won't do any good and will just cause her more pain. I commend your Aunt for being able to stick to her guns and die on her own terms and not someone else's.
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Some answers are assuming the lady has already passed. I understand that on July 17, she was still alive and Joy is still caring for her. Joy, you have my deepest respect. Caregiving is the most unappreciated, misunderstood jobs you could ever have. Whatever you decide to do, it will be the right thing, because you care.
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Isthisrealyreal Jul 2019
Her aunt passed Wednesday evening, July 18th
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Some people want to be in their "right" minds at the end. Drugs will make her into a vegetable. I think you should respect her wishes. You are a wonderful person to be caring for another person like this.
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Lokken Jul 2019
That is simply not true. I took care of a woman for months who recently died from COPD. I'm so grateful she took regular, small doses of morphine. It shut off the part of the brain that tells you you can't breathe. She was smart and aware when she was awake. She died without panic. She was not a vegetable. Choose your words carefully.
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I can tell you from my experience, my mother only got to enjoy the morphine for the last 2 days she was alive. Nobody told me, including the SNF or Hospice that my mother was dying and I didn’t know what dying looked like. So on the final day when I had a relative walk in to assess my mother and my relative told me she was dying, I called hospice, they took her friday night 9pm, she got morphine there, and on Saturday she got the morphine, but died saturday night at 1050pm. When my mother wasn’t sleeping all the time and I could talk to her, I did ask her if she was in pain and she said no. Maybe they are not in pain, but they are very uncomfortable as the constant agitation was going on, that’s where the morphine helped. My friend did not give his mother morphine at all because he didn’t think his mother needed it. She showed no signs of pain. So I would not worry about the morphine if your LO does not want it. But if it was me, I would opt to have it.
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