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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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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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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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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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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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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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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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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You are doing an incredible job. My suggestion is that you talk with a palliative care specialist or hospice nurse at your local hospital to support you. I am sorry that your Aunt could not understand that you need support too. She sounds like she is close to dying and dehydration is one of the most comfortable ways to die as long as there is frequent mouth care to relieve the dryness. She may not need any morphine unless her she looks like she is struggling to breathe. Then I might put a few drops under her tongue. She does not know how difficult it can be to die for her as well the caregivers. She may thank you if she is alert enough. You try and respect her wishes as much as possible but not to the point of suffering for both of you. I admire your courage and commitment. Please get support for yourself during this difficult time and afterward as you grieve and relive this experience.
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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.
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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