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.
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.
“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.
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.
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.