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.
Take care of yourself, and be kind to yourself during the process, you are important too.
REad to her. Readers Digest or magazine with small articles, not too long. Church? have the minister,rabi, or whomever come in and talk a bit.They are hired with hospice to do that too.They will talk with her and you, and try to ease the tension in the room.
Question did hospice offer you morphine and ativan? Liquid or pill? Maybe you mom doesn't want to be pricked.maybe you can give morphie and ativan in a pudding spoon or something.Talk to your hopice people. Mom suffered, and she suffered worse because that nurse didn't want to stick around. Im really an big authority on this... I didn't even know that lady. I asked where my team was. When the time gets closer you will want YOUR HOSPICE TEAM at your beck and call because they know YOU AND YOUR MOM. You don't have to be drugged out of your gourd at hospital.. HOspice will set up in your home so Mom can be at mom peacefully - hopefully..
Regarding Hospice care: My aunt first became ill in 2014. In May of 2016 she was sent home from the hospital on Hospice care. We were provided supplies, oxygen, etc. to make her comfortable as she was only expected to live a few months. However, we live near a major city and our Hospice is severely under staffed. Our head nurse was aggressive, belligerent, and pressured my Aunt - who was alert, not having trouble breathing, and not in pain - to take large doses of morphine and Atavan. She refused. The nurse became verbally abusive toward both of us and threatened to take away the oxygen concentrator. Fortunately, I had quietly arranged private payment the day before and we kept it. It was just a bad experience throughout. That, combined with my aunt's fear of strangers due to a violent home invasion thirty years prior, caused her to be horribly fearful of strangers in the house and I didn't want her traumatized. My comments were in no way a blanket criticism of Hospice, however. I think they have their time and place.
A second issue throughout our journey was my complete lack of any medical training whatsoever. Although I had cared for my Dad throughout a series of strokes that began when I was 21 and ended with his death ten years later, and cared for my Mom during her cancer until she passed when I was 38, I had severely overestimated my ability to learn new things. I made mistakes. That's why I give myself an A for tenacity and a B for everything else. I learned as I went, watching You Tube videos, receiving instruction from a nurse friend, and reading online. I jokingly called myself Dr. Google. I don't regret doing this for her. But I wouldn't do it again without some proper training.
The day after she died I hit the ground running, preparing to execute her will. I'm still going. It keeps me from crying too much because I miss her terribly but am so grateful she's at peace. Thank you again for all the responses, they were comforting to read this morning. Wishing you all love, faith, strength, and support on your own journeys. ❤
But now, stay busy, focused and then allow yourself some time to grieve and then busy yourself again as it takes a long time to completely recover.
Lucky for Aunty that she had the foresight to draw up a legal DNA & other documentation...clearly the niece was hesitant to go against it...for fear of legal ramifications.
Just as I thought, niece is the executor of the will...you can do the math
I always expect and hope for the best from people...and know that there are altruistic people...though few & far between
Do learn from this and make sure you record ALL your requirements, wishes legally. And ensure that whoever is going to be involved in the care of your husband...and yourself....when it comes time to cross over...will do exactly what YOU request....Not park you in a hospice on narcotics when they grow tired of you
Even if he can't express it well, I am certain your husband knows everything you do for him, and is deeply grateful
Although we want the people/soul we love to stay close with us forever...there comes a time when their body is a prison for them...and they are holding on and suffering terribley....just for us
I know its okay to let them go...tell them we will be okay...for death is but a thin veil. And sooner or later, we will be together again
"love is never separated from itself for long"
Lord Byron
Stay strong! There is an end in sight and you will have your freedom back soon knowing you did your very best. Blessings to you both !
katlew23
I never heard of no morphine drip so that's why I suggested that type of counselor, my counselor has been through a lot if what we're going through and if she doesn't gave an answer she'll try to point you in the correct pathway. She will also help you with the transition/grieving process.
I hope this helps, other than the non morphine drip we are going through similar things. If you are a church goer or believe in a higher power seek them out for support believe me it helps.
Krep us posted.
Follow all her directions. If she changes her mind, follow her new directions.
How amazing it is that you give her both choice, then respect that choice.
Firstly, if you truly care for your Aunt as much as you describe, you will respect the decisions she made....verbally with you, and legally...to make sure her directives are followed.
Why is it important for you to have her receive Morphine?
She has made it clear repeatedly:
" that she is not in pain and doesn't want medications".
She is a Wise woman.
At her age she came into the world without various medications being given to her Mother (& her, via circulation)
And death was accepted, also on its own terms. No medications.
It has only been in the last 30years that morphine has been given to elderly patients close to passing over. Some with pain, & some without
Your Aunt has enough pride to choose to pass across the same way...
Drug free.
Morphine has many side effects...not the least of which is dysphoria (feeling badly)as well as constipation, nausea dry mouth & cramping. (80% of patients in a comprehensive medical suffered the constipation & 95%dry mouth)..
Think how depressed one feels when constipated, and suffering a dry mouth that cannot be relieved
And the total daily morphine dose had no impact on side effect patterns.
Translation: people Always suffer these side effects regardless of how small the dosage of morphine.
All Natural suggestions (many central benefits, & no side effects)
a. Dr Bachs Rescue Remedy.
Take a few drops every hour on the pulse points where one applies perfume. Do the same for yourself also . And add 10 to 15 drops to each glass of fluid
This product has been around over 85 years now & is available in big pharmacies, markets & amazon, eBay etc
b. Potassium Broth.
In all illnesses there is a lack of potassium in the body. Potassium is "the great alkalizer of acids" in the body.
It is the acids that cause irritation, which leads to inflammation and therefore pain
A potassium rich broth will soothe the nerves, calm the digestive system. boost the immune system and lift the spirits
3 med/lge red organic potatoes, 1 organic carrot, 1 stick celery, 1/2 bunch parsley
Cut the peel from washed potatoes with a knife about 1 to 11/2" thick
Cut carrots, celery, parsley.
Put all in a medium sized pot. PUT THE WHITE OF THE POTATOES IN THE TRASH! IT IS THE MOST ACIDIC PART OF THE POTATO
Cover the veg with DISTILLED WATER..only.....
Bring to the boil. Turn down and simmer 20mins w lid on.
Let sit 20mins
Strain off & keep the vegetable water. Throw away the peels & veg
Serve warm . Perhaps she will be able to sip it through a straw
If not you can freeze it & give it to her as a popsicle (rather than the commercial sugary type of popsicle)
This most simple of broths WILL improve her overall well being
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.
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.
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.
BetseyP
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.