Follow
Share

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.

This question has been closed for answers. Ask a New Question.
I’m glad your aunt is at peace and that you are no longer going through that hard time. I do hope you’ve slowed to a trot now and have let the natural grieving process start working. It’s rough, but there are wonderful memories, once you reach the point of remembering those without tears,
Take care of yourself, and be kind to yourself during the process, you are important too.
Helpful Answer (1)
Report

Now I feel very bad. I haven't been on here for a while and didn't read the other notes. I am sorry for your loss . She is in a better place.
Helpful Answer (1)
Report

Ok, make it fun when you see her. Play her favorite music, bring her favorite food, talk with her, ask her childhood, what did she like the best? What about boyfriends, or the sneakiest thing you ever did? or the funnies prank you did to your friend. Where did she work, did she want to work, and how did she meet her hubby? How did he propose, were you surprised? happy> How did her mom and dad feel about it? Was it a big wedding? Make it fun, bring little jello pops or pudding, if she changes her mind you can crush 1/2 pill and let it glide down with tbe puddiing if she agrees. MORPHIINE for PAIN, ATIVAN for BRAIN pain, it separates the brain from the body sortof... kinds of what I saw with mom.
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.
Helpful Answer (1)
Report

I found out the hard way, hospice would not give mom the liquid morphine so it was up to me to end mom. Nurse told me if she feels bad, just crush a morphine pill like so and rub it in her checks. Every Hour. So I was up all night every hour crushing dry pills into her cheeks as she is spewing stuff out of nose and mouth. I called hopsice again, and my angel answered me. He came over around 7, a bit late, but very happy to see someone who knows what they are doing. He told be to grab the ativan in the ER BOX in frigerator... really? didn't know it was there.Anyway, he cleaned her up, turned her to her side to be most comfortable and the ativan calmed her brain so she could relax and drift to heaven. Hope you get a nice angel who knows what to do and how to do it. The first Gal didn't want to be there, so she turned away and said she's fine... A book Im reading now: The Wisdom OF FORGIVENESS. Its a good book and a good read. I highly suggest renting it att he library.

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..
Helpful Answer (1)
Report

Just read that your aunt passed, sorry for her suffering, & yours. Keeping busy has helped me also, but it gets lonely when the work is done. I hope we can each find something meaningful to occupy our talents, when the time is right. God bless.
Helpful Answer (2)
Report

It's good to honor your aunt by caring for her, but I would draw a line at the abusive behavior & start giving her low dose valium regardless. (Just 'taking the edge off' is not disrespecting her, but it's respecting yourself. (Adjust accordingly as situation requires). Best wishes.
Helpful Answer (2)
Report

It has been about a week since my aunt passed away and I was just now able to read all of the comments. First, I want to thank everyone for the praise, kind words, and helpful advice. I'd also like to address a couple of things that I think I didn't express well before.

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. ❤
Helpful Answer (5)
Report
Myownlife Jul 2019
Joy, I wish for you happiness and care for yourself. Keeping busy has always been my best way for coping with different difficulties in my life. I'm so sorry for the bad experiences with Hospice. I have only used them personally once in my life when my husband was terminal years ago. Unfortunately, we didn't get them in until the very end, because nurse or not, I just didn't know. The day they came in was the day he died, and all I remember of her was her being hyper, and hyper vigilant, and removing all the morphine suppositories ( I guess other meds... but I only remember that) and her being "paranoid/angry/yelling"... this was over 20 years ago. I now assume she must have thought my children and I would use them. I was so traumatized by losing my husband let alone her behavior... I never thought to call Hospice and report the bad experience. Looking back I even wonder if she may have taken them for herself.

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.
(1)
Report
Thank you so much for being an angel to your loved one until the day she crossed over. I sincerely hope someone will follow my wishes as you followed hers. The way I see it if one is not willing to follow the final wishes of a loved one do not accept the role of POA, caregiver, decision maker, etc. It is not ethically right to give them the exact opposite of what they have entrusted one to do. I am my husbands caregiver,,12 years of living with Parkinson's and although my heart may be breaking as he passes, if the time comes and he needs me to honor his final requests you can best believe I am going to no matter what my personal feelings/struggles with it may be. It is my last gift of love to him. May you find great comfort and peace in knowing you honored your aunt's request.
Helpful Answer (2)
Report
sunshinelife Aug 2019
This neice was wanting to have her on morphine...against her clear & specific written wishes.
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
(2)
Report
What a horrible situation you certainly have had more then your share of grueling caregiving. My mother passed away last week after a five-year battle with cancer she hated taking the chemo but It did help for a while. She wanted in home hospice which we were able to accomplish very well however she became bitter when I needed to give her medications she was a woman who didn’t even like to take aspirin. The one thing she wanted me to promise was to keep her pain-free. because we did not stay on top of the medication schedule she did experience an unfortunate amount of pain especially in her legs. What really helped the most I think was the Ativan the anti-anxiety medication it helped her to relax and be in a better peace with the whole situation. Then I was able to get the morphine at a regular level and she was comfortable and finalize the way after nearly a week of a coma like state. It was sweet relief when she took her last breath but I miss her so much then again I was really missing her for the past several months as she was not herself.
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
Helpful Answer (1)
Report

I would suggest that you seek out what's called a 'transitional counselor' to help you through this process. You can go through Elder Options Agency or if on military the VA.
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.
Helpful Answer (1)
Report

Sounds like she is near the end / with or without drugs it is never easy but you’re doing a most remarkable job - Bless you
Helpful Answer (1)
Report

Thank you for sharing your heartfelt story with us. I think you did the right thing, but I understand why you might feel some guilt over it. Guilt on its own doesn't mean you did anything wrong. It is just a feeling. Seek out supportive people and give yourself as much time to grieve as you need.
Helpful Answer (2)
Report

She has dictated her wishes and you must respect them as difficult as that is.
Helpful Answer (6)
Report

This is what I would want. You are an angel to see her through.

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.
Helpful Answer (5)
Report

I forgot to add that I am an RN and clinical ethicist who has been at the bedside working with many dying patients, clinicians, and families.
Helpful Answer (2)
Report
cherokeegrrl54 Jul 2019
Thank you for your wise words...
(1)
Report
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.
Helpful Answer (10)
Report

in answer to your question
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
Helpful Answer (6)
Report

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.
Helpful Answer (5)
Report

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.
Helpful Answer (6)
Report
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.
(6)
Report
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.
Helpful Answer (3)
Report
Isthisrealyreal Jul 2019
Her aunt passed Wednesday evening, July 18th
(0)
Report
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.
Helpful Answer (5)
Report
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.
(4)
Report
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.
Helpful Answer (8)
Report
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.
(0)
Report
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!
Helpful Answer (2)
Report

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.
Helpful Answer (8)
Report

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.
Helpful Answer (4)
Report

Countrymouse always has wise advice.

BetseyP
Helpful Answer (1)
Report
OkieGranny Jul 2019
She has a cool name, too. :-)
(1)
Report
I think you should still call the Hospice, just tell your aunt that it is the doctor’s nurse checking up on her.
Helpful Answer (0)
Report
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.
(4)
Report
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.
Helpful Answer (7)
Report
GinnyRuth Jul 2019
thinking the same thing
(0)
Report
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.
Helpful Answer (5)
Report

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.
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter