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I am working through different problems/issues with my grief. My Mom died in May - hospice in the hospital - CHF/decompensated cirrhosis from autoimmune hepatitis, cachexia, osteoporosis, stroke, etc. She was on a glucose IV drip since admittance due to hypoglycemia and liver disease.
She was admitted to the hospital on Saturday - the hospice decision was made Wednesday afternoon. I did not ask enough questions about the process. Mom had said her pain was 8/10, she could not take any suffering and was "ready to go". The GI doctor said without a feeding tube, she had a week or so to live. She did not want artificial hydration and nutrition per her advance directives, and the doctor said with ascites, etc., a feeding tube would cause more suffering and the life extension would be minimal.
The nurses started morphine while I went home to get clothes, etc. to stay with Mom. When I got back, she was semi-awake and able to talk, but not as alert as she had been before I left. The nurses said part was due to morphine, part to the dying process ( we ere told her ammonia levels, etc. were rising as her liver was failing, making her sleepy, lethargic, as well.) She stopped eating much a few days before her hospitalization and was having trouble swallowing. Anyway - by Thursday, she was seeing and talking to relatives who had passed, and went through several periods of restlessness - asking me to help her stand, sit, etc. continuously...after a while of this, she was given another medication to ease restlessness.
She passed on Tuesday - death rattle, changed breathing, etc. started early Monday morning. I fought with the hospice nurses because I wanted her to try to eat, drink and take some of her medicines...since she was on "comfort care", they did not want to - but I made such a commotion - they let me try to give her yogurt, ginger ale and her heart medication ... it did not go well...I got the pill down, but she almost choked - she pushed away the yogurt and got 1-2 sips of soda down. I kept the IV drip on the whole time, because that was the thing that had kept her from going into a coma-I felt like removing it was my killing her. The doctor said would not keep her alive, but it was ok as long as her body did not experience fluid overload or she had trouble breathing (she was on low dose oxygen).
Anyway, in hindsight, I am worried, that the morphine which made her sleepy/unresponsive, also prevented her from being able to eat, drink, etc. I worry that my not slowing it down, or demanding that she be more awake those last few days expedited her death by starvation, etc. As far as I can remember, the morphine started out being given about every 6 hours, then every 4, then 2-3 hours the last day or so... Being tiny ( 98 lbs) and having liver failure, I worry that this was excessive, and kept her mostly asleep from Thurs-Tuesday. I did not want her to suffer or be in pain as she was, but I did not want to expedite her death either. I worry that I did not tell them to slow/stop the morphine, or wait until actual death was closer before starting (they started w/o letting me know and said she was in pain and would suffer if the morphine was stopped). The nurses and I monitored her for signs of pain, etc.-if there was none, we skipped the dose, if she seemed in in pain, they administered. Please give me your input as to how "normal" this is, and if in fact, my Mom's death was premature due to her not being able to swallow, eat, drink or take her other medicines. I have a lot of anxiety and pain having been through the dying process with her - she passed peacefully in my arms the Tuesday after hospice started. Any help understanding if this process was normal would be appreciated...I worry I was not "aggressive" enough or allowed bad care, sped up her death, etc. by allowing the morphine.

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Your mom was allowed a natural death. If you are asking if morphine killed her, the answer is no. She was gravely ill. Morphine kept her comfortable; it also is used to make it easier for the patient to breathe. I think you let your own ideas of what was good for her - "yogurt, ginger ale and her heart medication" - briefly get in the way but it sounds like she had a peaceful death. And for that you can be grateful. May the memory of your mother be a blessing to you.
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Laura, it seems to me that you were hog-tied in your decision-making by poor medical advice from mom's PCP and COVID. Both were factors beyond your control and led you to assume that your mom was capable of improvement when she was not.

My mom went on hospice after a fall in her nursing home. It was clear to my brothers and me that mom (CHF, stroke, repaired broken hip) was declining and that the decline caused the fall and not the other way round.

But after the fall (broke her wrist) she never rallyed or made any attempts to get out of bed as she had done in the past. She started making horrible grimaces as though she was in dreadful physical or psychic pain. Due to aphasia from the stroke and the fact that she seemed only marginally lucid, we couldn't tell what was going on. We called in hospice and they started her on morphine which seemed to ease whatever was going on.

Hospice let her down gently. And we were at peace with her being let down gently.

In the end, if she died Friday afternoon or the next Tuesday or even the following month made no difference in the world. What made a difference to us is that mom didn't suffer one needless moment of pain or anxiety at the end of her journey. This was about HER, not about us.
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AlvaDeer Oct 5, 2020
Beautiful, your "This was about HER, not about us", Barb. I am so grateful she had hospice, and YOU.
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Dear "Laurabelle01,"

I know I responded to one of your previous posts and once again, I'm so sorry you are struggling so much with the grief thinking that somehow you would have been able to prevent it. It took me many years to get through my dad's death but, I faced it head on, sought all the help I could get by going to the hospice support groups, one-on-one counseling, went to the cemetery a lot and by reading books. I have a book about grieving the loss of a parent. If you want the information let me know and I will look for it (it's been packed due to moving).

I mean no disrespect when I say that we are not God. Everything is in His hands and in His timing. Nothing takes Him by surprise and He knew long ago how things would play out. Your hung up on the aspect of thinking you caused her to die - you didn't. What better way to have her pass away than to pass peacefully in your arms as hard as it was for you BUT, would have been a comfort for your mom. I know so many, many people who did not even get to be with their loved one when they passed away (especially during the COVID pandemic )my husband included. He feels awful about it but, he was extremely ill at the time. So there are many of us who feel terrible for one reason or another.

You did the best you could, you were with her during the whole process and it could be, you really didn't have a clear understanding of what happens to a person who is actively in the dying process. When you have a cold or the flu, you don't feel like eating but, have to force yourself and your body is still fully functional. How much more difficult would it be for someone to be "forced" to eat when their body cannot take food or drink in. You clearly loved your mother - many parents don't even get that from their grown children. Many die alone without someone advocating on their behalf. I truly feel bad that you are tormenting yourself. Even if you are going through counseling, until you reach the point of accepting that it was her time to leave this earth and that she let you know "she was ready to go," you will stay stuck indefinitely. Please don't do that to yourself.

There will always be some of us who think we didn't "do enough" or "wasn't aggressive enough" especially if it was the first death we've experienced and I don't know if that's your situation. Our bodies wear out, cars wear out, appliances wear out - everything wears out eventually that's the only point of using those as examples. Nothing or no one lasts forever.

I hope you will start giving yourself some mercy and grace just as God does.
You've been in my prayers and will continue to be - please take care of yourself now.


"To everything there is a season and a time for every purpose under heaven, a time to be born and a time to die; a time to plant and a time to uproot..."
Ecclesiastes 3:1
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Laurabelle01 Oct 5, 2020
Thank you so much for your kindness and empathy. I helped my Mom care for my Dad who died in 2015 from colon cancer ( horrible experience). She was his primary caregiver ; I have taken care of Mom since his death - and felt mostly satisfied and content with our decisions until I feel as if i dropped the ball with bad decisions those last 8 weeks or so - restorative therapy/isolation during COVID , etc...I feel I made a lot of care mistakes at the end that may have postponed the outcome. I wanted Mom home after the 30 day stint - but she kept wanting to stay and continue...as I had not seen how weak she was getting, etc., and how happy the therapy progress made her, I listened to her decisions...rather than just getting her and bringing her home for her final weeks...not being with her until the ER/hospice decision makes me very sad and regretful. You have shared great advice - perhaps I just need to keep trying, use all available resources, continue therapy, and be patient with the process --- if I could get some relief from the my unrelenting guilt ( which comes with a heavy dose of anxiety), I could just cry, mourn and grieve over losing my Mom. Thank you for your understanding, prayers and kindness.
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This may have been part of the process and needs to be considered: before she was given adequate pain relief in the form of morphine, your mother's pain would have kept her awake, and been severe enough to have woken her from sleep. She probably had a lot to catch up on.

Without all of the interventions - the intravenous fluid, for example - your mother might have died slightly sooner. Without the morphine, she would have died in severe distress.

Certainly you should not worry that you were not aggressive enough. I am glad for both of you that your mother died peacefully in your arms.
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Laura, have you made your peace with your brother?

I seem to recall that you two argued over your decision to keep your dear mom on IV fluids. He said that it was postponing the inevitable.

The over-riding purpose of Hospice is to make death, which ordinarily is painful, frightening (to both the patient and the loved ones) and the stuff of lifetime nightmares something that is calm, peaceful and which leaves one with the image of a loved one at peace with themselves and the universe.

Coming to terms with what your brother told you at the time might be what you need to be able to move on.
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Laurabelle01 Oct 5, 2020
no, we are taking if needed, but little more. He did not help with the funeral, the gravestone, or anything related to her death. He never returned to the hospital to see her that last week -even though I called and asked several times. I am sure he blames me for having her in PT/OT when she was probably in her last months. Originally, the plan was for her to come home, but I did not have enough help lined pup when she was deemed a 2 person assist at the last minute, so thus the decision on the 30 day extension in restorative care therapy while I lined up extra help for me.
Then, when I had everything lined up, Mom decided to stay another month to continue her therapy as she was starting to make progress. I regret that decision a great deal as she was not with me the last few weeks of her life. When I tried to convince her to come home -she refused - wanted to finish therapy and walk ....but the the liver failure occurred and that screwed everything up - winding her in the ER and then hospice.
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Laura,
I'm sorry for your loss, and more sorry for your obvious angst over how your mom's last days went.

People in hospice care (end stage, which mom was in) do not generally eat anything, nor do they want to. The swallowing reflex is poor and often they'll choke on even the smallest and smoothest of foods.

It sounds like you fought so hard to keep her here---kind of against her will. But in the end, she did die, and you are beating yourself up over it.

Being totally honest (and I do not mean to hurt your feelings) for what purpose were you trying so mightily to keep mom alive? I get it. Both my daddy and my FIL were in hospice at the end, and the natural desire is to keep them with us as long as possible--but if their choice is to exit this life with dignity and as quickly as possible--who are we to override those God-given rights?

Daddy was on whatever fluids he could swallow the last week of his life. That consisted of red popsicles. Anything else caused him to choke. The morphine eased his horrible pain and made sitting by his side calm and spiritual, instead of anxious and dreadful. We never once second guessed HIS decision to have hospice.

I'm not judging you. it sounds as if you made these decisions all alone.

BUT--don't dwell on it. Seems that you do believe in an afterlife (mom seeing departed relatives)..think about that and the glorious reunion with those people.

Take time to mourn, but don't beat yourself up over the 'coulda, shoulda, woulda's' that come with a death.

Your mom was going to pass, no matter what you did. If it gave her a couple more days and that makes you feel better, then take that and hold it close to your heart.

I hope you have some close friends, and family who will help you through this grieving period. I am sorry for your sadness..but this too, will pass.
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NobodyGetsIt Oct 5, 2020
Dear "Midkid58," -

Beautifully said and yes, this too shall pass as nothing lasts forever.
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Laura, I think you've been given good, wise, and insightful advice.    I'm not sure the issue now is really whether what you did or didn't do changed the decline, or the final outcome, but rather how to move forward.   

I'm not criticizing you; my mind has been stuck in neutral as well, and I know the frustration of repeatedly questioning yourself w/o being able to accept the conclusions.    It isn't easy to find a path out of this mental wilderness.

What has worked for me is to focus on the fact that suffering is no longer an issue, I did what I could at the time and made decisions I could.    I'm not sure that in these situations any one of us makes decisions we don't at some time question or regret.  

And I also wonder how much of that arises from lack of self confidence in a situation that's rare and fortunately isn't repeated on a regular basis.   It's a unique situation.   And I don't think it's unreasonable to question our actions.    But at some point we have to make a decision and move forward, as there's nothing that can be changed now.

So, focus on your other talents and assets, gradually move back into the living world and make plans for the next steps, and the rest of your life.    This isn't easy, and the guilt will still plague you, but doing something that builds confidence is I think part of the healing process, as you need to come to terms with yourself.

Becoming involved in charitable work and activities is also a big help, I think.   It can produce positive thoughts and make you feel better about yourself.  Sometimes I wonder if our own self perception is at the base of questioning whether we acted properly or not.

Think about it, and please tell us what your plans are now for the rest of your life.  Please?
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NobodyGetsIt Oct 5, 2020
Dear "GardenArtist,"

I really liked what you said - "What has worked for me is to focus on the fact that suffering is no longer an issue, I did what I could at the time and made decisions I could. I'm not sure that in these situations any one of us makes decisions we don't at some time question or regret."

I'm glad for you and that is something I want to remember when I go through this with my mom in probably the near future. Very good perspective!
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Laura, I'm going to ask you a tough question. Why do you think you had the right or the duty to override your mom's clearly expressed wishes?

She was in pain, was terminal and had no hope of recovery. She wished to pass peacefully.

In your shoes, I'd be asking myself why I was trying to play God. And why you tried to cause your mother additional suffering by attempting to feed her, give her medications that were not for her comfort and generally cause a commotion when the poor woman WANTED to die peacefully.

Maybe that IS actually what you are seeking forgiveness for.

I hope you avail yourself of Hospice's specialized grief counseling.

You've asked this question at least 3 times now. I am sorry for your loss and understand that 5 months is not at all a long time to be grieving.

But instead of berating yourself for something you had no control over, tell us something wonderful about your mom.
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Laurabelle01 Oct 5, 2020
I have been thinking that as well. She was in restorative care completing 2 months of PT/OT to get stronger/stand/transfer again...she was making good progress, but then declined quickly ( misdiagnosed autoimmune hepatitis and decompensated cirrhosis) . She finally agreed to the ER - and that is when her liver failure was diagnosed ( her PCP thought her symptoms were related to CHF and stomach bezoars). She was in extreme pain and weak - and based on the stage/pain/lack of tx. options, she requested hospice . Twice before , her PCP had thought it premature, but this time, it was definately appropriate. I have guilt about talking her out of hospice twice previously when she discussed it ( we discussed with her PCP), and for encouraging her to try 30 days extra PT/OT in restorative care to get stronger as a one person assist when she was discharged from the first rehab stint. In hindsight, she should have just come home - being tired, fragile and not feeling great. She enjoyed therapy a lot, and made major strides( stood up and took some steps with the walker for the first time in over a year...) but she got sick and was hospitalized before agreeing to stop therapy and come home...( she decided to stay an extra month to continue her progress despite my asking her to come home ( COVID time-could not see her - she said she'd come home if there were cases there - none ever did)...however, then she go sick quickly and wound up in the ER - liver failure/hospice ... I have a lot of regret for talking her of hospice sooner and allowing a longer period of suffering as well as her being in rehab during COVID and not making her come home with me earlier. Both are sore sticking points in my grief that are sources of great pain and regret.
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I am sorry for your loss and sorry that you are now second guessing yourself about mom's care. You did nothing wrong. Everything you did was in the best interest of your mom and her death journey. People do stop eating and drinking when death is nearing. That's the way God intended it to be. My husband didn't eat for 41 days and had no sips of his drinks for about 25 days before he recently passed away in Sept. I had known from my research that him not wanting food or drink was part of the process. Now of course in my case, I certainly didn't expect him to go that long without any nourishment and neither did hospice. But everyone's dying process is different, yet with similarities. My husband did go through all the stages of dying including extreme pain(that Hospice couldn't get under control), agitation, confusion etc., and I was there the whole time. It was excruciating to watch and witness. It's hard for me to get that part out of my brain as he's only been dead 3 weeks today, but I'm hoping in time, I will, and only remember the sweet and good things about him.
That is my prayer for you, that you will only remember the good things and times about and with your mom, and that you will once and for all have peace with her passing. May God bless you and keep you.
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Like Cali, Laurabelle, I am left really not knowing what to say to you. People can only give you the advice they have to give you, and what use you make of it is up to you.
You had excellent hospice, I am so thankful you kept your mother out of pain, for she was dying and another week of torment with the withholding of pain meds, with trying to feed her things that would choke her and give her aspiration pneumonia--none of these things would have appreciably changed your mother's outcome, except to make her suffering more acute. Please access your Hospice's grief counseling; I know you said you are in counseling, but clearly it is not as yet helping you; access whatever help is available.
Another answer for you in your last post a day or so ago was that you were doing good work. And it was suggested that with your therapy ongoing you allow yourself whatever time you need to mourn. It has been five months. It was jplegacy, I believe, who suggested that it might in fact be years; for some it does.
Meanwhile I hope that you continue to live.
You must have family and friends. You cannot now change ANYTHING that has happened to your Mom. She is at peace. But you CAN change what you are doing to those who love you. Will it take a tremendous effort to leave off your mourning some days? To be with your family in a meaningful and giving way? Perhaps. But I think it may also help you to heal. The best way to get out of our own heads, our own circular thinking, is to give to OTHERS. There are many hospice patients and families who could benefit from your loving care as a volunteer. Often when we do for others it allows us to leave the smallness of our own world, and it broadens our vision out so we can see others in need. Oddly enough this often helps US as a side effect.
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I walked through this just a couple of months ago. My dad had end stage CHF and chose hospice. We started morphine as it both eases the shortness of breath in CHF patients and in higher doses can help with pain relief. It doesn’t hasten death unless a person overdoses on it. There was zero opportunity for this with my dad as hospice both told me how much to administer and had me keep a log of what was given. Even the hospice nurse had to log how much she gave, and after he died, she was required to destroy what remained in front of us. Overdose is a hard act to pull off in the days of continuous documentation and monitoring. What your mother received was a way to pass in peace and comfort. Her body let everyone know that eating wasn’t important anymore, her meds weren’t needed any longer, she was ready to be at peace. Now I wish you comfort in the knowledge that she’s not suffering any longer and you did well seeing her through
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My dad didn't eat for the last two weeks of his life because everything felt "weird" in his mouth. That's the normal part of shutting down. He didn't drink anything for at least the last 24 hours.

The nurses were doing what the nurse did for my dad, who had liver cancer. She didn't give him a dose of morphine every four or six hours, she gave him a couple of drops every half hour in order to keep the level in his system consistent rather than have it go up, then wear off. As a result, he was never in pain, his agitation was eliminated, and he died peacefully.

I see absolutely nothing wrong with what the nurses did. You trying to push medications she no longer needed or food and drink she couldn't take it would not have stopped or put off the dying process. Nature will take its course in the end no matter how hard we try to fight it.
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NobodyGetsIt Oct 5, 2020
"MJ1929,"

Thank you for sharing your experience - "nature will take its course in the end no matter how hard we try to fight it" - so true and well said!
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Morphine does not kill a person; disease kills a person. Hospice is not in the business of 'overdosing' a person with morphine either, and they were not administering it to your mother if she was not in pain, as you said yourself.

When the human body is shutting down, hunger vanishes. There is no desire to eat or drink; that does not come about due to 'morphine' but due to the body shutting down and preparing to die.

Here is a link to 'demystifying' the death process:

https://www.aurorahealthcare.org/patients-visitors/blog/what-happens-as-we-die-we-demystify-the-process

And here is another link which is a guide to understanding the end of life signs and symptoms:

https://www.crossroadshospice.com/hospice-resources/end-of-life-signs/

Hospice goes through the death process with their patients again and again. They don't do anything to hasten the process, nor do they rely on the family members of the patient to do anything............they allow nature to take it's course, and only intervene with pain meds as needed for comfort care.

THAT is what you need to understand so you can allow yourself to heal. Read the articles I linked, and anything else you can get your hands on, in an effort to let go of the situation which you had NO control over in the first place. You're going to HAVE to, if you want to get past this scenario that's going to ruin YOUR life, which is not what your mother wants. Think of how upset SHE is now, knowing that she was ready to go, but you weren't ready to say goodbye. And that you're allowing your life to be wrecked now as a result. In honor of HER, allow yourself to heal.
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NobodyGetsIt Oct 5, 2020
"lealonnie1,"

Well said and you gave "Laurabelle01" things in which to reflect upon as well as good resources.
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Laura. My deepest sympathies.

My mom is in hospice care for end stage CHF. I just had to start her on morphine today. She was so agitated and in distress with her labored breathing. She really hasn't eaten since Thursday. Hasn't drank anything much more than a sip or 2 of water. I strongly suspect we are near the end of her Earthly journey.
You did nothing wrong. You made all the right decisions. You gave your mom a peaceful, pain free passing. It's the last gift we can give to the people we love. Be at peace. You love your mom, and she loves you. She knows you love her and did what was best for her, rather than keep her longer, in pain, to delay your having to say farewell.
Hugs and prayers, my friend.
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NobodyGetsIt Oct 5, 2020
Dear "notgoodenough,"

I'm sorry to hear that you are encountering what may be your mom's final moments of her earthly journey. You will be in my thoughts and prayers as well. May God give you strength to face what lies ahead.

I'm glad your mom has you during this time in her life - take care and hugs to you.
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Hospice provides counseling, have you considered making use of that benefit? I believe it was suggested on one of your other posts. I’m not sure what else we can say to you, you didn’t cause your mother’s premature death, she had stopped eating prior to her hospitalization. Your mother had no quality life and said she was ready to go. You allowed her to pass quietly and comfortably. The alternative to that was to prolong the inevitable & allow her to suffer more.

https://www.agingcare.com/questions/does-anyone-have-advice-on-how-i-can-learn-to-forgive-myself-and-find-mental-peace-462003.htm

https://www.agingcare.com/questions/i-feel-responsible-for-moms-stroke-heart-attack-please-give-me-some-advice-on-how-to-forgive-myself-459676.htm

https://www.agingcare.com/questions/how-do-i-cope-with-regret-for-denying-that-my-mom-was-dying-459665.htm
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