Palliative care: My horrible experience...when mother died.

Tiger,

I am so glad that you respected your mom’s wishes and didn’t try to override them. You are a good daughter to honor her last wishes.

I know someone who had medical power of attorney and did override her father’s wishes. It wasn’t the best option for her dad. You know how much longer he lived? Only two hours. Unfortunately, two hours of agony for him.

She instantly regretted having put him through additional suffering needlessly, both physically and emotionally. Of course, she didn’t want any additional suffering. She wished she had allowed her father to die with dignity.

He was ready to go. He did not want his life prolonged to be around for a short while longer.

I know that you would not have wanted any more suffering than she was experiencing already. You can be at peace knowing that she died as she wished.

I read through the responses and found them heartfelt and informative.

First of all grief is terrible and while I have already offered condolences I will tell you again that I am so sorry. Grief can hit us like large waves in the ocean. Then the waters calm for a bit and before you know it another wave comes.

My brother had hospice. Overall the care was very good. Does the care vary from place to place? Yes, it can. I’m sorry that you weren’t pleased with your mom’s care.

I was with my brother up until the second before he died. It’s difficult. There are mixed emotions. He was unconscious by that time. A part of me just wanted it to be over. Another part is selfish and we want more time for them to live. Then I realized, he wasn’t living but merely existing.

I asked the nurse if I should speak to him. She said, “Yes, I believe he can hear even if unconscious.” I was puzzled and asked her why she believed that. She said that she saw people come out of a coma and recall conversations. So, I did talk to him. I told him that I forgave him. We had our issues. I knew he forgave me for my offenses to him. I told him I loved him. I knew he loved me even though we were very different.

Your mom knew you cared. Don’t ever doubt that. She cared too. Sometimes people can’t express their feelings for various reasons.

It’s sad. It was her time. It’s hard watching people die. The hospice nurse told me that my brother was in a different realm and I believe her. As a nurse she knows a lot more about death than I do. So, I am taking her at her word.

If I am in hospice before my death I will ask for no prolonging of life, no feeding tubes, resuscitations, and drugs to keep me comfortable. My kids know this and they have agreed to respect my wishes like you did with your mom.

Be at peace.

That's funny😁. It seems like those ingredients are odd to combine, but it must be 😋 delicious! The Brits did it first, didn't they? I'd gladly try some, but wudn't be able to make it myself. Very interesting tho, thanks Gershun:)

I looked it up. Mincemeat is a combination chopped dried fruit, distilled spirits & spices & sometimes beef suet. I never had a clue. I just ate it when mom made it and never ever asked what it was. LOL

That's so funny Gershun! 😁 (I really don't know firsthand what mincemeat is, but I'll take your word for it that they're delicious:) And no worries...about the tart part...👍 hee hee!
You're adorable friend.

Aw thank-you Tiger. I'm just stating the truth (as I know it)

You are never mincemeat! Besides, mincemeat tarts are great! My mom used to make great ones. And no I'm not calling you a tart.

Ah, think I'll just shut up now before I totally insert my foot into my mouth.

Thank you Gershun, I know you suffered terribly, & I believe that sharing helps you expel the disturbing memories. Indeed I believe every word you say, & there's nothing stupid about it. (P.S. before you showed up here on his thread, I was mincemeat!) God bless you friend, I owe you.💟

Zappers.....wow.....you picked a real doozie for your first comment ever on this website. In the future, you may want to think about offering supportive and kind comments instead of trying to rub salt in someone's open wound. SMH.

I think watching someone die does something to a person. Especially if it's someone who you loved deeply. I know that I went through some very rough moments sitting by my mom's bedside. I started to hallucinate a bit I think. Just sitting there staring at her face for hours on end I started to see my sister's faces in her face, my brothers, my own. And the sounds that were coming out of her. Almost satanic. One night when I was laying there on the chair in the room with the plan of spending the night there I truly thought I might crack. This is going to sound stupid but I felt like God and the Devil were having some kind of warfare over my mom's soul. Yes, stupid I know.

The point I'm trying to make by telling this is I don't think it's natural to watch someone die. I think it's a perfect equation to make a person who is already in a very emotional state consider all sorts of strange things. Little hurts turn into big issues.

I think it was day five or six when I was carrying on my vigil by my mom's bed that a doctor wandered in. He saw that I was holding my mom's hand and he said "you know she doesn't know you are here anymore" I said I know, I'm just doing this for me now. He put his hand gently on my shoulder and left.

Tiger, any slights you may have felt from your mom at that point were escalated by the emotion of the situation. I truly feel that. A situation like that is bound to cause misunderstandings of a look, a feeling that you are being ignored etc. etc.
Add to that the anger with an Asswipe doctor, you are bound to be left feeling alone with mixed emotions that take forever to resolve.

Trust me, I understand.

Perhaps your mother's stoicism was her way of coping with facing death and facing you would have made hope an option. It's never really our choice and it's in god's hands in the end. I understand what you mean about some doctor's bedside manners. Please send your complaint to the hospital.

Hi Countrymouse, thanks 4ur kindness... It didn't come across well in my original statement, but mother was fully conscious with good vitals, after her stroke in June. It upset me that she wasn't offered any second opinion, or any time to talk to me or a physical therapist, before having her sign papers. Dr simply told her that she'd have no quality of life, but I knew how well she always did in rehab. He didn't know her as a person, just an expense, who had come in to the hosp a few times recently. I know it scared her to hear Dr emphasize paralysis & dysphagia after the stroke, but there was no therapist called in to give her their prognosis. (P.T. can do wonders when a patient cooperates, as mother proved 2do many times already). It was very rushed & one sided for mother, that's unfair to her &I. Of course that made me feel badly, cuz she never said to me, that she wanted to do this. If she would have said so, & we cud properly have that moment, I wudnt complain. I see many people here interpret my feelings incorrectly, but thanks for realizing that it takes time to 'look back' & realize that things weren't right. It takes time cuz it was a shocking experience. Thanks again CM👍

Tiger55 is upset. How is it necessary to make her feel worse?

Tiger, I'm sorry for how you're feeling about what happened, it just doesn't seem that anyone can make you feel better about it, at least for now. When did this happen?

So your Mom's final wishes were carried out exactly as she wanted and you're upset you didnt get a big Hollywood bedside goodbye?

Grow up

I think What tiger55 is trying to say is she feels robbed of the fact her mother did not acknowledge her at the end. No I love you, no thank you for everything. Nothing. So perhaps if she had just a little more time, maybe things would have turned out differently. Maybe her mother would have said loving things to her. When my father died of cancer he did give me a hug and kiss and I told him I loved him and he did the same. I am so sorry your mother did not do this for you and that’s why it hurts so much. I am really really sorry.

Aloha Tiger55.
As for your mom not saying thank you for all you did or I love you...could she had been given a large dose or doses  of morphine (THEIR drug of choice)?  I wasn't there so I'm not sure that when you say she was aware, if she was able to talk.  As for the many BULLYING doctors out there, shame on them.  I actually go to websites that allow you to review physicians and let them know they are BULLIES.  In Hawaii, if you are an inpatient you get a hospitalist.  Not an Attending.  So you have no choices unless you wait for another hospitalist that comes on after 3-4 days.  They rotate.  They just push you into something.  Dad got pushed into Hospice.  Regrets regrets.....I don't really care what others say about hospice.  This one killed dad.  Also denied him services that are paid for by Medicare.

It's really hard grieving. It's even harder when you feel an injustice was done in some way. I strongly advise people to really examine their hearts to make sure it's within you to sit and watch someone who you love more than life itself die slowly in front of you. It has permanently changed the person I am. I don't know that I could do it again. What doesn't kill you sometimes doesn't make you stronger in my opinion.

Tiger, please try to let the memories of your mom in hospital fade to a background place in your mind. I know I have had to do that. It's not easy and sometimes a certain smell or sound will trigger it but you can push it away. I know I sometimes let the feelings take over and have a good bawl. That sustains me for a little while until the next time. But try to not harbor these feelings of resentment. They only hurt you.

Tiger,
Are you going "mean" on us? I hope not, because we all love you.
As to brief? I tried it once. I don't like it. But I did re-read, and you are correct. I could have eliminated a lot. My partner is always trying to get me to do this. Now there are TWO of you.
It's as I always say here, it is lots easier to be angry than to grieve. If it helps you, I am glad.
About as brief as I can get, woman. Hugs out to you.

Tacy, not my experience of childbirth the first time, but the second time I thought I just had cramps from overeating, and barely made it in to give birth!
Al

So, Tacy; NOT my experience if my 3 labors!! Not info for this thread, though. (((Hugs))))).

Tacy, let me just say that I was terrified of being there for my mom's passing.

I WAS there, and with the help of Hospice, my SIL and the incredible folks here (I was texting in real time as mom was dying: I could NOT have done without the support I got) I made it to the other side. It was not pretty, but then neither is labor, you know?

AlvaDeer: I've saved this thread because your comments are priceless and profound.

Tiger: I know you're suffering, but you can be kinder to people who are trying to help you (and others). I hope you're able to find grief counseling.

You really cud say things more briefly AlvaDeer, (I mean...just try it sometime). & 'Captain', I hardly ever understand what you are saying...not sure why... (hope this info is useful to u going forward).

Tiger,
As to your telling me that:
"people fight harder these days for the lives of their dogs"
I certainly hope NOT.
I lost, as you know, my last little elder dog two weeks ago last Saturday. I mourn her more than the others for the simple fact that, at 77 and 79 respectively my partner and I will now not get other animals to foist upon our poor kids when we die. So it is the "selfish suffering" thing. She herself is at peace, having died as gently and peacefully as she lived.
My little dog was well until the 10 days before she died. Then in little pain, but off all food, and sleeping lots; finally bleeding from her bowel. Best guess of vet was B cell Lymphoma, acute, of the gut. He said that we could hospice her, and possibly have a month to 5 months more with steroids. He said we could treat aggressively, not recommended.
That was not something that poor this sweet little 16 year old dog would ever deserve. Why should she be tortured and tormented because WE are too SELFISH to understand that all things die, that she had a good life, that there was nothing ahead for her but torture and torment.
We had her PTS painlessly and gently at home with one injection. I wish we could do as much for ourselves. No pain. No fear. No suffering. She is at peace and left this life as gently and as happily loved as she lived it all her life.
Vets have the highest suicide rate in this nation. People like to think that is because they see suffering. I think not. I believe they have the highest rate because they have access to the best instant relief from life that exists on this earth. I look forward to being able to implement the right to die that was hard won in my state. I will happily take that small cocktail and be on my way, where we ALL will go, man or beast. And where every soul on earth who passed before us has journeyed as well.
Don't be "surprised at" me. I fear death not at all. Suffering a long slow slide of loss after loss, pain after pain to satisfy someone who cannot let me go? Feeling that way would be what would surprise anyone who truly knows me.

i think tiger is fussing about being steamrolled into submission . the medical industry ( imo ) is a little like churches . full of great people but also a magnet for inept fktards with the finesse of a tasmanian devil .

Why are you saying your mom was "killed"......as if she was murdered or something? And why do you feel the doctor bullied you into palliative care....were these not your mother's wishes being followed? You say modern medicine snuffed her out when it got too expensive, yet again, was palliative care not her express wishes being granted? Could she have asked for a different course of action to be taken at any point, had she wanted to? Not many people would choose to fight through a major stroke involving paralysis, myself included, so I feel like you did the right thing by NOT overriding her wishes, but honoring them instead. It wasn't about not having guts, but about having great courage instead.

Death is a terrible thing to witness. Reliving a loved ones death over and over again is cruelty that nobody should ever impose on themselves. Ever. Try to remember your mother in a happy moment, when she was laughing or smiling, or enjoying life in some way. Search your memory for one of those moments to hold onto, my friend, rather than to continue torturing yourself with her final days on Earth. You were a wonderful daughter, whether she was able to acknowledge that fact or not; whether she was able to properly thank you for all you'd done, or leave you with one small gesture of loving gratitude that you should have, but did not receive.

You did all you could have done, and she knew that. She just couldn't express it to you, for whatever reason. That was HER shortcoming rather than something you'd done wrong.

My father didn't say one single word to me during the nearly 2 week period he was actively dying with hospice. He did speak with others, but not me, for some reason. I choose to believe he was unable to bring himself to speak to me for fear he'd break down and cry. Rather than to think he was angry with me or didn't love me.

Please don't beat yourself up anymore thinking your mom was killed, or you "should have" done things differently. Now it's YOUR turn to live, free and clear of guilt, and with the knowledge that you did your very best for her. And that IS enough.

Thank you Gershun, you definitely stated it better than I. Very courageous & thanks again.💟

i know a young doc graduate who destroys every machine he gets near , so , yea , some of them dont know anything but the drivel theyve read and tested on .

Okay, I need to interject something here. While I don't believe my mom was "murdered" I was coerced into starting her on comfort care before I was ready. I'd been up all the previous night by my mom's side. She was unconscious, had been since being admitted to hospital two days previous. She had an M R I done which showed no signs of stroke, brain bleed or any such thing. She was scheduled for another that day. The doctor who came strutting in at 7:30 that am. was so pompous and full of himself, adjusting his white coat and basically being all full of himself. He made me feel guilty for wanting to send my mom for another M R I, pulled her eyelids back really roughly, threw the blanket off of her and said "look at her, there's no life there, hear her breathing, that's a death rattle, if I send her upstairs for another M R I in her condition they'll think I've lost my mind" What way is that to talk to a grieving relative? I told him I'd need to think about it. I phoned my useless brother who I woke up and he just mumbled into the phone, "yes, start her on comfort care" No thought about it at all. I think he just wanted to go back to sleep. So there I was, by myself having to pronounce my mom dead basically without any help and before I was ready to.

So, in Tiger's defense, she could have been coerced to put her mom on comfort care. I know I was. Yes, ultimately it was the right decision but I would have liked to have time to process it more and not feel I was being guilt driven into the decision.

i agree alva with the ' personal journey ' theory of yours . i know i would prefer to be left alone - not a spectacle .

There should be a mandatory wait period legally enforced before any 'certain death option' can begin being executed. Not right that such a serious event should be rushed into, like it was for me & others here. (Without any second opinion, or preparing of family as to what actually transpires during such a process either). I'm surprised at you Alva, people fight more these days to preserve the life of their dogs.

Killing someone and allowing someone to die per their own wishes is not, in my own mind as a nurse or as a human, the same thing. Your mother made her wishes clear. Her wishes are my own. There are several days of extreme discomfort as confusion sets in with the withdrawal of food and fluid. This agitation is most always gone by day 5 or 6, most commonly seen on day 3 or so. I have requested that hospice provide then enough medication to put me out of the realm of consciousness and dreaming. Will my death be possibly painful for my family to see? Yes. It may be. Toxins build in the system. Without suction and control of secretions the airway can be tricky with mucus and such, and suctioning often making it worse. The dying process is often not easy to see and not easy to make pretty for those standing by. But, as I said, as a nurse I have seen many many people die. And my own wishes and WRITTEN statements are exactly what your mother wished for herself.
I am so sorry it was so painful to see. I am so sorry there is so much in your own mind unsettled, because none of this can now be changed. We all die. I don't wish to live impaired, failing, with no upside. I don't wish to "fight through". I will tell you also that many if not MOST patients do "turn their faces to the wall" in the sense that they become completely uninterested in family at all. It's enough. They have had to concern themselves all their lives with comforting the family. Now they are on a private journey that doesn't any longer concern family in any way. It was one of the most uncomfortable things for families at the end.
I am an advocate of palliative care and will be until I am gone.
I am an advocate of hospice and will be until I am gone.
That's me. And that was also your Mom.
I know you are having a hard time periodically with this, Tiger, and I am so sorry. Your Mom wouldn't want that for you. No one wants that for you. You mother is not with us any more. But you are. You owe it to yourself to move on and through. No one can tell you how long the grieving process will go on. It is as individual as a fingerprint, and so many things factor in.
Wishing you healing, Tiger. It is all anyone wants for you.
But it terrifies me to think that others having to make these choices would not choose palliative and hospice over the torture that life can become for our elders.

my grandma died when i was about 9 years old . for the next 50 years both my parents believed she was starved to death by incompetent NH staff . my grandma was ravaged by cancers thruout her body and was in much pain and distress . this might have been a time before terminal patients were ' faded out ' with morphine . ive since learned that starvation is a pretty humane and painless way to die .
the dying process is well understood by medicine and it isnt reversible . pouring on the morphine until they ' forget ' to inhale is a very loving thing to do . the patient is floating 9 miles high and likely has no desire to return to that failed body .