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So mom's end of life is finally here, and I was not prepared for the horror I just experienced tonight (which was the terminal agitation/restlessness, crying for the police, calling people names, almost an exorcist type voice, then begging for help, then repeting "I'm scared"). Hospice just started morphine and Ativan/comfort kit and she is finally sleeping, after I basically hypnotized her with a steady stream of words about her favorite vacation spot (the Adirondacks) and describing to her while holding her hand and playing calming music. I'm not leaving tonight or any night until death, I just can't. I did the same for my dad and I will for her. I have been through 2 deaths before but not this. What a horror (and I won't describe how I feel about the fact that we can euthanize dogs in pain, but we can't give dying adults in agony enough morphine because it will "supress the breathing and kill them.")


What are other people's experiences? How did you help and does it pass? I'm so grateful to the support this forum has given in the past; I honestly think I just need some kind words. I didn't expect it to end this way, just today we were laughing about things. Now she's crying out in fear anger and pain. I'm hoping Ativan and morphine will kick in. It's so heartbreaking.

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Going through helpful posts now that I'm caring for my dad at end of life, and this one is so helpful (as are your updates). Thank you for sharing it. This came on suddenly with my dad today, too. All was well this morning, then after a few hours he starting showing up as disoriented...not realizing he is in his own home, suddenly not sure how to use the TV remote, dentures in/out/in/out ("These are not my teeth!"), and seeing strangers next to him and getting very annoyed (yeah, not the loved ones coming to guide him). Hospice nurse gave him some Lorazepam when he stopped by and thinks what's happening is a combo of progression and side effect of the Tylenol PM Dad took this morning to try and sleep (which has NOT happened). Said it may abate on its own or this may be a new normal for us. The Tylenol is such a seemingly innocuous med, but it has always left Dad a little "off" the next day. This is 10x. I've barely been still for 10mins at a stretch today either as a result. Overnight caregiver comes at 7, which will give me a chance to take a short break out of the house before I come back to stay close for the night.

One positive is Dad asked me today how much time the nurse says he has. I was honest and relayed the "days to weeks, depending on his body" estimate they have recently given me. He accepted that and said himself he feels like something changed today and it could be just days away. I was sad to agree with him, but as of today, I do. It is comforting to me that he isn't afraid. I just hope this agitated, confused state isn't 24/7 to the end now. Will do all I can to help him avoid that.

UGH. This is legit the hardest thing I have ever experienced. Even harder, in some ways, than caring for my late mother through her 9-month journey with cancer. Perhaps because it was easier to point to the cancer as the reason she died? Dad's is more decline and frailty at this point (and yes, some underlying issues). Both of my parents have gotten to make their choice in the end to die at home on their terms though, and for that, I am grateful.
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Msblcb Feb 7, 2024
I agree. We think my mom had vascular dementia and a low injection fraction so we are not really sure what she died of (the dementia or heart issues). It is not easy when the decline is “failure to thrive”, one of my least favorite phrases.

You are in my prayers!
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((hugs))
no words needed
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Thank You everyone for your kind words. I followed many of you and taken your experience to heart.
I'm So glad I did this. I don't feel I need to mourn, I feel like I've swept out the dark corners of my childhood, I was there for her every step of the way and yes we fought and yes we argued and I even told her what a pain in the butt she was and I didn't want to hear her complain anymore... But we are human and I did the best I could and so did she.
Thank You all for your kind words. Sadly this is a dark journey no matter what anybody likes to say but ...there is light at the end of the tunnel... It just was in my case very long tunnel.
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AlvaDeer Dec 15, 2023
Wicki, I hope you will stick around, or return to Forum. You have a lot of experience in the "not perfect childhood" realm as a person who despite this stepped up with courage and honesty to DEAL WITH IT. You can be of help to so many others, given your honesty and how articulate you are. I wish you the very best ongoing and hope I see you here on Forum often.
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I am sorry for your loss, Wicki. You served your mom and yourself well. No regrets! ❤️
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Wicki, I am so sorry for this loss. Please let yourself be flooded with relief for your Mom and for the good job well done you fought at her side. My Dad used to say to me regarding his fear of doctors trying to keep him alive "Kid, stand between me and them with a shotgun, OK". He would laugh then and so would I. But when I think of it you may not have had a shotgun, but you wielded a pretty mean stick when you had to. You stood at her side her guard through this. You should be very proud as she would be OF you, and thankful FOR you, and knowing you would be OK without her now. Though I like to think, at 82, I still have never BEEN without the two sweet people who raised me. While I go on they are with me.
Hugs out to you Wicki. Please rest gently knowing she's at peace.
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I am glad your mother is finally at peace.
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Wicki, so sorry for your loss.
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What a blessing you were to your mom. You, and your family, are in our prayers.
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I’m so sorry for your loss, Wicki.
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(((Hugs))).
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Wicki, So sorry for your loss. May your mom rest in peace.
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Wicki, I'm so sorry for your loss, but glad that you were able to see if through and get your mom the care she needed at the end.
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Final update: Mom took her last, soft breath while I was in her room. It was incredibly peaceful . I know I'm very lucky because it's not always that way.
Thank you to everybody who was supportive without judgment.
I feel incredible relief. Many people counseled me to not get involved in carrying for my mother, but I'm glad that I did.. It almost tore me up... but I fear I would have been more torn up by my regrets if I hadn't... In retrospect I did it just right. So did she.
Love to all on this journey who haven't reached an end yet.
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I wish you peace on this sad and painful journey.
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I'm so sorry you are going through this gut wrenching time. Please know that all of our our hearts are with you. I agree strongly that when someone is at the end no medications should be held back. Your mom is lucky that you have been such a strong advocate for her. You have been with her throughout this entire difficult journey and I wish you comfort and peace.
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UPDATE 7: she's very peaceful now...meds managed well now, morphine and Ativan, deep sedation.
Perhaps in my last post I didn't express myself well.
I was simply conveying the pain of watching someone die. The process is sad.
To those who have been supporting thank you so much.
I don't need any more suggestions.. Just support. Thank you.
She's in a beautiful, homelike facility with friends and staff who love her. In her hometown of 55 years. They let me sleep in her room.
But the dying process sucks.
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BurntCaregiver Dec 14, 2023
wicki,

It's good that the meds are being managed and your mother is getting some peace. I don't believe there's anything worse than watching someone we love suffer and die. I agree with you that it's wrong not to be able to give a human being the same mercy and compassion we will give to a suffering animal in pain that is beyond recovery.

I can only wish you peace and comfort in your grief and I hope your mother goes to her reward soon and in peace.
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UPDATE 6: So I'm taking a bit of a break, have our caregiver in for a few hours, but I can't believe she is still hanging on but she is... She is getting more of the uncomfortable sounding breaths, her tongue sticking out i..t's just awful to see my mother this way... I simply don't understand making people suffer to this point, In a little extra dose of morphine would help them along..
AtAt least I have them on board with morphine etc every 2 hours and they are on top of it.
Meanwhile family members wanting to talk to her when she's comatose when they haven't bothered to reach out for years or even send a Christmas card or a birthday card. I would basically beg people to call and they never would and now all the sudden they want to call for their own sake. Well she is not conscious and can't even hear them. And even if she does it's a little too late.
I Just pray this is over soon but I feel like it's going to take forever. I'll be alone tonight in the room with her.. Because it is assisted living We don't have a 24-hour nurse so I have to get somebody if something happens so it's not like I can leave comfortably. It actually was a good arrangement up into this point but right now I could use the 24-hour nurse but just can't afford it.
I I'm just afraid of her suffering even though I know supposedly Cheyne Stokes is not suffering, It sure sounded like it when my dad went through it.
Ugh.
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waytomisery Dec 13, 2023
You are doing a good job Wicki .
Mom is in good hands.
Remember to care for yourself as well .
Take breaks , eat , drink , try to sleep ,
remember to take your own daily meds if you have any.

(((Hugs))).
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Please talk to the Hospice Nurse, or call the 24/7 number and explain what mom and you are going through.
They will either send a nurse out or a nurse will contact you and let you know what you can do.
There is a possibility that they will approve a slight increase dosage until she is comfortable. If she is still uncomfortable they will authorize transport to the In Patient Unit so they can adjust meds to make her comfortable.
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Wicki,

I am thinking about you every day.

I was so sad that my mom went so quickly. She was talking and laughing on Monday and died Wednesday night. But, it has to be so much more difficult watching and waiting. My mom’s death certificate stated vascular dementia but I cannot help but believe that her heart gave out. There was no death rattle or odd breathing. She had few of the signs folks talk about so much with active dying with the exception of the terrible agitation. She did reach up into the air as if she was reaching for something or someone. That was oddly comforting,

Know that we are all there with you in spirit and trusting for a peaceful passing.

Hugs!
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wicki100 Dec 13, 2023
@msblcb Thank you so much for your kindness and relating your own story... It's funny but she is still sticking around and I feel like maybe this is helping me process her passing because the first couple days I was immersed in grief and now I feel like I'm ready for her to go... So in a way while it's painful for her to be lingering I've spent the past six nights in the room and most of the days and I'm not angry or upset (except when the nurses push back on medication), So yes I think it may be helping me process better as it takes a while for her to go. I do hope she goes without the agonal breathing... I don't want to be there for that but I'm not sure of the option.
Anyway Thank you so much for thinking of me I will keep everyone posted right now She is peaceful She had one bad moment last night when they tried to move her slightly and I had to ask for Ativan. That helped.
I
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Wicki,

I don’t know if this will be helpful to you or not. Just ignore it if you don’t find it useful to you.

When my mom was in her end of life hospice care home. The nurse said to me that she had become so familiar with my mom that she could tell when mom was distressed just by the expressions on her face. Mom wasn’t able to speak towards the end. They know when to give meds.

This is such a difficult time. You’re hanging in limbo and it’s so hard.
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wicki100 Dec 12, 2023
@needhelpwithmom Actually I was just thinking today how I was going to approach the hospice staff after all this was over about how One of the nurses said that she looked comfortable just because she was "sleeping" (When in fact she was dying... Hello!). I know my mother and I know her facial expressions and I could tell by the Way she held her mouth she was not comfortable.
I did read them the right act about this whole situation and I told him I would report them and that they better get there you know what together.. since the nurses have been visiting regularly and not assessing her Just giving her the 2-hour morphine etc.
I dread to think what people without advocates with experience go through.
After This is over I do plan to write a letter and explain my experience and make strong suggestions about how they should change their process and protocol for administering meds and also for dealing with families at end of life..
One of the suggestions would be listening to families who know their loved ones and know their bodies and how they express themselves without words And of a family member says that their Love one is in pain You need to treat that and respect it and not rely on waiting for distress signals to become so intense that they manifest themselves in respiratory distress..
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UPDATE 5: first of all thank everybody for responding, @alvadear etc al.... Many of you I've read your posts in the past, and they have kept me going in my deepest darkness knowing that I'm not alone... No one can know the toll this caregiving of an elderly person can take on you unless you do it.
But Also the practical advice has been very helpful.
It It is morning and she is relatively unconscious when I swab her mouth she barely responds. I'm just hoping to avoid the agonal breathing phase but I have someone coming at 2 who's a caregiver who loves her and I can really use the support at this point. I thought I wanted to be alone with her and I was all night touching her hand by her side but I've been here when it mattered. Now I have family coming out of the woodwork more interested in her getting all the Catholic prayers when I was the one who has been there for her for the past 9 years through seven rehabs multiple hospital visits and operations and ultimately the last 15 months moved out here to take care of her.
Honestly thought I would be more emotional but I feel at peace right now and I hope that continues.
I have had nurses coming in every hour (for those who asked she's in assisted living in a hospice wing which is actually worked out very well for us except for the final days)... I really got in their case yesterday and said that they had failed me and I was very disappointed while at the same time respecting the nurses and staff, and telling them that I appreciate everything they do but it was just handled very poorly.
I just want her to be at peace.
How I feel about drawing out this process and how inhumane it is to force people to live their final days struggling is for another post. It is cruel. There's nothing beautiful about these final stages we force people to go though, while we put our pets to sleep to spare them the same thing.
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BarbBrooklyn Dec 12, 2023
We're here with you, Wicki. When her friend comes, please take a break. Go for a walk, have some juice, look at the trees.

(((Hugs))).
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Wicki,
KEEP THAT HOSPICE NURSE ON SPEED DIAL
Thank you for updating us.
We are thinking of you.
Be the squeaky wheel; it gets the oil.
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wicki100 Dec 12, 2023
Alvadeer....indeed
....This morning it was a mess... One nurse was giving regularly 2 hours in the morning and the next day it was 3 hours before she got it and she started getting agitated and showing pain.
Long story short... I heard from the head nurse by text and I sent her every single situation that happened in the past few days that showed that they were not in sync with their nurses and their protocols were all over the place when it came to administering morphine. Each night is basically did their own thing. The morphine was every 2 hours PRN and so the nurse had to assess each time if she "needed it".
I,E.: "Well she looks comfortable and our protocol is do not give morphine to a sleeping patient." OMG. She's ... DYING.... She can't tell you she's in pain until it's so bad her poor body moves even though she's basically paralyzed.
Anyway I definitely was the squeaky wheel and it helped tho I'm still not convinced...
What a mess.
But now in morphine every 2... Ativan and atropine... I feel the phlegm was choking her and that agitated her.
Now I just hope this is over soon.
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UPDATE 4: Okay now I'm fighting with the night nurse...5 hours since last morphine and Ativan and she."assessed" she's not in distress so won't give it. Had to call head hospice nurse. So frustrating.
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AlvaDeer Dec 11, 2023
So sorry to hear this, but it IS good that she is not in distress.
Do you agree with the nurse that mom isn't currently in stress?
Because these medications are given "as needed" or prn. The need is judged by symptoms.
What is this "night nurse". Is mom in a skilled nursing facility where she has a nurse there at all times? Often hospice is done in home, and family is in charge of medications.
I am glad you have access to the hospice RN. DO NOT HESITATE TO CONTACT HER/HIM.
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wicki,

Your description of your emotions are spot on to how alot of us feel/felt . Don’t punish yourself. You did your best . Your emotions will go back and forth due to loss and grief. You are correct , we are all human . One day at a time .
(((Hugs)))
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UPDATE 3: Okay so they now agreed to morphine every 1 to 2 hours... And all I've done this past year is post about how I couldn't wait for this to be over, and all my resentment about caregiving, waiting for her to die... But still showing up every day even giving up my job and moving out to take care of her...
and now I feel so devastated. I hope I don't give myself grief for all the times I got angry about showing up for her. I have to remember I'm human; just the way she is human and how she reacted when things didn't go her way because she could no longer manage them herself and she was constantly complaining. But now in retrospect I'm so glad I did this.
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So glad for you both, Wicki!
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UPDATE 2: So we have the pain and agitation under control ...Thank you everybody for your input ...This forum has been so incredibly valuable to me. I'm sure you'll hear from me again soon with another issue but for now she is relatively comfortable.
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Msblcb Dec 9, 2023
That is such good news. Thank you for updating us.
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I am so sorry that you are going through this.

The Ativan and morphine really calmed mom down. She was breathing so fast that the nurse was concerned. That day has really caused me heartache. I have taken advantage of hospice counseling. AlvaDeer is right. I interpreted it as fright or being scared and it does have so much to do with their bodies changing (but it does not make it easier).

I have mentioned before. I stepped out of the room to call my brother, who was not able to be there. While I was out of the room she passed. She was always introverted. I think she wanted to pass alone. That has also caused me heartache but I think mom was intentional in saving me from witnessing her passing.

Please keep us posted and know that we care about what you are going through. I am praying for you!
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DeathDoulaWY Dec 13, 2023
I'm sorry for your loss, Msblcb, and I agree - your mom likely wanted to spare you from watching her pass. We have more control over our exact time of passing than one would think. This happens often, passing when a loved one steps out of the room for a short time. Years ago, I was assisting a hospice patient with dinner and her roommate's sons were visiting. They left to find her nurse, and we heard her pass about 10 seconds later.
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Wicki,

Thinking of you and sending hugs your way. My mom also took Ativan plus Seroquel.
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I experienced terminal agitation with my mom. She was peaceful until the last day. Hospice had not even had time to deliver the comfort kit. She became agitated in the morning and ask me “am I dying”? I said yes and it was horrible for a few hours. Music, talking…nothing helped. She was holding on to the bed rails like it would keep her on earth. The comfort kit arrived about 7:00, the morphine and Ativan helped and she died one hour later,

I prayed for a peaceful ending. It was not. But, she did not suffer long. The meds helped calm her down and helped her breath easier,

A huge hug to you! You are in my prayers.
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wicki100 Dec 9, 2023
Msblcb... Yes, My mother was also grasping the handles with a strength that I have no idea she possessed. It was horrifying. Why don't more people talk about this? Anyway, mom got Ativan an hour ago and is sleeping well. Im on an inflatable mattress in her room.
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