How do I help my mother with terminal agitation?
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.
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.
You are in my prayers!
no words needed
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.
Hugs out to you Wicki. Please rest gently knowing she's at peace.
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.
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.
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.
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.
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))).
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.
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!
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
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.
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..
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.
(((Hugs))).
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.
....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.
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.
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)))
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.
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!
Thinking of you and sending hugs your way. My mom also took Ativan plus Seroquel.
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.