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.
I spent most of the last week of my mom's life at her bedside. She never regained consciousness once they put her on "comfort care" At one point the doctor came in and said "you know she doesn't know you're here" I said, I'm doing this for me now. He put his hand on my shoulder and left.
I'd like to think she knew I was there even though the doc didn't think so. At one point I thought maybe her spirit had already left her body and was maybe sitting beside me. Stupid thought probably but your mind plays tricks on you.
Stay if you need to but take care of yourself. I wish there were something I could say that would make this easier for you right now but just know that once this is over given time you'll remember her as she was and not how she is right now.
God Bless you.
I am so sorry that your mother is struggling with her emotions.
I went to see my mom in her end of life hospice care home often. I did not want to see her take her last breath and have that as my last memory with my mom. I was there shortly before she died. She was unconscious by that point.
Everyone is different. It was important to my brother to be with mom at the time of her death, so I am glad that he was.
You are the only one who can decide what is best for you right now. Just know that you don’t have to be there if it becomes too hard for you.
I do not regret not being there at the end of my mom’s life. Seeing her fade away would have broken my heart. My mom didn’t expect me to stay around the clock with her. She received excellent care from her hospice staff.
Her nurse said something that helped me in the end. She said that my mother was traveling. She felt that the dying have one foot in this world and the other foot is leaving this earth.
My mother was on Ativan and morphine towards the end too. She died peacefully at age 95.
I hope that your mom will receive the correct dosage of meds and that she will be able to be at peace with dying.
It helped me to know that my mother was not afraid to die. In fact, she had been ready for a long time. She had suffered enough and longed for it to end.
Do you think a visit from the social worker or clergy would help your mom? They are available for the entire family while going through this process.
Wishing you peace as you spend your final time with your mom.
Sending you many hugs today!
My understanding is the terminal agitation can pass. I hope that is the case.
I appreciate what you say about everyone needs to do what they can and not being there is also okay. I feel I need to be here because I know that I am a source of comfort. When she is in distress when she wakes a bit, I want to be able to hold her hand and look at her eyes and calm her again.
Also I'm her best advocate. Probably everybody here knows just how things slide the minute you're not around!
I do have a friend coming in in a bit who can sit with her so I can go home and shower.
Thank so much for replying. I've often found your posts very helpful.
Wikki, keep on advocating for more frequent doses of morphine--maybe smaller but more frequent? And the Ativan is good IF it's helping. In some folks, it CAUSES agitation, so if you see that, ask for a different med.
Favorite music is key here, play the songs of her youth and courtship.
(((Hugs)))) and remember to keep hydrated yourself.
She actually did also day Ativan plus morphine could cause agitation so she stopped the Ativan for now.
Thanks for the advice....
My late husband had a lot of agitation at the end of his life along with extreme pain that hospice couldn't get under control, and it was truly horrifying to witness as everyone that I had seen die up to that point had been a fairly peaceful crossing over.
And I guess the fact that he was in our home and I was with him 24/7 didn't help matters either, as I couldn't get away from it. Nor did I want to as I wanted him to know that I would be with him until the end. I just hate that his crossing over seemed more traumatic than others I had witnessed.
But he is at peace now with his Lord and Savior and for that I am grateful.
So hang in there. There is light at the end of this tunnel, and you will come out at the other end a stronger and more compassionate person than you were going in.
May God bless you and keep you.
Terminal agitation is a normal, albeit very distressing stage of dyingthe norm. The organs begin to shut down and this is one of the stages in which the electrolytes are so messed up that the body system is basically a toxic stew. This is normal and it is expected and I thank goodness she is on hospice where it can be treated.
Please discuss with the hospice nurse.
Also look up information online about this stage.
This is dreadful to have to watch. In her excellent handbook about VSED self-deliverance the author explains the stages of dying. The best hope during this stage is heavy sedation. (The VSED Handbook by Kate Christie.) It is chaotic confusion and agitation in which the body is completely out of control. This is the stage close to the end, and again, the answer is heavy sedation now. Your loved one doesn't need to be awake to comfort you. She needs instead to be medicated below the state of dreaming.
I am so sorry for your loss. Few people are told so clearly as they should be what the normal stages in dying are, and this can be a shock. Speak with your hospice RN and Social Worker about this stage of dying. My heart goes out to you. This is shattering to witness. Keep medicating through this stage which may last one to four days.
I'm hoping tonight it will be better with the Ativan and not worse/ bad reaction. I will say they've been very good about checking with me and I can reach them in the facility at any hour if I need them.
They did mention Haldol as well of needed.
Just sending hugs.
May God give you comfort this evening while you wait.
I wish for peace for your mom and for you. Soon.
Thank you to everyone in the forum now and over the past year. I've not embraced this caregiver role gracefully nor without a lot of resentment and frankly... prayers for her to die. You all gave me the freedom to express that without judgement. No one can understand unless they've been there.
Now that the time has come for me to be free, I feel true love for her... I realize I have swept out the dark corners of my childhood, this journey has been a recreation of every moment from infancy to young adulthood, a redoing of the past, and being present for her makes me understand there was a purpose in this all bigger than I knew at the time .
That said, I pray my caregiving days are over ( until husband... That's another story).
Thank you to everyone and I appreciate hearing all your suggestions and experiences as I really through this long night that could go on ..longer... For a week or more? Your words all help so much. ❤️❤️❤️
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.
Thinking of you and sending hugs your way. My mom also took Ativan plus Seroquel.
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!
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.
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)))
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.
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.
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))).
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..
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
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.
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))).
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.