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.
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.
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 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 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.
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.
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.
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.
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.
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.