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 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 wish for peace for your mom and for you. Soon.
Just sending hugs.
May God give you comfort this evening while you wait.
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.
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.
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....
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.
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.