How do I help my mother with terminal agitation?

wicki, I feel for you. Oh, that everyone would die peacefully with a smile on their face.

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.

Gershun, Thank you so so much for sharing your experience and your kind reply. I especially needed to know that I would remember her as she was and not as I see her right now... I let my being with my dad and some of the bad moments affect me for a long time after, and I don't want that to happen with my mother. Thank you.

You are most welcome. Take care.💝

wicki,

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!

Gershun, not all a stupid thought. Quite a beautiful one, in fact.

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.

Honestly the only way you can help(other than being there)is by making sure that hospice is providing your mom the morphine, Ativan and I would also request Haldol as well, in a timely manner.
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.

HEAVY MEDICATION is how to help.
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.

Seroquel helped ease my dads terminal agitation. It was part of his hospice meds

Hey, Wicki.

Just sending hugs.

May God give you comfort this evening while you wait.

(((Hugs))).

I’m surprised Haldol is the standard over seroquel

I'm so sorry you're having to go through this. I totally agree with you about the morphine. If it were me, by the time I was on it, I'd want enough to send me away to my next adventure. The attitude toward assisting dying is changing a bit, but not nearly enough. We need to keep talking about it.

I wish for peace for your mom and for you. Soon.

Wikki, I'm so glad they are willing to add an antipsychotic. (((Hugs))).

UPDATE from me: The head nurse heard my concerns and instituted protocol to check every 2 hours ( even though I'm here, that helps); morphine every 4 and prn; Ativan; then Seroquel or Haldol if needed. She's also in oxygen via canula ( mask scares her so...no...) And that seemed to help.
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. ❤️❤️❤️

Praying that the Lord will comfort you during this sad time.

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.

Wicki,

Thinking of you and sending hugs your way. My mom also took Ativan plus Seroquel.

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!

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.

So glad for you both, Wicki!

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.

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)))

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.

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.

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.

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.

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!

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.

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.

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.