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Praying that the Lord will comfort you during this sad time.
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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. ❤️❤️❤️
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overwhelmed21 Dec 8, 2023
❤️❤️❤️❤️
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Wikki, I'm so glad they are willing to add an antipsychotic. (((Hugs))).
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wicki100 Dec 8, 2023
Barbbrooklyn... Yes! It helps hearing others experiences...I feel more confident.
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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.
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wicki100 Dec 8, 2023
Fawnby, Thank you for your kind words, it makes a lot ❤️ and yes, I agree... All the nurses basically said I can't do that or I could lose my license and I know that's true so I don't want to be a pain... But they agree it's ridiculous.
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I’m surprised Haldol is the standard over seroquel
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wicki100 Dec 8, 2023
PeggySue...I think they may have said one or the other... I mentioned Seroquel tonight and they said yes,.get us the minute you think she needs it...
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(((Hugs))).
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wicki100 Dec 8, 2023
Waytomisery.. Thank you ❤️
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Hey, Wicki.

Just sending hugs.

May God give you comfort this evening while you wait.
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wicki100 Dec 8, 2023
Cxmoody .. Thank you so much ❤️❤️
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Seroquel helped ease my dads terminal agitation. It was part of his hospice meds
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wicki100 Dec 8, 2023
Peggy Sue...Thank you! They mentioned that so I'm going to bring it up tonight if it happens again.
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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.
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wicki100 Dec 8, 2023
Hi Alvadeer... Thanks you so much for your reply and your experience. Trust me, I really don't want her to be awake and I would love her to be heavily sedated... Having been through this before I expected that to be the case...But... The nurses are afraid of giving too much morphine and losing their licenses... But we discussed and she's now on a schedule which I had to push for as opposed to PRN... And they are using Ativan also... I just really think this whole system is messed up, It's crazy to say you can't give too much morphine because it was suppress breathing...in dying person!
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.
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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.
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wicki100 Dec 8, 2023
Funkygranma59.... Thank you so much for your reply and advice. I'm so sorry about your husband going through this but I know there's a small part of me that feels that I did something wrong because the other people have been with didn't go through this, So it helps me to know you were also surprised. I now read more and more This is common and just getting it under control is the hard part for some. Right now she's getting morphine every 2 hours and they cut out Ativan and she's resting comfortably with just a few outcries that settle down after a few seconds. I do know that she can hear me though, so I'm determined to be here but have some respite coming for an hour. Anyway thank you for your support...
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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.
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wicki100 Dec 8, 2023
Thank you! Nurse just came in and I asked her to give her morphine before she left for the day shift to come in.
She actually did also day Ativan plus morphine could cause agitation so she stopped the Ativan for now.
Thanks for the advice....
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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!
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wicki100 Dec 8, 2023
Needs help with Mom...Thank you...! I just asked the nurse to have a social worker or the spiritual counselor to come in. Her terminal agitation really seems to be the actual biological phenomena I understand is labeled terminal agitation that's not (sadly) an unusual part of the process of dying and she's past the point of counseling personally (or at least she was last night). I'm kind of a spiritual counselor right now.
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.
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You are most welcome. Take care.💝
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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.
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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.
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DeathDoulaWY Dec 13, 2023
Hi Gershun, I'm sorry for your loss. Just wanted to say she knew you were there.
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