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rsparksva Asked February 7, 2024

Ugh. How do you separate LO hurtful behaviors from who you once knew as the end draws near?

As if caring for my 88-yr-old father with support from hospice and paid caregivers wasn't hard enough, this agitation stage he's reached is beyond anything I would have imagined. Sunday to Monday was full of wild assumptions, hallucinations, attempts to stand on his own, etc. Meds didn't do a thing to ease it. Tonight he won't let me give him pain meds or lorazepam at all; he also angrily asked me why I'm here and told me to go away. I said I'm here because I love him and want to help ease his pain. "You're the one causing it! I'm dead! Why can't you just leave me alone?" Logic reminds me that my sweet dad's brain is deprived of nutrition and hydration and it is shutting down. My heart is another matter. Hanging on to what I know is true and letting my tears flow when I need to. When I did that just yesterday he pulled me in for a hug and asked if "all of this" was getting to me. Glimpse of "real Dad," then poof.


 


Recognizing there is no point in refuting any of what he's saying tonight, anyone have any similar experiences with loved ones at end of life? I'm looking forward to the hospice nurse visiting tomorrow. He already offered to put Dad on a med schedule vs as needed, but that won't be helpful if I'm the one who is meant to do it and he won't let me put anything in him or on him.


 


End of life is so not what they show in Hallmark or Lifetime movies. 🫣

JoAnn29 Feb 7, 2024
You do realize that the Nurse is available 24/7 by phone. You don't have to wait till she visits,
rsparksva Feb 7, 2024
Yes, I do realize that. We communicate regularly outside of his visits.
AlvaDeer Feb 7, 2024
No it isn't a lifetime movie to be certain.
Movies, after all, comfort that they are, don't do much to help us face the realities of life.

If you ultimately cannot manage care at home you will have to let hospice know.
If they cannot come up with a way to manage it then your dad may need transfer to a facility that can medicate him sufficiently.
Meanwhile, as you said, it makes no sense arguing any of this and other to keep repeating "I love you Dad; I am trying to help you the best I can", there is little to say.

I am so sorry. This may not be managable at home, and if it isn't you will need Hospice to go to bat for you with their social worker to find some sort of placement or some way to medicate.
rsparksva Feb 7, 2024
Thanks. The nurse agreed today that we should shift to different meds to see if that helps. Dad has had a mostly restful day today with zero meds on board and minimal fuss or interruption by any of us, just as he wants. That's a good thing. I'm taking that win and continuing to focus on the loving things I can do to bring him ease, now. In the end, I'm grateful that love remains even when our souls go on to the next part of this mysterious journey we call life.

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OncehatedDIL Feb 7, 2024
I just went through this with our son. His brain mets (from colorectal cancer) began causing the same behaviors you are describing. His bone mets had broken one of his legs and the other hip at the end of December. The brain mets kept expanding and started causing agitation along with audio and visual hallucinations. He kept trying to stand up and fell twice with the attempts.

I called the hospice people as I was sleep exhausted and at the end of my strength and wits. The triage nurse arrived and immediately called for transport and took him to their Inpatient facility.

They did their best to use Haldol to help him with the agitation. He was at the facility for 8 days as they worked to keep him free of pain and agitation. He died peacefully with me at his side talking to him and loving him. His last agitation episode had been a bad one and occurred just 48 hours before he died.

The brain mets were causing his brain to malfunction, his organs were being shut down from neurological failure due to the brain mets.

The hospice people kept assuring me that this was nothing new to them. They often work with cancer patients dying from brain mets. Keeping him safe required a team of 4-5 people when the brain mets caused the severe flare ups.

Please don't take your dad's words or actions personally. He just needs medication help as his situation is beyond his control. Best to you.
rsparksva Feb 7, 2024
Thanks so much...I'm so sorry for your loss and your experience, too. ❤️‍🩹
BarbBrooklyn Feb 7, 2024
If morphine agitates him, call your hospice nurse and tell her that, and that he refused the Lorazepam (are you sure it's not the Lorazepam that's agitating him? It has that effect on some people).

There ARE alternative drugs.
rsparksva Feb 7, 2024
Thanks...yes, our nurse knows about the morphine. It is the only liquid pain med we have at the moment but we are discussing options during this morning's visit. He hasn't had much lorazepam, but good point...will bring that up too.
NeedHelpWithMom Feb 7, 2024
I’m so sorry that you are going through this. I read your responses and am glad that your faith is comforting to you.

Wishing you peace as you continue on this difficult journey of caregiving.

Please know that you are doing your very best. Speak to the nurse about all of your concerns. I hope that she will be able to help you find ways to make this easier for you and your father.

It’s terribly hard to be in this situation. We are here for you. Reach out to the forum whenever you need support.

MAYDAY Feb 7, 2024
By the way.., you’re on hospice…
By the way… you know, they know, it’s okay.. death is okay..
You may give him a lil extra dose if need be to calm him.., you are on hospice..he needs to calm down. You tell him you love him. Thank him for everything.

MAYDAY Feb 7, 2024
You are absolutely correct.. IT IS NOT A HALLMARK MOMENT…

yes, I went through this last month. It is so difficult . It is so hard.
rsparksva Feb 7, 2024
Thank you, Mayday. I'm sorry you have had this experience, too. ❤️‍🩹
MargaretMcKen Feb 7, 2024
OP, you are a good brave child doing the best you can for a difficult parent at their end of life needs. Let that knowledge settle in your heart. If you have a belief in God, let you know that God will tell him too.
rsparksva Feb 7, 2024
Thank you so much. It also helps me to remember that morphine is not Dad's friend. This behavior comes up whenever he is given that for pain. I gave him only a little earlier today before he started refusing things, and now pay the price. It's the only liquid pain med we have just now, so another convo for the nurse tomorrow.

Indeed I do have a deep faith in God and trust that neither I nor my dad walk this road alone. Then there is also my beloved mom, who has been in heaven for 16 years now and is surely the equivalent of the mayor up there. It brings me comfort to imagine her beautiful smile and her arms stretched wide, saying to Dad "I've been missing you!" as she envelopes him in a hug. She used to say and do the very same with me whenever I would come home to visit.

On repeat: we are all just walking each other home. ❤️‍🩹

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