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. 🫣
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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.
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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.
There ARE alternative drugs.
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.
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.
yes, I went through this last month. It is so difficult . It is so hard.
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. ❤️🩹