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My dad was only sick for six weeks before he died, and I told him right off the bat that no subject was off limits from that point on. I stayed with him and my mother (who has dementia), and we talked for hours on end. He'd tell me to get my mother to bed first, then he asked me to bring a notebook in his room. After the first night of that, I had seven pages of notes. Mostly he talked about other people and how much they meant to him. While he was still able he called those people himself and told them, and he wanted me to write to those he didn't get to.
He also asked me one night what it was like to die. I then realized neither he nor my mother had ever been with someone when they died, while I was with my grandfather when he died and arrived at the hospital before my dad did when his mother died. I saw her just after she died, but he didn't want to see her.
I was able to tell him that they both just went to sleep, and were not aware they were dying. My grandfather was kind of like a burner whose flame was slowly turned down until it went out, and that's what I told my dad. In the end, that's pretty much how it went with him, too. He was not conscious for the last 12 hours of his life, I'd say, so he didn't know when he was going. I think me telling him how my grandfather died was comforting to him.
A couple of years before he died he started writing down his memories, and during those conversations he'd tell me to add a particular memory to the computer file. Getting that stuff down was very important to him, because he'd always been kind of closed up about his growing up years, and we didn't know much about it. He had a terrible childhood, but finally he thought he could put down the good things he remembered.
I'm so grateful we have that document now, because it gave us a better idea of how he became the person he was. His mantra was "Anytime I didn't know what to do in a situation, I'd ask myself what my parents would do, and I'd do the opposite." We used much of his background and that mantra in his eulogy, and the 300 people at his service were astounded that he hadn't come from a happy, loving family, because that's the kind of person he was.
The last thing he said to me was, "Did I write down that I once danced with Keely Smith?" :-)
Those last conversations are priceless, so don't waste them. They should be joyful, not sad.
When people have dementia it can be difficult depending on the level of dementia. Sometimes I just tell my stories, watch body language and facial expression to see what registers.
Find out as much as you can about the patient. Do they like music, what kind, read the Bible maybe, what kind of work did they do etc.
And sometimes near the end all you can do is sit with them, maybe hold their hand. It’s thought that hearing is the last of our senses to go. Speaking softly, play music, read a favorite story.
Even if they're in late stages of the disease, they say that hearing is the last sense to go, so continue talking and playing music.
It was so beautifully done and with Mom so profoundly and gently talking like she'd never talked before, I just sat there and wept.
Loved the exchange between your brother and his daughter - what a beautiful memory for all of you!
So glad his passing was very peaceful and extremely comfortable - if only everyone's loved ones could pass away like that.
You will be getting the same questions over and over and over again. YOU need to KNOW the answers. (ie: If Dad gets all he needs for the pain, will it hasten his death?)
Not everyone is set up to care for hospice patients. It is more a "calling" than any other part of nursing care I know (other than burn units). If you are not called to do this nursing, do not attempt it.
Once you know fully why you are there, the rest of it just comes. You are there to support the patient and family on this journey, to make it easier for them, indeed to assist in making it enlightening. Please speak with as many Hospice nurses and caregivers as you are able. This of all areas of nurses encompasses at best the inclusion of all workers, Social Workers, grieving counsels and clergy.
You mission now is SOLELY "What does this patient and his or her family NEED from me."
You are going to see more of honesty than you ever thought you would.
The patient will be your guide, and indeed your teacher. The patient will let you know what he or she wants to discuss with you. With other family. The questions is not for US on forum to answer, though many who have used Hospice will do so and every bit helps. The question is asked of your patient. What can I do for you. Is there anything you want to ask me or tell me. What can I do to help you.
I am wishing you so much luck. Hospice has changed in my time in nursing, moving more from a mission to a part of the military industrial complex, a business. STILL, there is more here and more you can do than almost any other place in my humble opinion. Hospice nurses more now just render care while others take on the things that allow a patient more time to speak with you. Sometimes even volunteers are the "visiting people". Hospice nurses are as hurried along now as every other aspect of nursing.
The patient is your guide. He will let you know if he would rather speak about health concerns, losses, or whether he wants to watch an episode of Better Call Saul. The patient is your guide.
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