Quick Skim - I need advice about a terminal patient who isn't cooperating with his caregiver and seems hell bent on staying alive. If you can relate, please read on.
My 61 year old father was sent home with pain management only, no further cancer treatment, for stage IV lung cancer. This was almost a month ago. My mother had to arrange for hospice immediately because he never regained his balance or strength in his legs to stabilize himself and be mobile.
We have been expecting him to die any day now for the last 3 weeks. Two weeks ago he was worse off than he is now - glassy eyes, seeing the dead, not eating or drinking, and unable to get out of bed without assistance. In the last 10 days or so, he's sort of revived himself. He walks around, and he falls every single time. He is stubborn and refuses to stay in bed. Last night he was on a multitude of pain meds, a combination that any of us would be afraid of dying from, and he was up and around the house all night. He hid his straw from his drinking cup under the sink. He tried to go to the upstairs bedroom to sleep but said there were too many people up there making noise. He went back downstairs and said there were too many animals there. (There are no pets in the home, and the only living people would have been my mom and dad.) Additionally, he has mood swings that go from a somewhat somber acceptance of his mortality to a raging anger and denial of his fate.
Everything we've read about the signs of dying suggest that he should be gone by now. Has anyone else experienced this? It's just so painful because we know he hates being in this state. When he's aware of his state, he is embarrassed and scared. He would have preferred a more gentle death. But then again, this kind of fits his personality, this inability to succumb or be defeated.
What are our options at this point? If the pain meds don't keep him safely in his bed, my mother is going to have to move him to a facility, for her own safety and long-ignored sanity. Nobody wants that. Nobody. But what else can we do?
I thank you in advance for sharing your experiences to help others. I hope to be able to pay it forward some day.
Jaime
I'm not certain about finding a place for him in a nursing home for such a short term but your mom needs to be considered if this continues too long. If you need to move him, that isn't the end of the world. Hospice works very well with nursing homes. Generally, though, if people have been in their own home it's best to keep them there if possible.
This is tough because he could change tomorrow (or by the time you check this site). While many people improve when on hospice care and actually go off the program, someone in this stage of cancer isn't likely to have that happen, so this behavior is most likely self-limiting. Keep in touch if you can. Our hearts are with you.
Carol
See if there's anything your Dad has left unfinished.
My heart goes out to you, Jamie!
Call your dad's hospice nurse and let them guide you. This is their area of expertise. How long someone will live is unpredictable, your hospice nurse can also help you understand what may be happening. As humans, our bodies are "programmed" to live and one doesn't necessarily accept the inevitable. Your dad is young. I am sorry he is suffering as are you and your family. Your dad is in hospice; use the supports that are available, i.e.
Nurses, social workers, chaplain, volunteers-you don't have to go through this alone. Good luck!
Contact Hospice and discuss this with them.
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