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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

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The only thing I can think is that your Dad is going through a rally, which isn't uncommon. What is uncommon is that he's been doing that for 10 days. May I ask if he is a tall large man? Maybe he needs a higher dosage to keep him calm. That is something to ask Hospice.
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Thank you for your response. He is about 5'8" and used to weigh around 180. Now he's down to 140. Last night he was on a 12-hour morphine dose, a morphine syringe, Ativan, and Percocet. How he wasn't knocked off his feet is amazing to me.
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This may not be true for your Dad but the people in my family seem to have some genetic allergy to morphine or any of that family of drugs-makes them hallucinate and makes them edgy. I hope your Dad doesn't suffer too much longer and that your Mom gets some badly needed respite soon. Take good care of you too and let us know how it goes.
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Jaime,
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!
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Jaime, the pain meds are causing a lot of the mood swings with his own body's immune system trying to fight the cancer. Is he is pain? Try lowering them and see if he settles down. No one can write a manual describing WHEN a person will die from anything, so I suggest you just be patient with him for as long as it takes. My brother also died from lung cancer because he refused to stop smoking. The military gave him six months and he lived six months. Let your father fight for HIS life as long as he wants, because it is HIS life, not yours.
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With advanced cancer, at what point does any of this matter? Let him do what he wants. Maybe the cancer has affected his mental state.
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I think it's a very good decision to have him moved to a facility if your loved ones can't handle him. My father died of cancer at home but he never wandered around like that.
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Most Hospice have In Patient Units where a patient can be admitted to help with pain management that can not be handled safely at home. A Hospice patient can also be admitted to the in patient unit for "respite" for the family or caregiver. It sounds like your Dad might qualify to be admitted to an in patient unit until his medications are regulated so he does not get up and potentially fall, as well as adjusting medication so as to eliminate hallucinations.
Contact Hospice and discuss this with them.
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Jaime you are experiencing the toughest of times I am sure. My Mother is in hospice care at home. She is not capable of walking anymore so at least we can keep her somewhat more under control in the house. We recently went through 24 hours of hell as she screamed and cried constantly. We called hospice and they took her to local hospice unit in local hospital and it took a week for them to get her Meds under control! Things have been so much better since doing that! As her 24/7 caregiver I am able to sense her mental directions rather well and administer just the right meds! She is now having calm and happier days and nights. This allows me to have the energy it takes for her extensive care! I would highly advise you speak with hospice about a hospital stay to get him on the meds that will work best for him so his final days here with you are not so tortured for him and your family. I wish you and your family good final days together that bring you all a peaceful time.
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My father had lung and brain cancer and went home from the hospital as he didn't want any treatment. That was in late January (1986). Each day, my sister and I would wonder about the body's resiliency for he wasn't eating or drinking much at all, and yet his body just 'kept on keeping on.' When he was assured that the insurance policy he had taken out was a year old (plus a few days) he seemed to relax. The policy would have been null and void if he died of a catastrophic disease within 365 days of taking the policy out. All agitation left him when he knew his wife would be taken care of. He passed peacefully at the end of March, at home, without meds - mostly a result of voluntarily not taking anything by mouth. Left to his own resources, Dad knew what to do. Even Florence Nightingale knew that writing letters home for the soldiers who couldn't do so for themselves brought solace at the end of life.
See if there's anything your Dad has left unfinished.
My heart goes out to you, Jamie!
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Jamie, musicismymuse said what I was thinking. Your dad has something bothering him. Have a heart to heart about being at peace with his passing. -assure him if you can that mom will be okay- it does sound like that really good period before the last few days. I hope you can get some relief for him and he can relax for his final days with his family.
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Musicismymuse what a beautiful response. Your Dad sounds like he a was a good man. Your story touched me deeply. Jaime, I am praying for you and your family.
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my uncle was told he would die within 3 mo. he looked terrible when he got out of the hospital in the last visit!!! he was difficult and demanding...and looked pretty good a lot of the times...and then boom...died! i feel sooooo sorry for your dad...61 yrs old is young!!! my prayers to both of you!
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My husband is going through the same thing. In the beginning I was begging him to stay and I honestly believe he stayed for me. Now that I have accepted reality, he is still staying around even though I told him it was ok to go, that I would be ok. He does pretty much like your dad and spends a lot of time wandering. My daughter says he is obviously not ready to go. Hospice has been a lifesaver for me, helping out physically and emotionally. Nancy Reagan called it the long goodbye. So true. I pray for all of us.
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Jaime, I worked with Hospice. Has anyone allowed your Dad to speak about his thoughts on dying? We all are dying, some, sooner than others, but we all eventually die. It is hard for some people to speak about dying at all, but if they can, it makes the entire process easier, for everyone.
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musicismymuse - btw, love that; kinda feel like it's mine, too; need to get off here and go play - but anyway, do you mind sharing how old your dad was?
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I agree that directly talking about his situation and asking him if there are things he is worried about, thinking about that you or hospice social worker etc, could help him deal with. My Daddy was pretty much out of it when he went into hospice...had fallen, a break that he could not have treated, dementia that got much worse due to pain meds, but we had told him we were trying to have the great grandkids fly down to see him, and he seemed to be waiting for that. His first great granddaughter shared his birthday and they were VERY close! We could not get affordable and timely plane reservations, so what we did was have them call him. He seemed out of it, but we held the phone to his ear, and let them each talk to him, pray over him, and say goodbye to him....let him know how much he meant to them and that they would always remember him. (his big fear was that these great grandkids would not remember him, due to age) He became very peaceful after the phone calls from this side of the family and passed within two days. He was 93. Maybe your Dad is wanting to see or talk to certain relatives too? Or maybe needs to talk about whether his wife and/or others will be OK without him in the picture? I agree totally that you must talk to the hospice nurses as to how to proceed to get him in a better state of being.
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This makes me so sad. It reminds me of how my husband was, he was 5'9", maybe 140. His last month he would lay in bed and yell, cry, lash out in anger, then cry and feel bad for it. The fact is some people don't take dying well, and some people have a higher tolerance to drugs than others, just because your smaller doesn't mean your easier to put into a drug induced coma. And based on what you said about your dad, not giving up on anything, why would he want to in the end if he wasn't inclined to in general. Some drugs like Ativan can cause confusion, look at his meds, might need to increase some of them more than anticipated. His moving from room to room, he's trying to find comfort, physical and emotional comfort, he's restless because he can't get comfortable. For you all, those of us who've experienced this understand your pain, your frustration. You just want peace, peace in your life and peace for your loved one. Try to make him comfortable, up some of his meds.
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A friend of mine recently lost her 26 year old daughter to ovarian cancer. This young woman was determined not to die and fought it all along the way. When they finally called in hospice, we thought she would be gone fairly quickly. The level and number of meds she was taking was mind-blowing. But it wasn't enough to keep her pain free which meant she would wake up, get out of bed, roam around the house, want something to eat, etc. She was a whisper of a thing, nothing but skin and bones. It was dreadful. In order for her to be pain free, they had to increase her medication levels beyond what hospice could give her at home. It needed to be intravenous. So she was moved into Palliative Care at a local hospital. And thank God for that blessing. My friend had just about come completely apart from grief and exhaustion. And by the time her daughter did pass, the entire family had come to accept her death and we were all grateful that she was able to go so peacefully and that she was no longer in pain. With in-patient hospice, it takes a great deal of pressure off the family caretakers. This would be my suggestion for your Dad. If you check around to find a recommended Palliative Care unit, they'll have doctors that know and understand exactly what is going on and how to handle it. My prayers are with you and your family. This is a very tough time.
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but so sad for that daughter at such a young age
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While I agree with helping our dying loved one to let go, the hallucinations and aggitation may have additional physical/pharmacological underpinnings. Morphine can cause dilerium, ativan can cause confusion, and both my mom and I have paradoxical reactions to Percocet - doesn't knock us out - it keeps us up and wired! THe other thing is you do not mention Oxygen. If he is endstage Lung CA he must be having difficult with breathing. Air hunger can also cause mental status changes and aggitation. WHen he ambulates you say he is unsteady and falls. Does he have a walker to help steady him (though he would still be a fall risk). Try having someone evaluate his meds - hospice should be able to help. Good luck and God Bless!.
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I agree with the mention that this could be a rally. The medications are likely causing much of the odd behavior, but if he needs them for pain then he needs them.

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
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Morphine is notorious for those symtoms - when I had knee surgery one lady was off her rocker for days even after they stopped it - she would say she had differing numbers of children & that's something every woman know for sure! - good luck & try to change those meds
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