Follow
Share

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

This question has been closed for answers. Ask a New Question.
Find Care & Housing
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
Helpful Answer (0)
Report

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.
Helpful Answer (3)
Report

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.
Helpful Answer (2)
Report

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.
Helpful Answer (2)
Report

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!
Helpful Answer (2)
Report

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.
Helpful Answer (2)
Report

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!
Helpful Answer (1)
Report

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.
Helpful Answer (1)
Report

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.
Helpful Answer (1)
Report

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.
Helpful Answer (1)
Report

See All Answers
This question has been closed for answers. Ask a New Question.