r/lungcancer 3d ago

Mom is half delirious

Man, I really want to run away. I’m going to lose my composure. I can’t tell if my mom is lucid or not - she prob has some delirium. She’s been accusing me of being an ingrate (and other nasty names). Shes been insisting she wants to go home and doesn’t want treatment anymore. I mean yes that matches what she wanted before she became a bit delirious, but now I’m not sure bc she was the one who wanted to keep treating too…my dad has already lost his shit multiple times. I’m so tired, but can’t sleep bc mom would wake me up and demand some things like a child (well can’t help with that when you are end stage). My dad is gonna lose his shit again when he gets here. Like legit the nurses noticed how he’s speaking for mom. And I’m stuck in the middle

Doctor says he’s comfortable discharging her today but just needs to arrange transport. I think my dad wants hospice facility but mom wants to go home. She keeps saying she wants the wheelchair. I’m so tired. But I can’t even complain because my dad has been dealing with this for three days straight and I just one. I just want to sleep on a bed. I woke up at 7 yesterday and spent the whole day stressed out trying to get to her. She thinks everyone including me wants her to die. Sigh

8 Upvotes

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u/Atlantis_442022 3d ago

Suggest you and your dad meeting with the palliative care team. They can help you out with the consideration of an inpatient facility. We know what we are capable of, and not capable of, when it comes to home care. We are usually not medical professionals. We are usually working full time. We are often not equipped for psychological and physical full time care of a very very ill person.

Have grace with yourselves. Be honest with the palliative care team. 🩷💚

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u/RoomEquivalent1 3d ago

Yeah I think hospice definitely will be best. But she’ll yell at us for abandoning her tho :( this is so hard

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u/Atlantis_442022 3d ago

Cancer can ruin families. It is absolutely evil like that. I would imagine that having her at home would possibly tear you and your father apart in many ways as well. Which she would not want under normal circumstances.

I also imagine what she’s envisioning as “going home” is not likely reality. Even home hospice nurses only stop by here and there. The rest of the feeding, cleaning, pain management, diaper changes, mental health crisis will be 100% on you and your dad if she’s home. I personally worry about that a lot when the time comes for my partner. I know that’s not right for anyone but it’s so hard.

Sorry you are going through this. 🩷💚

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u/RoomEquivalent1 3d ago

She’s calling everyone she knows that she wants to go home. My dad is going to flip when he gets here and sees her coworker showing up. I definitely think having her at home would tear us apart. I’ve only spent a day with her with her in delirium, I already can’t take it. She’s paranoid and agitated. So frustrated. This fucking sucks. I didn’t think end stage delirium is this bad

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u/Atlantis_442022 3d ago

It sounds like her palliative care team will recommend inpatient care. That behavior is beyond normal management.

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u/RoomEquivalent1 3d ago

10000% we are not equipped to deal with this. I feel so bad we can’t take her home. I wonder if I’m being selfish (I know I’m not but the guilt ya know?)

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u/missmypets 3d ago

You are not being selfish. You've learned what your dad has gone through 24/7. Neither of you have the skills to manage her outbursts and her care. It is safer for her (and both of you) to be in a facility.

Caring for someone in this condition can destroy you health. You and dad can't help her if you're sick and worn out.

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u/Kimmus2008 NSCLC 3d ago

They can do hospice at home too.

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u/JustDenise 3d ago

I am so sorry you are going through this and I know how difficult it is to be where you are. My husband died last July from SCLC after a 21 month battle. He was transferred to inpatient hospice after a four 24 hour days awake with terminal agitation. I was not prepared for that at all. I was however very blessed with great palliative and hospice nurses. They took such good care of us. The medications were delivered to our door same day. Sometimes as late as midnight. They made sure I had enough. Unfortunately my husband could just power through all of them.

Then in June my ex husband of 26 years and father of my children was placed on hospice care but was unable to qualify for inpatient so I brought him to my home. (He had colon cancer since 2020 that metastasized throughout his abdomen.) For 10 days we supported him as he passed peacefully in his sleep.

As hard as the decision is to leave them impatient or bring them home the reality is it can go fast or slow just remember these will be your last memories and her last memories. Your father is right to be scared and all you can do is support him the best way you can.

I wish you strength and peace. 🤍🤍

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u/RoomEquivalent1 3d ago

Insurance doesn’t cover room and board for facility, so we are doing hospice at home first. This sucks man. I just wish she’s comfortable. Why is that so much to ask?

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u/cavs79 3d ago

I’m so sorry! That sounds so hard to deal with.

Is your mom open to hospice? They could help give her meds to calm her down and keep her comfortable.

Home hospice can be a great thing but it’s also mentally exhausting and traumatic. The nurses only come once a week or maybe more depending on how close the patient is to passing. But they don’t do a whole lot and the rest of the time it’s on the family to do the feeding, bathing, giving meds every hour or hours. It’s exhausting.

My brother wanted to pass at home and that is where he passed. I was with him holding his hand as he died and I can’t get it out of my mind. Although peaceful it was traumatic to me and I just can’t forget it. Watching what the body goes through as it shuts down over a period of days is terrifying to me.

I’m glad I was there for him but it’s an experience that has left me very upset and traumatized. I’ll never be able to get over it.

I think this is something you and your dad will need to discuss and decide what is best for your family.

Personally, I would choose to go to a hospice facility. After this experience I would never want to put my family through this again. I almost feel like Home hospice is cruel to family to have to witness everything.

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u/RoomEquivalent1 3d ago

We got home hospice - 1) mom wants to pass at home and we have to respect her wish 2) insurance does not cover room and board at facility.

It is absolutely exhausting. I’m seriously worried for my dad’s wellbeing. I cracked a few times today when we tried to bring her home. The hospice team will send bed and wheelchair to us so at least shuttling her around the house will be easier.

I think the hospice team told us when she’s really close we can come in for inpatient, but l will cross that bridge when I get there.

No one prepared me for the end stage delirium. This is fucking awful and heartbreaking to witness. Everyone should be able to die with dignity. I know I’m preaching to the choir here, but seriously fuck cancer for eating people’s brains from the inside out. Like fuck cancer. None of us is prepared to witness a loved one deteriorate to a shell.

I thankfully have a good support network and regularly seek psych help. I’m going to try to push my dad to get a therapist. I get that generation doesn’t believe in mental health, but this is too much. I seriously worried he’s gonna commit suicide right after mom’s passing.

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u/missmypets 1d ago

The hospice may have a social worker your dad can talk to.

Playing easy listening music from my mom's early adulthood helped keep her calm. It's worth a try.

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u/RoomEquivalent1 1d ago

They def do, but that requires my dad to believe in mental health 🥴🥴🥴 (dark humor is how I cope) I mention there’s usually grief counselor available but he said maybe later