r/lungcancer • u/RoomEquivalent1 • 6d ago
Seeking Support Mom is going to hospice
Mom was hospitalized last Friday because her lungs have water and they needed to drain it. She hasn’t left and it’s unlikely she will now. She got pemetrexed Tuesday, but today the doctors say her cancer is likely so advanced that continual treatment will be dangerous (for context, she can’t even lie down because of the pain despite being on morphine). She can’t even get an MRI because of the pain, doctor thinks it’s likely her cancer has advanced far enough in the brain.
She also isn’t really eating right now and is either delirious or super sleepy. I got in a fight with my dad because I know my mom wants to be at home but dad wants her in a facility because he is afraid mom will eventually develop resistance to the oxy dosage and we won’t have morphine injection at the ready (he’s anxious - I can’t; he’s afraid she’ll develop resistance in the middle of the night and we won’t have anything. I mean fair but mom wants to be home for her last days???)
It’s so frustrating. Fuck cancer man. I think I’m literally going to die from a broken heart. I’m the youngest in my work / friends group but is the first one going thru death of a parent. So unfair. I saw how this disease ate my mom from the inside out and left her a skeleton with only skin and bones. Fuck this man.
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u/Atlantis_442022 5d ago
I see both sides here. Offering a different point of view as someone in a similar role to your fathers (although I am the wife 😊)
Home care can be mixed. Most of the responsibility is still on the family member with hospice coming to visit to check in. It is not like the movies where a caring nurse sits by the patients bedside catering to their needs.
He knows what he’s capable of managing and what his limitations are.
Not all hospice providers are equal. You may get the best one. You may get an ok one or a terrible one. Changing can take time and during that time the patient often suffers.
In a full time facility there are teams of people available 24/7 who are trained in pain management and end of life care. From a risk management perspective that is the most likely way to prevent pain and suffering for the patient.
We also never really know how long this will take. Physically and emotionally caring for a dying loved one 24 hours a day for months at a time is often not sustainable.
Lastly, I think often when the patient says they want to go home they are not picturing the pain at night and vomiting and the spouse cleaning them after diaper changes and the suffering extended to the household. We all want to go home to our comfort zone. But going home while dying is not that zone. These are also the last memories for the caregiver. And these are what they will hold with them when the person has passed.
These aren’t easy decisions to make. 🩷💚
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u/RoomEquivalent1 5d ago
Thank you for your perspective - it does soften my anger aNd frustration towards my dad’s outbursts a bit.
Yeah, it’s really a draw of luck in terms of caretakers. I get it - he is tired. He’s been taking care of mom for over a year. I just hope we can bring her home ahead of time when her time does come.
Fuck cancer man
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u/Atlantis_442022 5d ago
Agreed. This is how cancer can destroy families if we let it. It’s hard to give ourselves and others grace sometimes.
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u/RoomEquivalent1 5d ago
My dad always has a bad temper but yesterday I really lost it and just asked him why he’s yelling at me like I’m the enemy. I’m not a punching bag. I get he’s hurting too, but why say I’m shortsighted and myopic and don’t consider the bigger picture .-. This situation always sucks, I’m not fighting against him ya know? .-. Doesn’t help my parents generation doesn’t believe in mental health because he def has anxiety.
I get it’s hard. I get he’s tired. But Gdi don’t take it out on your kid??? Sighhhhh fuck cancer
I’m sorry you are going thru this too - I hope you can get some rest in between. Caretaker fatigue is real, but I don’t feel like I can complain because my mom is fighting cancer all on her own ya know? I know give yourself grace and all that but doesn’t feel right to complain about me being tired when my mom is literally dying fighting a losing battle
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u/Atlantis_442022 5d ago
I totally get that. When people tell me to remember to take care of myself I try not to laugh. A massage appointment is not going to fix this.
That said, you are not alone. Cancer is evil. It can bring out the best in all of us but also the worst of all of us too.
What I try to focus on is this: I have absolutely no control over anything other than my own actions and reactions.
Knowing that, I do what I need to do so that I don’t live with regret later. 🩷💚
So even when someone is hateful or impatient or demanding or infuriating. I respond with love. That’s how I want to remember this 5, 10, 30 years from now. I want to be proud of what I did and what my part in it was. No matter what anyone else said or did. And no one can take that away from you.
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u/RoomEquivalent1 5d ago
Ahahaha I get people mean well but I can’t help but be cynical when I hear “take care of yourself”. Like ok?? You try if you are in my position.
I got jaded to a point now where I say, oh you said let you know if you can help? Great - send me money. Funerals are expensive. :p
I despite performative caring. I’m taking up people’s offers “to help if needed”. Yeah I do need help - help with funeral expenses. Are you going to keep your promise or eat your words when I do reach out?
The only bright side from all of this is I realize I have more close friends than I thought :p
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u/CrazyGirlAngie75 6d ago
Usually towards the end there is always a nurse there, I'm almost positive. That's all worth talking to Dr about and home hospice, at this point it would be worth asking if they would prescribe her morphine, with the oxy. It's been a long time since we had hospice in our house but they used to do long acting like morphine on sublingual so we'll drop by mouth I don't know if that's even an option anymore.
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u/RoomEquivalent1 6d ago
I will ask. Thank you. I feel like my dad is overreacting a bit and doesn’t want to ask doctors for options and stuff. Typical macho man who thinks he’s always right and does not allow any dissent
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u/missmypets 5d ago
When my mom went into hospice, they gave us an emergency pain kit. It contained liquid morphine which we were instructed to put on her tongue in the event of severe pain.
Do you live with dad? Would you be able to spend the nights with her to change the diapers, dress her, clean her bottom of fecal matter, give her a sponge bath? She also insisted we move her, despite the great pain, to a commode. My mom hallucinated. She would try to get out of bed and wander in the dark. At one point she refused to use the commode or toilet and tried to climb on the sink to pee.
A hospice facility may be able to give her a private room. She could fill it with things from home that she wants around her. It's an alternative you could consider.
Sending hope that they find a way to give her relief. It may be that she needs to be on a strong dose of morphine and sleeps most of the time. May her landing be gentle.
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u/RoomEquivalent1 5d ago
I don’t but I’m going to move back home for a bit. I actually stayed at the hospital with her last week, rotating night shifts with my dad. I’ve been helping her with commode and bed pans (lol so I’m past that - this is some serious mother-daughter bonding experience - humor is how I cope).
At hospital she’s already mostly sleeping and my dad told me she hallucinated a bit yesterday. I know deep down she prob doesn’t have long. Her overall pain is managed right now thanks for stronger oxy dosage. She’s v constipated tho from the opioids (you win some you lose some). I think doc will prob recommend some facilities this week so, we will see. .-. I just hope when her time does come we can bring her home a bit before that.
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u/CrazyGirlAngie75 6d ago
So sorry you are going thru this. Prayers for you and your family. My mother will be here at some point soon she wants to die at home as well and I was all for until you had said she couldn't get morphine at home. I see both sides but I thought if you had a hospice nurse at home they would administer that for you. I'm not sure if that differs state to state.
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u/RoomEquivalent1 6d ago
I said that too, but my dad is like “what if she gets pain at night who’s gonna come???”
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u/RoomEquivalent1 6d ago
I feel like that’s a veryyyyyuy specific edge case, but my dad is super anxious and does not believe in mental health so, there is no way convincing him
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u/Lucky_Watch_5062 1d ago
So sorry your Mom has been given this news and that you’re having to deal with her loss while she’s still here in the physical and in horrific pain. Maybe your Father just isn’t ready to deal with everything that’s in front of him so just keep doing the best you can and showing up means the world to your Mom. Love her all you. And while she’s still here and able to know and receive it! Hopefully things will make a change and she will be granted her wish to go home where she feels at peace until she transitions to the next life. Praying for you and your family!
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u/RoomEquivalent1 1d ago
We are home now (home hospice). It’s really hard watching her physically being here but not mentally (you nailed that one). But at least she’s home and not in that white sterile hospital. We got the comfort care kit with morphine and lorazepam so hopefully her pain and agitation are managed (we don’t really know, but she’s sleeping most times so that’s good?)
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u/ran44445 5d ago
I am so sorry for what you are going through. My mom left the hospital early February on hospice at home. She wanted to be at home. Despite the doctor saying she had one month to live we had the gift of having her for six more months. She passed a couple of weeks ago. As the disease progressed the morphine allowance went up so that she was never in pain and it could alleviate her shortness of breath. When she did pass she did so in her sleep. The hospice nurses are amazing. They will assure your mom has what she needs to be comfortable. I am so sorry. This is all so difficult. I miss my mom so much but I am glad she did not suffer at the end. Sending you and your family warm thoughts.