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ramblingman Asked June 2013

With lung cancer and its progression, is it normal to go from basically independent to 100% care in 4 hours?

Two weeks ago I took my mother to the Doctor for what we thought was laryngitis or maybe bronchitis and her doc put her on steroids and antibiotics, well after 4 more days she wasnt feeling better but it was sunday so I took her to the ER where after a couple of hours it was determined she has lung cancer that has metastisized to her liver bones, the hospital then transferred her to the nearest real town which was las vegas where she stayed for 3 days and had a biopsy done. I picked her up took her home and she was able to walk talk, do for herself mostly like usual. The hospital gave her a script for oxycontins which i filled for her and from there it went crazy.. next thing I know my mom is way worse, hospice comes over and starts up care for her and put her on morphine, stronger oxycontin, changedher fentynl patch from 25 mg to 50 mg and a few other drugs.. this was all a matter of 2 days time with all the drugs since starting the new drugs she cannot hardly walk most of the time with assist, she can hardly open her eyes longer than a minute before falling asleep, and basically she is completely out of it. Ive asked the nurses about it and they tell me this is how lung cancer is, but they never saw my mom before being on all these drugs, that 4 hours before taking the oxys that she could take care of herself.. now shes basically bedridden and thats all they have ever seen of her...they told me it would be cruel not to give her the pain killers and stuff, but she didnt need anything other than her fentynl patch and ibuprofen for pain until the day she left the hospital,..any advice?

62yearoldchild Jun 2013
Ramblingman, my mom died of lung cancer last October. Never smoked a day in her life, my dad quit 35 years ago, never around second hand smoke. My mom had a cough for at least a year. Finally my dad took her the a**** doctor they had in town. "Oh she's just fine, a little pneumonia." My dad bought off on this, he had a "don't ask don't tell" relationship with the doctor, trying to keep independence. Well my mom kept "having pneumonia" for several months and kept ending up in the ER, she was in skilled nursing by now (she had Alzheimers too.) I live three hours away, got a call on a Saturday that mom was going to the hospital, couldn't eat, very disoriented, etc. I noticed on the nurses chart they were giving her morphine (for pneumonia???) Packed the bags and took my father up to Paso Robles. On Sunday, the hospital released her back to the nursing home, as I was leaving, the head nurse said they would do everything they could to make her comfortable, does this mean hospice I wondered? I mentioned the morphine, she told me dad had to talk to the doctor. He finally did a week later, they had done a biopsy but the doctor never told him she had cancer! We were back immediately with the rest of my family and she died four days later in my arms. My husband, sister and daughter were there. Thanks for letting me share this life event. I will always wonder if my dad had been more proactive instead of stubborn, and had they had a caring doctor who wasn't looking to pad her pocket for the ten years prior, how things would have panned out. Now my dad is with me and I can't talk about my mother because he gets upset. . .feeling guilty perhaps, I know he is still grieving and is depressed, "It wasn't supposed to be this way."

ramblingman Jun 2013
I am so amazed at all these wonderful answers, even though u have only a limited look at my situation you all have nailed the scenario very nicely. My sister and I have decided to not give her any of the new drugs (morphine,oxycontin,ativan) and see how she does, unless of course she acts like or says she is in pain. we did this yesterday during the day and she wasnt in any pain all day, she even let me put her in a wheelchair and take her and her dog for a "walk" down the street and around the park for a few minutes, which she loved and so did her dog although i had to carry him for awhile then she had to in her lap (the same night she went in to the hospital he got really sick and i thought he was going to die, spoon fed him water for 2 days till mom was ok and i had someone else here then to vet he went with heart issues and fluid in stomach).
I just took a nap and woke up and today mom is talking to me and understandable, still extremely tired which im guessing is her liver issues possibly shutting down. She asked me to find her title for her car and house to sign over to me also wanted me to take care of getting a poa in place today. This happened so fast with no warning nothing like that had really much been talked about in the 6 years ive been helping her and taking care of her and her me. I have alot of anger issues built up towards my moms identical twin sister whom lives 3 miles away but has only visited maybe 6 times in the past 6 years and towards my older sister who was always moms favorite and the "golden" child me of course being the black sheep of the family, the trouble maker, former drug addict, basically in my past i was kind of a pos. changed now of course and the fact that my mom had to have me be the one caring for her because noone else would makes me so sad for my mom and that much angrier with them, she deserved better than me. Ive found out that her original doctor saw a spot on her lungs 2 years ago but told her it wasnt cancer not to worry about it, then in the past 2 years her doctor was switched 3 times due to them leaving the town or office the insurance company would pay, her latest doctor before the hospice one said hes pissed off that this info wasnt in her charts and that he found it in the computer but it was never transferred to her records, he told me to tell my mom hes so sorry and seemed genuine enough to me about it. I used to be a EMT I years ago and was a cna for appx 10 years in what seems a lifetime ago, so when all of a sudden my moms husband left her and wanted a divorce (she was sick in hospital 6 years ago diagnosed with emphyzema when he told me to tell her not to come back to mexico where they lived) so it seemed only natural I would move to nevada and take care of her and have done so for the past 6 or so years. Im angry because noone else would sacrifice anything for my mom, her sister tried to take care of her at first, but they got in an argument and my aunt literally threw her out on the street. that was the day i left my life in colorado, my new gf whom i dated in highschool, my cna job and everything i owned and moved to pahrump where she was. so I have so much built up anger over how my sister would never visit, and the one time she did she got a hotel in vegas and when my mom went there to see her my sister left my mom in the hoteel all night while she and her boyfriend went out all night with friends of her boyfriends who live in vegas. My mom deserved so much more and now that shes dying yeah they are here, but im so mad that they wouldnt listen to me when i said stock up now in mom while you can and took away from her the love she should have been getting from them. They have ganged up on me now and have tried to take over care and everything for my mom, but she told them she wants me in charge, to have the poa for her what I say is the way things will be. I dont show how i feel in front of my mom toward them, but they constantly are saying things in front of her and even though she is mostly asleep i know she hears them and in any other situation I would have thrown them out days ago..I just grin and bear it best i can and stay away as much as i can (which sucks because i want every minute i can with my mom, just not with them around).
Im guessing you see why I chose the name ramblingman for my screenname, I have alot to say about things I like to blame it on having morgellons, but in truth I just have noone to vent to, so im doing so here,,sorry for that. Yeah I have had morgellons for 7 years now, although ive been symptom free for last 6 months, so thats just one more issue im dealing with, having whats considered a delusional disorder by most of the medical community (which btw its real, its terrible, its isolating and its really growing fast in all parts of the world.) My biggest fear was i would give this to my mom. luckily she never got it. but thats another story. lol
I want to thank each of you for letting me spill my somewhat sorrowful guts on here, i wasnt expecting the kind responses and answers I got and really each one had something in it that has made me feel better or understand better what i need to do. Thanks for letting me fill up 20 minutes of space with 5 minutes of my life, it means alot to me.

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Eyerishlass Jun 2013
We had hospice for my dad and they were wonderful. I work in healthcare and deal with many end-of-life patients and I have never seen an unethical, drug-happy hospice worker. I don't doubt that there are some hospices that are better than others, we're all human and nothing's perfect, but I have yet to see anything alarming. Just my two cents.

joycews Jun 2013
First off, I am so very sorry to hear about your mom and hugs and prayers to you.
My FIL does not have cancer but is 86, diabetic, renal and heart problems, dementia and balance issues/cannot walk well. We went through this with my FIL and hosparus. He had visiting nurses come in and a 2 page medication list. They had little communication with us except when they used his supplies for other patients and texted us to go purchase more (yep, found that out later). He had infected sores on his legs that were getting worse and one nurse would wrap them so tightly, he cut the bandages off.
When he put a gun to his stomach, it was then they called in hosparus. It was a waste of time, insurance payments and a pain in the neck to the entire family. We would have been better off with a crack dealer on the street. The first thing they were concerned about was doping him up and keeping him half-way loopy. They never touched his legs and said, yeah -- they look wrapped okay.
My FIL could not uninate and was cathing himself and finally asked to go to the hospital. The ER doctor said he had never got so much fluid off of a patient. He spent a week in the hospital, one week in a geriatic mental facility and now is in the rehab unit of a nursing home. Last week he wheeled his own self down the hall in a wheelchair.
Be careful with these groups. I have some other opinions on them I will keep to myself but I am wary of them. After my experience and hearing what some other families have went through, I would have to be deperate to call them in for any family member in the future.

Perseverance Jun 2013
I am so sorry for what you are going through. IMO, there is something fishy with the ER doctor also being the hospice doctor... Please DO call her old doctor to get his help. Do you have POA? I agree with other poster, she may be sundowning, common for dementia/alhz patients.

vstefans Jun 2013
She may be having a bad reaction just to morphine specifically, or could be "sundowning." Maybe just a dose of oxycodone at bed time would do better for her. And it is not wrong for you to talk to her old doctor - if the hospice people won't listen to you- or to want her to have some quality time and ability to function even though her time is short.

ramblingman Jun 2013
Her doctor had nothing to do with hospice, hospice was referred by the er doc that discovered the cancer (coincidentally hes the doctor for the hospice outfit he referred her too and now her doctor i guess) so my mom called hospice and set an interview up for the next day after she got home, i didnt hear them come but walked out and mom was already talking with them (saying this just so its understood that she got the door let them in, still doing for herself) so we signed up with them and they told us not to deal with her old doctor anymore, that there doc would take care of everything,. they asked my mom about pain (the intake counselors) and mom said her shoulder hurt a little.. so the next day nurse came and ordered stronger oxycontin that what the hospital gave her and also sublingual morphine. later that day i went and got the medications, gave her half of the amt of morphine they prescribed and that was the last I saw of the mom she was before the meds.. she is worse at night and i cant even understand what she is trying to say, but during the day i can and she can walk with my assistance only but at night she cant even do that,... i figured its the morphine, as its only given at night, shes only saying shes in pain when shes on those drugs,..yesterday my sister and i didnt give her anything for over 12 hours with no pain.. the doubling of the fentanyl i think covers the pain, but then at night she just changes and starts yelling out so i ask if she hurts and she says yes so i end up giving her the morphine and she just gets worse..every 10 minutes shes yelling out and is just out of it. God i know im just rambling, but im so confused. the way she looks and acts i would be surprisd if she last another 72 hours. i would love to talk to her doctor, but hes yet to see her or talk to me or her since the first night in the er.. i feel in a way that hospice actually has made things worse unintentionally but i just dont know. sorry for making no sense at all im just at a loss, my family thats here now to "help" are driving me nuts lol, 6 hours sleep in 5 days, dying mom, dying dog, and family that im mad at because for the past 3 years ive begged them to come visit mom, now they are here trying to tell me what she likes and doesnt like. ugh.. i keep telling myself i cant do this its toomuch, but knowing i have to do it, but i cant but i have too...lolllthis sucks

PaulaK Jun 2013
First, Ramblingman, please know how sorry I am to read about your mother's diagnosis ... how difficult this must be for you all, to have had no inkling one day that your Mom has such a serious illness and the next to find that she not only has lung cancer, but that it has metastasized to such an extent. You must be absolutely reeling. Your mother is lucky to have a child who is willing and able to advocate for her even in the midst of so much shock and grief.

I agree with Perseverance that the first thing to do IS to talk to her doctor directly. It does sound possible that she may be being over-medicated ... but that being said, I must say that I have, sadly, known a few situations now where lung cancer or colon cancer was diagnosed suddenly when the unsuspecting patient was already at a late stage of the disease (as you know all too well, some cancers are very nasty this way ... basically no or extremely mild symptoms until metastasis has already occurred). Sometimes, the time between diagnosis and death is shockingly short ... as in a matter of days or a couple of weeks. I don't know if this is the situation for your Mom, but I mention it just because it's possible that if her underlying disease is extremely fast-moving and aggressive, it is possible to see major decline in a seemingly short time period.

One of the most important things hospice can do for a patient in such a situation is to help them manage pain. Unfortunately, one of the common side effects of many effective painkillers is that they make people sleepy or "dopy." So while it IS possible that she is being over-medicated, and that your doctor may recommend pulling back a bit on some of what she's getting, it is also possible that her underlying disease has progressed to the point where sufficient pain medication is vital, and the tradeoffs must be weighed. Perhaps it would be worth dialing down the pain meds a bit for a while to see if her awareness/cognition improves significantly ... and if so, then to ask her to evaluate her pain and decide for herself what balance she wants to strike between managing it and staying as lucid as possible? But of course, don't do this without her doctor's okay.

My best wishes and sympathy to you and your Mom for what you're going through right now.

My mother battled breast cancer for a year and a half, and was in a fair amount of distress by the end of her life.

Perseverance Jun 2013
Sounds to me like she is over medicated.. I'd call her doctor directly.

Was hospice involved with your Mom before this event? I ask, because they just don't show up - the family (POA) needs to meet and sign papers for hospice to get involved.

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