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MIL has S4 lymphoma. In the past 15 months, she has failed two lines of chemotherapy and failed radiation. It's in her head now (the lymphoma) and they were going to do a stem-cell (!) treatment on her, meaning a month in the hospital plus loss of all her immunity. Instead, they decided she might qualify for a brand new 2021 drug requiring only one-week of hospital stay. Then two ping pong ball sized tumors were found in her lungs, so now she's waiting for a biopsy on that. She's been in ER twice in the past 10 days. UTI, and now a reported seizure.


Dad meanwhile is in the hospital having had two thirds of his small intestine removed. About 14 feet. He is fed by IV currently. Should he recover, there are more heart operations and then a secondary knee replacement on deck.


I'm mad because I think the doctors are offering false hope at this point but we're all primed to "keep positive."


No, I'm not saying give up. But to me this looks like futile health care.

You did not mention ages. There comes a time that we have to realize that life here on earth is not forever. You do what you can and the doctors do what they can to help our loved ones continue to live a good life. There is a time that we will all die.
I believe that God is in control and will carry us through our lives to the day that we will meet Him. That is what carries me through taking care of my Mother for 18 years and now for her younger brother. Burn out is very real. Get help with a counselor, pastor or social worker.
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PeggySue2020 Nov 17, 2021
She's 76 and he is 80, but they function at this point as people a decade older on every physiological level.

I wish the doctors would just treat them as such, instead of hinting/pretending that 80 is the new 70 or whatever. Because it's not for them.
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Whelp. She had her biopsy, and there was an air embolism introduced. She's back in the hosp.

The dad is supposed to get out of the hosp today, one day after he started drinking broth only and using his bowels.

The SIL is piling it on about how she can STILL take care of two old people NO PROBLEM. Toxic positivity.

SO told me this and I just bluntly said that his parents, himself and Brother have to have a care plan developed. Because, I said, it will never get better but as we slowly get worse, we need people!

If they want to make their house a personal NH then staff it with the correct personnel. This has nothing to do with filial obligations, it has to do with skill levels that none of us possess. If this is their plan to have their own private NH environment (who wouldn't want that right) , then they have to staff it with qualified professionals. Who are not us.
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lealonnie1 Nov 17, 2021
Good Lord, when it rains it pours, huh? So sorry your MIL now has THIS to deal with also!
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Ask the doctors - away from your parents' hearing - what their odds of survival and expected results after treatment.

It appears you may be struggling a bit with the loss of your parent's good health. Dr. Kubler-Ross outlined the usual stages of loss and grief:
Stage 1 - denial - the feeling that this situation isn't real.
Stage 2 - anger - feeling like this isn't fair or feeling cheated
Stage 3 - bargaining - all kinds of ineffective treatments to bring back "normal."
Stage 4 - Depression - feelings of regret and sorrow when it all feels too real
Stage 5 - Acceptance - feelings of peace and being OK with current situation
I suggest talking regularly with to a good friend, a minister or a therapist may be good idea. They can help you process your emotions and thoughts as you go through this difficult journey.
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Gaylefarley Nov 17, 2021
Very helpful. Thank you
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I have had 2 rounds of my mother being placed on palliative care only to be removed from that as she has rebounded although compromised. Literally both times I was told she could not recover from all that was going on with her yet she did. Honestly I can't say that was best but her body would not give up. She has lost so much cognitively which is very sad. We constantly have to repeat ourselves to her. I just do that over and over without alot of thought yet I come away feeling sad. She is 91. She didn't take good care of herself for years. I never thought she would make it this long. I would not pursue any extreme methods as she is bedridden with a host of ailments. I do choose medications to help her live with less pain. I hope you find solutions for your situation.
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What do your parents think?
I agree that a lot of "end of the line" health care is futile, unpleasant or worse for the patient and achieves nothing except maybe a few extra weeks or months.
Against that if we never did these treatments we would never discover which ones are worth developing further or are actually worthwhile.
It should however be down to the patient to decide if they want to carry on and maybe help others in the future, or maybe just have a little longer themselves. Whilst it can seem futile to us or even unkind we have to let our LO decide if they want further treatment.
In some ways it is where you in the US benefit over us in the UK - here unless it was a definite trial, which we would be told about, they would call a halt at the point they felt they were spending NHS funds for little if any gain. In the US because you or insurance are paying they will keep going as long as possible - I'm not actually sure that is an advantage of the system, but it means your parents get the choice of what treatment they have.
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Twelve years ago, my husband, who is now 69 years old, was diagnosed with stage 3 colon cancer. He went through radiation before surgery in order to shrink the tumor before the surgery. He also saw an oncologist, who ordered a light chemotherapy. He did not lose his hair, but we were amazed at how it had a tendency to reverse healing of minor, unrelated cuts and scrapes. The surgery to remove the tumor was very radical & extensive. The surgeon had to remove his rectum and seal it closed, then perform a colostomy. After the 2 horrendous months of healing, the oncologist wanted him to go through some more chemo just to be on the safe side. Even though his report after the surgery came back showing NO cancer cells, the oncologist just wanted to be on the "safe" side.
I researched the effects of the chemo the oncologist wanted to give him, and found out it would most likely leave him an invalid for years. He opted not to do it. That was almost 12 years ago. He is still working fulltime, does all of our gardening, and so much more that he would NOT have been able to do if he had taken the advice of the oncologist. When we told his surgeon the decision he said, "I was hoping you would say no, but I couldn't influence you in that area." The radiologist and the surgeon saved his life, the oncologist would have killed him.
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Reply to Debstarr53
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Some doctors push quantity over quality.
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Oh yes...all the time even though my mother is nowhere as sick as ur MIL or dad and yet I ponder at the point of her life now. Mom is good because I'm doing everything for her, bathing her, her laundry, putting on movies & making sure she's safe and comfortable even as my life goes downhill. She's physically ok but the dementia behavior is driving me nuts. I do get breaks in my day and get away from her but I mean, how long is this moderate stage going to continue??? Thanks for letting me vent:-)

Sending you mental strength vibes and hugs to deal with your LOs.
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I’d like to offer a book recommendation - Being Mortal by Dr. Atul Gawande. I am now on my third reading of this book, and it has helped me enormously in managing my 94 year old mother’s care. Dr. Gawande talks about how little training physicians have historically been given regarding end of life discussions. This creates a greater likelihood that a doctor will opt for the easier conversation of what treatment to try next, especially since modern medicine has an almost endless supply of treatments available. I think this is changing. My mother has an incredible cardiologist who suggested a DNR and was very straightforward regarding exploring hospice after a recent hospital stay. It doesn’t seem like you have that, but I’m hoping this wonderful book will provide some help. All the best to you.
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When offered treatment plans by well meaning drs, most people think "Oh, I have to do what the DOCTOR says".

No, you most assuredly do NOT.

2 of my kids are Drs and I know they have given patients treatment options with the caveat that they may not work, they may make you sicker, they're hella expensive and have poor outcomes, etc., but the patients usually look up with adoring eyes (well, I'm not sure about that) and say "whatever you say, Dr. R". And Dr R comes home and is unhappy b/c he's just doing his JOB. His OPINION may differ completely, but he is required to give options for care and let the patient decide.

Everyone's death is personal to them. Hard to handle, very often, for family. Sad when someone can't die in peace, but it happens.

My FIL fought death with everything he had. He was actively treating skin cancers right up to the day he died of leukemia. My dad gave in to Hospice and the peace it provided about 2 months before passing from Parkinson's. Each made their own choice.

Being frustrated at the futility of a person's choice on how to die is kind of pointless--but I do 'get it'. We actually have so little control of what our lives are, how they end. Just try to be patient with your LO's. (easy to say, hard to do).
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The medical industry is focused on keeping patients alive, until they're 100+, no matter WHAT. That's the goal. They're not looking at the fact the person has so many pre existing conditions to begin with, or side effects from the treatments they're being given for the cancer, that the quality of their lives is going to be SO compromised if they DO live, what on earth is the point in the 1 or 2 year extension??????????????????? Pisses me off to no end, in case you can't tell.

We have a good friend who's in his early 50's with lymphoma from Round-Up. This poor man was on his death-bed 4x, and told by his doctors to take all the opioids he wanted b/c there was 'no hope' to save his life. Yet they pulled some rabbit out of their hats each time and they DID save his life. Now he's okay, believe it or not, but........and here's the big but: all of his teeth are rotted out of his mouth to the point where you can't get near him for the stench of his breath. And, he has lymphedema in his leg to the point where he can't stand up for more than 20 minutes at a pop. And he's 55 years old. Yes, his life was saved by modern medicine and a bone marrow transplant (which was what ultimately worked with getting the lymphoma into remission), but it took a big toll on him and on the quality of his life at a YOUNG age. What will all these treatments do to your MIL who's 20+ years older than our friend?

At some point, I think elders have to say ENOUGH to all the treatments, especially when heart surgeries, knee replacements and IV feedings are involved down the road and long term. And, when drastic cancer treatments are going to wind up buying them a few more months of misery, that factor has to be weighed into the picture and a decision has to be made. Because the doctors will keep trying and trying and TRYING, especially when insurance is paying the bills.

One thing I'm eternally grateful for is that my father died very quickly; he had a brain tumor we were unaware of until he took a fall and broke his hip. He also got a skin tear on his eyebrow that required an MRI which revealed the tumor. He only lived for 10 months afterward; the tumor grew and it ultimately killed him quickly without him having to withstand ugly treatments or brain surgeries, etc. He was 90 at the time and too old to undergo brain surgery, so there were NO choices for him, thank God. My mother, on the other hand, will be 95 in Jan and is dying a slow and horrible death from advanced dementia & is now refusing to take her pills so her mood is horrendous, on top of horribly confused. She's wheelchair bound and petrified to die, to make matters worse. My father wasn't afraid to die and didn't fight it at all. My mother will go down kicking and screaming every step of the way, making things difficult for me (the only child) and everyone trying to make life better for her. That's the way it goes sometimes, isn't it? To say I'm frustrated is putting it mildly. :(

I'm sorry you're all going through such a difficult time and I pray you can all reach a conclusion that you can live with. Sending you a hug and a prayer for peace.
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rovana Nov 15, 2021
You make a good point - it is not really up to the doctors, in a sense. The patient has to consent after all, and become willing to just say no to take charge of their treatment.
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PeggySue2020 - I'm with you. My Dad has an incurable blood cancer and is on his 5th (maybe 6th?) treatment. He's 85 and as long as the oncologist offers another treatment, he'll try it, no matter how miserable he is (and he is). My grandpa died in 1966 of cancer and there weren't the many many choices for treatment then, so he died quickly. I think oncologists in particular are primarily concerned about keeping a patient alive - quantity of life over quality of life. We've seen a palliative care nurse several times but my Dad won't engage with her. I'm lucky that the treatment costs aren't an issue for my Dad (he and my Mom were super lucky with her retiree health care, thank goodness), but I'm frustrated and deflated by the oncology team focusing only on his blood and not on what his life is actually like day to day. Choosing to stop treatment (or not start treatment) doesn't seem to be in the oncologist's vocabulary.
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Ask the hospital social worker to visit with them to explain the importance of having documents in place. They only become activated upon incapacity.
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Hi Lizbitty. I wish they'd just build reply functions into everything as this is a answer to your very salient questions about what the doctors expect, if there is a care plan, etc.

SO has a brother who has a wife who functions as the day aide. This isn't necessarily philanthropy; she is paid more than the open market AND she sees the job as wholeheartedly saying "Yeah, MIL. YOU CAN DO THIS."

But she, the Brother's Wife, cannot do all this. She couldn't figure out how to get FIL his covid shot! We all got J&J and by August, I'm like, we gotta do something. We live near SF which allowed us to go top it up with Pfizer, first in the nation. And she took THEIR ONLY CAR to deliver Mom HER handmade lunch while we're all in the house with an increasingly anxious Dad.

Her reply, over speakerphone: "Tell them to cool their jets."

Yeah. I mean, excuse me?

She wasn't EVEN THERE the time before last that MIL had to go to the ER. She was "shopping" (i.e. meaning going home and petting her cats and smoking since their next door neighbors have said they disapprove. Well this is a SFR, not a condo, and those neighbors should have been told to FO if she was going to be an advocate and if she wasn't gonna quit.

She is attempting to inject herself into this whole family as the intermediary. Like, even before this, this was going on. SHE would pick the place we would all go to for Family Dinners, and SHE would pick the menu. SHE had her sister (whom no one has ever heard of) out for a solid month and tried to get us to pick up her shifts for free as she needed a break. She ain't doing any of this for free.
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Dear Peggy Sue, it’s a very hard situation for everyone concerned. I can understand that your parents’ very rapid decline and not-so-old years may make it difficult for them to grasp that the end is coming soon for both of them. And I can understand that you see things very differently, and think that the doctors are milking the situation for all they can get from it – from fees to experience with new treatments.

I’ve found (at work, in very different situations) that sometimes it helps to invent a similar situation, say what the (imaginary) people are doing and what criticisms they are getting. If I want to suggest something they could do themselves, I then ask my own clients why that (imaginery) approach wouldn’t work for them. When I’ve done it, often the client pulls the ideas to bits to ‘prove’ that they are different, but then finds something that they can relate to anyway. I find it easier and more productive to make the conversation about someone else. You might find this a useful way to get them talking about the options, and the pros and cons of different ways to approach things.

Regarding the doctors, remember that you can talk to them, even if they can’t breach confidentiality by talking to you. Say that you suspect they are over-servicing and ask how to get a second opinion. They won’t be happy, but it may make them a bit less gung-ho. And if they bring in a second opinion, so much the better! My mother’s oncologist was doing just this when more treatment would just postpone the inevitable at a high price in fees, discomfort and pain, so I know full well that you may be right.
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How old are your inlaws? Because for me that would determine how much I would do. MIL, sounds to me as long as she agrees to everything the doctors will continue to treat her. Until you know what the lung biopsy says, decisions can't be made. Looks like to me that the cancer is spreading. Unless she is given a good survival rate, I may just let nature take its course.

Same with Dad. One think at a time.
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PeggySue2020 Nov 12, 2021
She is 76; he 80. But the way they are now is more like a 85- to 90-yo.

She more than goes along with these plans. It's more like selective hearing where she just hears "well this may have a chance" as "this could cure my cancer."

It's understandable in a way, the illusion that things will just continue at home with the spouse if you can just both stay alive.

But it's just not that straightforward.

Not with this level of decline.

In 2020, she was jetting off with her friend to spend some time out of state independently, and he was driving himself to go volunteer. Now both need a chair to go see the other one in the hospital, y'know? Operations or some exotic new therapy proposed on a weekly basis?
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Explain to them that POA kicks in when the person is incompetent, not today. It's for when the $hit hits the fan. Other paperwork should also be in order. Will, living will, etc.

I agree that, at least for your MIL, this is futile health care. If it were me, I would NOT go though all this. I would get her evaluated for hospice care. I would want to just live what is left of my life and be kept pain free as long as possible.

The Dad, well how old is he? I would ask more questions. Pros and cons. % of how well the outcomes might be.
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PeggySue2020 Nov 12, 2021
The dad turned 80 this month. Besides his missing most of his small intestine and being IV fed right now, he also had a stroke last year. He also has COPD and AFIB.
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Wow, you sure have a lot of deal with. Do you have POA? I’m assuming you talked with them about whether or not they really want to go through it all? Are they cognizant to understand what they’re undertaking? My own parents are 75, and I’m not altogether sure they would want to go through all of that.

Have you tried just talking to them about what kind of quality of life they want? Never an easy conversation, especially with both parents.

I’m sorry that you’re in this position. My friend’s dad recently passed away after they found a brain tumor. He did the chemo and all of that, but it didn’t really do anything but make him sick as a dog, and the end was terrible.

Hugs, my friend.
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PeggySue2020 Nov 12, 2021
Thanks so much!

They have NOT given POA to anyone. They do not have dementia, so they don't feel they need it.

However, what they don't have is an articulated plan, such as when we reach X point then we want to go into AL, or at that point we hire someone with actual nursing credentials.
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