How can I be confident I am making the right decisions medically?

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My mom was diagnosed with follicular lymphoma about 6 years ago at 78 years old. She was treated with rituxin..and did ok fo a while. Then suddenly about 2 years ago she went to get up and could not move her legs. We later found she had 2 tumors on her spine which were radiated, which was successful, but it still left her predominantly wheelchair bound since then, and she now resides in a nursing home. She is niw 84 years old and had a recent pet scan which showed "progressive diffuse bone ? mets, involving ilium, pelvic bone and L-5" - bottom line, more lymphoma activity than her prior pet scan of almost 2 years ago showed. We considered a biopsy to see what, if any, treatment options there are, but her oncologist suggested waiting a few months in the absence of any other substantive symptoms and we agreed..at least at the time. He felt why take a chance with giving her any ongoing discomfort from a biopsy (either from spine or underarm), since she is feeling "relatively" well for her; and wondering if it morphed into an aggressive form of lymphoma if she would she want to be treated aggressively anyway..could she handle it, especially because she is in a wheelchair, dependent on nursing home staff for most, if not all, of her ADL? Of course, I am second guessing this approach now. I would love to hear from ANYONE who's been in a similar experience to just give me some support and guidance..doctors, caregivers, patients..anyone with something to share! Thank you!!

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I woke up (I'm in the UK) thinking about this: can you steer her round to talking about happy events and memories, get her to look back at a fulfilled life?

Ironic, really. So often we counsel each other to look forward to what we can change, rather than back with regret on what we can't. But at this point in your mother's life, it seems better to look back at the memories and joys and achievements that are hers forever, whatever is to come, than to look ahead to the unknowable.

I would also just check that there isn't some particular point that is troubling her. Bearing in mind it could conceivably be something she doesn't want you to know about - maybe ask her pastor to cover that base with her? And steel yourself not to be curious about it, too.
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My mother prays constantly Mally..maybe I will suggest the Bible for her, and pick it up myself. She constantly talks about God and prayer..yet is still so fearful of dying..that great unknown.
Cwillie I will check out that book..thanks!
Good idea countrymouse about a consult within her doctor's office. We are addressing her spiritual needs, mentally somewhat. Right now, I think I have the biggest issue..just being tasked with someone else's care, who used to take care of you, is so overwhelming to me. I wish it were easy, but I feel like these decisions will haunt me forever..although they are not all on me, I take the responsibility so personally it keeps me up at night.
Thanks all for your care and insight!!
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Another is the Bible; beginning in the book of John, probably. I find this comforts those of my circle of elderly friends and clients, for those that know the Lord, they lose the fear and have hope; those that don't have another chance to meet Him.
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A book that gets recommended a lot on this forum is Being Mortal by Atul Gawande, a very good read about how we make decisions as the end of life approaches.
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You want to be confident that you're making the right decision... Well. To borrow from Sir Humphrey Appleby: "- and when did you acquire this taste for luxuries?"

You've been presented with a choice of two very unattractive options. It only stands to reason that you're not going to be happy with either, and anxious that you might overlook some better, third one. Life is, I agree, an absolute sod at times.

My heart sank to my boots when I read that your mother is so afraid of dying. Without wanting to rub it in, I'm sure you're aware of what her prognosis is likely to be no matter what choices you make. So for that reason, I strongly second Barb's recommendation that you do what you can to address her mental state - and perhaps spiritual too?

By the way, if your mother has a good relationship with her doctor I wouldn't undermine it by bringing in another on your own initiative. Instead, perhaps ask this doctor, who sounds like a considerate and thinking one, if s/he would kindly bring in a colleague for a consult just for reassurance.
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I wish my mom could be as decisive right now..I don't want to make decisions based on emotion. I look at her fragile state and think how much more should she go through..just leave her alone. Then I think..why not help her if we can?? In all honesty I want her to get better than what she is..but I know she can't..so treatment would likely just further her suffering. She wants to be who she was YEARS ago..that's why she would move forward, but that outcome is not going to be. I am just so torn..by my heart and my head! 😞
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Thank you Barb..feels a bit better knowing I'm not the only one, that I'm not alone.
Life is so hard..why?
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Sf, I'm so sorry that you're going through the second guessing part of elder care. I think we all do.

I tried to separate out mom's anxiety and depression ( which were long standing) from her various illnesses and fear of death. Getting her seen by a variety of geriatric psychiatrists ( starting in Independent Living all the way to the NH) was truly the right decision for my mom. Antidepressants and mild anti anxiety meds allowed mom more good days than bad.
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I have thought about a second opinion..and maybe that's what I'll do. However, with all she's been through, my mom is comfortable with her doctor and she's been seeing him since her initial diagnosis 6 years ago. My mom is showing more and more dementia..and I dont always "truly" know what her wishes are. She at first wanted a biopsy, but I think she has limited understanding of what exactly is going on..she just doesn't want to have cancer..and when she was more well, before the nursing home, she did not want strong chemo, since she saw my sister suffer through treatments at the end of her life. I was on the fence..kind of leaning toward leaving mom alone for now because she did seem to be feeling well, so when the doctor gave us his "recommendation" it was almost a relief..and then as usual the second guessing began for me. She has so few good days overall..mentally and physically..being unable to walk over these last couple of years after living in her own until 82yo has been a very difficult adjustment..and she has always been prone to depression and extreme anxiety at times. She's just not an easy patient to figure..I don't always want to waste her energy on more doctors and stuff. She is more afraid of dying than anything else, which I think fuels her desire for testing..she wants good news, but I don't know what she'd do with the bad. I'm rambling now..just trying to figure it out. I appreciate your comment..and any and all to come. Thanks.
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I have not been in a similar situation. But in general I believe, "If you wouldn't do the treatments, don't do the test." Especially if the tests are intrusive and uncomfortable.

Have you considered a second opinion?

What is your mother's attitude in general about such matters?

In her mid-eighties my mother's geriatrician offered to do further tests to determine was a mass that showed up on an earlier scan was. My mother turned it down. She said if it turned out to be cancer she would refuse treatment, so what was the point of an expensive test? She said, "I've had a good long life. I am going to die of something. If it is cancer, so be it."
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