Mom doesn't want to know- Has anybody been in this situation or have any light to shed on this issue? - AgingCare.com

Mom doesn't want to know- Has anybody been in this situation or have any light to shed on this issue?

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As I've mentioned in earlier posts, my mother has some sort of undiagnosed blood disease, probably leukemia or a precursor to it. She has been feeling progressively worse over the last few months as her white blood cell count has steadily climbed. She has no energy, no appetite, nausea, extreme weakness. We went to her primary doctor on Friday and my mother again refused to have a bone marrow biopsy to diagnose the problem, admitting that she doesn't want to know the diagnosis. She just wants to live as well as she can while she can. She insists that she wouldn't seek treatment no matter what the diagnosis is, but I'm not sure that's entirely true. At least some types of leukemia can be treated with a pill form of chemo, and if that's what she has, maybe she'd at least try the treatment to see if it improves her symptoms if not offering a cure. I accept that that's her choice to make, but my sister and I would really like to know what we're dealing with here so we know what to expect in the foreseeable future. We would like to be able to plan for Mom's needs and our own availability, as well as whether to seek involvement from other family members. Plus, my understanding is that hospice won't provide services without an actual diagnosis (or prognosis, anyway). Mom's doctor did mention hospice as something to think about, but I don't see how we get there from here. Has anybody been in this situation or have any light to shed on this issue?

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I guess I'm the minority here. It is mother's decision. Let her make it in peace.

My mother's geriatrician told her a mass had shown up on imaging done for another purpose. Doc said she could schedule further tests.
Mom: No. I would not accept any treatment so what is the purpose of knowing?
Doc: Many of my patients feel that way. I will certainly respect your decision. But I must tell you that cancer treatments have improved over the last few years, and if you do have cancer treatments could give you more years.
Mom: I've already lived a long life. I'm going to die of something. If it is cancer, so be it.
Doc, to me: Are you OK with this?
Me: It is Mother's decision.
Doc: I won't schedule further tests. If you change your mind at any point just call me.

And that is how we left it. After reading "Being Mortal," I am so glad no one tried to talk her into tests she didn't want.

As it turned out, Mom didn't have cancer. She lived another ten years. She developed dementia. Wouldn't it have been ironic if the mass had been cancer and she had gone through treatments, only to prolong her life so she could have dementia?

Her life. Her decision.
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Reply to jeannegibbs
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I think that in your circumstances, the question to mom's doctors should be "How can we treat this symptomatically? Mom doesn't want a biopsy and doesnt want to know her diagnosis. How can we help her feel better?"
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Reply to BarbBrooklyn
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"Gee mom, we really understand where you're coming from and I totally agree with your stance that you don't want to deal with chemo or surgery and I'd never push you to do that, but what if we could get rid of the nausea or help you get rid of that terrible tired feeling without having to do that? Once we know what we are dealing with we can make better decisions, wouldn't it be better to find out if there was something they could do to make you feel a little better?"
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Reply to cwillie
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Carla,
You have stated very logical reasons for wanting to know what exactly your mom has.

Your mom not wanting to know what the diagnosis (and prognosis) is because she wants to live as well as she can while she can is not reasonable. By that thinking, once she's diagnosed she will stop living well? I understand her point of view is a form of denial in addition to fear but as an adult she has a responsibility to her family especially since it's that family that will be caring for her at some point.

Find out for certain if your mom needs to be diagnosed to be eligible for hospice. I've worked many hospice cases and the criterion was always the opinion of the doctor that the person has about 6 months to live. I've never heard anything about if someone hasn't been diagnosed but all of my patients had a diagnosis so that could be why it never came up.

And technically, as you said, it is her choice to make but not if she's going to be depending upon her family for care and support. Then it's not just her choice to make. Have you talked to her about this? Told her the same thing you've told us? That you need to plan, need to know what to expect? Need to know what kind of care she's going to need? Your mom not wanting to know is like a little kid who holds her hands over her ears and yells so she doesn't have to hear or see what's going on.

Acknowledge your mom's fears. Reassure her that whatever it is, you and your family will be there for her, will walk with her. Then discuss your concerns with her if you don't know what's going on and what to expect. You may not be able to resolve this with just one conversation. It may take several discussions. Get other family members on board as well. Explain to your mom that you won't be able to care for her properly if you don't know what you're dealing with and that this will cause significant issues in the future so while she may be in denial now about what's going on things will get worse in time as you you try to manage symptoms that you don't know are normal or not. This may include many trips to the ER in the future. Ineffective treatments and medications. Not being able to stay on top of whatever IT is because you don't know what IT is.

Basically, convince your mom that she find out what her diagnosis is. If not for her then for her family who will be caring for her in the days to come.
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Reply to Eyerishlass
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I feel for you. I hope your mother agrees to a diagnostic procedure. If she does not, you should not blame yourself. Twelve years ago my mother refused radiation after a mastectomy. Two years ago her doctor and the hospital doctor both saw a mass under her arm that they believed was the breast cancer returned. She refused the biopsy for the same reasons your mother did. I also was concerned about hospice. It would have been easier for me to know so I could plan. It was her choice though. That was not to be. At first I was afraid she'd die when i couldn't be there if I traveled. Then I decided to live my life, just as she was hers , and go on vacations etc. Two years later same uncertain situation. She has terrible arm pain sometimes and we still don't know why.  You cannot force your mother and you should not twist yourself into a pretzel.
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Reply to Rosyday
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Carla,
Sorry to be so lengthy but I'd like to present another perspective.

I don't see why your mom couldn't be signed up with hospice with the diagnoses she has...anemia, congestive heart failure (especially if she needs fluid drawn off every so often), then chronic nausea and immobility. The doctor should be able to state that she has less than 6 months to live (even if it's longer).

Your mom doesn't want any more "bad news" and not having the tests is one sure way to not have any bad results. That is her perogative. Yes, it makes it more difficult for everyone involved to "anticipate" her next need but, if her mind is made up, as long as she's not demented, that's her right.

As a nurse, I've seen so many old, sick and tired folks submit to painful and tiring procedures just so their family would be satisfied. They didn't want the procedure or surgery but the family put on the pressure then pressured for the treatment too. To the family, it was worth 'anything' to keep their loved one alive. However, THEY are not the ones going through the procedures and treatments.

The family isn't looking at it the same way the patient is. Often times patients are ready to die. But, in this culture, we don't let "natural" decline and death happen anymore. They are poked, proded, injected, X-Ray'd, scanned, scoped and assaulted in many other ways. We literally fight to the death to not let them die.

I have a 90 year old friend, Jane, who had an 88 year old friend, Maggie.
Maggie had many chronic health conditions and she took LOTS of medications. Those meds kept Maggie alive and mostly well.
Maggie was told by her ophthalmologist that she had macular degeneration and, unfortunately, would be blind in about a year. This was Maggie's last straw. She would not accept going blind. She gave it a good deal of thought then announced that she would no longer take her medications. They argued that she wouldn't "make it" if she did that. "Precisely", she said. Maggie died 7 months later, still being able to see.
Maggie orchestrated her own death because she refused to live with blindness in her future.

Maybe your mom is driving her own future also by letting things "BE".
She has that right. You don't have to be happy about it but you must accept it.

In my thoughts, God's gift to us is our life. What we do with that life is our gift to God. Whether we fight to keep it as long as possible at any cost or we surrender to "whatever will be, will be", we all return to Him when it's our time.

Maybe your mom is ready to face the unknown but the rest of you aren't.

Such a hard situation with no perfect answer. 😢 It's hard to let go.

God bless you all.
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Reply to SueC1957
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My Granny had Chronic Leukemia, it was diagnosed without a bone marrow biopsy, back in the 1980's. My other grandmother had a bone marrow biopsy in 1981, I was with her (I cannot remember why, I was only 16), it was painful, but not excruciating. A friend was a bone marrow donor and described it as being kicked in the behind hard.

Granny did not want treatment for her Leukemia, but she did accept regular blood work to check her WBC. She also had 2-3 blood transfusions in her last year, when the WBC got too high and she felt like your mother does now. Granny did not consider the transfusions to be treating the disease, just the symptoms.

As she got closer to the end her skin got incredibly thin and would tear, and the bruising was terrible. But she lived with the disease on her terms.

Granny lived for 12 years with Leukemia. She was in her own home with her boyfriend until 5 days before she died on her 82 birthday. Those last few days in the hospital she was lucid for about 30 hours, then delirious for a day, then unconscious. She had an IV for fluids, a catheter and an O2 mask, that she kept pulling off. In the end the bruising on her body was terrible, but it was a good death and what she wanted.
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Reply to Tothill
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It sounds as if you would all benefit from a conversation with a Hospice coordinator -- her doctor (either of them) needs to write a referral, but that's all. She has enough "comorbidities" -- multiple illnesses -- to make me think she could benefit from Hospice care, in terms of exactly what she wants: living as well as she can for the time that remains. And she may well qualify even without a definitive diagnosis.
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Reply to maggiebea
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Carla, if it helps, if it were my mother I wouldn't put her through a bone marrow biopsy.

The haematologist should be prepared to give you her best diagnosis without it; you can tell plenty from a full blood count anyway; and for the purposes of hospice or any other bureaucrats who are demanding to know that'll just have to be enough.

Is the haematologist talking to the cardiologist? The best thing the poor old PCP can do is act as ringmaster, here - get everyone's opinions together and balance them as far as possible. It's a heck of a job.

I'm so sorry you're all going through this. Hugs.
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Reply to Countrymouse
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SueC1957, I firmly believe you are so right on.

I am almost 84, my DH is 86 with Alzheimer's. We both feel the same way. Someone the other day was talking about changing his diet so he would be healthier. I asked "Why"? He has had Esophageal cancer, every time he eats he hurts, he has diarrhea all the time because of the surgeries he has had. We eat a well balanced diet, why would I make him do without food he loves just to keep him suffering longer? A couple of good hearted people wanted me to not "let" him do his hobbies because he might "cut" himself. I told them what kind of life would this active, talented, man have if he had to sit in the chair because he "might" hurt himself? With the Alzheimer's that will come soon enough.
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Reply to MaryKathleen
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