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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 think I would try to approach your mom with the hope of having a better quality of life if simple treatment is possible. My sister's MIL had a problem that was discovered when she wanted hip surgery, it was the desire for the surgery that motivated her to seek a diagnosis. My memory is fuzzy but I think the diagnosis was  Myelodysplastic syndrome, the treatment for her was simply several transfusions and watchful waiting and she's now been symptom free for several years.

edit: It was the hematologist that was really helpful in all this, the primary doctor was definitely out of his depth.
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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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Is she afraid of the pain of the biopsy?

Can you get her to have an appointment with an oncologist/henatologist to discuss what sort of a workup needs to be done?

The fact that your mom is not feeling well probably adds to her unwillingness to take action. It sounds like she just wants to pull the covers over her head!

From experience with my mom, after she had a mammogram that showed a lump, she went into full press panic, insisting that she was going to have a surgeon do a biopsy/ mastectomy in one if needed ( the way they did things in the 50s) based on her belief that this was what "good patients" did.

We tried cajoling, sweet talking...to no avail. I called her up one night and told her quite harshly that she was too smart to do something so stupid.

You may need to make an appointment with a specialist to discuss her options (the specialist will be far better at laying this out than her PCP) and simply take her there after a nice lunch out. " Mom, we need this information in order to help".

Edit after seeing your reply to CW.  Does mom have to hear the d's? Can't you arrange for the doc to tell you, and not mom?

I had a friend who did this after her A Whipple procedure. She didn't want to know if the surgery had been successful or not. The surgeon told her husband so he could plan.
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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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I appreciate what you said, cwillie. My mother's hematologist is, I fear, part of the problem. Because she's elderly and has several other chronic conditions (CHF, diabetes, seriously impaired mobility) , he feels okay in acceding to her desire to have no diagnosis and no treatment.
He has told her, in effect, to only make appointments with him on an as-needed basis, not scheduled follow-up.

Her PCP, on the other hand, is out of her depth and knows it. She is gently pushing Mom to get a diagnosis and at least to schedule regular appointments with the hematologist, because she desperately does not want Mom to get sicker or die from something that might have been treatable. She is clearly quite uncomfortable with Mom's decisions, even though she respects her right to make them.

I have discussed with Mom the possibility of having a better quality of life if treatment is possible. So has the PCP. But Mom doesn't want to take the risk of hearing a dire diagnosis, or finding out she has something that can be treated but only with brutal treatments that will only worsen her quality of life.

That's interesting about your relative's MDS, and the need for only a few transfusions. I didn't know that any treatment could be that simple. That's good information to have in my back pocket as well.

Thanks for responding.
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Eyerishlass, I totally agree with you that Mom should be thinking about what's best for her caregivers/daughters as well as what she herself wants. Unfortunately, Mom has never been like that. Even the PCP gently suggested that the family would be better off having this information, as well as having access to the resources of hospice if that was the conclusion. My mother was unmoved.

You are right though. We won't know what's going on, whether her symptoms are signs of an emergency or not. Whether we're treating the right issues or barking up the wrong tree. Her PCP is already struggling with this, and is making it very plain, at least to me.

We are struggling with practical issues too. Whether we need to find more help. Whether we should apply for Medicaid in the hope of getting more home help soon enough for her to be able to benefit from it. Whether we need to modify her house/ramp/car to be more wheelchair-friendly since she's much less able to use her walker now. Whether/how to supplement her diet since her appetite is now so poor.

A diagnosis wouldn't answer all our questions but it would give us a clearer idea of what we're looking at.

I'm not sure if I can approach Mom about this, at least not right now. She's been sort of shut down since her PCP mentioned hospice and told her that without diagnosis and treatment, her symptoms probably will only get worse. Mom can be very obstinate and I expect her to dig her heels in right now. I'm trying to wait for a more receptive time to discuss all this.
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Barb, you're right, Mom is afraid of the pain of the biopsy. But since she's stated clearly that she won't have treatment in any event, her hematologist didn't push it. Sis and I didn't realize at the time how quickly symptoms would develop and make it necessary to plan for the future even assuming that Mom does not accept treatment.

I've considered the possibility of getting the diagnosis and not telling Mom. I just don't think she'd be willing to go through a painful diagnostic procedure just to help her family know how to plan for her needs.

I don't know if feeling so poorly is going to make her dig her heels in more over time or whether it may make her desperate enough to seek out answers in the hope of getting help. I'm waiting to see which way the wind is blowing over the next few weeks as she settles into the "new normal". Thanks for helping me think this through.
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It's my understanding that you can be sedated for a bone marrow biopsy. Has this been discussed with mom?
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No, and I didn't know that. Her PCP only mentioned local anesthetic. I'll check into it. Thanks, Barb!
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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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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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I see where you are coming from Jeanne, but it doesn't sound as though your mom had the kind of debilitating symptoms as Carla's mom has:

"She has no energy, no appetite, nausea, extreme weakness."

To me that is no way to live - or die for that matter - unless there is no other choice. And it is unclear whether the choice is an acceptance of dying or if-we-don't-acknowledge-it-it-isn't-really-there magical thinking.
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Initially, we all had the same reaction as you did, Jeanne. We were all in agreement about accepting Mom's decision. But that was before she started getting so sick. Just this morning she told me she doesn't want to keep her appointment for Procrit tomorrow afternoon. She says she's too tired; she doesn't want to get up from her chair. Same thing with physical therapy - they came to her house and she sent them away, saying she's not strong enough to do the exercises. She can't use her walker anymore, and apparently I'm the only one with the upper body strength to push her wheelchair up and down the ramp outside her house, which is a problem since I live 45 minutes away. This morning she told me she can't hear me on the phone - her ears are all stopped up. I don't know whether this is a new symptom or something to worry about, or not.

I guess being in limbo is just feeding my anxiety about the future. And cwillie is right I think about my mother's thought process with this. It's not that she's accepted dying. She's skating on a thin edge here - one more problem or symptom and I'll be rushing her to the emergency room again, as I did last Friday (she was admitted for 4 days, mainly due to fluid build-up from her CHF). It's harrowing for me because I can't check on her as often as I'd like.

Honestly, I'm hoping that she'll come to a decision on her own that knowing is better than not knowing so we can at least remedy what we can and have a little better sense of what to expect. I'm not going to try to push her - she's really not pushable anyway. I don't intend to try to guilt-trip her into doing it for my sake.
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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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You're right Barb, that is where our focus is now. Mom's PCP has offered her a prescription for an appetite stimulant and has given her something for nausea. She is receiving IV iron and Procrit injections (if we can get her to keep the appointments) and will be offered blood transfusions if her hemoglobin drops too low. I am also going to ask her doc for a prescription for medical marijuana, which is legal where we live. I'm not sure how much any of it will help her, but we'll keep trying.
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Re Hospice: this is not your immediate concern, since your mother is avoiding diagnosis at this point. But if it does become a choice, know that Hospice treats for comfort rather than longer survival. That could even chemo (in low doses, the purpose being to reduce pain and/or nausea).
Another interesting fact: every so often a Hospice patient outlives Hospice time! As a one-time volunteer, I knew of several cases where the patient was still around, doing well, after 2 years. Hospice people made it clear to one I knew a little more about, that they were still with her in heart - and continued to keep in close touch, and would be there for her if/when needed again; but active care was discontinued because it wasn't needed!
Unfortunately, people who need hospice often wait until days before their demise. Often it's the family that's in denial or can't bear to discuss it, or thinks that the patient 'doesn't know' or doesn't want to talk or think about it.
Carla's mother is lucky that her daughter is daring to address the scary subject and ready to be there for her if/when the mother can bear to face any part of it.
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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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Personally, I would do the same as your mother. The bone-marrow-biopsy is very painful. I watched my DH go through the testing and it was inconclusive. I begged him not to do it but others encouraged him.

The only thing that came out of the testing was extreme pain for him. It changed nothing.

While his Chemo was successful, I watched a SIL do everything right and she still passed away after losing both breasts to cancer. I decided then that I would rather just go to the Lord when my time came. HOWEVER, I also have started taking better care of myself to try to prevent cancer. No more processed foods (or as little as possible) and a lot less junk food.
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I just went through a conversation with a Hospice coordinator about accepting my 94 year old father as a patient. This was when he was an inpatient in the hospital however since he did not have a terminal diagnosis he could not be accepted. He was suffering from a low sugar (not a diabetic) and associated other issues. The hospital Dr who treated him wasn't willing to do any testing since Dad didn't want any treatment. He was finally discharged after 4 long days with no treatment. Dad never wants to be admitted again and has given orders to his facility that he doesn't want to be sent to the hospital ever again. He has a follow up appointment with his primary care Dr next week. I have never been so frustrated with a hospital and the staff Dr who I felt just saw my Father as an elderly patient who wasn't going to have treatment so why try to find out the cause. Then to suggest hospice only to be told by Hospice that he doesn't qualify for the program.
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My dad had multiple myeloma in his late 80’s. I watched him go through2 painful bone marrow biopsies, one of which was inconclusive. My dad was willing to do anything and try anything. He was on oral chemotherapy when heart issues led to his death. In the last 2 weeks of his life he was incoherent, and I had to decide to stop all treatment, probably which would have been against his wishes even though I had medical POA. Looking back on all the blood transfusions, procrit shots, etc. my dad endured over the last 2 years of his life, I tend to think your mom may be the wise one in her decision to not seek a diagnosis. He really did not have a better quality of life even with the treatments.
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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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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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CarlaCB, It appears like there are many good suggestions on this site. I think if you appeal to your Mom's concern for her children knowing for your peace of mind, she might sway a little and consider all her options of finding out. If she doesn't want to know, at least let her children know. I don't recall seeing how old your Mom is. That might also be key so that she knows if she does resolve this issue she has a lot of years ahead to spend with her children, grand children and even great grands. i assume she has been given vitamins, ensure or other remedies to assist with her symptoms.
In fall of 2016 my Mom was anemic and weak and they wanted to do a colonoscopy to see if it was cancer. Mom wanted the procedure so she knew what she was dealing with. I didn't want her to go under anesthesia as she had been diagnosed with congestive heart failure (CHF) and might not wake up. She was more concerned about me accepting her decision for the process and wouldn't do it if I was going to be upset. i sucked it up and agreed to the procedure. She came through fine and it wasn't cancer, although they never found out what it was. She was 86 at the time. Regrettably her doctor said she did qualify for hospice with the CHF and we mistakenly enrolled her after they assured us they wouldn't hasten her death. Once she was past the point that Medicare would pay, they tricked she and my dad into going into the hospice facility and they overdosed her with fentanyl, morphine and ativan. This past December I found out that this is happening across the country so Home Healthcare is a better option to me and if you do decide on hospice, please google stealth euthanasia before making that decision. There is a very complete recording of information on what is happening to our elderly.  Not saying ALL hospice are guilty but do your homework. I wish someone had told me this before my momma was taken.
Wishing you luck on your Mom agreeing to tests to determine what can be done to help her live a better more energetic life. Lifting her and your family in prayer.
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Carla, this makes me feel bad for my dad; he had the bone marrow biopsy without saying anything to me because my fil had just been diagnosed with COPD and started being in and out of the hospital for a year, with going through this with his family, except for hub who knew it was just the beginning of the end, but when dad and mom came down for his funeral after it was over he told me and then also asked me to come up and go with him for his year followup, where he thought he'd be fine, he'd been on - not sure if it was called oral chemo, but meds for that year and thought he'd be able to come off them, but his hemo said, no, he'd have to be on them the rest of his life, which, though he didn't like, was fine with; we didn't know then, and not sure he had then, his CHF, the reason that later, the ER doc didn't want him to have gall bladder surgery, it was just hard later when his PCP retired and wasn't there to play ringmaster; I was having to try to do it
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Ginach, I had to look at your post twice to see if I'd already written here and forgotten, your dad's situation seemed so much like mine's; granted, dad did have a bad fall at the beginning of his last two weeks, which might have been what was behind his incoherency, or was it the other way around, we really don't know; we don't really know how he came to fall, but he wound up in icu till they came to us about stopping treatment but with him 2 years before he'd wanted to stop treatment and was going to tell his hemo but he collapsed and wound up in icu then getting blood transfusion before he could and then seemingly after, even while still in there, wasn't able to understand enough to tell them, so was given the Procrit shots, though thought they called them Epigen? but must have gotten this name somewhere, because it kept sounding familiar, think was supposed to be kept being given them after he got out but he was deferred back to his hemo, who'd referred him back to his primary so actually hadn't seen him in a while, which was an issue we were going to address before this happened, he was supposed to have been discharged with an appointment with him and maybe was, according to his home health nurse, when she finally got there, but we weren't told, so she got it set up along with orders for blood draws more often; he'd been getting them before so before he could get to his appointment he had to have another emergency blood transfusion, so his hemo just continued those orders; they didn't really help him either
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he was having the transfusions because his hemoglobin was dropping so low
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he got to where he was pulling his IV's out and spewing blood all over the room; he did not know even really know he was having them and certainly not why, plus his veins were beginning to blow out; the hospital wanted him to have a port but because of his heart they didn't want to do the surgery for him to get it; there was a special iv team but not at that hospital; they'd have to come from another one and his hemo, who, still not sure what had happened there, was no longer on staff, not that he really ever was, in one sense, he was in another town, the same one the iv team was, but something about he no longer had admitting privileges at that hospital like he had had, not that dad was being admitted for these blood transfusions anyway, though didn't know that for a while, being considered under observation, so somehow with all that, nobody ever wanted to actually call him re any of that, just leaving it up to his appointments but nothing ever brought up then, maybe because blood work was always okay when he'd go? except maybe the one time when he almost didn't make it back to the car; he really wasn't able to be making the trips to the next town to go to his hemo
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My MIL and FIL have hospise The FIL did have a diagnosis of demente but the MIL Did not have any diagnosed illness. Now in the nursing home they still have hospice the same nurse and doctor I still do caregiveing for them. so she should still be able to get Hospice. I think theres a lot of confusion of what hospice is, They're not full time caregivers ours would give the caregiver a two hour break for doctors appointment, or rest maybe once every week or so. They paid for there prescription meds, and and some other items like adult diapers and boost. The main advantage of having them was not having to take them to doctors appointments and giving them baths. and giving a little company a couple times a week. plus they had a 24/7 nurse who would come out. There job was to make them comfortable till end of life. Any surgery to prolong life like the MIL pacemaker battry change she had to stop hospice , and resign up. But if she meets the age and or income requirements there shouldn't be a problem. illness doesn't always qualify for hospice.
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Before my hip surgery blood test sent me to hemologst Dr found out I had CLL. My daughter suggest when in surgery bone marrow test done w my bone then. Great timing. I'm 82 & Dr said I'd probably die from something else. I'm in good health I guess otherwise. Just throwing this out for helping others who get hip surgery.
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so, mlface, did you have anything done for your CLL? when my dad had his bone marrow biopsy and then especially at the year follow-up when they told him he'd have to be on his meds for the rest of his life, they didn't tell him then they expected him to die from something else; problem is, he didn't; now he thought he had leukemia at the time, that that's what he was taking his meds for, or...did he? because other times he would know what it was for; I may be the one, maybe he did and was saying that he understood that the meds could give him leukemia if he took them long enough but at least to begin with, or maybe he really thought as well he'd die before he got to that point, but....maybe they were what was beginning to make him so tired that he just wanted to quit taking them, but he was prepared for the consequences, he said he'd lived long enough, it just got all tangled up, though but it was my mom who had the hip surgery
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