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

If one is not asking family for support financially or otherwise and not mentally incapacitated than I believe we have to step back and accept their decision on medical care issues.

problem with my dad is he'd made arrangements for care, in that sense; he'd gotten his grandson to move in with him to take care of him but this was because of his first fall, before his collapse and all of this started, but...he didn't tell him about what he was wanting to do, so...when that happened nobody really knew what to do, but one thing that happened was it wasn't his hemo, because of some of what I'd mentioned above, that started him on his Procrit injections, but rather the icu nephrologist because of his, not hemoglobin or blood count, kidney function level, even though he called it a blood-building shot, which I didn't understand the connection there so when he was referred back to his hemo he just thought his nephro was continuing those, but he thought, because he'd been referred to his hemo that he was going to manage his care and decide about them, so what happened he didn't continue to get them or possibly could have avoided some of those blood transfusions but also by then dad wasn't really able to converse with the hemo about any of this or understand; he'd gotten the dementia diagnosis while he was in the hospital from that doctor who wanted to keep on seeing him but it was months before I found out he wasn't getting the shots, maybe part of the issue there was a pcp one; the one he'd been seeing was definitely out of his depth and then he retired without a replacement on top of it and by the time that all got resolved it was pretty much too late; maybe should have pushed that issue more to have him see the one who wanted to see him but one thing dealing with with him having had grandson move in with him to take care of him he thought he was the one who was supposed to be making the decisions, at least when there wasn't a crisis, because when he collapsed and wound up in icu he wouldn't make them then but then he wanted to bring him back home, so the conversation was never had with the doctor, until I brought it up but even then we still had that issue

As an adoptee who hasn't had benefit of medical history for 54 of 57 years, I would make the request to mother for her children's and grandchildren's medical info in order to know the medical history. I am so grateful for Ancestry DNA and the technology that led to my biological families discovery along with the valuable info for my own health as well as that of my children and grandchildren. I have pre-diabetes which I have taken way more serious after finding out bio mom and both her parents had diabetes. Bio dad has had skin cancer and bio uncle heart bypass. I am checked regularly for all these issues and it is no longer a complete mystery. I realize that not all illness is genetic but much is and can be either prevented or managed once you know what you are dealing with. I wish you the best for your mom.

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.

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.

Dear One, You only want what’s best for your Mom. However, we are all so different in our views, expectations, wants and needs, and they must be respected. In my view, your should be gathering as much information to help your Mom live comfortably now based on her decision versus what you or anyone else “thinks” should be done or seems “logical.” Your Mom is asking you to simply support her. It’s a matter of respect for the individual. It doesn't mean you can’t or shouldn’t raise the issue of treatment options in the future, but for now, respect her wishes and go forward in love together. Much love.

Wow, you're getting a lot of good responses!!
I think it is part of my need to have all my ducks in a row that makes me tend to want a diagnosis, but after reading so may answers I've altered my opinion a bit. Someone pointed out that all or nothing isn't the only response available, the docs should be able to figure out how this can be managed without the biopsy, focusing on symptom control and improving QOL.

When my mother said she didn't want testing for possible cancer, I respected her decision, but as I sat in the doctor's office I could not imagine making such a decision for myself.

That was about a dozen years ago. Today, at age 73, I can very easily imagine me making such a decision. Possibly not in the next few years. Probably in my 80s and absolutely in my 90s ... and maybe sooner.

Breast cancer? Sure. Let's get the results as soon as possible. I know women who have survived that kind of caner. I could decide that the risks and the pain were worth the possibility of a longer life.

But for most other kinds of cancer, I agree with Ginach. The older you are the less sense it makes to trade relative comfort now for uncertain benefits in the future. Reading "Being Mortal" confirmed that belief for me.

I might have the tests, but first I'd ask if having a firm diagnosis would change the treatment plan if I refused chemo, radiation, and surgery. Could they keep me more comfortable if they knew what was causing my symptoms? Or are they going to use generic measures no matter what? Then let's skip the tests.

One case discussed in "Being Mortal" is that of a person trying to decide whether to have the treatment the oncologist was urging. The author asked the question, if no cancer treatment is given, what is the best-case life expectancy? The answer (after the usual disclaimers for uncertainty) was "about 3 years." And if the chemo/radiation/surgery is accepted, what is the best-case life expectancy? The oncologist answered that it was just over 3 years. Hmmm.

Carla, how old is your mother? I think in her situation I would prefer to get support from a spouse or a sibling or a friend near my age instead of from any of my children. Age really and truly makes a difference in one's perspective.

I wonder if your best approach might be to twist the truth with help from the PCP. Perhaps, the PCP can indicate the insurance company requires an evaluation and have Hospice play along without indicating who they are. If they could do an initial evaluation and establish a relationship with your mother while pretending to be reps from the insurance/Medicare. Even without a diagnosis they could monitor her condition and keep you apprised. Probably a crazy idea, but thought I would throw it out there. I respect her decision not to know, but the caregivers need support. My own experience with Hospice with my mother was so good, but I know that all Hospice's are not the same. They diagnosed my mother with "failure to thrive" after she broke her hip and was in rehab, not progressing due to Alzheimer's. Just know that whatever you are doing is the best that your mother will allow and try and find peace in that.

Based on the responses, I think I need to clarify a few points.

My mother is almost 87 and is in very poor health overall. She has CHF, AFIB, COPD, diabetes, kidney disease, and severe anemia. Her quality of life is poor and getting worse. She hasn't been able to walk more than about 50 feet with her walker for a long time. Her recent issues have made everything worse. Now she has extreme difficulty or needs help getting up from a chair, can't walk further than the bathroom with her walker, and has to be wheeled out to the car to go anywhere. She no longer goes anywhere except to doctors' appointments, and cancels most of them because she can't get up the energy to leave the house.

Nobody in the family is advocating for my mother to seek treatment for whatever the disease is, unless maybe the treatment is a simple daily pill with no side effects. We know she could not withstand surgery, chemo or radiation and her quality of life is lousy enough as it is. We all accept that she's nearing the end of her natural life. I'm amazed she's lived this long with all her impairments, actually.

Still, it's very uncomfortable not to know whether she has 2 months or 2 years, and how quickly and in what direction her needs will change. Should we be applying for Medicaid, or is it already too late for that? Should we/can we bring hospice in? Should we be working to make her house more wheelchair-friendly, or will she be bedbound by next week so it doesn't even matter? Should we be getting a hospital bed for her living room so she doesn't have to get out of her chair to get in bed? What if she can't get herself to the bathroom? (She's already given up showering, and just gives herself a little wipe-down while seated on the toilet).

The biggest issue for me is - should I find a way to move closer so I get there faster and be there more often? My sister lives only a few blocks from my mother, but she's so heavily scheduled and frankly not inclined to involve herself with Mom any more than she already is. I know she's not going to stop in to check on Mom every day, but if I were there, I certainly would.

I'm not trying to pressure my mother into anything. I just wish I had a better idea what to expect.

I don't blame you, Carla. Almost every caregiver would like to know what to expect. Some patients, including your mother, don't want to know. If it were a simple matter of a blood draw or peeing in a cup to get a diagnosis, that would probably be easy, right? And Mother would not have to be told the outcome. But the procedure is a little more complicated than that. And your mother does not want to submit to the procedure.

Your Mom has CHF, AFIB, COPD, diabetes, kidney disease, and severe anemia. Would she be accepted into hospice care? Has she been evaluated? If she has nothing else except the listed diseases at their various stages, what is her prognosis? I know that the medical profession is very reluctant to give life expectancy, but it seems that this one is an important part of your decision factors.

And then, add possible blood cancer without chemotherapy etc., and what is that life expectancy?

What if you hear "she could live as long as two years with the cancer, but her kidney's are not going to last that long. Perhaps 6 to 8 months for that"? Would that change your mind about the value of testing? Perhaps you could ask, "Given her kidney disease and her comorbidities, would you approve hospice care for her? That will give you some idea of what they are thinking.

Do you have a cutoff in mind? If mother has less than x more months as a life expectancy you will move near her, but if she is likely to live more than x months you will bide your time and move later?

You are not asking for anything most of us haven't wanted. There are many practical reasons it would be valuable to get a time-line prognosis. When I had the front lawn landscaped I wondered if it would be worthwhile to also replace the sidewalk with one on an ADA recommended incline? Coy wanted a walk-in tub. How much longer would he be likely to be able to use it? I really do understand the practical considerations in wanting answers. I think most of us do. No criticism implied that you would like test results. We all would. Usually we don't get what we would like in that regard.

How valuable would it really be in making decisions to have that information?

Carla, I think what I would do is first get a hospice evaluation. They are probably as skilled as anybody to guess her life expectancy at this time. You wouldn't have to commit to using it even if she is eligible, but why wouldn't you?

I would get the hospital bed and a bedside commode. If she goes on hospice, they will provide these, probably same day. If not on hospice, her doctor can order them and they should be covered by Medicare. It will take a little longer that way.

I would start the Medicaid application now. Better safe than sorry.

I can't remember your caregiver arrangement, Carla. Is someone with Mom all day? If she goes on hospice she will need 24-hour care provided or hired by the family. Would that make a difference in how soon you would want to move closer?

Sorry to write at such length, but I really do empathize with you. I hope you get some information that will help you make decisions.

Thanks to all of you who responded, at great length or at short length. It is so helpful to hear everyone's thoughts and to feel less alone with the stress of this situation. I don't know what I'd do without this group! You all seem to have more care and concern for my mother than anyone else in my family does!

Jeanne, in answer to your last question, Mom does have a live-in helper. She is an unpaid caregiver who basically watches over Mom in exchange for free housing and has over time become extremely invested in Mom's welfare and very devoted to her. That said, my mother's total helplessness is starting to become overwhelming to the housemate, and I have started to step in and relieve her more regularly than before. Since Mom no longer goes out, I have to go to the house for a few hours or overnight to make Mom's meals, help her up, and do whatever she needs so her caregiver can get out and attend to other things. I've offered to stay over every weekend if the housemate wants (her boyfriend lives a few houses down the road and they're always happy to have time to spend together). So we're working on those arrangements.

I call them both every morning now, but it is starting to weigh on me that I'm not there every day to see Mom for myself. If Mom were close to dying, I would definitely uproot my life to be there more. If it's a year or more out, I'll finish out my current lease and then see about changing things. How much I need to be there depends on how much Mom needs me to be there. I guess there's just no way of knowing that in advance and I just have to wait for the future to unfold and let me in.

CarlaCB: Yes, I know exactly how difficult this is for you and someone came up with the phrase, "ignorance is not always bliss" and I'm not implying that. Walk in that person's shoes and would you really want to know a health diagnosis? That's a person choice, but for an elder, it's really a difficult decision. To ease her mind and hopefully change it so that she can have the diagnostic test, you may want to fabricate a story-"Ursula's ob called her in for a mammography because he wanted to be very sure of her good health and you know what mom, Ursula received a clean bill of health just because she has the best doctor in the state and takes such good care of her by double checking."
Real story-When I had to move in with my mother from my state (Maryland) to her state where she was living alone (Massachusetts), I got the opportunity to look at her medical documents she had received from doctor visits. One actually said that she had skin cancer. When I asked her about it because she had never brought it up in ANY conversations we had had, she said "no, I don't have skin cancer." So there it was -- a document stating the truth, but the elder not wanting to believe it!

Carla, it’s slippery indeed. Your mother has every right to bury her head in the sand and “do it her way,” as Sinatra crooned. And you have every right to know your complete parental health history. Not just the bits and pieces that your mother is comfortable with. (((hugs)))

Oh Carla so hard. I was in your place a year ago.

My mom was hard headed her whole life regarding doctors. She made it to 80 despite them.

Your mom would be eligible for hospice in my state (MN) under 'failure to thrive'. It doesn't have to be a doctor's cancer diagnosis or something like that. My mom never had a diagnosis. The hospice doctor could tell she was dying (low weight, low BP, mental, etc.) that approved her.

You are on such a hard road. My thoughts and prayers are with you. It is so very difficult and I understand.

Carla, my dad had the diagnosis, a good and compassionate hematologist, and I still never knew what to expect from day to Day. He was using a cane and just in one day needed a walker. He started out in AL with no extra supports and wound up needing a sitter for 12 hours a day and if he had survived his heart ailment he was going to a nursing home because he could no longer bear weight. I would say that the biggest lesson I learned in the last three years of my dad’s life is be prepared for anything. I was not prepared for so many things, the walker, the catheter, the sitters, the not knowing what time of day it was, etc.

Dear Carla,

I’ll be in the minority group, as it very frequently happens, and I’m absolutely ok with it, as my perspective in life is more focused on the heart and emotions than on material and practical aspects.

I’m in your same situation, my mom doesn’t want anymore tests, anymore doctors and has been cutting down her daily medication. And WHY should I expect anything different? For my practical convenience? Absolutely not..

Do we have the right to be able to plan according to our circumstances? Theoretically yes, but not if to be able to do so we force someone that’s already tired and ill to do something they not only don’t want to do, but don’t have the strength, physical or mental, to do it.

We live in a society that’s very “practical” and not very “human”. A sick person is many times seen almost as a robot, that should submit themselves to whatever a doctor suggests...”for their own good”..But is it for their own good?? Is it fair to expect others to change their choices to make ours easier? I don’t think so.

I know your desire to know your mom’s diagnosis is not coming from a bad place, I understand that perfectly well; but I believe you are missing the essence of her point Carla.

Like others have mentioned here, your mom has lived a long life and unfortunately is not in good health. She’s probably accepted death as part of her journey and simply wants to be left alone and be at peace.
She has the absolute right to do so, and there should be no practical matters that impede that. If her decision implies sacrifices for you and your sister as a result of having to plan for the unplanned, well, at some point love means sacrificing -if not always-.

You wonder if you should move closer, since you don’t know her exact diagnosis. Yet, I don’t think you need that diagnosis to know the answer to your question. As it is, your mom is very ill, tired, not eating not able to move easily...so, Carla, If you’re able, I’d encourage you to make changes that allow you to be closer to your mom and help to provide her comfort and make her feel loved. A diagnosis is not needed to understand that.

SueC gave you a good answer, specially coming from a nurse.

Look at this time as a golden opportunity to care for your mom, be close to her and show her your love! one day at a time, for a year or 30 years, time is not the focal point here.

Much love, strength and wisdom for you :)

I would address the situation with mom perhaps like this:

Mom;

It is possible that you have something benign that just needs simple treatment to make you feel better. Why not allow the testing to be done and they can discuss everything with us first. If you do not want to know, we don't have to tell you. That's your choice. It could be that it is something simple, curable, and we can work on treating it! THEN you can feel better and live again!!

If we don't know what the issue is, we cannot help you or prepare you and ourselves for what this will bring. Meanwhile you suffer. It could be a chronic condition that just requires treatment all the time to make you feel better (like diabetic treatments - feel better but it never goes away.) THEN you can feel better and live again!!

If it truly is something that cannot be cured, it likely CAN be controlled and if nothing else we might have ways to at least make you feel better/more comfortable. THEN you can "live as well as you can while you can."

You will not likely be able to "live as well as you can while you can." if you choose to bury your head in the sand and not seek out a diagnosis. You already suffer from "no energy, no appetite, nausea, extreme weakness." ALL of this *could be* a treatable condition, IF we know the cause behind it, AND also could also be curable! You are assuming the worst and you could be wrong. If we get to the bottom of it and can find ways to make you feel better, THEN you can feel better and live again!!

Disgustedtoo, this is exactly what I was talking about.
PUSHING to get a diagnosis and possibly a treatment/cure for the blood problem, is NOT going to cure all moms other illnesses.

Her breathing will be compromised from the Chronic Obstructive Pulmonary Disease (that only gets worse as time goes on), Congestive Heart Failure (which she's already been to ER multiple times to get rid of the fluid) and anemia (Procrit, IV Iron and possible blood transfusions). She has no energy because of that. Diabetes in later stages compromises circulation also. The diabetes probably caused the kidney disease and toxins build up.
There are multiple body systems affected. One gets worse and it affects the others.

So, the folks who are pushing for a diagnosis of the blood problem have to understand that these other problems aren't going away. There will be no "It could be that it is something simple, curable, and we can work on treating it! THEN you can feel better and live again!!", because she's STILL got all the other incurable problems. Finding a diagnosis for the blood problem WON'T cure the rest. I wish it were that easy.

At this point her mom is very weak. Think about that-not having the energy to stand and walk. The diseases beat you down until you give up from the exhaustion. Have you ever been THAT sick? I have (pneumonia at 35 years old).

I'm thinking she's tired of fighting the inevitable. At that point, it's just not worth it to her.

CarlaCB,
Enjoy your mom now. No one knows when the end will be here but, like Rosses said, your mom has accepted the inevitable. You don't need a diagnosis. Be near her, spend time with her, treat this as if this is it. You'll handle the changes as they come, as best as you can. And don't rely on this one diagnosis (or lack of) to see that your mom is a very sick woman. Any time, IMO, with her will be well spent. If you wait for what you think is the end, you just may be too late.

Sue, there was never any impulse to push Mom to get treatment, for the very reasons you describe (and others). Her overall health is so poor that she could not tolerate cancer treatment, and it would likely only make her quality of life even worse. At most, we hoped for a diagnosis (and prognosis) so we could have a better idea what to expect and plan accordingly. For example, if we thought Mom was going to be living at her current level of impairment (or worse) for two years, we'd be applying for Medicaid and seeking nursing home placement. If we thought it was only few months, we'd suck it up and care for her at home.

The latest on this is that Mom's doctor has again talked to us about hospice, and again Mom didn't want to hear it. It could appear to the outside as if Mom has accepted the inevitable, but I don't think that's the case. I think she's just crossing her fingers and hoping for the best. Or purely in denial.

I replied early. I have CLL but just have blood tests done until big chg doc said. We were snowbirds & living in our motorhome 13 miles from mother. She had become tired hard of hearing &94. I would make sure I could pick up her breakfast & all meals taking them to her rm at independent living. I also helped her to toilet & w shower hose rinsed herself. Well after 6 months we returned home & hired young girl but mother didn't last but 2 wks. I must tell you we had no idea she would die then but sister flew down got hospice. I am so happy I spent those days w her. God has a time for us all. I am 82 now & 87 yr old hubby w alz. We still go south but live 1 day at a time. I just hope I can outlive my hubby as his caregiver. 11 yrs now. I call it a God thing that we bought LTCare in 90's so I get out for less stress. Listen to your gut.

mlface, I feel the same way. We aren't full timers, but have a 36' diesel pusher. I am 83, hubby is 86 with Alz. He isn't driving now, I haven't driven the RV for about 3 years, so I am going to have to get my courage up and drive it again. I used to drive it all the time. I do drive the car. Does your husband drive your RV?  Does he seem to be disoriented in different campgrounds? I don't know how far along my husband is and that sort of worries me.

Carla: Thinking about this further, I believe it is imperative that your LO get the test. My cousin has been ill for 30 + years with Aplastic Anemia, which now has turned into the next or more severe stage. His immune system is non existent and his disease is fatal. He is only 65 years of age. And yes, I know that your mom is not a youngster. My cousin is now having to get routine blood transfusions just to stay alive.

Mar Kathleen I sold the motorhome 3 yrs ago & bought in old park in Palm Springs cheap w most wonderful people & lots to do. They knew hubby before he was so confused & love him. I never leave him alone. He hasn't driven for 4 years.

If my post implied that CarlaCBs mom would ever recover enough to have a "normal" life, I apologize. I was basing my comment on the fact that her mother "has been feeling progressively worse over the last few months as her white blood cell count has steadily climbed." While I certainly would not suggest "brutal" treatments if this were something like leukemia, there are other conditions that could increase white blood counts and make mom feel "better". If it were something like leukemia, I would think that there might at least be some way to make mom feel better, even if the underlying condition is not treated. I was basing my suggestions on the comments from CarlaCB's desire to have some idea of what to expect and what her mother says:

* she doesn't want to know the diagnosis
* She just wants to live as well as she can while she can.

Yes, there are underlying conditions, however there could be something easily treatable that would allow mom some "comfort" in her remaining time. "Living" with "no energy, no appetite, nausea, extreme weakness" does not equate to living "as well as she can while she can." Those other conditions might not be causing this and might not be enough to say she is on the cusp. IF a biopsy is the only way to determine what is going on and IF that is an invasive painful diagnostic, then perhaps leave well enough alone and spend the most time with mom while she is still with us. Perhaps, as some have suggested, there are alternative tests that could be done that might reveal what is causing the blood issue. Again, IF that underlying condition were easily treatable, or at the least the symptoms were treatable, which might improve her current quality of life, why not try it? Others suggested talking with PCP about her other conditions - what is the prognosis for those? Unfortunately doctors do not have crystal balls to determine how long one might last with ANY condition. There are no guarantees in life - even "healthy" young people die from previously unknown conditions or accidents. We live each day thinking we can go on as is, but a wrong move by anyone can snuff that idea out in an instant.

Just as an example of treating a condition that might not extend life, but *could* make it better: SueC1957 related a story about Maggie, who was told she would go blind in about a year due to macular degeneration - question, was this before they had treatments? Our mother, long before dementia set in, developed this in one eye, then later in the other. SHE has treatments, which have preserved her eyesight. Because the first doctor she saw missed the condition, she lost some eyesight in that first eye, however she CAN still see. This was MANY years ago! During a recent treatment the doctor asked if we wanted to continue with treatment because of her dementia and age (currently 94) - yes, absolutely, because she loves to read things (has no real hobbies, so reading is it!) and as long as we can keep her eyesight well enough to do this, she is content. What her life (and ours or the care-givers) would be like if she lost her eyesight? Probably a nightmare! Her hearing is bad (nothing on one side, the other not much better, so between talking, lip reading, writing on a Boogie Board and pantomime, we can carry on "conversations." With no eyesight? HOW would one communicate?

CarlaCB - do you and/or your sister have DPOA and medical directives in place? If so, you *could* perhaps, with doctor advice, start hospice. Mom does not need to know that this is hospice - just tell her that her care-giver and you need help taking care of things. At least you could get some medical equipment to make life easier for the rest of you and some palliative care for mom, which might make her more comfortable.