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I have overheard my father on the phone with a couple of different doctor's offices and he lies to them about his diet, exercise, pretty much everything. To the point where I called one back last week and told them the truth, that he is mostly sedentary when he had her convinced he works out daily. I try to go to as may of their appointments as I can because I know they aren't honest but I cant make every single one. We've told them numerous times that the doctors can't help if they aren't telling them the truth but it doesn't matter.

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Here’s the thing. Doctors and nurses can be very insightful when a client / patient is not forthcoming. These same people come to the doctor, ER etc but when they go home, they do what they want or can afford and this is loads of people, not just the elderly. I often wonder why people even go to the doctor . I am a retired RN and Nurse Anesthetist of 38 years.

I worked in one small hospital that serviced primarily Latinos who spoke no English.
They consistently denied any health problems . What you conclude is they just never went to a doctor , its obvious. Not picking on Latinos, just my experiences. At some point , you realize people exert their own will and follow an ingrained belief system .
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AlvaDeer Jan 27, 2024
So agree.
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My mom pulls the same stuff. I have decided not to upset myself anymore as I am on the brink of burning out. If she doesn’t want to exercise, eat properly or regularly or even sleep properly, don’t care anymore. Tired of being played by her, but she has always been like this
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overwhelmed21 Jan 27, 2024
👏👏👏 You've spoken for me, also!
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You seem stuck here. A helicoptering child will just end up with sleepless nights. Patient's concept of health is their choice. If your parents were in memory care and refusing medicines or food, they still cannot be forced. This is a frequent conundrum with many forum posters when parents are in a facility. You might have to accept that your parent's concept of quality of life differs from yours.
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Hopiegirl Jan 27, 2024
I like your description of “helicoptering” child having sleepless nights. That has been my scenario for YEARS now. In beginning I wrote out a letter to my mom’s dr telling him what was going on so I would not embarrass my mom. Dr would still question my on and seemed to just think mom was depressed and not actual dementia. She is a great liar and storyteller. Of course “it’s just the disease” they say. She is and was always a proud and I consider very narcissist person. She always has denied anything was wrong and practically would hiss at me when I would tell dr what was REALLY going on. I’m all she had and looking back at my life I realize I let her control me because I felt like it was my responsibility.

This has caused severe depression, anxiety, insomnia, and terrible health issues for me.

I know we all read and see the comments about how bad this disease is, but it also affects the one that takes care of them even worse in my opinion. I’m working on trying to change my own thought processes to not feel guilty for not being able to help. I know she is one of those that even before this disease that no one could ever please.

I am sure she will outlive me because she is actually in better physical health than I am. What is pathetic is I let this happen. When you are programmed at birth to be a slave it’s hard to get away from that mindset. No one should ever feel guilty for wanting to have a little life for themselves.
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I have a similar situation with my Mom (86 years old, retired nurse practitioner, LBD). At her doctor's appointment, she is never forthecoming about what is going on with her, or she makes up things that are totally not happening. I am so grateful for the patient portal! Before every visit, I send a message with anything new that is happening. I can't go to every appointment with her, so the portal is a wonderful tool. When I am at her appointments, her doctor asks her questions, then looks to me for confirmation. The portal is also a great way to bring up things that might otherwise upset, embarass, or anger Mom if I were to bring it up in person.
Best wishes to you!
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One final comment...

Is your angst over this situation less about your parents lying to their doctors and more about your parents' unwillingness - at least as far as you can see - to keep themselves as healthy and fit as possible? If so, that is an understandable and justified frustration, especially due to the fact that they live with you, and presumably the bulk of the caregiving responsibilities falls/will fall onto your shoulders.

If that's the case, there is nothing wrong with telling your parents some hard truths: "mom, dad, ever heard the expression 'use it or lose it'? Because if you lose too much, we're going to have to have a serious conversation about just how far and how much caregiving I am able and willing to do. For example, if you end up in a wheelchair, this house isn't equipped for that. I am not strong enough to help you in and out of bed/bathtub/toilet. If it gets to that point, we are going to have to consider at least an assisted living facility." or some such version of that conversation. There is nothing wrong with laying your cards on the table, rather than wishing mom and dad would get with "the program" and make themselves as fit as they can out of respect and consideration for YOU.

Chances are, your parents have never really considered the "what ifs?" scenarios, at least not since they have moved in with you. It seems to me, the longer a parent lives with an adult child, the less those thoughts seem to come under consideration in their minds - or at least, that's what I saw happen with my mom. Every once in a while, I had to remind her that if something were to happen to me, she would have to figure out what to do then. When Covid was in full swing with no vaccine yet and no real treatment options, she once said to me (after chiding me about not going to the grocery store more than once a week) "oh, well I don't care if I get Covid." And I told her "That's great mom, but *** I *** don't want to get Covid. Besides, what would YOU do if I and all my family got it? We would be in quarantine and wouldn't be allowed to go near you. What would you do then?" She really had no good answer to give, because there really was no good solution at that point. But it got her thinking that there was more to the equation to consider that just HER getting sick, she had to take into consideration MY health as well, because my being able to take care of her would be directly related to my own health.

That's also something to remind your parents of. That your ability - never mind your willingness - to caretake for them is directly affected by your well-being. And their seeming disregard for their health also directly affects YOU, because you are likely going to be the one to deal with whatever fallout occurs.
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Rbuser1 Jan 23, 2024
NGE, Oh yes, you said a mouthful regarding taking care of your own health. I've said the the same things to my Mom.
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It wasn't a parent, but my late husband. He saw either his neurologist or the neurologist's nurse practitioner every six months. But since this was an academic medical center, he also had detailed cognitive testing at these appointments. A graduate student took him to another room for the testing. Then I could tell the neurologist or nurse practitioner what was really going on. I was also there for every appointment with his family practice doctor. I'd stand behind him so I could shake my head "no" if he lied to the doctor.
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Klunderwood61 Jan 27, 2024
I also position myself behind my mother to make eye contact with her Dr. They all seem to look at me for the real answers. While my mother is not (always) trying to deceive, her short-term memory is nonexistent. This helps save her dignity instead of me answering for her.
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Doctors cannot call their patients "Liar!" They will not tell their patients "I know you're lying because your lab values are terrible." If a patient chooses to not tell the truth, most doctors just go with it. What else do you expect when they get 3 minutes with each patient? It's not the doctor's responsibility to care more about a patient's health than the patient does. Most people who are old, sedentary, and love their junk foods are not going to change. Does your father want to change? Or are you trying to force change upon him?
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Not2Easy Jan 30, 2024
At this point, neither one. He clearly doesn't want to change, or even try to eat right and exercise, and I'm not trying to force anything. Just want him to be honest with the doctors so they can treat him properly. Like many who have responded, I often nod or shake my head when the doctor is asking questions. The neurologist is very receptive to my reactions. I have access to his portal but don't usually reach out to the doctors through it because Dad is hypervigilant with that and anything online. I have used my mom's portal to message the doctor about dad a time or two.
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I live 1600 miles from my brother when he was having significant memory problems. We needed a diagnosis—was it early onset dementia? Shortly before he had insurance (Medicaid) lined up and an appointment set with a neurologist, I sent an email to the doctor detailing the memory problems he was having. When my niece took him to the neurologist the doctor spent ten minutes with them. He already had the picture of the problems. He didn’t ask many questions of my brother. From there he ordered an MRI to make a diagnosis. Ultimately he was diagnosed with a massive brain tumor—glioblastoma. In this case letting the doctor know what was going on before the appointment made a huge difference.
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TouchMatters Jan 27, 2024
Thank you. Good advice.
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Unfortunately, you're doing all you can do.... attend as many appointments as you can but.... I would call the doctor after every appointment I missed. I've found the best way, and most preferred by doctors, is to communicate with them through the patient portal.
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fluffy1966 Jan 27, 2024
Adult children whose parents 1) Have signed the HIPA release at the Doctor's office, giving permission for Med Office to communicate directly with their child or children, are way ahead of the situation. The Adult children must then learn to use the Patient Portal with the Dr's office: Username, password, the whole 9 yards. Then adult child can enter notes into the portal with "truthful observations" of how the parent is following doctor's orders.
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* Telling them once or numerous times isn't going to change the situation.

- Understand that they are re-acting out of fear of change and losing independence - and what this will (eventually) mean to them, i.e., deteriorating health, needing more care/givers, relocation-moving, At the least or most - SOME KIND OF CHANGE. Older people in decline (or not) do not want to change.

- When you understand their motivation, you can express compassion and understanding (not acceptance of their behavior (i.e., not sharing the truth with their MDs or others). You can talk to them about their fears of change - without judgment. Offer reflective listening, i.e., "I hear you saying XXX" - this gives them an opportunity to get their feelings out and share, and know it is okay to feel scared and it is okay to share with you how they feel.

- Do take time to listen to their needs, without judgment or confrontation.

- The goal is to give them space to freely talk about how they feel.

- The more you try to change them the more they will resist. It can be a tricky situation although take a step at a time.

You, too, be vulnerable / self-disclose how YOU feel. i.e., say "I feel scared at times when I ... xxx or when XXX happens . . . (When are the times when you) / Are there times when you feel scared, too?"

Medical Providers / Chart _____________________________

1) I would recommend that you put your concerns in writing to each medical provider so it is in your parents' chart 'on the first page.'

2) Ensure that paperwork in done re their medical records / chart giving you the legal right / authority to be informed, and as possible - a part of decision making of their heatlhcare (would mean a diagnosis of dementia).

Keep a journal of medical / cognitive changes. This kind of ongoing dated information is very helpful to MDs/providers. [I did / do this all the time with my clients: track changes.]

You need to be able to
1) talk to their medical providers (legally);
2) be with them during appts.
3) As you can, ask the medical providers to ONLY speak to your parents on the phone when you are also there. This needs to be in their chart, otherwise it sounds like a revolving door of mis-truths and likely / possibly mis-diagnoses, and VERY IMPORTANT: follow-up care.

In m own experience (w a client), I accompanied her into an exam and she lied about how much alcohol she was drinking daily. As this woman is an alcoholic, she certainly didn't want to share the truth. Drinking as she was could result in serious medical consequences due to falls, breaking bones, etc., and poor decision making, esp if dementia is involved.

It is not unusual that older people will lie to medical providers due to wanting to maintain the status quo of their life / lives. In some ways, we all want that - no or minimal day-to-day upsets or changes. We have enough stressors just surviving. No one wants to add 'more changes' to an already challenging or overwhelming life. Still, it is for their benefit to ensure they are getting the health/care they need which ultimately depends on how they speak to medical professionals, and to you.

None of this is easy. It is a process of learning as one goes.

Get the support YOU need to keep going. Take respites, try to eat healthier than not, get enough sleep and exercise. And, know I'll take my own advice and do my own PT exercises.

Gena / Touch Matters
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