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My mother has been showing signs of dementia for a while now. She now is starting to talk to people who are not there. And she has made comments about our 3rd floor walls being wet or covered in ice, which were not true. I grew up in this house the walls never feel wet, let alone have ice on them! There are other signs as well.


So, I called my mother's Dr and talked to the receptionist and told her who I was and who I was calling about. I went on telling her that I understand the HIPPA laws, & Dr & Pt confidentiality laws. I stated "I am not calling about any of my mother's health conditions, nor her treatments."


I explain my concerns to the receptionist and asked, could she put a note in my mother's file to check for dementia "memory test" and for a "CBC" infections.


The receptionist told me "no", there was nothing she could do, just that I could go to my mother's appt with her. I explained to this lady that my mother won't let me, and she said, "sorry can't help you".


Than I asked the receptionist not to tell my mother that I called because it will start a fight between my mother & me, and she could get very aggressive and could possibly do something to me. The receptionist said, "sorry I have to tell her, because you have inquired about her medical condition." I told her " I didn't and I was very clear about that. The receptionist said, "well, I will tell her you called". I said, "ok, but you are starting a problem." She said, "oh well, you shouldn't have called" and went on to tell me to have a good day. Ugh


What am I to do to get my mother the help she needs if no one listens to me? And why would the receptionist have to tell her?


I feel like I am watching a train wreck & nobody sees it or will listen to me.


Maybe I am just asking for too much! I'll just wait for my mother to go into a frizzy or fall before I can help her. I know my mother will get violent with me at some point!


Why would the receptionist need to tell my mother? Again, I never asked any questions about my mother's healthcare!


Just needed to vent! Ugh

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Shell I was once so enraged by the persistent appalling attitude and behaviour of a GP's receptionist I wrote a book about her. Literally! My little revenge fantasy, I've still got it somewhere...

If I were you, I should write a bare-bones summary of what you tried in vain to get across to Mrs Hitler there and send it, marked Confidential, to your mother's GP. You can do it by post, or electronically. Head it "Report, for information only." There is nothing in any law, code of conduct or indeed on God's green earth to prevent a doctor from receiving and noting information about a patient.

Now, to Mrs H's insistence that she is obliged to inform your mother that you called. I really doubt that, and I suspect her supervisor will put her right. Nevertheless, since in practice these *blasted* types are a bit of a law unto themselves, let us prepare for the worst.

So your mother toddles along for her next appointment, where Mrs H, no doubt bristling with her own self-importance, is delighted to inform her that you rang to speak to her doctor. She had *better not* phrase it as "rang your doctor about you" because that would be a gross misrepresentation of what you did, but this is a worst case scenario, so say she does. She's not the sharpest knife in the box, we know that, and she's not one for constructive discretion either. Ugh.

So your mother comes back with steam coming out of her ears and demands to know what you thought you were doing.

There is... plausible deniability. They say I rang? No idea what that's about. When was this supposed to be?

Or, there is... brushing it aside. Hm? Oh, that - yes, sure, I was just checking the date. (even better if she expects you to ferry her there and back, or there's some other reason you might need to know when her appointment is)

Or, and this wouldn't be before time, there is open defiance linked to sound rationale. Yes I did. There are things that your doctor needs to know. You're not telling him. Somebody needs to. So. What about it? Wanna bite me?

What sort of violence have you in mind?

The other reason to try again to flag your concerns with the doctor is this. Once the information has been passed to them, if they ignore it and something preventable happens, you have it on record that they *were* told.

That doesn't mean they can stop your mother falling or deteriorating because your mother is still free to refuse investigations and refuse treatment. But it does mean that her doctor will be in a better position to manage his patient to the best of his ability. You can but try.
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The "gatekeepers" to the doctor seem to be so common they are almost a stereotype and often the doctors seem to be oblivious to how difficult they make their patient's lives. I agree with CM, a "personal and confidential" letter to the MD if you can't get him/her on the phone, or perhaps you can book an appt to talk face to face..
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Countrymouse Nov 2018
My mother always called them "dragons" - like it was a job title!
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If your mom gets violent with you call 911 - she will be Baker Acted and possibly then at the hospital get the treatment and assessment she needs.
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Shell38314 Nov 2018
That is my plan. Thank you!
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Thank you CW & CM. I think I will take your advice about sending a letter to her dr.

Can I just thank you for your thoughts and support.

I told my mother that I called her dr because my BF & I were worry about her overall health and that we love her. She said, ok.
But she is passive aggressive and I am sure she will get back at me. She has been that way since I was a teenager. Time to lock my suff up. Sigh

God bless you all.
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Crafty789 Nov 2018
Please report that receptionist. That pisses me off, excuse my French. No reason for any of that. She could have left a note for the doctor or at least the nurse. That doesn’t go against HIPAA or anything like that. I’ve been through this as well. I tried calling one of mom’s doctors offices before an appointment she had and they left a note. Mom couldn’t find her car when she was leaving and had to go get them to help her and no one even called me or anything. I couldn’t otherwise get her to get checked for dementia because she insisted she was fine. One day, though, she passed out and crashed to the floor, so I took her to the ER and caught the doctor in the hallway. He said he couldn’t do anything but to follow up with her PCP, so I talked to her PCP who was great and referred her to a neurologist to “make sure her cancer hadn’t come back and gone to her brain”. This whole situation just sucks and I feel for you. You are not alone.
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This just caught my eye again

She said, "oh well, you shouldn't have called"

The receptionist believes that people ought not to report a potential problem to a person's doctor. She does, does she. I'd love to see her defend that statement in front of an ethics committee.
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Shell38314 Nov 2018
You & me both! You can imagine my shock when she told me "oh well, shouldn't have called".

What she do if she was in my shoes?
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My thought would have been not to talk to the receptionist as they usually have no medical knowledge but to ask to speak to the Dr's nurse and let her tell the Dr. You will not be breaking any HIPPA laws, you are just passing on your concerns. Now the nurse can't actually tell you anything about your mother but she can certainly talk to the Dr.
Good luck if Mom is explosive it will probably light a fuse if she finds out.
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I agree with Veronica. There is usually a Nurse in charge. I guess u don't have POA. I have come to the conclusion that if we are asked to care for a LO, u don't agree to it until a POA is in place.

I would write a letter to the doctor about the receptionist. She is the first person you talk to and should be more sympathetic to your concerns. I have been a receptionist and know what is expected. I have told a doctor that it would be nice if the receptionist could at least smile. I had one who didn't even acknowledge me until I said something. I stayed with a Dentist not so much because I liked him but because I liked his staff.
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Shell38314 Nov 2018
My mother does have POA'S, but a dr needs to sign them. Which it doesn't matter because my mother hid them from me. I have been looking for them. Thank you for your thoughts.
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Update:
I did tell my mother that I called her dr because my BF and I was concerned about her health.
Later she asked me what I wanted to know, so, I told her I wanted to know what her CBC, HgH, Pt and wanted to know how her memory was. I told her I was concerned that she could have an infection that is messing with her momory.(lied)

She gave the dr my note I wrote for him. So, her dr wrote a note back to me using some medical terminology & what her numbers were, which she doesn't know medical terminology.

Her blood work numbers he gave me are in normal range. He thinks dementia is mild, but sending her to a neurologist who specialize in Alz/dementia (memory test)

My mother thinks she is seeing the neurologist for an infection. But hey I'll take it. "What she doesn't know won't hurt her!"
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gdaughter Nov 2018
Sounds like you are already making progress. Hard situation if she won't switch MD's, though it appears the MD might be decent but his staff sucks! Best to go imo with a family practice person or geriatric. Neurologists with a specialty in dementia are best, as are their staffs, usually. I say usually because even the best can screw up as was the case when we got an appt with one of the best and most decent guys in town 4 months out. They sent a massive packet of forms and stuff to fill out ahead and sent one to both me at my PO Box address I'd provided...and one to mom...who was together enough to read the cover letter and call and cancel the appt as soon as it arrived...without MY knowing until the day of. One line you can try in a jam is to say I know you can't answer any questions but you CAN listen to what I have to say and make a note in the record. Another is to discreetly write a note and pass it to the MD or ask someone who greet to do so. Nurses might be a better help. Having hallucinations is a serious sign...hope it all works out well
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That's brilliant progress, Shell, well done!

From here, you can leave any explanations to the doctors themselves and have a clear conscience. When she goes to the memory clinic (or equivalent, whatever they call it in your neck of the woods) it is important that you go with her even though some of the tests she'll need to take unassisted. Is she going to agree? If not, tell her it'll be a long morning and you can just look after her things in the waiting room - two's company and all that...
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Shell38314 Nov 2018
Thank you so much. For your help.

God bless you.
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Dont give up. If you believe your mother is showing signs of dementia then you're probably correct. Find a gerontologist , they specialize with the elderly, Alzheimer's and Dementia... there's many doctors out there so find one that will help you or bypass the receptionist at the current doctor's office.... she's not the doctor or the nurse she's a receptionist.. she shouldn't be making those calls for you. Hang in there it's a tough disease pray and keep faith.
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The receptionist could handle it better if she said, “I can neither confirm or deny that anyone named is a patient” however you are welcome to leave information in writing or by voice mail. It may be heard..it may not. That’s your choice but we can neither confirm or deny that the person is a patient. “. This is a more appropriate response. I’m a licensed mental health professional and HIPAA rules are the same for us. A doctor can listen to information but if he/she is truly objective, which any doctor should be, then the doctor will come to such realization on his own only if HE sees evidence. I think this is the more professional way to handle it.

Obviously, they have to be cautious of ill-motivated others who could have ulterior motives for what they are saying or could even be lying. This is why such reports, by someone not authorized to communicate with the doctor, aren’t given much weight.
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You spoke to the wrong person - the receptionist really has no power or authority to do what you asked. Ask to speak to the nurse. Say that you are not asking them to discuss your medical records. But you want to relay relevant information. Also, get your mother to sign power of health care atorney; and authoriation for the dr. to talk to you. Don't do in the context of dementia - just that someone needs to have the authority to take care of health if she gets too sick to do it herself. Also, report the receptionist. She was rude and inappropriate. While it is not her job to take those kind of messages -- She should just said that she would connect you with the nurse.
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Mpost doctor's have a medical assistant or nurse. Call and leave the message for them. And writing a letter is another good one. I have also taken a note with me asking to speak to doctor privately a moment before they meet with mom. I give to receptionist to give it to the MA or MD. It has worked every time.

I do not understand why doctor has to sign POA. Both my parents have signed them for medical so I can do paperwork for them. They do not have to be incompetent to have a durable POA.
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The same thing happened to me but with hospice who was coming to mom's house. They told me that they couldn't speak to me & I continued to tell them I wasn't looking for info on mom's medical condition I just wanted to let them know what was going on. They were very rude to me and said there was a no contact order against me from my brother who has POA. There isn't but they believed my brother who has isolated mom from me & my family for over a year.
My mom is 96 & has had dementia for quite a few years now. The medical field should have an open mind & check into any statement for the health of the patient.
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My favorite response to what I call “pit bulls” is how’s your grandmother doing? They usually answer, why? I say just curious because I hope you have to experience what you just put me through.

We got lucky - I asked Mom how her dr appointment went. She said she didn’t remember. We went to the next one and found out they had a way to communicate via computer. We signed her up. Answer solved with bypassing the pit bull.
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You need to report the receptionist in WRITING to the office management and Physician. Must of been one of those stupid mellennials !!!!!
I have been able to talk to the nurse off to the side about my moms change in behavior and conditions, the Physician as well. My mom and I get checked into the room at doctors office- tell my mom I have to use the ladies room, hence opportunity to converse with nurse and or physician in the hallway or sometimes I had to wait outside hallway prior to physician going into the room and explain my concerns. Is it sneaky, YES.. but it worked.. This was the early stages of many "battles" with my mom. Hang in there and do not give up since you know your mom more than anyone else..
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I have worked as a MOA and this woman’s behaviour is out of line. If there is an office manager I would call and speak with them. If not a letter to the doctor marked personal and confidential outlining her behaviour and your concerns should be sent.

A second letter with your concerns about your mother should be sent marked personal and confidential. You should not have to send this second letter, the receptionist should have done as you requested and put a note with your concerns in the chart.
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Most Doctor's offices now have "Portals" where you can leave a message for the doctor. Since it is medical conversation between the patient and the doctor usualy the doctor or nurse are the only ones to view the message. If your Mom's doctor's office has this you can leave a message on the portal and the doctor will be able to see it. I would also send a letter to the office detailing the conversation you had with the receptionist. This needs to be reported.
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Judysai422 Nov 2018
Be careful...i used Portalefrecce.it that was supposed to go to doctor and MA...it did not! The receptionist saw it!
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My sister lives with me. I am retired now so I am home all the time. She is the oldest and I am the youngest of eight. She had taken care of our father until his death. Her only child died some years ago.

After moving in with me we talked about living will and durable power of attorney, medical and business things. She remains in charge of her business but I started to notice some things changing in her thought process. She started complaining to a sister about me going with her to her Dr. appointments. I started letting her go in alone sometimes. The system that we have connected with our medical team allows me to post questions for them to ask her during her appointments. I can also call her Dr. to ask questions as well.

They have a copy on file of her medical proxy in the Dr.'s office so there is no HIPPA violations. This may be something that you could look into for your mother. Just a thought.
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My sister and I both have POA signed by Mom's Internist, but she refused to talk to us about possible dementia!! Said no doctor would test someone on anothers request, had to be the patient who asked!!
Makes no sense to me.
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Nanabinx Nov 2018
In the beginning of my journey I went to a support group re: Alzeimers/dementia. People spoke about "we have to lie to them"!
Didn't sit well with me but I try to read as much as I can on how other caregivers deal. I excused my husbands rude and nasty behavior with that he couldn't remember & it's not his fault.
After much anger, resentment, & frustration caused for me, it's not easy but I'm learning more and more to be patient, ans. some of his questions with an "I don't know." (white lie?) As often as he is receptive I'll quietly explain his whys to him. He listens better if he is not challenged and he seems to understand although he may forget in a few minutes & ask again. I give him the answer again. If he gets to insistent I carefully find a reason to leave the room. is; " oops I have to go potty " he forgets by the time I'm back. 😥 But it works.
You are blessed with sister, someone to share in helping. You'll
get there and a lot of it won't make sense. Like when I tell my hubby I love him & he says " I love you more." then other times he glares at me like I insulted him! 🙄 Oh well. Just have to let it go.
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I have learned much on this site. Especially from caregivers questions & comments. Thank you. It's my first time " jumping in?" I related with "Called my mothers dr. Ugh" , in a big way. Being care giver to my husband ( vascular dementia) for almost five yrs. I have dealt with many Drs. , DAs, receptionists, hospital staffs etc. Prayed for and learned to be bold, ask questions and learn as much as I can about this desease/condition. My saving grace was that my husband & I prepared POAs & what our wishes are many yrs. ago. Yes copies of his POA have been requested and had to be sent to various places. I believe everybody should prepare these while we are all lucid and healthy. Now I am privy to all of his information and no one will treat him without me being present. Although not easy, all decisions now fall on me. As a woman of faith I rely strongly on prayer because without His grace I could buckle.
So to Ugh I offer prayers. May you be granted boldness, strength and the means that quietly and patiently demand, yes demand to speak with someone above any one that is rude, condescending or belittles you!
Your mother IS important as are you. It's not all about us knowing that these people deal with many patients but that is not an excuse we should except. As a senior (76 yrs. old) I see especially seniors, agree with anything they are told they need, what & how to do it. Age does not = stupidity! I wish you better days and leave with a funny story? I took my husband for an eye exam, a young lady calls him in saying his name in a very loud voice. He rose and said " I'm old not deaf!" 👍🏼 His hungry now, gots to go.
God bless.
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Your mother needs to complete a health care power of attorney. She can name you or someone else, but it is very important since that person makes decisions in the event she is not conscious or able to make health care decisions. This goes along with other legal documents such as financial power of attorney and executor of her estate. Some of these forms are available on the Internet, but be sure the ones you use are FOR YOUR STATE since some laws vary by state. I would begin by talking with her about who she wants to make those decisions in the event of a health crisis. This might eventually transition to discussions about Do Not Resuscitate orders or Comfort Care. I approached it with my mother by asking her what her wishes were. You may need to bring it up gently and frequently if the topic makes her uncomfortable. The key is, “I want to know how YOU feel, Mom.” If you do have health care power, her doctor can communicate with you.
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My MIL has dementia and also has a Guardian. My husband was her DPOA and he was diagnosed with Vascular Dementia...thus the Guardian.
So MIL won't let me sit with her to see the doctor and I let it go because legally I have no right.
HIPPA does not allow a receptionist to talk about a patient, nor can a nurse or doctor unless the patient has signed a consent form.

Look to an elder attorney for some help perhaps?
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rovana Nov 2018
ValRae - it is OK for someone to GIVE information to the doctor/nurse, etc. - that does not violate HIPPA. Just not ok for them to discuss it with you, or provide you medical information without you being named on HIPPA form. Now I think that it would have been better to make a written message to give to the doctor.  No HIPPA problem here and it is none of the receptionist's business in any case.   And of course I doubt that the receptionist should be asked to do anything with a medical file.  Just give messages to the doctor.
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I can relate too well to this. I tried slipping notes to my Mom’s doctor and she would insensitively go over my comments with her. I would vow never to put my Mom through such a humiliating experience again. But she actually forgot about them quickly. A good neurologist would privately read my typed notes (as brief as possible) before each appointment and proceed. It all breaks your heart. After a certain point though, there will be no grey area anymore. The dementia will be impossible to hide from anyone ever. At least that’s what happened in my Mom’s case.
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Ugh, this is exactly why I made my mom’s trust and POA name me as a co-trustee, co partner, whatever the term is, plus I got a form from the attorney that I’ve sent to all health care workers that says if I want to talk to you about Mom, you will talk to me, and my mother signed it. My mom specifically told me, “hey if I can’t understand it, or articulate it, or hear it, somebody better.” My mom is 80 and doing very well but she accepts there might be a day or two when she’s not.

As far as the staff in the doctors office is concerned, a more rude response and uncaring attitude could not be had. “Well you shouldn’t have called,” is an unacceptable answer. She may as well have followed it with, “And we’ll send you the bill.” The last time a doctors office staff got lippy with me was the last time. I had a nice long chat with the doctor about some of the flippant answers I got and that maybe “we should find another physician.” I am NOT afraid to take it to the top. I’m sure when the staff sees me they roll their eyes now.

Take good care, and continue to fight for what you know is in your mom’s best interest. It’ll be in yours, too.
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I agree with the above, ask to speak with a nurse who can list your concerns and make a note for the doctor. I was in your shoes last year at this time. My mother found out about my call to her doctor, but it resulted in having her memory tested and receiving medication to help alleviate the affects of cognitive impairment. Upon her doctor's suggestion we now have senior help once a week and have moved my parents to a senior living apartment. It's been an incredibly tough year, but we're on the other side of this part of the challenge and open about my mother's diagnosis. My parents are now in a very comfortable apartment and socializing on a regular basis. Hang in there.
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My brother and I both called the doctor's office this week. Neither of us are listed as people empowered to receive information, probably due to our suggestions since last year that she needed to be tested and possibly go to assisted living. I told my brother that I didn't need the results, I just wanted her to get help and treatment. Eventually we will need to have more power; she is getting worse.

I hate how evil that secretary was. She should be horsewhipped.
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I, too, have a mother who is "fiercely independent" (her words) but the emphasis is on "fierce". She is not aging "gracefully".

I was seeing signs of dementia with my mom and went to talk to counselors at the Alzheimer's Associations Early Intervention Program. They advised me that the symptoms I was describing were already behind the early intervention stage and that I needed to start with Mom's doctor doing an in-office memory test to establish a baseline. I knew that Mom would go through the roof if she knew I asked him to do this and I could never ask for it to be done in front of her. So, I contacted the office before her appointment and asked for the test stressing that the doctor COULD NOT tell her I asked for the test. He was doing a required Medicare assessment at that visit and all he had to do was tell her that this simple memory test was part of that assessment and Mom would have accepted that and cooperated.

Mom only allowed me to go to appointments with her when her hearing became so bad that she needed me to interpret what she was being told. I was unable to go with her to that particular appointment because I had jury duty so her caregiver went. When I got home that day, I found out why my Mom was furious with me. The caregiver was appalled at how the doctor handled it. He told Mom outright that "her children" wanted him to do a memory test "to see if she needed to be put into a home." I have no idea where he got that. I had just moved into a different house so that I could be next door to my Mom and take care of her. I wouldn't have done that if I was looking to put her into a home!

Mom was outraged and it started a battle that has continued and is not going well. Mom's paranoia is off the charts because she trusts the doctor but now doesn't trust me. This had been my own doctor for years but I changed doctors because, if he would betray my trust like this, I could not trust him with my own medical care.

I made an appointment and went to see this doctor personally. He apologized and said he didn't mean to "throw me under the bus". He said he did it because he thought I wanted to get him involved in placing Mom in a facility and he didn't want to be put in the middle. He said if we'd had this conversation before the appointment with Mom that he would have handled it differently.

So, my advice in situations like this is:
1) See your Mom's doctor first. Make an appointment to meet with him. You may have to pay for a 15 minute visit but it's worth it. Come up with a strategy for him to do the test without your name coming up at all.
2) If possible, see a geriatric specialist. My Mom wouldn't go but my own new doctor is a geriatric specialist and it makes a difference. Family physicians don't always have the expertise needed.
3) Yes, get POA's signed, if your Mom will agree to it. It was another battle in my case. However, you need to know that POA's are fleeting. Your Mom can verbally rescind the POA just by telling her doctor (or anyone) that she doesn't want you as her POA. The only way to keep that from happening is to have your mother declared incompetent and become her legal guardian, which involves going to court. It's heartbreaking to go through and can be costly. You have to have a lawyer. The court will assign a lawyer for your mother. Her doctor needs to be on board to sign paperwork and do an assessment (doctors don't like to get involved in this). Despite all that, the Judge will make his own decision about competency and I know that my Mom could fool anyone who only talks to her for a few minutes at a time. But when you have a parent who is no longer able to care for themselves but refuses help, is belligerent, making bad decisions, etc.--guardianship may be the only answer.
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Receptionist is way out of line. You could ask to talk to office manager to register a complaint.  I don't know about putting a note in file, but did you leave a written message to give to her doctor?
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Report Her. Please. These millennials take too much authority upon themselves with minimal knowledge. Sad. Someone needs to speak up esp. YOU. She was out of line.
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