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My mother has a diagnosis of vascular dementia with behavioral changes and has narcissistic tendencies. She can still pull it together enough to sound like she knows what she’s talking about so medical personnel address her with questions and accept her answers even after I correct it. Some don’t really matter, like her claim to be 5’7” rather than her actual 5’3” or 4” but some, like she hasn’t fallen (actually a fall 5 months ago that broke her hip, still high fall risk at the ALF) or that she lives alone and works (actually ALF for over 2 yrs ) could make a huge difference. Took her to a new cardiologist yesterday and noticed after the visit notes including her crazy answers as fact rather than the answers I gave.


Even correcting the answers makes my mother get angry but I don’t get why the Drs take her as fact or how to get them changed when she has a dementia dx. I’m her medical POA but I don’t think they even look most of the time.


Yesterday the Dr made a point of handing her the after visit summary and discussion of follow up with her🙄🙄🙄. Dignity is one thing but truthfully sometimes that borders on stupidity.

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A few years back, my mother forbade me from going into the MD examining room with her (because she was sensing that the dr. was talking to me and not her; what was happening was that my mother wasn't hearing the dr.).

So the dr. didn't realize the showtiming that was going on from that point on. "Did you tell the dr. that you are only showering once a week because you have such difficulty getting into and out of the tub?" "I'm not going to tell her THAT!" was the response. I find it hard to believe that the dr. didn't suspect some dementia, but I think that as long as my mother wasn't still driving (she wasn't, as I was the Dummy Daughter Driver), that the rest of my mother's life didn't matter to the dr. (she knew there was a local daughter -- me). But once she became hospitalized/then rehab/then permanent placement in SNF, the staff included me in everything and didn't seem to take my mother's input unless it was whether or not she was in pain. My mother's dementia (long hidden, but I knew and sometime felt that people didn't believe me) had become full-blown by that time.

I always had access to her MyChart, so kept track of her health that way, even though I didn't go in to the dr. appointments that last two years or so (unless it was an ER visit; I always went in for those).
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It is uncomfortable to speak for a parent. I always feel like I am overstepping but sometimes my mom will not say things that she should say or she will say things that she shouldn’t.

For instance, with home health the lady who bathes mom is at least 400 lbs. I am not making fun of her but she does seem to have mobility issues and doesn’t do the greatest job.

When the nurse asked if she was satisfied with her aide mom said to the nurse, “Well, she can barely fit in our small bathroom!” It isn’t a small bathroom. But mom didn’t want to insult her. I had to explain what was happening.

I gave the aide specific instructions on mom. She doesn’t follow the instructions. I am polite with her but she tells me, “Oh, let your mom do everything that she can by herself.” I get that but mom can’t reach because of a rotator cuff issue.

It ended up being a total waste of time explaining our experience because the nurse proceeded to tell me that I was speaking for my mom. Grrrrrrr! So, I just didn’t say anything else. Kind of annoying because why ask a question if she didn’t want an honest answer?
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I know what you mean. It’s infuriating. I found that I have to be like a school teacher controlling the attention span of a child. Their answers are standard and they love to cut you off. I check everything and ask questions it’s what you have to do every time
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Yes so frustrating. Maybe try to let the 5"7 wash over you but ensure the vital stuff is correct (about heart, falls etc)

Like others, I've resorted to the subtle head shake, the wide eyed look & written letter dropped off for the Doctor - either before or after. Especially if getting out is hard for you, write letters or use tech methods.

My sister has mental illness, funny how I never considered vascular dementia as well (even thought Mum is on that road) - who knows? She has 'wishful thinking' & has memorably said to a new Specialist "I NEVER fall. Well not anymore. Not for ages". I looked over to big bandage on thumb (from latest fall). Doctor questions. Answer: "But then I went & fell TWICE last week". LOL! This silliness was new to me but Health Professionals must see this ALL the time.

Also, "Yes I do my own shopping". Some questions. Answers included "My Dad writes a shopping list. My Dad buys it online. My Dad pays for it. My Carer picks it up. My Carer puts it away in the cupboards".

It helps me if I can have a laugh (later) but also to remember these symptoms are caused by her brain. The lights are on but a lot of fuses have blown.

Good luck for your journey with this.
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I ask the exact same question every single time we're at the hospital or a rehab facility or wherever, and my mother with DEMENTIA is being questioned in earnest by the doctor. He's recording her answers as if they bore ANY semblance of truth to them, without batting an eye. Um, do you realize the woman has DEMENTIA? Oh no, she says, all innocence and light, I've never fallen. Really? How about the 3 DOZEN times I know about, the countless times I don't know about, the broken ribs and sternum bones she managed to hide but showed up on the CT scans in various stages of healing, and on and on. I am her medical POA and I'm sitting right there, yet SHE is asked the questions, regardless of her mental disability. It's ludicrous, really, and just another example of the sheer incompetence we're faced with when dealing with care for the geriatric crowd. It's kind of like the pediatrician asking the 4 year old for her health history, isn't It? That would never happen, yet our mother's are taken at their word no matter WHAT condition their mind is In! Our medical community needs to come into this forum and read up about what it's REALLY all about to care for the elderly. They'd learn an awful lot!
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It makes me think of how us kids think our mom had an agreement with her physician that she didn't want care to prolong her life. She was ready to go. She knew us kids would protest and intervene. Doctor/Patient confidentiality.
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Jannner Jul 2019
I’m her medical POA
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Since it was a new Dr, it was likely he had no medical proof to make him doubt her. (Could you request medical notes from the person who diagnosed her dimentia?) Also bring copy of hospital notes on broken hip, to show to any new Drs. That kind of stuff would be objective proof. Otherwise, just stay in the waiting room next time she visits the Dr. so you don't have to listen to her lying. In the end, it's not worth letting her drive you crazy. That's what I ended up doing after my mother got mad at me for telling her Dr the truth. Good luck.
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Jannner Jul 2019
It was in her chart as I take her to only one hospital system. I also pointed out the letter with the diagnosis from the dr . I said she has a new diagnosis there on that letter. He was aware of it because he said neurology would handle it, not vascular.
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Oh I get that & it’s so frustrating! Our Dr thinks my mother is the next best thing to chocolate when she’s in his office, acting all sweet. The Dr does look at me after he asks a question but I don’t really think he cares what I think or say. Maybe they think we have dementia too???? I think a consultation type appt would be good to schedule to discuss mom. Schedule first thing in am before he starts his busy day & isn’t exhausted. Maybe they’ll listen.
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The first thing that needs to be done is getting POA over her health. If she is still in control of medical decisions the staff will always go to her first. Express this to the social worker on call at her facility. If the doctors are ignoring you then the social worker will step in on your behalf.
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Jannner Jul 2019
I have it, it’s in her chart and I point it out
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Persons with vascular dementia go through a stage of "confabulation" where they make up information (1) to fill in memory gaps and (2) to save face.

It's clear that your mother is seeing herself "as she used to be" in her prime. Perhaps she was 5'7" as a young woman; after all, everyone shrinks in height with age. Perhaps she was employed full-time and lived alone at some point in her past. It may not be intentional lying on her part; she may actually see herself as a moderately tall, young, vibrant, independent woman.

My father had vascular dementia - and I saw the same behaviors in him.

The medical staff may not be taking correct notes for her condition. The most correct way is to write something like, "Patient stated that she works full-time as a secretary and lives alone in an apartment" - or whatever applies. That way, it is a simple report of "what the patient stated" rather than fact.
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Jannner Jul 2019
I’m sure she is to a degree seeing herself differently than she is . Being narcissist comes with a inflated opinion of oneself anyway. I don’t expect her to be truthful as that’s how she’s lived her whole life but I do except the drs to question it now with a concrete diagnosis of dementia. I’m used to her deception, I just don’t know how to get thru to the staff she’s giving them a line. And like I said before, I pick my battles with her. Any fool can see she’s never been 5’7” in her life when she’s probably around 5’3” now , maybe less because she has osteoporosis she refused to medicate for . ( they weigh her but don’t measure her although when I questioned it she claimed they measured everyone ‘s height at the ASL the day before, nope lol) but they don’t see the kidney cancer hasn’t recurred in 20 years , that she is incapable of handling her appointments or medications, that her legs haven’t been ballooning her whole life etc.
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So many people do not know the unique problems those with vascular dementia have so getting care providers to realize what is really happening takes great persistence. I can empathize with you because people are always my husband to be like those with Alzheimer's dementia and he just is not.
Do you have medical power of attorney for her? Or are you her contact person? If so, contact them on your own and set the record straight because down the road the reality of her situation may be impacted by this information.
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Jannner Jul 2019
Thanks , that is what I feel as well. It’s an important diagnosis to just ignore. I am Medical POA and contact person. When she broke her hip, she went to another hospital system . She favors that one but it’s awful. They missed or ignored her macular degeneration until she totally lost vision in one eye and partial in the other, we had been asking the eye dr why she couldn’t see, thinking her eyeglass prescription was off . They also missed her previous strokes, although I repeatedly asked the cardiologist if the dementia could be due to strokes since her parents had them. That, plus the mess they had her information in is why she’s going to new drs.,
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I've noticed when I take Mom to doctor appt. They talk to her directly and ask her questions. Sometimes she can answer but it becomes very apparent very quickly that her responses aren't all there. Many times she will try to answer and then looks to me to confirm what she is saying. If what she says is really far off but seems to be accepted as fact by the Dr. I'll just give him a wide eyed look and a subtle shake of my head. Later I'll leave him an e-note for her record. Many people don't like the computer for communicating with the Dr. But I find it makes life so much easier. She is able to maintain her autonomy and I am able to keep the Dr corrected on the important stuff. Like the 15 falls and 6 ER visits since Jan. When she claims no falls and walking without difficulty. She uses a walker and drags her left foot.
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mmcmahon12000 Jul 2019
Oh man, that sucks. I'm sorry you're going through this with your Mom. But at least she's got you as her advocate. Keep doing what you're doing for her. Hugs.
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Just skimming some of the posts below it looks like your mom's medical team t least for the most part is using My Chart and your mom is participating. This has been a godsend for us because I can communicate with all (accept one) of Mom's doctors this way. As you have MPOA and access to her account (I never had to prove POA just my access to her account seemed to do it) you should be able to just send a note to providers either before an appointment and or after to make sure they are up to speed. But her cognitive issues and tendency to see her own truth should all be part of her medical history, the fall, her current residence are all part of the record that follows her and is part of the provider portion of the system that included My Chart, at least it is for my mom. Now a lazy doctor who doesn't take the time to know these things or have staff making sure they know ahead of an appointment is one I'm not sure I would stick with but that's up to you. Your mom's primary should be managing this as well, I assume her PC was the one who referred her to this cardiologist? I ask because typically the referring doctor sends a note to the new specialist filling them in on the pertinent info but again I guess the specialist needs to read that... I would let her PC and whoever it was that referred her to this cardiologist (if they aren't the same) know about the experience and your concern, they might refer you to someone else or get in touch with the new cardiologist and get them straightened out on things but it is important they know because they are deciding who to refer which patients to and it might sway that for others in the future.

Also while my mom as well will answer questions opposite of the way we might for her it isn't because she is actually lying. She will knowingly stretch the truth to look better sometimes but more often she remembers things with rose colored glasses and because she has been deaf in one ear most of her life it comes naturally to her to agree her way through conversations even when she has no idea what was asked or said she convinces you she does. If your mom is telling people she lives on her own and still works it may not be a lie at all it may simply be what she believes or remembers at the time. So I might not tell doctors she lies but rather her reality is sometimes from the past rather than today's reality and while you want her to feel in control and keep her dignity it's important they look for silent ques from you on important questions and or communicate with you through the My Chart system or in person with any questions or information of importance. Again her PC should be able to put that note prominently in her electronic chart.
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Jannner Jul 2019
I talked to her PCP about the shift to all drs in one system but she didn’t recommend a particular cardiologist. My daughter works for that same system so she asks around to get the one most staff thinks is best lol.

I do think I'm going to start using My Chart to warn them pre-appointment. If they don’t like it, I guess they aren’t the best fit for us. I had tried to do that with a couple of her old drs but they told her and she banned me from taking her for a while but I’m the only one who can now so too bad lol. My mother doesn’t use it at all, only my daughter and I use it for her .
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Mom’s history, diagnosis and even the narcissism is a carbon-copy of your situation and my sister, just last week, had a particularly ugly scene in an appointment with a new neurologist where Mom started yelling that she was being blackmailed (wrong word, but implied sabotage), because my sister wanted the doctor to know about the diagnosis of vascular dementia and some of the episodes of confusion and paranoia. My sister has pretty much sacrificed her life to the PoA role, is so patient and sweet, and it is so hard on her when these outbursts happen. The Patient Portal suggestion might be helpful.
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In my case, it’s my sister in laws who tell me that MIL is “really with it “. They don’t like it when I take notes and email a summary of my visit. Of course, if they visited more than once a month, it might be different. I drive 45 minutes and they are much closer. One even lives .5 miles from ALF.
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Harpcat Jul 2019
I’m curious then why they don’t go instead? Are you the one with MPOA?
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My step fathers wife does the same thing, she has Dementia/ALZ, maybe stage 5, the doctors are useless in figuring out whether she has Alzheimer's or Dementia. Anyway, when we were cleaning out their house we saw a receipt from when she was in the hospital for broken ribs last July (un beknownst to us) we and the doctor asked her about it, she said she wasn't. She wasn't lying, she just didn't remember. Many other scenarios, my brother talks right to the doctors now, not her, so we know what is going on.
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If she has dementia, think of her answers as "wishful thinking" rather than lying. Be a little more understanding that her mind is not functioning logically. Try not to correct her in a way that makes her feel denegrated. You need to talk to the doctors when she is not there, and you should be providing her medical history. The suggestion to inform her doctors in writing is a good one.
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It sounds unrealistic for you to attend all of her doctors' visits because of your own health issues. Her doctors do need to be informed *by you* **in writing** that you are her medical POA and scheduling visits and reporting results must be done with you and only you. Whichever doctor diagnosed her vascular dementia wrote a report that was sent to her PCP, if he was the one who referred her for neurologic testing. Get and copy that report and attach it to a copy of your medical POA documentation and send it certified mail return receipt requested to the new cardiologist. Once you get the signed card, call the office and confirm that the report has been added to your mother's medical record, and request a call back from the cardiologist acknowledging same.
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Schedule a consultation with her medical team and inform them of your mother's tendency to lie. Hand them your medical POA and make them look at it. Also, while my mother never outright lied, she often didn't understand or follow a question and would answer with something completely off the wall. I went to every appointment with her and if that happened then, I would just shake my head to let them know of her error. I was fortunate that her doctor was also my doctor so he was very accommodating with that understanding.
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DILKimba Jul 2019
We had that blessing too. When my Inlaws moved back to town 7 years ago, we were able to get them on with our doctor, and that has helped TREMENDOUSLY. Now they see the doctor at the AL and they TOTALLY get the whole made up answers situation! ;-)
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Most Doctors offices now have "Patient Portals" that you could set up.
The advantage is you can send messages to the doctors offices.
Prior to the visit send a message "reminding" the doctor and the staff that mom has dementia and that she had surgery for a broken hip on...since the last visit she has fallen ..X number of times..and any other information you want them to know.
Also instruct them to also give you a copy of the "after visit" notes.
I might add that if you are in the room with her during the visit and the doctor does go over any follow up information he or she may be talking to your mom but the information is also being imparted to you and this may be a way of keeping you informed but also respecting your mom as an adult that still might be able to make some decisions on her care.
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Jannner Jul 2019
That’s a good idea. I can email them on MyChart and I think it gets sent to the dr directly

i actually have to give a copy to the ALF as well so last time I had them print out her coming appointments and gave her that instead. She has macular degeneration so can barely read anyway, I don’t think she knew the difference. Although now she may call me everyday multiple times a day thinking she missed her appointments again if she can make it out lol.
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You brought it up —let your Mom maintain dignity - even if you harbor resentment. Her doctors are trained professionals, perfectly equipped with the ability to examine and analyze her condition. The only thing you must correct are relevant facts of medical necessity. (Do so out of your Mom’s earshot to avoid embarrassing or humiliating her).
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Jannner Jul 2019
That’s the whole point, they don’t correct it. She still has that she currently has kidney cancer in her chart from 20 years ago when she had a kidney removed for a localized tumor.
Who am I harboring resent towards exactly?
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Who deamed Mom as having Dementia? I hope a neurogist and not a PCP. Whoever diagnosed her, that paperwork needs to be in all her doctors files. If u haven't been going to appts with her, u need to. Right in the room. I always wrote a list of things I had seen. Changes. I would give this to the receptionist for the doctor. Then his questions could be based on what I had written. Your POA should be on file too.

My Mom's Dementia was noticeable. I had asked that no one talk to her about her care. If I wasn't there, I was to be called. I showed up one day to two nurses (think they were students) explaining what was going to happen to my Mom. I told them she lost them after the first word. Her ability to process was really bad. My DH has lost hearing in his left ear and has maybe 20% in his right with an aid. Deaf without it. Domu think I can get doctors and nurses to understand this? No. I called one doctors office and asked the Nurse to put a pc of paper with the words DEAF where it was the first thing the doctor saw in the folder. My DH could not get this man to look at him when he talked.
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DILKimba Jul 2019
This is what we have done also. Write an update and give it to the receptionist when checking in to help guide the doctor on what is going on.
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Janner, ah yes, the "I am fine" when one's parents are at a doctor's appointment.

My parents had a great geriatric physician, any time she would ask my parent(s) a question, she would glance at me to see if I shaking my head yes or no. If "no" then she would quiz my parent(s) until she got a good answer. I was always sitting behind my parents in the exam room so my parents didn't know what I was doing :P

My Dad was pretty good at being upfront with his doctors, but not my Mom. My Mom was always in denial that she was aging [in her 90's].
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Jannner Jul 2019
Yes, my mother has always been independent to a fault. She refused to even allow anyone to go on dr appointments with her or my stepfather . That way no one could know what the dr really said. The problem being due to her personality disorder and delusional thinking , she doesn’t admit anything she views as a “ flaw” and all illnesses are “ flaws” to her. Every dr appointment is her screaming at me the entire way over , her showing her “ sweet as pie rational as possible “ side to the dr ( except the neurologist, that one heard words she probably never thought a 92 yr old even knew lol) then back to MS. Crab on the way home lol. If I could just get them to understand the situation I could give them clues but she is still great at conning people. Eventually, I think the dementia will supersede the narcissist personality but it hasn’t yet.
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I sympathise.

Q: Do you have any health problems?
A: No, I'm fine.

Apart from the congestive heart failure, chronic kidney disease, hip replacement, gastric ulcer....

Mother later explained that she "didn't count" anything that was controlled by medication. The appointment when a nurse practitioner cancelled her pacemaker implant based on mother's claim that she could walk up to a mile "but I get a bit tired" was the last mother ever went to alone. It was supposed to be a chat about living with heart failure. No examination, no investigations, no corroboration; and interestingly no cancellation letter, either - I found out by luck. I quite enjoyed following that one up.

We have to go through this grey area, only not so much grey as Kafkaesque, while our demented elders are not yet officially away with the fairies, or whatever technical term your jurisdiction uses.

I take it your mother's medical teams are actually *acting* - prescribing, treating, etc. - based on their clinical observations and your contributions, rather than your mother's claims? Assuming that is so, and you and they both have the obvious risks covered, then there are at least three things to be said for solemnly writing down the patient's own account.

1. As you already said, respecting the person's dignity and autonomy, as far as it remains possible;

2. The discrepancies between the patient's own understanding versus the results of scans, blood tests, clinical examinations and reliable witness accounts are in themselves helpful to understanding the patient's mental state;

3. The practitioner needs to develop a relationship with the patient. Upsetting, provoking, challenging or contradicting the patient is not going to help that. Gentle questions and explanations will work better but first you have to establish trust.

So I wouldn't be fooled. The fact that the doctor is keeping a straight face and handing over the notes doesn't for a second mean that the doctor actually believes that your mother is CEO of a tech company (though she may be! How would I know?). But I think you already know that perfectly well - is there a nice soft surface you can go and bang your head against?
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Jannner Jul 2019
Lol! My mother actually told one dr. she went back packing and mountain climbing while really she can’t stand in a grocery store line. I think he realized that was a fib .

I have a great rapport with the NP who handles my mother’s daily care who happens to also have a mother with not quite as advanced dementia as my mom. I think I’m more concerned about if an emergency arises. When she broke her hip , the hospital had old and new info mixed together which followed her then to rehab and respite and her current ALF. So I know it’s very hard to get faulty info removed once added , basically it can be corrected in 10 places but still wrong in one lone department so given as current info. 🙄.
I totally get the establishing rapport, I was just shocked to find they actually entered her answers into her chart even after I mentioned it.
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You are medical POA now for someone with vascular dementia; it would be so much better now if you would just attend all MD appointments with Mom if you are in the same city, so that you can gently correct crucial information like fall history. Explain the need for this by letter with all MD and Nurse Practioner etc. Because yes, esp with the Narcissistic mixed in, confabulation can lead to medical folks honestly believing a good story.
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Jannner Jul 2019
I do, I have serious debilitating illnesses myself , basically housebound , but always drag myself to any new drs and my husband takes her to repeats if I can’t go to them. We always go in with her. I always correct her nicely, ie “ oh remember when you fell and broke your hip? That was only 5 months ago so I guess you have fallen in the past year” Or when she said she lived alone I said to the nurse” That paperwork I gave you is from the ALF she lives at” . If I ever said outright she was wrong her head would explode lol
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