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Nikiniki31 Asked May 2021

Frustrated and tired! How the heck do you get a diagnosis and a direction?!

I am so frustrated. I took my mom to Dr to see if she had dementia. Some of you advised writing note to Dr. so I wrote up some of the issues ( not showering, confusion, missed or mixed up meds, hoarding etc. )Dr walked into visit with note in hand and asked me if I wrote it. I was a little taken back that she did this in front of mom when I was going for discreet and hoping for her to help. Now mom is more uncooperative than before. She has had 2 UTI’s since being here end of November. Finally took her to urgent care because she was confused and doing odd things (bought 40 hamburgers, fries and 20 diet Coke’s on a random day. Nobody to eat it all so had to dump out all but her 1 drink and she threw the rest in freezer to eat later) Dr gave us a referral for mental health because of her depression and to see if we could get answers. If I mention anything about her hygiene she says she doesn’t want to be treated like a child and wishes she were dead. I have tried everything but calling in someone to assist her with showers because she flips out about it but I feel like it’s a vicious cycle. She sits in room 22 hours a day drinks Diet Coke and goes 2 weeks without showers. Wearing same clothing to bed and through days. She’s causing the UTIs by doing this but refuses help in any way. She wants hugs and physical contact but is greasy and stinks. She’s doing everything she can against herself but is constantly pissed at me because I’m doing something about it. I know in my heart she is mentally ill. How the heck do you get a diagnosis and a direction?!

Nikiniki31 May 2021
Update. We took her to her appointment yesterday. I told her she had her Dr appointment and took her to lunch and was in pretty good spirits before appointment. She had forgotten it was the mental health Dr by the time we pulled up I was scared she wasn’t going to go in. But we made it in and she was really liked the Dr. we walked in and she had me stay for the 1st bit of appointment. She asked mom a few questions and mom started getting defensive and tried to push it my direction so I could answer the questions but I just said the appointment is for you and she needs to hear from you. She later asked me a few questions to clear a few things up but in the end I left and they talked and tested her and when I came back in she told me she had cognitive dementia and gave her a couple meds to help and some ideas of things to do to help slow it down. Reading, bathing, interacting etc. Now to read up on all this to understand what is heading my way and know how to better help her. Thank you for all your help
Grandma1954 May 2021
Thanks for the update. Do not hesitate to get caregivers in to help you, they will be needed. And better to start early bringing someone "new" into the house.
Nikiniki31 May 2021
So after taking her back in to Dr to make sure UTI was gone. She has decided to not shower again and decided to dig a little hole in her diabetic toe. When I told her I would take her to podiatrist for that kind of stuff because she could get an infection she lost it and screamed she just wanted to die! She called my sister at midnight and told her I was mean and wanted to go to her house in the neighboring state. When I talked to sister the next morning and she told me what was said we arranged for her to go and visit for a little over a week. When I told her the plan and asked if she needed help packing she was upset and said I was sending her away. I then reminded her she asked to go.
It doesn’t matter what I say or do she twists it around to where she is a victim.
Now that she is at sisters I have to go through and clean her room. There is something stinking and have to find the source so I’m anticipating a meltdown when she gets back because I’ll have to move her hoard.
Praying that the Dr will find answers when I take her the 19th. For now I’ll clean and try to write up another note for psychiatrist to address some of the concerns. I just want to clarify when I wrote the note to first Dr. I wasn’t trying to do it behind her back but more trying not to embarrass my mom. But the way she came in and addressed it it was obvious she hasn’t handled very many geriatric patients. The urgent care Dr was way better at addressing the hygiene than first Dr. and he was the one that was able to refer us to the psychiatrist. Praying my heart out. Thanks for all the advice and support.

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Countrymouse May 2021
Oh goodness, two weeks to get through, hm?

I don't know what the agencies are like where you live, but if they're anything like ours I would certainly ask them to visit your mother and do an assessment - and if they insist on doing it over the phone because of Covid, so much the better because you can act as moderator and interpreter during the telephone interview (only be careful not to argue with your mother, you're communicating *for* her with the assessor).

Your mother is young, 72, and everything is in the "pending" tray until this next appointment. So what you'd be asking for is short term support for, e.g., personal care, showering and dressing. The aides would be asked to encourage her to resume HER OWN NORMAL ROUTINE, n.b. - that is, going back to what her own habits were before she got ill.

Even if you only have the phone call, at least your mother will be asked by an impartial outsider whether she thinks support would be helpful and talking about it will remind your mother of what is normal *for her.* I can't stress enough that this isn't about changing what she does, it's about helping her do what she is used to doing.

SoVeryExhausted May 2021
Get rid of that Dr. I had almost identical problems with my mom. Made and appointment with a neurologist. Emailed him a long list of problems. My mom refused to go. I told her Medicare makes it mandatory once a year or they will cancel her insurance. (Thank you to who ever it was here that gave me that little white lie) we walked in. He nodded at me. He had my note on his clipboard. He sat in a chair face to face with her. Told her he needed to ask some questions to know her a little better. He went down my list one by one. When she answered (always wrong) he looked past her to me seated behind her. I could then nod yes or no. Of course the fact that she had refused to bath for a very long time was his 1st clue. She couldn't answer any of the actual demencia test questions correctly.
That was a little over a year ago. She's been in a nursing home. She'll be 89 in June. I saw her last week. She wasn't sure who I was but tickled to have company. She told me she had just graduated high school. And her husband was having an affair. He died in 2007. You need a Dr who will advocate for her patients. Not upset them. I'm amazed at what passes for Drs now a days.

notgoodenough May 2021
While I understand the need for a good doctor/patient relationship rooted in trust, I think mom's PCP was somewhat obtuse in regards to the whole note thing. There had to be some other way of getting to the bottom of the issues you told her about in the note without her putting you in this position.

I think a good doctor, especially one with elderly parents, should have some sort of skill in drawing out information about their health issues. But I think a lot of doctors either aren't able or aren't willing to take the TIME to really talk to their patients. I mean, if your mom was one of her patients who didn't have someone living with them taking care of them, coming to doctors appointments with them - for instance, maybe if mom was a patient who came alone to the doctor - and the doctor saw how disheveled mom was, would she have just let her walk out of the office without investigating further? Or would she have asked some rather pointed questions to get to the bottom of things, to get mom the services she obviously needs?

And much like Lea, I am wondering why this doctor didn't look to prescribe something for the anxiety/depression. I understand why a lot of doctors aren't willing to delve into anti-depressants, because technically they should be given as part of a treatment strategy that includes therapy, but I think that when you're dealing with cognitive decline, a doctor needs to look at the overall picture; all the therapy in the world isn't going to solve that, so treat the symptoms to give the patient a better quality of life.

Were I you. I might call the doctor, privately, and discuss this all with her, starting with asking her for a prescription NOW to help mom with the depression. If mom isn't willing to speak to her PCP - who I am assuming she has seen for some time and is comfortable with - what makes this doctor think mom will open up to an entirely new doctor with whom she doesn't have any sort of relationship? You might ask mom's PCP that question!

Good luck!

Destinydrh May 2021
Hello.

Aging is a gradual process of CHANGES which mean, people are dealing with the spirit,soul,and the body changes.

And if you live as long as your Mom you will experience these scary changes also; you must learn patience with understanding.

All involved ,especially family will experience this rollacostal ride of emotions.

Except the now what’going on. Get smart, what you need is information what to do!

Call around to Agencies for help. Ask. If you don’t mind using the internet,this will be your new friend. Search and read, and seek help. Believe me it’s out there. I tried it,it’s works. You have to do the work.

It can get better! Stay with this web site,it is a great support system.

Best of health to you and your family. Keep your head up......

Countrymouse May 2021
Where is the patient supposed to imagine the doctor is getting his information? "Ah ha, Mrs Smith, I see from your blood pressure reading that you are at risk of self-neglect, unable to wash, dress, eat regularly or exercise in the way that has been your habit..."

There is nothing wrong with contacting a doctor in advance of a meeting and suggesting key points for discussion. It's a very good idea to do that. But it isn't realistic to expect the doctor, whose relationship with the patient must be based on trust, to keep it a secret; and anyway why should anyone be afraid to have it known that they *are* concerned about their parent?

It isn't someone talking about you that tends to be upsetting, it's someone talking about you behind your back. Much better to do it to her face!
NeedHelpWithMom May 2021
I agree that even with good intentions, this situation can easily be misunderstood by the parent.

I never liked when I took my mom to a doctor and they would speak to me about her health as if she wasn’t even in the room. I always instructed the doctor to include my mother. Actually, I was glad when those doctors retired and I found a wonderful doctor for my mom that did not speak behind her back, right in front of her!
lealonnie1 May 2021
So, when I was certain my mother was suffering from dementia, I brought her to the ER after she'd had another episode of vertigo that nobody could get under control (she was living in Assisted Living at the time; she now lives in the Memory Care bldg of the same AL). While she was sitting on the exam table in the ER, I spoke to the doctor; I literally begged him to admit her; I told him she was definitely suffering from dementia & gave him some examples of her erratic behavior (ie: buying 40 burgers and & 20 diet Coke's) and told him she was CONSTANTLY suffering from vertigo; this was our 4th trip to the ER for it. You have the UTIs that your mother is chronically suffering with. Anyway, he agreed to admit her, thank God. They ran a battery of tests on her including administering the MoCa cognizance test and lo & behold, she scored a 19 out of a 30 meaning she DID have progressive dementia. Her scans were clean so they did not feel she had Alzheimer's, but who knows, really? Her sister died from AD at 95.

So, next time your mother gets a UTI, maybe try the ER route like I did. Make it totally clear to the bonehead doctor that whatever you tell him or her is between the two of you and NOT to be shared with mother! Sometimes these doctors truly blow my mind with what they do! You are trying to get a diagnosis for your mother and here she is, making your life even HARDER than it already is!

Like CountryMouse said, you may want to call in a caregiver to help mom with showers; oftentimes, stubborn elders do MUCH better with strangers than they do with their own daughters. Take my mother (please?), she treats the caregivers at her Memory Care like solid gold and me like a piece of dirt! She's very cooperative with them and argues every word I say, truthfully.

In reality, once your mother does get diagnosed with dementia/Alzheimers or whatever, you'll have to decide what your next step is going to be? The odd and difficult behaviors can and often do quickly deteriorate and they can start wandering and getting into all kinds of trouble inside the house. You'll have to think about the options once you do get a real diagnosis, but it's a good idea to get her used to having caregivers coming into the house NOW so you can get a break and so she can get a shower. You know there's something wrong here, with or without a diagnosis. And depression doesn't manifest itself in ordering tons of food and sodas, normally...........so why can't her regular PCP give her an anti-depressant to try and go from there???? My mother was given Wellbutrin in 2011 after I told her PCP she was showing HUGE signs of depression and didn't want to leave her apartment after an illness she'd had. He had NO problem writing the script and it made a big difference for her. The key, for you, may be to get a better PCP for your mom and one who will speak to you as her advocate, you know?

Wishing you the best of luck!

NeedHelpWithMom May 2021
It is sad that the doctor didn’t keep your note in his confidence. Obviously, your mom needs help. You need guidance in finding a path to take, in order to find solutions for your mom’s situation.

I like what countrymouse has to say, very truthful and practical advice.

I wish you all the best.

sjplegacy May 2021
It's too bad that the doctor even mentioned your letter. After reading it she could have asked your mom about your observations without revealing that you wrote it. Some PCPs are still a long way from acting appropriately when it comes to working with dementia patients. How did the dr screen her for depression and not dementia. The two can be difficult to differentiate but your description of her behavior says more about dementia than depression. I think his referral to a mental health expert was inappropriate. Dementia and its causes are not mental health issues. Years ago dementia was lumped into the mental illness category because it resembled psychosis and other mental illnesses. Today, however, it is considered a physical illness like cancer or heart disease. Brain cancer isn't a mental illness. Based on your letter, his referral should have been to an expert in cognition evaluation. You might want to try a different physician and state that you are asking for a dementia screening for your mom, or ask her current dr to refer her to a neurologist or gerontologist for further evaluation.

Sometimes we as caregivers want to offer more help to our LO than they are willing to accept. We tend to chip away at their independence. Consequently, they feel like they're being treated like a child. There can be many reasons a person rejects showering or bathing. This is a very personal activity and the person may feel self conscious or embarrassed in getting help, may have a fear of falling or that it's just too complicated to bathe. To get some suggestions on handling her reluctance search for “bathing and dementia” on YouTube.

MargaretMcKen May 2021
Write another note to the doctor, saying precisely why you wrote the first one (so the doctor could check things mother would deny) and saying how unhelpful the result has been. Ask why the doctor did not check the things in your note. Her actions are not just ‘depression’. I’d consider asking if the doctor can be more helpful, or failing that if you can be referred with case notes to a doctor with more specialisation in geriatric issues.

As CM says, try the mental health referral you already have (and I would suggest you write another note to that doctor too). If you get nowhere, find another doctor. Don’t let yourself get blocked by one doctor – they aren’t all as good as you would hope.

Countrymouse May 2021
So the doctor gave her a referral to mental health and..? What happened?

I'm not sure how you'd know she'd flip out about having someone come in to help her with showers if you haven't tried it, but don't let me mislead you - there is no way we would go to a home and attempt to shower somebody without first talking to that person. If she said no, that would be a no.

But that doesn't mean it wouldn't work. People who are pissed off with their family members nagging them about hygiene are often perfectly happy to let us help. Of course sometimes they're not, but even so they then get an opportunity to give their reasons or just to express their frustration and dislike of being interfered with - it never does any harm to try, is the point. So find a service you like the sound of, ask for an introductory meeting, and see how it goes.

Back to first things first: what about the mental health referral, then?
NeedHelpWithMom May 2021
Really wonderful and truthful advice, CM.

I found that my mom was always happy to have caregivers help her. I was blessed that she never fought with then, it was just the opposite, she did her very best to cooperate with them.

I appreciated the approach that mom’s caregivers had with her. They were respectful, allowed her to decide how to respond and were patient with her. At the same time though, they told her what the consequences would be if she did not make the best choice. They encouraged mom without being demanding or pushy.

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