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I hate that I am so nervous about this, I'm 56 years old for crying out loud and I'm having an anxiety attack over the "dementia" word!


First of all, my mom's appointment was originally scheduled for 3/26. I JUST found out yesterday that when she called the office herself about two weeks ago (trying to get a closer appointment because she felt "sick" but then told me they didn't have any other openings) she in fact did get it switched, so now it's tomorrow at 1:30.


The doctor's nurse is going to call me today so I can give her a heads up on my concerns. She also said I should write them down.


Here's the thing-- I have to do all this on the sly. My mom has already told me she wants to "go in by herself" and I can "ask the doctor any questions after". Basically, she doesn't want me in there for the actual evaluation. This is NOT how she normally is, and she has never asked me to not be present for any doctor, until this appointment.


The ONLY reason my mom would not want me there that makes any sense to me is that she plans to lie when answering questions. She tells medical people she is "fine", and will fake her way through. I myself did not see the full dementia until she moved here six months ago which then terrified me and got me to this site.


Has anyone else dealt with a parent in denial, and/or actively trying to mask the problems? What to do? I'm tried of ignoring the 800 pound elephant in the living room. It needs to be addressed. I don't even have a POA. I need to start having these conversations with her, but she will never admit to having dementia until a doctor tells her.... yes, you do.

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A good friend told me her mom would sit behind her husband, who had dementia, in the room while the doctor asked questions.  The mom would shake/nod her head to the questions the doctor was asking her husband.  The husband had no idea she was doing that and the doctor was able to get some honest answers.  Of course this won't work with every question but it might help.  She also had pre-written notes to give the doctor and she either handed them to the nurse on the sly or emailed them in before the appointment so the doctor could review them.  Best of luck.
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Barsenault60 Mar 22, 2019
I did the same thing!! I also gave the nurse a list of behaviors when I checked Dad in. Dr told me later how helpful it was.
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Exhausted, just talk to the nurse when she calls. Ask her to give the doctor a heads-up. Try to cite specifics that lead you to think your mother has cognitive issues. Be concise. Be factual. Remember that this isn't the first rodeo for the doctors --- particularly the neurologists. The medical staff can't give you information if they don't have your mother's permission, but you can give them all the information you want to. You aren't doing anything wrong or sneaky. In fact, you are doing your mother a kindness by helping her doctors understand her needs, and you are doing the medical staff a favor by alerting them to objective facts. I had to do it with my mother's doctors; many people on the forum mention similar circumstances.
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NeedHelpWithMom Mar 19, 2019
Good advice!
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Make an appointment with an elder attorney ASAP. Attorneys are able to determine whether or not the person in front of them understands the legal ramifications of the legal papers they are signing. Get all of her important paperwork done such as living will, will, and durable POA both medical and financial.

In fact, I'd bring up the legal paperwork with her neurologist tomorrow. You may have to be blunt and say that you moved her in next door to you but that you cannot be expected to take on the responsibility of caregiving for her without the authority especially not if dementia is on the horizon. Insist on not being kept in the dark.
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NeedHelpWithMom Mar 19, 2019
Great advice!
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The doctor can take charge, and ask you to come in the room, saying, " come on,
we need you in here!"

If the doctor is getting nowhere with a cognitively challenged patient, they will often come and get you.

This is something you can ask the nurse.
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YES! for 2 years. My mom is still in denial. Sometimes I think she forgets she has a problem. Just recently, she has started saying things like "you know how my memory is..." She won't see the neurologist any more, because he took away her drivers license. She blames me for taking her, and refuses to go back. Her doctor explained all about what was going on (vascular dementia) and then she just forgot it. So, try not to stress about it, learn to roll with the punches (this takes time and I'm not that good at it either)and remember you have to find a balance in living with yourself, and living with your parent who is living with this crappy disease. I wish you the best.
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Dear Exhausted Piper,
I moved my 85 yr. old mother in with me in March of 2018 after my dad passed away in October of 2017. I had mom evaluated by the insurance company that I set up for her shortly after moving in with me and learned she had already been suffering short-term memory loss, which truly upset her to the point of tears. When the evaluator told her, she began to start crying and I immediately asked her, what's your mother's name? She replied correctly and, I told her, You remember what is important and nobody cares about a hamburger, peach and a pencil. That comment lightened the situation and I gave her a hug.
Later last year on October 20th, I took my mom to the movies and noticed she was quietly but repeatedly asking me the name of the movie. I simply responded each time and figured she may have been tired and that is what caused the excessive questioning. However, when we exited the theater, she asked me where the woman whom brought her there was and if dad was back at the house sleeping. She was also referring to people and family members who were clearly not there and deceased. When I explained that I was the one whom brought her, she replied, "No, you met us here." I asked her if she knew who I was, and she replied, "Of course I do, you're XXX." Mom thought I was her sister, whom died more than 15 years prior and I realized later that the dad she was referring to was her own.
I took her to dinner thinking that perhaps she was tired but, strange and inaccurate comments and questions continued. When we got home, I called her doctor and could not get an appointment early enough. I kept correcting mom in the beginning but there was no rationalizing with her - she was in denial and utterly confused. She did not remember my dad passing and refused to believe it. Everything coming out of her mouth was a confused fantasy and inaccuracies.
I ended up telling her the following morning that I'd heard from dad but he did not tell me where he was and simply gave me an address we had to go to. Of course, it was a made up plan for me to get mom to the emergency room of a neighborhood hospital. Her doctor could not see her fast enough and I knew something was seriously wrong.
A nurse evaluated her upon arriving and they admitted her immediately. I stayed with mom in the hospital because I did not want her to be frightened or further confused. A CT scan, head x-ray and other tests revealed that mom had suffered minor strokes, which affected her brain. The strokes basically launched her into moderate stage dementia within the span of a movie.
When they released her, they basically sent us home with no preparation for me on how to deal with someone whom had dementia. I went out of my mind for a few days until I arranged for an aide to come in and help me. No one in the hospital told mom that she had dementia - they told me.
After the hospital, I took her to a different neurologist because I found the ones in the hospital to be inadequate and dismissive. I went to that appointment with her and the aide. When mom asked me why she was there, I explained that it was just a check up to make sure she was okay and that I was being checked out too. I took steps to speak to the doctor, nurses and any assistant(s) so that they would not say the word "dementia" in front of her because mom was not aware or accepting of it. Thankfully, with a lot of work on my part, they complied. I did not allow them to speak to her without me in the room.
Once the dementia meds kicked in, things got a little better but, of course, dementia is not curable. I downloaded a book from Amazon called "The 36-Hour Day" as well as others to help me become more enlightened. The underlying advice in most seemed to be, keep them calm, happy and safe. Don't point mistakes or inaccuracies to them if it makes them feel bad or unsafe. Pick your moments. Some moments may be more lucid than others. .
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ExhaustedPiper Mar 22, 2019
Thank you for sharing your story, and I'm sorry you and your mom are dealing with the dementia. You seem like a very caring daughter and did all the right things, you mom is very lucky to have you.

My mom had her appointment- I updated on that here: https://www.agingcare.com/discussions/neurologist-appointment-and-more-testing-447319.htm?orderby=recent

It sounds like your mom's dementia is also vascular dementia. I'm learning that the progress is different than Alzheimer's in that decline happens in steps, that can sometimes be very rapid because of mini-strokes. It sounds like your mom had a significant step down at the movies. Thankfully she was with you when that happened and you were able to keep her safe.

Do you mind telling me what meds your mom got where you saw some improvement? My mom is already on meds to control her BP and cholesterol, and also aspirin. The neurologist didn't suggest any additional meds at this point, but did write an order for physical therapy and more neuro-psych tests.

How is your mom doing now? Is she able to take care of her own hygiene and feed herself? I'm glad that my mom is still able to function independently in those areas, but the mental decline remains a huge worry for me. I will check out the book you mentioned, because like you nothing prepared me for dealing with dementia. I've learned a lot in the last six months from reading online and this site, talking to my own doctor and now this new neurologist who thankfully was excellent with my mom.

I like the advice of keeping them calm, happy and safe. I will always keep my mom safe. That's why she is here. Now the calm and happy.... I try my best but those two are challenges. My mom has always been a negative person and also narcissistic so keeping her happy is almost impossible. I get moments, and good days here and there, which I've come to cherish because they are rare... but in general it's a challenge. We're finally getting some sun and warmth in my area so I'm taking her to sit on the beach for awhile today. This will be her first trip to the beach even though we live a 3 minute walk from the coast. I hope it will go okay.

Best wishes to you and your mom.
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She can hear okay. I am still going to try and walk in with her, but if she tries to stop me I will not make an issue of it.

I'm waiting by my phone now so I don't miss the call from the nurse, and I will have things written down for the doctor. I think that's all I can do right now. Hopefully the doctor can offer some guidance. My mom can't fake as good as she thinks anymore anyway. I ignored lots of red flags in recent years but that was more my own denial as a defense mechanism because this is my mother, but this doctor won't have my emotional handicaps so should recognize things.

Thanks for your response. I know I ramble a lot on this site because I am still struggling to accept all this and I'm still so afraid of the future. One of the things I know I need is to have a good neurologist on board and this appointment is the first step. I wish I didn't feel so anxious about it.
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NeedHelpWithMom Mar 19, 2019
Piper,

Honey, ramble on. We don’t mind! This is very upsetting. I’d be upset too. It’s important to get proper results.
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My mom has dementia but not Alzheimers. Regardless, she totally BSs the medical personnel. For 25 minutes or so during the meet-and-greet, she physically rallies--all perky and well-spoken and doing her 'cute' thing while not directly answering their questions--and the never lift their eyes, that are glued to the computer screen checking boxes (mom's responses). Also for 25 minutes, she can turn on the sharpness and charm. I go with her to all her doc appointments (luckily, she lost her DL), and both the primary, the freakin' neurologist and the hospital folks (she falls very frequently) seem to be totally unaware she may be BSing--and they all end up telling her how great she's doing, and they all gush and say "I hope I look as good as you do when I'm 90!" To boot, her organ are all in remarkably good condition, which further influence the doctors' appraisal of her.

And we go home and since I am living at her house now (watching her like a hawk), we might as well have not gone. Then we go back to the 24 hour cycle resumes.

I'm beyond furious that these guys aren't paying attention or picking up on the numerous signs that mom's doing a song and dance for them.

I sit next to or behind, my mom shaking my head, but they either ignore me or say to me "let her answer".

I don't know if this is a 'doctor/patient privacy' issue, &/or that I'm not legally her guardian?

I love this forum--it's made a HUGE difference in my life!!!
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Lymie61 Mar 22, 2019
Are you POA or MPOA? Has she given verbal aproval at least to each of them to share info with and talk to you? They should be looking for your silent clues anyway, they know who you are but any of the "leagaly" acceptable permissions above give you the right and them the ability (responsability even) to speak openly with you.
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There is nothing wrong with you giving the doctor a head's up ahead of time via his nurse and in writing. The office will be used to seniors who 'fake it' and need input from family so they know when the senior is blowing smoke.

I worked in medical offices for years and it was amazing the 'stories' a patient would tell us, thinking they could pull the wool over our eyes.

I see it with my Dad, who is doing incredibly well at age 90. All his shoes are slip on, because he cannot bend down to do up laces anymore. If bits of paper fall to the floor, he cannot pick them up. He has a gripper tool for larger items, but it does not work for flat paper. Dad's long term memory is incredible, but he sometimes gets words like Yesterday and Tomorrow mixed up. He knows what he means, just cannot find the correct word.
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Just to reassure you that the people giving the test will be understanding and will not make your poor mother think she's woken up in one of those school exam nightmares: this section shows how it's done -

**********
1. Place a pencil and a piece of paper in front of the subject. As a practice trial, ask the subject to “Pick up the pencil and then the paper.” If incorrect, score 0 and do not continue further. 

2. If the subject is correct on the practice trial, continue with the following three commands below. 
 Ask the subject to “Place the paper on top of the pencil” 
 Ask the subject to “Pick up the pencil but not the paper” 
 Ask the subject to “Pass me the pencil after touching the paper” 

Note: Place the pencil and paper in front of the subject before each command. 

**********

So: if your mother is struggling, they don't plough on regardless. You can also see that the tasks are deceptively simple. You could follow those commands without even consciously thinking about it. A person with dementia (past a certain point) can't.
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