Can't get Mom to talk to the Dr. about dementia symptoms.

DBJones

Hi all of you wonderful people. I've been trying to find help and resources ... basically just advice about how to get my mom to talk to a doctor about her memory loss. I mean its no longer just memory loss at this point. Her behavior is volatile and paranoid, at times delusional.  

She is withdrawn. Makes wild accusations. Gets lost while driving around our town. 

Does any of this sound familiar?

I'm thinking as I write this that there is probably no way for me to get her to go to a Dr. 

She is so frightened and doesn't want to face a possible diagnosis, ultimately she fears the loss of her freedom and independence. Which I totally understand. 

So maybe my question for you all is .... where can I go to get help for myself... how do I find a therapist who deals with caregivers/family members of Dementia/Alzheimers/whatever this is that has no name because I can't get a definitive diagnosis and I get all my information on the internet?

Thanks. I hope you are having a really good day. 

Iris L.

Welcome, DBJones.  While you are waiting for more caregivers to respond, please familiarize yourself with anosognosia.  This is a characteristic of dementia that causes the PWD (person with dementia) to truly believe that she is fine.  She sees no need for doctors, medications or changes in her usual routine.  If you try to confront her with reality, she will resist and become upset.   You will have to learn to use work-arounds to get things done.  In other words, you will have to take the reins and get things done for your mom, because she is no longer able to function sufficiently.  Your mom is not going to talk to a doctor about her memory loss, and probably not any of her medical issues.  You will have to take over.  The members will tell you how.  They are knowledgeable and experienced and willing to share.

Iris L.

PickledCondiment

DBJones - Gentle warning, I'm not your typical caregiver.  I've chosen to view my LO Lewy Body Dementia (LBD) clear-eyed and factually which may be read as harsh. 

For your sake and your mother's, you must develop and execute a plan now.   For me, having a plan provided structure and clarity regarding a disease that is akin to tacking jello to the tree. 

1) Make an appointment ASAP w/your mother's PCP to discuss symptoms and develop a plan.  Reality, your mother appears to be at the point where she does not understand, forcing her to discuss is pointless.  (My LO is two years in and has only fleeting glimpses of dementia, thinks she's just getting old.) You will need to drive the conversation, documentation of events thus far is crucial. 

1a) Your LO will benefit from an appointment with a Neurologist or an Geriatrician w/Dementia focus. Warning- PCP are not always well-versed, knowledgeable regarding dementia.  Warning - PCP may not be willing to refer, you will need to drive this process, do not be afraid of pushing the desire to get your LO the best care. Second opinions, other viewpoints are necessary to obtain the best diagnosis.

2) She should not be driving, doing so is a large liability issue for you should she have an accident. Take the keys now as you know she isn't capable.

3) Please reach out to your local Aging Disability Resources organization. They can provide you with information and guidance in lay terms. This is their area of expertise, use it.

4) Depending on your situation, legal review and planning with an Elder Lawyer in definitely in order. You need to know the status of the assets: bank, investments, real estate, will, et al. Start to gather the information now, you will need it. Should your mother need facility level care, very costly.

4) Align yourself with a therapist, sooner than later. You must take care of you so you can take care of your LO.  Planning and setting boundaries are not negotiable.

So many other issues, I'm stopping now.  You are strong enough to find the resources and ask the questions. Start now.

M1

Hi DB Jones.  One other very important early thing:  you will likely need to have power of attorney for your mother, from what you describe it is hard to tell whether she can still sign for that or not.  If not, you may have to pursue guardianship, which is more difficult and expensive.  So if you do not already have power of attorney and health care proxy, you need to make an appointment with a certified elder law attorney asap --look at nelf.org.  These folks can get the legal paperwork in place and help you figure out how to protect her assets, and plan for future long-term Medicaid if needed.

The other posters are correct, that you cannot expect cooperation or rational input from your mom--in all likelihood she will not understand that she has dementia or realize the implications of that.  Write down all your observations and questions for the doc; if you don't have health care proxy, they may not be able to talk to you, but you can talk to them.  You might be able to get her to the doc with a white lie such as "this appointment is required or you'll lose your insurance."  But you will have to drive the discussion.

And yes, you need to take the car keys away yesterday.  She could not only hurt herself or someone else but lose everything she has in the face of an accident.  

Good luck, none of this is easy.

Hoot619

1. What state are you from? It would help others to help you. Here in Michigan, getting Guardianship for my wife wasn't hard at all and didn't cost that much . Each state sometimes the legal process is different.    I found a lot of help here ,Caregivers that have gone thru what you are just starting with your loved one. This forum here and the other one on here I read daily and it helped me a lot.  Even though my Dear wife has passed I still usually check in daily to see how others are doing.

Wilted Daughter

Hello DBJones,

This is a tough spot, but hopefully you will learn ways to get the diagnosis for mom and self-help for you. 

After years of noticing the cognitive decline and trying to address it with my mom to no avail (she believed her symptoms were normal), I contacted the ALZ Helpline and was provided information on how to proceed. I contacted her PCP while not in state and shared concerns and informed that I had already contacted ALZ Assoc. A MMSE test was scheduled with a follow up checkup to ensure she would attend. During the visit the checkup was performed then the MMSE administered and results were documented in records and further testing can be requested/referrals made. There are many ways to get her tested, but the PCP is the first point of contact. I had Health Proxy, and listed as contact person making it easier to speak with the doctor. You can find out from the provider's office what is needed, if anything, to share a concern. I noted concern verbally and in writing to the PCP for proper documentation. 

As for you, there are national, state, and local caregiver groups for support. You may start the search with ALZ Helpline to request support groups info then contact state/local elder services agencies. 

Attached are quick created resources that may help *MMSE is just the first step in testing

Hope things get better for you as you learn more.  

JiminTexas

DB;

Thanks for your post.  I just joined the community and yours was the first post I read and I share your circumstances.  My wife has been slipping away for last couple of years.  After a life where she was in control of everything she is now leaning on me and it bothers her.

First it was just memory loss.  Couldn't remember what day it was or upcoming events but she did when reminded.  It has progressed to point where she is way off, can't even remember month it is, and insists I didn't tell her of upcoming events.  I got a small white board at Walmart and posted on frige with days of the week and events to help.

She has started sleeping in a lot, rarely getting up before 11, and then insists that she "just can't wake up today".  It is clear too me she is experiencing memory fog more and more.  She herself stopped driving when she got lost in town so I don't have that issue.  

I have not obtained a diagnosis as she would not agree to go and I'm not even sure how to bring it up.  We id a full nuropshchological test, the 2 hour one, in 2021.  The results showed indication of pre-dementia, but she refused to accept that and refused to do any followup.  Hoping someone here can answer, what is the value of a diagnosis and how to do it with the patient resistant to testing.

Anyway DB, I am also in your shoes and wish you luck.  Personally I have a strong spiritual belief, that my Heavenly Father is in control and I am where I am supposed to be and that helps, but I know it is still tough.  Know that there are others out here like you so hang in there.

JiminTexas

CaliforniaGirl-1

We were in a similar position for years with my LO. And between denial and defensiveness they never did talk to their doctor about it. We finally made a phone appointment using our medical proxy and told the Dr. that we did not want them to tell us anything they couldn't but we wanted to give them our concerns. That turned out to work quite well.

This is assuming she has a doctor. 

DBJones

Iris - Thank you for this information - 

I'm in the situation where if I do anything that even hints that I am insinuating that she can't take care of herself or do something on her own - she will fly into a rage. 

Taking the reins is a daunting thought.... I have been avoiding this on levels.... and yet... ugh it might be time to force the issue for her safety. 

DBJones

Wow, this is amazing- thank you all for your responses, information and support. 

I've got my notebook out and I'm taking notes on all of your advice and information. 

Oh man, its daunting.

She is already so paranoid and defensive about me insinuating in anyway that she can't take care of herself that,

a.) Getting her to make me or one of my sisters her health proxy seems.... impossible. 

b.) How do you get to be someone's health proxy, essentially... against their will and without an official proper diagnosis?

For background and context - 

We live in California, and I spoke to her last Dr. once just to give him information - not to get any information, I just wanted to tell him what is going on with her, etc. and he said that unless she brought it up to him, he couldn't do anything. Blink. 

She stopped going to him a few months ago because she doesn't trust him for a myriad of non-reasons. So, I researched and asked around - found some referrals for different GPs.... but, she says she doesn't need my help to find a Dr. she'll find her own.  Dr. ... which she doesn't because let's face it she doesn't really want a new Dr, and she doesn't have the executive functioning to follow thru with it. 

 So to cap everything off she is now between GPs. 

Wait... I'm venting... sorry I got carried away. 

Anyway... its daunting as you all know. 

Thank you all again for responding to my post and being so fracking helpful and supportive. 

Also, as awful as it sounds ... It's really comforting knowing that there are other people going through similar things. 

Ed1937

DB, you have some excellent advice already given. As M1 said, telling them that they have to see the doctor in order to keep Medicare, often works. Another thing you might try, if she agrees that she has memory problems, is to tell her that there are many conditions that can cause that, and when treated, the symptoms could vanish. This would not even be a white lie. It's fact. A neurologist who has dementia patients as a large part of the practice is what you want. If you do get her to see a doctor, you can write a note for him/her to read before seeing your mother. Make note of all of your concerns, and give as much information as possible. This note can be handed to the person at the sign in desk, and ask them to give it to the doctor to read before the visit.

Hopefully you will be able to get her in to see a CELA (certified elder law attorney) if she is still able to make decisions. They can be a big help.

Iris L.

CaliforniaGirl-1 wrote:

 And between denial and defensiveness  

Welcome new members.  Please familiarize yourselves with anosognosia.  This is a characteristic of dementia that causes the PWD (person with dementia) to truly believe she is fine.  She sees no need for doctors, medications or changes in her usual routine.  If you try to confront her with reality, she will resist and become upset, as you have observed.  There is no insight.  They are unaware.  This is distinct from denial.  You will have to learn to use work-arounds, which you will learn from the members.  The members are knowledgeable and willing to share.

Iris

harshedbuzz

DBJ-

Hi and welcome. This is a difficult situation. You've already gotten some good advice around managing this. 

There are a couple other strategies that could be applicable here if the situation presents itself.

Guardianship is a bigger hairy deal than if your mom would agree to naming her as POA but it is doable. I know two folks who have had to take this approach and both prevailed. In both instances, the fees were paid by the assets of the PWD.

My aunt's situation was pretty straightforward-- other family members were given the option to object and my aunt had a court-ordered evaluation. She was initially given a temporary guardianship and then permanent. She later obtained guardianship in a neighboring state when she moved my aunt to a MCF near her home. 

A friend and his brother had to obtain guardianship of their dad who had enough cognitive reserve to hire his own attorney and fight it. He, too, was required to submit to an evaluation and the guardianship was awarded. The interesting thing was that dad lived in a cottage on the older son's property and continued to have dinner with the family and attend his grandchildren's events as if nothing was happening. 

My own dad was finally diagnosed after being admitted from the ER during a psychotic episode. Unfortunately, the first ER totally missed what was going on-- they assumed a stroke, cleared him and sent him on his way with a referral to a neurologist scheduling 6 months out. A week later, I had my mom drive him 3 hours to a university hospital ER affiliated with a memory center. This might not be applicable to your mom, but if she is hospitalized for something else you could ask for a neurology consult.

Another option would be having her transported to an ER if she gets really aggressive or violent for a geri-psych admission. 

HB

DBJones

Thank you again! 

Iris L - Thank you for the information on anosognosia. It seems spot on. the only thing is, there are times when she will break down crying because she can't remember anything, birthdays, what season it is, etc ...  and say that she thinks she's losing her mind... so it's like she is bitterly aware of it on certain levels at certain times and other times its like she just doesn't want to admit it to me (or herself) and comes up with excuses for things and then we have the other times where she just doesn't think that there is a problem at all. Sigh.

Thanks also to - Pickled condiment, M1, Hoot619, Wilted Daughter, JiminTexas, California girl 1, Ed1937, and HarshedBuzz for all your hard won advice.

I want everything to be black or white, and it's not always that kind of situation at this point.... but then I read everybody's words of advice and their experiences and I wonder if in hindsight, I will look back and see that, yes everything actually was in black and white I was just too hesitant to accept responsibility and take the necessary actions when all the signs were there. hmm. 

I'm bringing in other family members and working on the next steps with them, and trying to keep getting educated about this strange new land. 

and breathing.... I'm breathing a lot. Deep Breathing. 

OliviaDep

Hi all. I just joined, and this is my very first post so thanks for your patience while I learn to navigate the site.  I am in the same boat where  my 79 year old mother has been behaving differently in the last few years. There has been some memory loss, confusion and difficulty managing medication, but I chalked it up to getting older. She has always led a solitary life, and in recent years started spending a lot of time on social media. In the last year or two, that social media use has become an addiction of sorts and now she associates it with having a job and seems to be losing touch with reality. The weird thing is, she seems mostly normal otherwise. I have tried confronting her several times, but she just gets defensive and shuts down.

Like some suggested here, I wrote to her PCP and the patient portal to give him a heads up of what I was seeing so he could ask leading questions and see for himself. Sure enough, that worked, and he sent her for an ultrasound and CAT scan, which were negative. She was adamantly opposed to going for an MRI.  Simultaneously, she was seeing a cardiologist for afib and the plan was to see what happened after a cardiac procedure. I have since reached out to the PCP, and his guidance was to have her see a neurologist, which is most likely never going to happen voluntarily. 

So, like many herr, I have been desperately trying to find an answer via the Internet and came upon this forum.  This is normally not my thing, but I have to admit, it’s comforting, knowing there are other people in the same situation.  I am feeling sad and overwhelmed, as I have never been in this situation and selfishly, never wanted to be. I ger so angry and embarrassed when I see her posts online that make no sense and I want to protect her from making a fool out of herself without treating her like a child and taking her independence away and she seems to be very happy in this alternate universe she has created.

 Sorry, now I’m venting. thank you all for the information and advice and hope you have a great day.

Emily 123

For me, one of the difficult things to let go of was the desire to have my mom 'on board' and understand and agree with the steps that we had to take.   Because the person with dementia can usually carry on a conversation with you, you will feel like they can process, understand, and retain information like they always have.  But they can't.  If it's your parent you will initially seek to have their agreement and permission for whatever steps you're taking.  And you need to let go of that and tailor a way that works for you to gently keep them out of the loop and do the things that need to be accomplished. 

There's that old saying, 'pick your battles'.  With dementia, you need to avoid battles, even if that means agreeing that the moon is made of green cheese. Just smile and agree.  

I know that many of us here have deployed 'fiblets' as we try to accomplish what needs done-'the car is in the shop', etc.  You do what you need to do.

 I heartily recommend searching back through the archives (see the blue 'archive' link up on the right of the page, or going back through the forums.  Lots of great information. 

JiminTexas

So my question is why do we need a diagnosis?  I mean we went through the whole neuropsychologial testing and MRI back in 2020.  The nureopsych went through the results with both of us and while there was a lot of good, she finished with the statement that my DW was pre-dementia.  My wife was very gracious but after we signed off from the video chat she was angry with the doctor.  I think now that she was scared but th result was she didn't want to go to any more testing or senior doctors.  

She is still fully able to take care of herself, though not drive.  I mean she dresses herself and takes care of all her personal stuff she just has failing memory and some cognitive issues.  So what is the point of pushing for a diagnosis at this point? 

Note, I set us up with a living trust and have a guardianship doc she signed.  I have her POA and we have Medical POAs.  So wondering what is the point of a diagnosis of dementia?

Thaanks in advance.

JeriLynn66

https://alzconnected.org/discussion/comment/162607#Comment_162607

For me, the more information I have to assess stages and progression helps me in adjusting plans and how to manage.