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

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.

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.

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

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.

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

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. 

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

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.