New here, searching for advice

LittleRoseBug15

Hello, everyone. This is my first time writing here and I'm looking for a little advice for someone with a LO with MCI. Apologies in advance for a long-ish post.

First, some background info: I'm a 35 year-old only child living in a different state from their 71 year-old mother, who is single and lives alone. Mom has been experiencing memory lapses for the last 3-5 years (can't remember information told to her within minutes, misplacing objects/her car, oblivious to damage in her home, etc.).She is very capable in some aspects of life and most people who meet her wouldn't think there is anything wrong with her, but close friends and family have all noticed these things and agree that this is not normal aging. There is history of both dementia and ALZ in our family, with my mom's grandmother, aunt, and mother having dementia and her father having ALZ. This year, my job has allowed me time every month to travel home to see her/take care of her health, but I'm also planning on moving to be with her by next summer.

I have taken steps this year to try and discern what, if anything, is happening with her memory. Mom is adamant that nothing is amiss, writing off any instance of memory lapse as just "getting old" or, of course, having no memory of the incident. (I think there may be some anosognosia involved, as well.) We found a neurologist, had a neuropsychological exam, B12, thyroid tests, and an MRI. Lab and imaging tests came back normal but the neuropsychological eval showed significant memory issues, not yet classifying dementia but enough to warrant a diagnosis of MCI. We've been told that she could test for ALZ specifically, go on medication to try to improve her memory, and come in for routine check-ups every 3 months.

The problem I'm encountering is that Mom just doesn't believe the diagnosis. She feels the test could have been manipulated and overall doesn't trust the doctor that we are going to. However, because she doesn't believe any of this is happening and thinks that it's "a waste of her time", I don't know if she would believe/like another doctor or be amenable to retaking tests (she may not remember where her car is, but she remembers that there were 344 questions on the neuropsychological questionnaire). I'm totally open to finding another doctor (I haven't been the most impressed with their office either), but I don't know how to set this whole situation up for success. 

(Between drafting and posting this message, I have found out from close friends of ours who are helping her with finances that she's also now living far outside of her means. She's retired with a fixed income, but seems to be spending money frivolously on bingo and dining out. We think this is because these are means to keep her social/ways to see other people as she lives by herself. But we're now concerned that coupled with whatever cognitive issues are happening she may lack the capacity to budget or change behavior. I am concerned about having to take away her debit cards but it may be the only thing we can do to curb her spending. With how bad the financial situation is, I'm also thinking that my plan of moving down to her by next summer may have to be expedited. As she's in this strange in-between space, I worry that doing something that extreme (or enacting a POA) will turn her against me and those friends who are trying to help her.)

I want my mother to be on board with this process, but I understand that the nature of this situation may make that impossible. I've stopped trying to convince her of the issues because, as I've read and experienced, that only upsets us both. Is there anything else I should try? A specific type of doctor? A communication style? With everything I've learned in the past week, I fear that if there was a time to get in front of this and adjust her way of living or her mindset toward what may be coming down the road, I've missed it. At the beginning of this year I thought we were maybe getting a head start and now I realized I've been lapped. I just feel like I'm failing her. 

Thank you in advance for your time and advice,

- RoseBug

Ed1937

One way to try to get her in to see another neurologist (recommended), would be to tell her that there are many things that could cause the forgetfulness and other problems she may be having. Explain that you don't have faith in her current doctor, and another might help her better. That would not be a lie. If you don't want to try that, tell her that Medicare requires a doctor visit every 6 months or once a year to keep Medicare insurance.

SusanB-dil

Hi LittleRoseBug - Welcome to 'here', but sorry for the reason.

So sorry you are dealing with all of that.  It does sound like she has anosognosia and doesn't realize anything is wrong.  you do need to step in immediately.  She is not managing her finances, and probably other things as well, and probably should not be left alone at this point.  Unfortunately, she will probably not 'be on board' with the process.  Others are already letting you know that they are seeing the decline, so she may be farther along than realized.  This is already going on 3-5 years, and has misplaced her car?  That's pretty serious.

Do you have DPOA and HIPAA in place?  Please do step in ASAP!

M1

Welcome to the forum.  You are entirely correct, you need to step in now.  I frequently tell the story here that when I first realized by partner was developing dementia, I discussed it with our internist and thought that if he told her the diagnosis, there would be a "lightbulb" moment and she would realize she needed help and would defer to me.  He laughed at me, literally.  So I entirely get where you're coming from, but you need to move past this quickly.  You are going to have to invoke your POA (hope you already have it) to protect her finances and everything else.  It's probably not safe for her to be living alone any more, and she certainly shouldn't be driving.  

Have you thought about moving her to you instead of the other way around?  Just throwing it out there.  But you are probably going to have to prepare yourself for a lot of resentment.  Since she doesn't recognize the deficit, she is likely going to be resistant to anything you suggest, and most of us here have learned quickly to simply do things and not discuss it with our LO, or to use white lies of any sort as long as it keeps them calm and compliant.  

If you don't already have POA, you should talk to a certified elder law attorney (look for location lists at nelf.org) near her and make an appointment ASAP.  These folks can not only help you get the POA in place but can help you plan ahead financially--if she's on a fixed income, you may need to think about how to qualify her for Medicaid long-term should institutional care be needed.

One more thing about the MCI diagnosis--we usually see that this is what the neurologists say initially, regardless.  It's a gentler blow to say that than to say out and out dementia.  You may want to look at Tam Cumming's stages of dementia to get a sense of where she really is.

Good luck.

LittleRoseBug15

Thank you all so very much for your responses. It's really exactly what I needed to hear, hard as it may be.

I do have HIPAA in place am working on POA and broaching that subject with her. She has continued to be understanding about end of life preparation. I have a consultation with a elder care attorney next week to get a better understanding of the shape of things. But I will need to find one in her state so nelf.org is a great help, thank you.

As far as moving her to me, I live in NYC and cost of living/space is not ideal there so it would make more sense for me to move back in with her. Especially because the house needs a lot of work which she is not able to do. 

Also thank you on the suggestions of getting another doctor/clarity on the broad diagnosis. That is actually very helpful at least to wrap my brain around the reality of the situation. 

I'm actually home with her now, so I will definitely be using this time to make arrangements with her and her close friends of how to step in and manage things for the foreseeable future. I will then try and make my arrangements for getting back home.

jfkoc

Diagnosis....please go online and google to make certain everything was done accordin to protocol. If it was then a second opinion is likely to be a help only to you.

Now regarding communicating with your mother. Straight forward, factual etc is no longer possible and if that works for a moment it will not loast and naught will be remembered. That is the nature of the beast so save yourself.

From now on you decide what needs to be done and you act. You have a hall pass to tell any story you need to in order to get these things done.

 For example, some entity, Medicare/insurance company requires a DPOA in place as well as an annual check up.You tell her that you think you should have one in place also...ask her if she will be your agent...you can change that later. 

Please do not discuss the diagnosis with your mother. Trying to get her to remember that she has a terminal disease is both useless and fall into the mean column. 

If there are matters that can be done on line or by phone you only need to know her security questions and/or passwords. 

You can have mail sent to you. 

Pull together financial records,budgets, bank accounts, portfolios...anything having to do with money. Have this ready for your initial legal appt.

Your mother is not able to budget. She is no longer to change her behavior in any way you think is reasonable so stop trying.

Things willbegin to fall into place but it is not easy. The more education you have the easier it will be. The same is true for staying within the four corners of her page.

Hope some of this helps. 

[Deleted User]

The user and all related content has been deleted.

Iris L.

Read about anosognosia and learn the work-arounds.  Do not confront her directly, it won't work.  Keep posting.

Iris L

LittleRoseBug15

Again, thank you all so much for writing and sharing your thoughts and experiences.

Once I learned about anosognosia and realized she truly didn't have the ability to "see" her symptoms, I started framing the doctor's visits as proactive, rather than a reaction to things I'd seen. But as the doctor tells her the information in the appointment, she does hear the diagnosis and proceeds to get wary/distrusting. I don't mean to be so precious about this, but is it alright to speak to the doctor (or any new ones) beforehand to discuss means of communication/her perspective? I know the concern about clarity with her is something I have to get over (and quickly), but just to know that that is an option.

I also really don't know what to do about her money. It was suggested that her cards be taken away and she's given an allowance per week. But as I'm not there yet, I don't really know how that could work. Our friends who have helped to navigate this are already doing far more than they have needed to (I really don't know how I will ever thank them) and this is not something they should think they have to do/be responsible for. However it happens, I think even attempting to take her money away will be a huge issue. But these may be questions that an elder attorney can help with.

Again, thank you for your patience with me. I appreciate the grace I've been given here.

MonicaG

My mom (79) was diagnosed with ALZ 2 years ago. It’s been really tough and heartbreaking, maddening, sad, etc. There are steps to take. You can tell her she needs to go to the doctor for a wellness visit and that you’ll go with her. You can tell the doctor ahead of time your suspicion of dementia and then they will take it from there. The doctor will do a mini mental exam and take it from there. Doctor will order a neuropsych test, driving evaluation. The frustrating part about this process of getting a diagnosis is that it takes time and many appointments and fibs, unfortunately. I felt compelled to reply because your mom sounds like my mom. My mom was giving out her credit card number to an addict in the family (four times!) I’ve had to clean up so many messes, I’ve lost count. I hope you have somebody in your family that you can lean on for support, as well as the members of this group. But it helps to have support from someone in the family who knows you and your mom very well. Good luck to you.

sandwichone123

LittleRoseBug, when it comes to finances, less discussion is better discussion. If you have POA everything is easier, and if you are joint on her accounts, everything is better.

Change passwords and PINs ASAP and tell her you're "looking into it" and will get it fixed ASAP--which takes forever, as we all know. "Help" her opt out of prescreened credit offers and lock her credit with all three bureaus. If possible, have her put you as joint on accounts and create a durable POA *before* you do things that are likely to annoy her.

[Deleted User]

The user and all related content has been deleted.

BassetHoundAnn

>>>I don't mean to be so precious about this, but is it alright to speak to the doctor (or any new ones) beforehand to discuss means of communication/her perspective? 

That's an excellent question. When I started on this journey with my mom each time I made an appointment I asked the clinic appointment-maker and, if I spoke with a nurse, whether I would have a chance to speak to the doctor in private about my mom prior to her appointment. I was invariably told oh yes I would. But when I arrived at the appointment with my mom by the hand I was invariably told sorry, we can't do that. But I was prepared. For each appointment I typed up a detailed letter of my concerns about my mom. I mailed a copy to the clinic prior to the appointment. And I carried at least two copies with me--one to slip to the nurse, one to slip to the doctor in such a fashion that my mom wouldn't see it. Often doctors don't have time to read things the nurses give them prior to appointments. But if the patient's daughter is standing behind her, pointing to a letter and waving frantically, they will take it and read it in a discrete fashion during the exam.  

When my mom asked about these mystery things I was handing the nurse and doctor I made excuses, fibbed that it was about insurance, things like that. She would forget about it within moments. 

I found that the magic wand was to obtain a certificate of mental incapacity signed by two doctors. That, along with the activated medical power of attorney document, will allow doctors and nurses, wherever we go, whatever clinic we visit, to speak with me in private rather than my mom. I keep copies of these documents in the car and on my phone, and I have mailed copies to all her medical providers so they are a part of all her medical records. I've also mailed copies of the durable power of attorney document to her insurance company and her medical providers. That allows me to handle the bills and insurance claims. An eldercare attorney will help you obtain a medical power of attorney and a durable power of attorney. Your mother's primary care physician will help you obtain the certificate of mental incapacity. 

I found that getting all the ducks in order to handle my mom's medical care was one of the most difficult, time-consuming aspects of caring for my mom. But once everyone was on the same page with the certificate of medical incapacity and other documents things got much easier and we could focus on getting her appropriate care. Good luck! It's a rough journey. 

Cosmic

Only a suggestion but concerning the POA. When my LO of 56 yrs started showing signs and after she was diagnosed I spoke with our attorney and set up an appointment to have both our wills reviewed and some minor changes for estate planning. Explained to him the situation and per chance his mother also has alz and was very aware of the situation. We did revise the wills and estate and he also explained to her the reason for POAs in case anything would happen to me she would be in charge or visa versa. She accepted this reasoning and all the papers were signed and witnessed and filed along with quit claims to our home and automatic asset transfers to a trust to be managed by our children.so in the future if for any reason a care facility would be necessary things would be in place to keep assets for heirs and not the state. 

Just a thought you might want to consider to get the POA without much disruption.

SSkye

Your story sounds just like mine. I am moving to Florida to take care of my mom and realized on a recent trip that she is further along than I had realized. It's a shock. Routine seems to be essential. So we will not be making any weekend getaways or traveling out of state again. Sending good thoughts your way.