Having "the talk" with your parent

TiffanyL

Hi, I'm new here and was hoping to get some guidance on how to officially tell my mom that she is having memory/cognitive issues. She hasn't received an official diagnosis from a medical professional, but her primary care doctor and that doctor's nurse both know that she is having issues. She also just has some cognitive tests in a neurologist's office (while I was present) and basically didn't successfully pass any of them. The neurologist ordered some further tests which are being conducted in the coming weeks. I don't know if she will give a diagnosis after those or not. But I feel like everyone is avoiding the conversation and it's left up to me. I'm scared that once I tell my mom what I've been seeing, she will either become upset or then act differently around me. We have a great relationship and always have fun together and I don't want that to change because I've said I'm aware of this issue.

Does anyone have any tips or suggestions for how to approach this very difficult subject with someone when it appears they don't realize what's happening to them? There's part of me that really wants to get it all out in the open so we can just live with this "new normal", but I'm afraid of her reaction and how things will be forever changed once it comes out of my mouth.

Quilting brings calm

There’s really no point in using the word dementia. She’s going to do one of two things - deny it and get angry, or totally not get what you are telling her. Most of us go with ‘ memory issues’, and say it happens as you age. Then we work around it by doing all that we can do with the authority we have.

While she still seems competent to outsiders, get her into a lawyer or a notary public to sign a legal and financial POA( one that grants you a lot of authority and will be valid even after she is incompetent). Also get her to sign a medical power of attorney. Make sure she signs HIPPA forms at all her doctors allowing them to talk to you. If not you,whomever is going to run point

Tiffany - be sure to wander through all the caregiver forums, not just the caregiver for parent one. There is good advice and support on all of them. Feel free to post on the general one rather than this one if you choose because that gets more attention than this one

Emily 123

Hi,

I'm glad you found this board.

Your mom doesn't recognize her losses-that's part of the disease (anosognosia), and pretty usual. There's very little that can help with this disease, and so the providers will probably be happy with guidance from you as to how in-depth they go in sharing a diagnosis with your mom. Understand that your mom's ability to process information is not what is was, and so it might be kinder to couch things in gentler terms. It is a scary diagnosis. My mom's neuropsych told her that it looked like she did have some areas on her testing where her memory was not great. Mom's ok with it couched in those terms, so that's how we roll. She had forgotten the results by the time we got to the parking lot. And you know what? Why would we discuss it again if it's likely to upset her? There's no point.

Life will go more smoothly if you just go along to get along, and agree with whatever she says, but you do what you need to do in the background to keep her safe and healthy. Resist the impulse to point out your mom's new behaviors to her-she doesn't remember them, and she's probably having a lot of challenges navigating her days. Understand that this isn't just a memory issue, and that despite looking and talking like your mom always has, her ability to process and understand information, do multi-step tasks, and make good decisions, has been severely affected.

First, scroll down to the bottom of the page at this link and read this for some insight: https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

If your mom has Alzheimers it will follow a staged progression-here are those stages:

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

I've tried to insert some youtube video links from Teepa Snow, but the embedding might not be working. I recommend looking at her videos as well as Vicki's, from 'Dementia with Grace'.

https://www.youtube.com/watch?v=u5QMeQpkPhA&t=78s

https://www.youtube.com/watch?v=awBm4S9NwJ0

https://www.youtube.com/watch?v=6cZTgG6kDjs

ohmom

Hi, I think your approach depends on how serious the issues you’re seeing are.

Start by asking her questions. Mom, do you feel like you’re forgetting things? Do you hav a hard time finding words sometimes? Etc., for whatever it is you’re seeing. You might discover she is very aware of certain things happening to her and if she is high functioning naturally she may be able to compensate for the cognitive stuff.

She may also need to hear it from her doctors and it’s strange they tested her and did not discuss the results. It’s possible they were deferring to you to do that. You should also talk to them about what’s going on/next steps, etc. If she doesn’t want to talk to you about it then you’ll have to involve the doctor.

If the topic gets shut down, then you’ll just have to do everything you can to care for and watch over your mom as she advances in age. Make sure POA and health directives are in order for whenever you might have to step in to help in the future.

towhee

I'll add a third possible reaction to those quilting gave you. She'll cry. And comforting her will not be easy. With most other terminal illnesses, we inform the person, we make plans with the person, we want that person's agreement to decisions, we want them to make the decisions, we do not want to make important decisions for someone else. Sometimes that works with dementia, but often not, because by the time a diagnosis is made there is already significant damage to the brain. We have to think about whether we are telling them for their sake or ours.

I told my LO they had some problems early on. I wrote a letter to her PCP. I pushed them to talk to their neurologist (who they were already seeing for something else). All to get an early diagnosis like the Alz assoc said to do. They were diagnosed with MCI and were not even given Aricept. I asked why get the diagnosis? The assoc support group people said so you can get the financial stuff in order, so that you can learn and plan for the future. Find out what your LOs wishes for the future, but you do not have to say anything beyond "memory problems". It was a shock, but for me that was the right advice.

Emily123 gave you a lot of good resources and advice. I will add a book, sometimes called the Alzheimers bible, titled, The 36 Hour Day. Your library will have it.

M1

Welcome to the forum, I'll repeat a story I've told frequently. When i told my very independent partner that I thought she was losing her memory (this was 2014), she about took my head off. I then went to discuss it with our very good internist, thinking that if she heard it from him, she would have an "aha" moment and then realize that she needed to defer to me in certain life aspects. He laughed. And in fact, that's not how it works for most people. Most have anosognosia, such that they cannot perceive their losses and insist they are fine. So trying to have the talk at all may not be realistic. You're going to have to do what needs doing without expecting her buy-in. If you get it, count yourself among a very fortunate minority.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but glad you found this place.

She hasn't received an official diagnosis from a medical professional, but her primary care doctor and that doctor's nurse both know that she is having issues. She also just has some cognitive tests in a neurologist's office (while I was present) and basically didn't successfully pass any of them. The neurologist ordered some further tests which are being conducted in the coming weeks. I don't know if she will give a diagnosis after those or not.

Normally the neurologist orders some kind of imaging to rule out lesions and often there is more extensive neuropsychological testing which can help tease out what kind of deficits a person has which can help narrow down which dementia is in play here as well as a general stage in which the PWD is. Often, the neurologist will schedule a follow-up appointment after all the testing is completed. At this point, the doctor may or may not share her diagnosis with her. They do usually tell family who are with the patient. There may be recommendations around driving, handling finances and living alone. Medication to improve function, albeit temporarily, may be offered depending on the type of dementia.

But I feel like everyone is avoiding the conversation and it's left up to me.

They may be waiting to discuss until such time as they have more information. Or perhaps they aren't going to inform your mom. Many families would prefer their LO not be told. Executive function and memory are early losses in the progression, so many PWD don't have the cognition to use the information for anything but triggering anger or depression.

I'm scared that once I tell my mom what I've been seeing, she will either become upset or then act differently around me. We have a great relationship and always have fun together and I don't want that to change because I've said I'm aware of this issue.

My dad was diagnosed fairly late in the game. I believe that early on my expressing concern about troubling behaviors caused him to become very suspicious of me. If I got a do-over, I would not have played my hand. We never enjoyed an easy relationship and telling him made things worse. He was so nasty that I visited my parents alone to spare my husband, son and niece his aggressive behavior. YMMV.

Later dad developed anosognosia, so reminding him of his diagnosis once he had one, only agitated him. Our situation was a bit unique in that one of dad's mixed dementias was alcohol-related and somewhat reversable with an abstinence so his neurologist did inform him and remind him about drinking at each appointment. My mom tried to keep him sober, too, but in the context of also having Alzheimer's she eventually stopped.

Does anyone have any tips or suggestions for how to approach this very difficult subject with someone when it appears they don't realize what's happening to them? There's part of me that really wants to get it all out in the open so we can just live with this "new normal", but I'm afraid of her reaction and how things will be forever changed once it comes out of my mouth.

Your mom can't change. Telling her something she doesn't have the bandwidth to recognize herself will likely feel like gas-lighting. You are the one who needs to make the changes needed to be safe in this evolving situation. You may find yourself creating therapeutic lies to take steps to keep her safe.

HB

jfkoc

That is a discussion I personally do not think needs to happen. It has no positive effect!

What I do suggest is for you to understand how important a correct diagnosis is;

Diagnosing Alzheimer's: How Alzheimer's is diagnosed - Mayo Clinic

You will be responsible for seeing that the correct steps are taken.

Your lives have already been forever changed. You are on a journey that is not easy but can be made less difficult through your and your familys education.

Please continue learning and please let us know how/when we can help.

TiffanyL

Thank you to everyone for your helpful comments and resources. It's so comforting to know there is an amazing place that we can come to feel supported and receive helpful information.