Update on Mom's neurologist appointment: I’m having last-minute regrets. Have I opened a can of worms?

There are many things that can be done to impact age-related dementia. What the doctor described was not scary, but rather encouraging actually. Healthy eating habits with good nutrition; creative use of things that your mom enjoys, and talking to Dad about giving mom a break would be very helpful right away. Then find ways to lessen her stress level which is the chief offender in age related dementia. Regular contact with her (same time daily, weekly?) reminders about family birthdays/celebrations; tactfully offering to help her to traditional things without asking questions like "did you remember to...". All those things will give her confidence that she can manage. Good for you for caring.
One other thing, perhaps the most important is that you help your dad with his fears also. He is perhaps being more critical than helpful with his comments and that is usually a fear response. He is older too.

My Mom wasn't diagnosed with dementia until a few years ago. Turns out, she was somewhat relieved by the diagnosis because she thought she was just losing her mind. The diagnosis gave her a reason why she couldn't remember things, etc. She had secretly been worrying about it for more years than I had. Even if you never know what the cause is, you cared enough to search for answers. You may have even secretly helped your Mom.

Hi everyone!

It's just occurred to me that I accidentally posted my update about Mom's MRI on the my very first thread, instead of on this thread. Rather than duplicate, I'll leave it there. If you want to read it, here's the thread link: https://www.agingcare.com/questions/mom-diagnosed-with-dementia-but-im-not-convinced-and-i-have-so-many-questions-472835.htm

Thanks again for all again for showing of support, kindness and for sharing your experiences with me. It has meant so very much. ❤️

Heidiann; I just saw your reply to me about getting mom to see a geripsych for medication management and a psychiatric social worker for talk therapy to learn how to deal with her DH's gaslighting (which actually sounds more like HIS cognitive decline talking).

Please tell your mom from me that I resisted going to therapy years ago because my crazy ex-DH would say (and he did) "See, YOU'RE the crazy one. It's not me, it's you!). I found out later that when we went to couples counseling, the therapist regularly would excuse him from coming any longer after a few sessions because he was "unfixable"--i.e., had personality disorder. I got the therapy to help me deal with him.

I learned in therapy that it's us sane folks who go to therapy to learn to deal with the crazy people we live with.

It sounds to me like mom has always lacked self-confidence and assumes that others are correct in their assessment of her as "lacking". Therapy can go a long way toward re-framing this habit of mind.

Please give her a hug from me.

Thank you all so much for your words of encouragement. I’m so overwhelmed by all of the positive replies and I’m so grateful to be a part of this community.🙏❤️ 

I may not get to respond to you all in detail but wanted to at least acknowledge and thank you in this message before time runs away from me. And I’ll also address a few of the key/common things some of you asked about: 

HEARING : Yes, this is a huge issue. But, actually, on her husband’s side - he’s clinically partially deaf and has been wearing a hearing aid for over 10 years (which now barely works). Mom’s hearing on the other hand is super sharp, she hears like a dog. I am around her enough to know. So yes, while I understand this definitely causes communication strain between them (and I do sympathize with him for his hearing struggles), It’s really is not **just* the hearing…

THE GASLIGHTING: This is very big theme. It comes in many forms. I've seen it many times. One example is kind of like a word salad where he’s not communicating clearly and if Mom asks questions seeking clarification, he gets defensive and changes what he said or convinces her he never said it. So she feels crazy. Another doozy: Mom is a very light sleeper (b/c of her super sharp hearing, actually!) and in their bedroom there is a dull humming sound from the boiler which she has been complaining to him about for years b/c it keeps her up at night. He keeps telling her she’s crazy that there’s nothing there - coming from a man who KNOWS he’s practically deaf!!! So when I came to visit, I was sitting on the bed with Mom watching a movie and heard it myself. It’s very subtle but would drive me crazy if I was trying to sleep. I told her I could hear it too. The following day while I was in the other room (he didn’t think I was there), I overheard her say: “See, I told you there is a sound from the boiler, Heidi even heard it” His response:? “So just because Heidi heard it that makes it true?”🤯 There are clearly mental health issues here. I don’t think he’s even aware of what he’s doing. Not that it’s any better. There is zero chance of him getting checked b/c he genuinely thinks there is nothing wrong with him and my Mom has all the anxiety (did I mention he’s been married 4 times before Mom? All wives left him).

DIET: Oh how I’ve tried to get her to eat more whole foods but she is in a comfort zone atm (she used to grow and eat veggies from our garden but now she eats what he eats - meat, carbs, very little veg and sweets). She finds cooking stressful and I don’t have the heart to keep harassing her about it. She’s so thin, I’m happy she’s eating at all. I’ve had to pick my battle on this for now. But will try again.

ACTIVITIES: I’ve also tried to get her to join senior centers but there is really nothing in her teeny town and the next town is far. The distance seems daunting to her right now. I got her into coloring which she really enjoys and that’s helped immensely.

DEMENTIA/DEPRESSION: I know a label doesn’t matter and I’m not trying look for one, I just want to understand as much about what’s going on with her. I never talk about her memory “issues” and never use the word “Dementia” b/c lets face it, we really don’t know at this stage and the last thing I want to do is make her feel worse - whether it be dementia or not. I’m just trying to educate myself on all eventualities so I can help her the best I can. She’s steady on the anti-depressants now and I am hoping this will help.🤞🏼

Thanks to your messages of encouragement, I’ve now snapped out of it and realized that I have done the right thing. I know we likely wont see evidence of dementia on the scan. But I would have never forgiven myself if the accompanying headaches turned out to be something more sinister and it was never checked. Her husband called me “alarmist” for taking this initiative (this same guy who kept telling both Mom and me how “bad” her memory was). Charming. 

I'll post another update after the scans! :)

I truly wish we would test all people over the age of 60 for "neurological health". The truth is that 75% of seniors over the age of 75 years old have some form of dementia - and the percentage goes higher as the person ages. The other truth is that most forms of dementia can be treated medically to improve memory and function in the early stages.

It might help your mother to let her know these facts. it might also help her to know that you are only interested in her maintaining the best health and function she can - because you love her and want the best for her.

heidiann I think you did the right thing. If you had not taken your mom in for evaluation you most likely would be second guessing that decision as well.

Rest your mind.

heidiann: Imho, you did not open a can of worms as it's much better to be informed than not and now you have a definitive answer. Thank you for updating us here on the forum.

We have all done the same with our loved ones. There are treatments for many Neuro issues and it’s not a bad thing to get it checked out. If you DIDNT get it checked out you’d constantly wonder if it was a serious issue. You did what you needed to do. Don’t be so hard on yourself.💜

Does her husband have dementia? I’d check that out because it could be a reason for his gaslighting.

I think that Mom's Eldest made an extremely important point about the role that hearing loss plays with the elderly receiving criticisms that they are not "remembering" things that they have been told. My own mother (94 years) has only recently admitted that she has "hearing loss" (she "forbids" us to use the word "deaf"!), although it has been obvious to our family for almost 15 years! Another important point about the role of hearing loss and the elderly is that hearing loss is also related to developing or worsening depression. I'm wondering if a lot of your mom's issues may be related to hearing loss.
Sadly, my mother refuses to be evaluated for hearing aids because she maintains that she is "going to die real soon anyway, so why should (she) spend all that money for hearing aids when they are so hard to adjust to anyway?". I hope you'll have greater success getting your mother to be tested and fitted for hearing aids, if appropriate. At least they will help in some areas in which she is having difficulties.
Please don't beat yourself up over this situation! You are clearly a loving, thoughtful and caring daughter and person. Just as when we transition from being single to being married or from being child-free to having a baby, there is no class we take beforehand that we pass or fail prior to the transition taking place! You are doing the best you can in the midst of a very complicated situation!
I have found this space (AgingCare) to be a great source of information, comfort, and support. I urge you to keep in touch. Don't neglect giving care to yourself during this time. I've just started to learn that taking care of my own body and mental health is the most important thing in the "care-giving-of-others" experience. If I am ill or suffering emotionally, then I am not able to be of any help or service to those around me, no matter how deeply I love them.

Sounds like you might want to request a sit down/or zoom with the doctor to ask all your questions. You might also want to get a second opinion of her situation and where it is leading.

I also found out that several heart meds can cause memory loss; then the issue becomes longevity vs more lucid days that she has left.

Stop second guessing yourself. How can it possibly hurt to have a good, clear assessment of where she is now?

And don't make sweeping assumptions about "dementia" (of which there were literally dozens of causes, all with their own pathways and signals, and which are much given to intermingling). Some causes - e.g. space-occupying lesions, normal pressure hydrocephalus, B12 deficiency - are in fact, indeed, treatable and symptoms can be very effectively relieved. And whatever the cause, there are still techniques, adaptations and approaches in supporting the person which can make huge differences to quality of life throughout the journey.

And at the very, very least - better the devil you know!

Well done to you for getting her there. If there IS a can of worms, much better you know what's in it :)

Yes and it was a can worth opening! Being in denial or enabling denial are usually not helpful.

It sounds like your mother may benefit from being around positive people her own age at a senior center a few times a week.

Also, if you don't already have it, get her important paperwork in order i.e. durable power of attorney both medical and financial, advance directives, and will.

No you did the right thing. I hope you have had your mom sign a release so that doctors can speak with you about her condition because it may be necessary in the future. It’s way better to know than not know. My dad was so stubborn that he wouldn’t speak with a doctor about anything even though we were sure he had full blown dementia. His lived an hour away from me at the time and I was dealing with my husband dying from a brain tumor so I felt very helpless. After my husband died I tried to intervene with my dad but he was so stubborn. Luckily when he had to have emergency surgery a few years prior he had signed a release so I could speak with his doctor and that helped so much during that time. Finally he fell down his stairs and laid there for 3 days or so before his neighbors became suspicious something was wrong and he spent several weeks in the hospital and was finally diagnosed with dementia. In my opinion the earlier the intervention and the more open the dialogue about it the better. It will save you heartache down the road if you deal with it as it progresses and not when you’ve got a major crisis on your hands from not dealing with it.

My husband claimed he was worried about my memory because he told me things that he said later I didn't remember. Well, I knew my hearing was bad so had decided to get a hearing test. Lo and behold, it IS bad, and the worst tones are low ones, such as a man's voice. The audiologist counseled BOTH of us about living with someone who is hearing impaired, about the need to get their attention first -- not just speak and assume they heard/listened/comprehended what was said. I got the hearing aids but honestly, the audiologist's recommendation to get my attention is the thing that has made the most difference (along with not hearing well, I also tend to get very focused on things that I'm reading so if I'm on the computer/reading a book, well, don't talk with me and expect me to hear it). Now that I'm more aware of the attention issue I realize it's not as easy to switch back and forth (multi-task) as when I was younger, and given my DH talks ALOT, it's even more important that he get my attention if he's telling me something important that he wants me to remember. Like I said, it's been a learning process for both of us.

The reason I'm bringing all this up is that perhaps your mother's hearing may be somewhat of an issue, or her husband talks but hasn't gotten her attention first. These are normal aging issues that sometimes creep up on us without our realizing it.

In my opinion it's good to check out concerns, particularly if they are causing friction in a relationship.

The final diagnosis of a dementia can only be found in the autopsy. A clinical diagnosis is only based on symptoms and is never 100% accurate. Anyway, for all practical purposes, there is no need to get a 100% exact diagnosis. All dementias are progressive and incurable. To complicate matters, there are combinations of dementia types, like Alzheimer's with vascular, Vascular with fronto-temporal, Lewy body with vascular, etc,, etc. A pure type of dementia is rare. So, an exact diagnosis of the type of dementia is unnecessary. They all kill the brain before the body. Medicines only intend to prolong the horrific agony. Fortunately, they don't work and the dementia hardly slows down.

We can only do what we think is best, and just keep going from there. I don't think it is opening a can of worms, but just covering all your bases. If nothing else, you have a baseline for your Mom now. If she needs more tests in the future, they'll be able to see where she is now. My Dad's PC recommended MRI and tests, and pretty much found the standard brain shrinkage etc.,
I always thought of the opposite - would I regret NOT doing something for them?
Sorry you have to deal with your Mom's husband, sounds like he's not helpful in all this. But happy that it sounds like the neurologist was good!

maybe !!! There’s nothing to be done to stop or reverse dementia so
it just makes them feel bad for no purpose…
BUT ; there’s some medication that could slow done the progression and make them alittle sharper for about a year if you’re lucky and you start early…. (Articept)
I would get prescription and get her started but please don’t tell her it’s for dementia!!!! Say it’s vitamin !!!

You should not worry too much right now. I would suggest that your Mom’s diet be healthy (lean meat, fruits and vegetables) and try adding organic coconut oil and olive oil to her diet. She should also get outside in sunlight and do exercises in a chair or walking daily. As we age, it’s normal to have some memory decline. In the early stages of dementia, memory can seem fine one day and off the next. If you’re monitoring someone, it can make you anxious. Try to go with with it and make light if something does get confusing for her. Just keep an eye on the over all situation. Start thinking about future planning for her care so that you are ready when needed. You don’t have to do this alone. The Alzheimer’s association can put you on the right track, so can your local health department and social services administration. Think about the financial planning part of getting help as well. Nursing facilities usually charge 8 to 10 thousand a month. In-home care is about 25 dollars an hour. If your Mom qualifies for Long-term Medicaid, you could do the paperwork early and get her on a waiting list for a nursing home. It requires a lot of phone calls to make, forms to fill out, spending down of funds, and having her monthly income low to qualify for Medicaid. You need to take care of yourself as well. Have some fun with your Mom while you can.

Absolutely do not beat yourself up. We are all doing the best we can. If my parents didn't lalala away some of their'health concerns (I didn't want to treat them like "stupid old people" when they were doing quite well on their own), maybe my mom wouldn't be in a wheelchair (stroke 10 years ago; I always felt doctors weren't aggressive enough with PT and wish I'd pushed for more) and my dad wouldn't be dead from COVID. (Pre-vax; ER, docs said he didn't have it, till whoops, they tested him and he did. He was dead a few hours later. If I sound bitter, I'm not. His symptoms were atypical and they were doing the best they could do.)

Heidi Ann, I have a lot of empathy for you and your mother.

in a way, it is probably easier if her husband is off to see his brother who is newly diagnosed with cancer. Granted it isn’t helpful to your mother, but she has you to take care of her and take her to the MRI.

It might be easier if your mother could be in a place of her own away from her husband with friends who would not gaslight her like him. It is disconcerting when someone does that and can aggravate the depression even when taking the medication and erode self-confidence. The willpower to overcome has to be exceedingly high and when suffering from depression, it usually isn’t there. Distance is a good thing. So I hope the husband stays away for a good time - maybe more than a month or even longer. That way his family can point out his memory issues and shortcomings to him, while your mother can show how she is doing.

I noticed my husband did something like that to me the other day and I called him out on it immediately. The stunned look on his face was worth it. There shouldn’t be any pussyfooting around about the home situation because it will assist the doctor in providing better medical care.

Thank you for asking this question and the update. I learn so much from these exchanges and am relieved to find my mom is “normal” in her cognitive disorder. She is in assisted living and loves the freedoms of having her own apartment, a door she can lock, meals with her dining hall friends (can’t remember the names but knows them). She is an introvert who does better with one to one rather than groups. As my mom as progressed in her dementia, I also found the Neurologist wasn’t very helpful in subtleties. He was soft on explanation but good on saying she probably shouldn’t live alone. The best part was that the first visit, he did not deem her unable to make decisions so we updated her legal forms. She was very clear on wanting to update them and I didn’t want to do it unless the doctor cleared her. She already had estate forms in place so it was more of updating them by changing her decision makers. She saw my sister’s behavior with the mother in law’s dementia and mom was scared for herself being in my sis’s care. My sister has little to no patience and drops out when stress is high. That appears to be what your mom’s husband is doing. My sis is fine with me handling things but mom doesn’t want to see her unless she gets counseling. Mom’s decline in the facility is not a MC issue yet. She had her good and not as good days but she is very comfortable and when she doesn’t remember how to get to the dining hall, I got a private aide to help her from 2-6 p.m. That has been a blessing and mom has energy and joy with her aid who takes her to events, showers her, washes and fixes her hair, talks to her and does PT with her as well as taking her to the meal that she is most confused about (evening meal).
I appreciated the writer who relayed the decline was a few years before MC. Mom is 85. Whenever she say’s she is doesn’t remember or is confused, I remind her that she is safe, God loves her and I am there as her advocate.

Heidiann, in the end, it doesn't matter all that much what label is put onto mom's disorder(s). Is it depression? Is it dementia? Is it ABCD or E? Who cares, really. Let her stay on the anti-depressants and see if you notice a change in her demeanor. THAT is likely your best bet. FWIW, my mother went down the dementia highway; I started noticing her behavior was 'off' about 2014; nothing serious, just a bit off. She'd always been a depressed woman who refused to treat it b/c 'mental illness' was a huge stigma in her time, and in her mind, more importantly. I personally believe that depressed people who are prone toward mental illness to BEGIN with in life, are also more prone to dementia/ALZ later on in life. Has that been empirically proven? I have no idea; just my personal beliefs based on what I've witnessed in my mother's family. So mom stayed on Wellbutrin from 2011 when I asked her doc to prescribe something for her, until she died in February of this year. Those meds DID help her; she went from hardly functional after a hospitalization to quite functional and social once again, so the change was dramatic.

So in 2016 during a hospitalization, I asked for mom to be evaluated for dementia b/c I KNEW something was off with her. She failed the MoCA test with an 18 out of 30, and the clock she drew was a blob with no resemblance to a clock at all, meaning her executive brain function was compromised. The EB function is like the conductor of the orchestra; if he's missing, the rest of the orchestra is lost & confused.

Even after she was diagnosed, mom was ok. She lived in AL and functioned fine; had friends, went to social events, meals in the dining room every day, etc, So she had dementia from 2014-2019 without any real limitations to her every day life. In 2019 she went into a wheelchair b/c of bad neuropathy & way too many falls; that's when she had to segue into Memory Care b/c of a combination of mobility issues AND dementia. Had she not had the mobility issues, she would not have been a candidate for MC until 2021. So, she would have been perfectly functional in AL from 2014-2021 WITH dementia at play, and taking no 'dementia meds'. I wanted to tell you our story to put your mind at ease to some degree. Oh, btw, mom was 87 years old in 2014 when I first suspected dementia, and 89 when she was formally diagnosed via the MoCA test.

Elders can live long lives even WITH dementia at play, before things get 'very bad' and they need full time care or to go into Memory Care. Some never need to at all.

My point, after this long winded story, is try not to work yourself up over 'labels' given by neurologists or doctors. Leave your mom alone to live her life. Her DH is probably adding to her mental stress which always adds to cognitive decline. So does AGE itself. I can't remember squat half the times and I'm not even 65 until July. God knows what I'd score on an exam myself. Don't put TOO MUCH stock into tests or anything. Just leave mom alone to be happy, and don't talk to her too much about ANY of this! I never once talked to my mom about 'dementia'; when the subject came up, I'd tell her she had 'memory issues' along with the rest of her age group in general. She was 95 when she died. She was still in better mental condition than a lot of the other residents in her MC.

See what activities you can get mom involved in that keep her OUT of the house and occupied. I'd like to say she is very lucky to have a daughter like you as her advocate and caregiver. You did the right thing on her behalf and didn't open a can of worms; you can always have THIS baseline to go by, forever more.

Wishing you the best of luck just letting mom live her life now, w/o getting any more advice from doctors about dementia.

Barb in Brooklyn has a very good suggestion....and maybe you can also locate a senior center where your mom could attend activities and have a meal a couple of days weekly, to help her be around people and give her and her husband some space. Doesn't have to be a therapeutic program. Just the local senior center or one in a nearby community that has interesting programs. You dont have to live in a town to attend that senior center.
I think the medical systems tries hard NOT to diagnose dementia until it is pretty well advanced. Once that diagnosis is in place, the patient is not allowed to make decisions and the health care proxy must make decisions. That makes situations messier and take longer to figure out what to do next. And we all know, for the business of health care, speed is of the essence to ensure maximum profits.

Heidi, you've done not one but 3 very useful and loving things:

1. You did what your mom asked and arranged testing.

2. You sought to rule out what other conditions might be causing her low cognitive scores.

3. You followed up with the doctor who says that BECAUSE of her score on the depression evaluation, this may well be pseudodementia, not actual dementia. Depression IS treatable.

Dones the depression medication seem to be making a difference?

In your shoes, I would have mom seen by a geriatric psychiatrist for medication management and evaluation for PTSD-- perhaps some sessions with a psychiatric social worker can help mom on her struggles with her husband.

Major Cognitive Disorder diagnoses are newer terminology for dementia. If he diagnosed that, I would not put a great deal of stock in the pseudodementia comments. I would tend to agree with your instinct that he is trying to take some sting out of the situation. Just my opinion. Best wishes to you.

Heidi,
By coming back and updating, know that you are educating countless people at the beginnings of their journeys with dementia, even if it turns out to not be that.

Those of us, who involuntarily have been given a membership in this club, walked in, completely clueless as to the club’s prerequisites, rules, and how one proceeds into different levels of membership. One day we were on the outside, and the next, we were IN.

You’ve given insight and knowledge that so many of us wish that we would have had. I know that there are lurkers on this board, that never post. I just want to say thank you on their behalf. You will probably never know how much you’ve helped people by sharing your story.

Thank you, again.

The underlying cause of pseudodementia is depression.

https://www.medicalnewstoday.com/articles/pseudodementia

In your prior post you wrote:

"Mom also suffers from untreated PTSD, anxiety and depression due to a series of traumas in her life. But the anxiety and depression has gotten worse since being with her husband (last 20 years) and I’m convinced it could have contributed to worsening memory as well. It’s well documented how abuse can affect executive function and memory and I worry that all this combined could be presenting as dementia.

Her Dr/NP hasn’t been helpful - she just prescribed her Memantine and Zoloft..."

Is your mom actually taking these meds faithfully and accurately? I would ask that her husband be the one to dispense these to her to make she's remembering to take them. Or, if she is taking them properly (and her husband should probably be the one judging this) maybe your mom's depression meds should be switched or adjusted?

Have other causes been discounted, like thyroid or dehydration? Vitamin deficiency, etc.?

When dealing with geriatric care, the end results of testing sometimes leave us with an answer of “no good choices”; whether you test or don’t test, or discuss or don’t discuss, or wait or move sooner, no choices emerge that really make things better.

So moving forward, you, as a loving and concerned relative/caregiver, have to bear in mind that you may not be entirely wrong or entirely right about what you decide, but allow yourself to be reasonably confident (and comfortable) with taking what information you have, and choosing what is safest and most accessible and most reasonable for your LO.

Your LO may be unappreciative or frightened or hostile to your choices, but, although that’s obviously the hardest part of providing good care, you have to deal with your own reactions too.

What you’ve done is definitely not “wrong” and pretty unlikely to make her situation worse. Be at peace that you’re proceeding in a reasonable peaceful way.