I need help! My mother is displaying cognitive decline issues but has taken 2 dementia tests with the doctor and answers 28/30?

I think those tests the doctors do are a crap shoot.  My mom doesn't know her ass from a hole in the ground, but on some days she is able to answer a fair amount of their questions.  It's ridiculous.  Tell the doctor to dig a little deeper.  Ask her to read something and then explain it back to the doctor.  Ask her what she wore yesterday, etc...  The bottom line is....no matter what anyone thinks, it doesn't change your moms situation.  She is still having issues.  Once I finally grasped that, it triggered something in me. 

The despair, sadness, anger and confusion are normal feelings to have.  Like you, I didn't really have anyone who could relate.  My significant other of 28 years has a 98 yr old mother who still drives, lives alone and plays bridge on her computer.  My friends parents are still alive and independent.  My mothers family didn't believe there was anything wrong with her.  I felt so alone and so mad and sad about it all. 

If this is just starting with your mom, you probably still have a long road ahead of you.  My moms symptoms were noticed by me back in 2008...here we are in 2020 and I have sold her house and most furnishings, sold her car and placed her in assisted living.  I still manage her dr. visits, do her laundry, pay her bills, etc.  It's exhausting, but better than before I moved her.  Essentially, my mom no longer exists and I have accepted that.  When something devastating happens in life and I wish my mom was there to commiserate with or when something wonderful happens and I wish she could share in the joy...those are the times I grieve her "loss" all over again, even though she is still physically here.

Sites like this one does help because you realize that you are not the only one.  There are folks that are in a better situation than you and there are folks in a worse situation than you and everything in between.

Know this....you don't have to run yourself into the ground to be a good daughter.  There is no shame in placing your mom where there is 24 hr care.  Don't commit yourself to doing something out of guilt.  Know that you are not alone.
Take care.

My mother is also declining . she lives in IL but is pretty much on lock down they can walk to get their mail do laundry go outside and leave for Dr appointments, etc. but all meals are delivered to her apartment. So mostly alone 24/7 unless I visit, dad passed a year ago its now hitting her the were married 71 yrs . I am the only one to take care of her except for a caregiver to help with showers. She is sooooo lonely that she calls me at least 10 times a day. I am getting worn out because every day she has in her mind a major problem i have to handle it mostly by telling her its ok and not that big of a deal i will take care of it blah blah blah. Sorry I just needed to vent

Dear Only,
My mother is experiencing the same cognitive decline now and recently left me a voicemail telling me to stop coming into her apartment (she’s in assisted living w lockdown) and going thru her stuff, which is a lie. This is the third time she’s gone off on a tangent about something not happening. I feel for you deeply. I’m handing responsibility over to my brother as I’m exhausted from never meeting her expectations. Feel free to vent anytime. Hugs to you.

Imho, while she may and DID score well in a cognitive test, there is still the underlying anger issue. "The anger is most important to her?" Imho, anger makes one have wrath, which is not good nor pleasant. Perhaps she needs a test done by a geriatric neurologist.

The test that is being administered is a screening test. It does not address all the factors of dementia. What I would suggest is having your mother evaluated by a neuropsychologist. They will be able to perform a comprehensive evaluation using a battery of tests not one. Insight judgment, and executive functioning are among the cognitive issues being evaluated. A geriatric psychiatrist may also be able to administer the tests as well. For yourself, have you considered a caregiver support group or a different counselor whose practice is geared towards geriatrics. Perhaps you're not clicking with the first one. You may be experiencing anticipatory grieving which is mourning the person and the changes in health and cognition yet they are alive.

It seems like those tests don't always uncover what we know to be true about our family members.

Funny, my mom seems to like telling her angry stories too. Ooooh, this is how I dealt with those stupid telemarketers. Wow, that's great mom. Can you tell me that ridiculous sotry one more time? Please?

I agree - it is sad and confusing to watch your parent going down the tubes. Mine is slowly declining, both mentally and physically. Still reasonably OK but moments that make you think "what in the world is she thinking???".

If therapy is not helping, maybe you need to try a different therapist. I would hope that you could try confiding in one of your friends. One not close to your family. Partners are great but they don't always understand the issues that are going on and/or are not really equipped to deal with things like this. My spouse is amazing but lacks in this department. When I need stronger support, I have to talk to someone else.

Irritating each other - boy do I hear that one. I feel bad about it too and try to do better and be more patient. I know she gets irritated when I call her out on something but sometimes it just comes out of my mouth before I remember that she's not always firing at 100% anymore. Like she helps clean up the kitchen and told me she couldn't do anything while I was working in the yard cuz I "had changed a bunch of things". Huh? I'm like - soooo you couldn't unload the dishwasher cuz you didn't know what to do with the food scraps?? But, it's just like her brain can't take in the whole picture and see what can be done that is separate from the part that is confusing her. Kind of mind boggling and definitely takes some getting used to. Just takes me by surprise, over and over again. I guess I'm a slow learner!

P.S. I forgot to mention that we never really had a "definitive" test, and although others suggest various doctors and/or testing, you know your mother's condition, strengths and weaknesses. The nurse sent to test her when we were going to hire the aides was able to do this in her condo, with us present. She reviewed the results and made some recommendations, like the timed/locked dispenser.

I wouldn't waste time with testing just for testing/dx. If there was something a specialist could Rx that would calm her or help with any symptoms, then sure, some specialized testing might help, but more than likely these tests are going to be too much for your mother and make life difficult.

If you've read through the posts, you should see that there are at least a few who seem to be in a boat similar to yours! Their suggestions might be the ones to focus on. Problem is, with dementia one size does not fit all. Even if the "diagnosis" were the same for two different people, their path won't necessarily be the same. They may share some parts of the path, but each will follow their own.

One thing I found helpful was to learn all I could about dementia. There are various causes/types, and common symptoms, but again, each person's journey will be unique and those of us who have to cope with it can be left bewildered. Some techniques suggested, whether by others here or on "expert" websites may work, often they don't.

Once you have that under your belt, assess yourself and your capabilities. If you can harness your anger, walk away to compose yourself, learn how to respond in some positive way to her anger or how to distract her (not always possible!), find ways to ensure YOUR sanity remains intact, you may have your answer. These will be the immediate concerns - how to cope with various behaviors. The physical issues will come and will get worse (incontinence, hiding things, etc.), so you need to be prepared for those OR know that you won't be able to manage these.

At some point, care may end up beyond your capabilities. Do not consider yourself a failure or harbor guilt. This "trip" is not for everyone. I knew before my mother developed any signs of dementia that we would not be compatible under one roof. In addition, given her age and mine at the noticeable onset of dementia, plus my own physical limitations, this was never going to be. I also knew neither of my brothers would be the ones who could care for her. Our mother and her sisters took turns caring for their mother in their homes, but she was younger (as were they), still mobile and did not develop dementia. She was easy to care for. My brothers were thinking of that when they got sticker shock on hearing the cost of MC, and actually said 'for that amount of money, I'll take her in!' Comparing the care of our grandmother to the care our mother would need was like comparing apples to monkeys! Thankfully neither followed through with that line of thinking! Once has no patience and can be abusive as well as not being local to where we are, so we wouldn't be able to help or intervene, the other just lives in his own world, and too often is forgetful, or dismissive.

Before we could move her, we did try bringing in aides 1hr/day, just to get her used to them, do a sanity check and a med check (timed locked dispenser.) Less than 2 months and she refused to let them in. Since we took her car away, I was the one who regularly went there to take her shopping, fill the pill dispenser, take her to appts, check on her, etc. The repetition alone was enough to drive you batty!!! I had to learn to just smile, nod, tune it out, or try to change the subject, whatever worked to keep me sane! I also knew not to mention dementia (some insist we tell the truth, but 1) it angers her, 2) it is denied and 3) it is forgotten.) More lack of ability and other issues were revealed by having to help shop/prepare foods, having a camera installed to monitor her from afar and seeing the state of things in the condo after we moved her.

Hoping that at least knowing you are not alone in this abyss is helpful. Hoping that some have provided help or insights that are useful to you in this awful journey.

No one mentioned UTIs - hopefully you are aware how those can affect an elder, esp one with dementia. Can't hurt to check. Others mentioned anti-anxiety and doc reluctance to Rx due to fall risk. We needed those during her first UTI. Minimal dose, never caused any falls and the benefits outweighed the risk (she was out of control until the UTI was treated!)

Based on years of experience, I am going to say somethings that will most likely make some people mad. When you have people who have dementia or who are developing it and their behavior is obnoxious, yes, try all the kind, soft, gentle methods first to control it but when it doesn't stop - and it won't, if you want to survive and not go down from guilt, pressure, anger, frustration, you must become very tough and tell them in strong terms to stop the bad behavior - IT SIMPLY WILL NOT BE TOLERATED. Scare them in ways that it sinks in at least for the moment. Then if it keeps up, YOU have to decide if it is right that they are causing such a negative effect on. you and your life. You don't deserve that. You may have to face the fact that you should not be the one caring for them. They need to be placed somewhere away from you. If they weren't like this before, I understand how that upsets you but they are "bad" now and this cannot be tolerated and you must take appropriate action.

HI, Onlyonethereis:

I am very sorry to see you in this helpless situation. To help anyone else, you must care for yourself first..no guilt here. As some readers suggested, focus on some fun things for yourself, even if for just 1 to 5 minutes.

Dear Onlyonethereis.
I'm positive I am the person who needed to read your post because I speak each and every word of it to varying degrees every day..
Without exception..
Your post details every moment of my life as well. Even your screen name. I, too am the only one there is.

Thank you for sharing your heart, fears, sadness, confusion. Your post has caused me to feel less alone in my mom's decline (in part due largely to stealthy UTIs, for which she is now on prophylactic antibiotics. It took years of devastating confusion, hallucinations before simple antibiotics ended the serious dememtia).

I never post anything...just read for comfort. I read yours and almost froze, knowing a response was necessary.
The sadness, stress and isolation the past 6 years absolutely caused many episodes of suicidal ideation in me, formerly always the most positive person in the room! Therapy did not help me much either, and now that I've given up all work to be with mom during Covid19, I'd love to have the money back that I spent on it, lol.
Daily life can be painful, but several things I know for sure:
*Keep reading this site-some wise, loving, angry, lonely compassionate people post here. They have saved my sanity.
*Your self care is of utmost importance. You cannot care for mom and make sound decisions if you are crazy, in the hospital or dead.
*Keep breathing!
*Create a retreat (or several) in the place where you take care of mom. Anywhere from a backyard space to a closet with a blacklight poster--Somewhere to duck away to for even 2-3 deep breaths.
*Very few ppl in my life seem equipped to understand the continual daily agony of every waking moment. After 6 years, I'm beginning to catch on: I shouldn't expect them to. That way I won't be disappointed.
*Music, landscaping, and the vivid imagination of my 7year old inner child saved me. No matter how full my hands are I can think, pretend or sing. It is the only means of vacation.
* From what I gather, our feelings are normal because we are humans with emotions. If you weren't sad, lonely, irritated, impatient, well, that might be greater cause for alarm!

*Above all, You now have a Sibling who is living precisely the same "not life".
And so do I.😊

That's MY MOTHER!

She can snow her Dr., b/c he does a super quick 'memory test' and I don't think he even really listens to her.

As she lives with my YB and his family, Dr. knows even if she 'failed' the test it wouldn't matter, for her, it's simply a baseline thing--when one of us wonders why she's being so batty, YB can say "well, she passes the competency tests, but obviously is slowing down and cognitively she's not doing great'.

Years ago my DH and I visited our son and his wife. She was 2nd year at Yale Med and doing her Geriatrics rounds. She gave my DH and me the standard competency test and we both failed it, magnificently. Since we weren't 'into' life in New Haven CT, the questions she asked were, for us, unanswerable. We laughed at the time, but now, 16 years later, I don't think it so funny.

You kind of have to go with your gut. You see mom everyday and your opinion on her state of mind are probably the best test of her abilities.

I also trigger my mother and she triggers me. I have had to go grey rock with her--I almost never see her and can completely be in charge of when and why I talk to, or see her. That doesn't sound possible in your case.

You probably should bring in outside care, for you! Give you breaks of 4-8 hrs a few times a week, so you can de-stress and function better for your DH, your family and most of all, for you.

Stay in therapy. That saved me, my therapist gave me the strength to stand up to mother when she's being mean. And to walk away.

We were never close, so I don't feel like I am really missing anything. BUT--it has taken many years to get to this point.

We are going thru the same thing but the doc has even witnessed a angry outburst. But they just tell me be prepared for it to get worse gradually. Because my mom refuses to take anymore meds to slow progression.

You just described my life down to every detail.
This past year has just been awful.
My Mother is 84 and bed-bound.
We used to be best friends now she doesn’t trust me and can’t stand the sight of me.

That really sounds a lot like my relationship with my mother. Her doctor has her on aricept and it does seem to be helping. Mom thinks she is fine but she HAS been diagnosed with dementia. I hired a sitter part time because I cannot be with her everyday. Check ins are only when she has no other visitors or family coming over. Even my own sister does not see the decline I do. Mom is very argumentative with me and it is exhausting. I make sure she is cared for but it is not from me all the time. We never were close so its hard to pretend something that never was just because she is old.

Hi
I am going through the same thing
my mum as now physically put her hands around my throat and told me I am a monster like her father

i had a wonderful relationship with mum we did a lot together shared holidays etc

my hubby and I live together now mum 🙏
i had daily abuse for years I can not take it any more

Good Morning!
This is the most difficult job I have ever had. My mom has “forgetfulness” and gets stuck in a loop where she gets obsessed on something or will ask the same question again and again and again! My dad recently passed away and I have moved in to care for mom, 90 years old. Before he died, he told me I was doing too much for her! HA ~ was he ever right. I am so codependent that I anticipate her needs. BUT, if I am tired or malnourished, my patience is none. When I am not in eyesight, she is perfectly competent…………if I am near, she can’t even put her socks on. It is quite comical when I think about it. She and I laugh all the time about her behavior. YOU ARE NOT ALONE! I am here for you. PM me and I would be willing to talk. Have you ever tried just being as kind as you possibly can be? I find that if mom is combative, and I react ~ the war is on. If she is angry and I respond in the kindest voice I have, she mellows. Works almost all the time. It is not easy, but the fighting depletes every ounce of energy I have. I also refuel, that is so important. Mom goes to bed early and gets up around 9am or later. If I want alone time, I must get up early to enjoy. Late at night is when I unwind. Unlike any other job, this is 24/7 and it is exhausting. I look forward to talking with you. We need to support each other!

Onlyone,
I have the same cognitive issue with my Aunt. She continues to get 28/30. Yet her AFL totally knows she has dementia. They want to move her to memory care as soon as they have the space. Fortunately for me, she is still very pleasant to me.
My Mom is also in ALF. She has no real cognitive decline, but has mobility issues. Like your mother, my Mom is very hard to deal with. After doing a lot of research, I have discovered that she has narcissistic personality disorder.
Thru this site, I have learned some helpful coping skills. Going "grey rock " has been a life saver.
Sounds like she's living with you!
Get your ducks in a row!
POA, get on her bank accounts etc.. There may come a day when moving her into ALF will be a good idea for both of you. If that's the case, it's nothing to beat yourself up over. Often it's the best thing for you both.
Just know that you're not alone!!
God bless!

This is a good site for understanding and advice. Lots of good people here who can help you.

Prayers for you and your mom

If your mother has not been tested by a neurophysiologist, that may be the appointment you want to schedule for her. He/she will give her a test that is much more comprehensive. It takes about two hours or more, so have a nice lunch planned for afterwards. I did this for my father, it gave him a diagnosis initially of MCI, two years later we did it again, she told him and us that he should give up driving, I had been concerned about his driving as I rode with him often and it was beginning to scare me. Thank goodness dad agreed with her. It was very helpful to us, it brought things into perspective for all of us and being able to talk about it and ask her questions was priceless.

These are stressful times and you are in a very stressful situation. Others can sympathize, but no one is going to completely understand your unique situation. One thing that I note in your post is not just your mother's anger, but her expression of past events. Repetition of stories is very common. And when someone is anxious, depressed, or angry - guess which stories get repeated over and over?
My mother dealt with her own mother's dementia and has stated, if I start repeating myself please tell me. Ha! It does no good. And she often starts out sentences with "I know you've heard this". Okay, then why are you telling me for the 1000th time? And after the 1000th time, how do you think I feel? Even if I don't respond verbally, constantly listening to negative messages has to have an effect on our own minds.
All I can suggest is to try to distract your mother with whatever interests you can. Try to limit listening to the news. And when you get the chance try to engage yourself in something creative, positive, or at least neutral that requires enough concentration to give your mind a break from the things that stress you out.

Take her for a brain scan, like a CT, uncle answered all the questions (sort of) But the actual diagnoses came when he showed a significant brain shrinkage. That’s what did it. I told the doctors if he had a clear bill of health and could take care of himself; my husband and I would be renting an apartment and he could hire a housekeeper, caregiver or nurse and so forth.

I am going thru the same thing with my mom. She is getting so hard to care for all by myself and she get upset with me the same. I get some help from two of my siblings, but don’t get any self time at all. Mom doesn’t understand why I get tired and need a day away just to myself. We end up arguing often, every time I say I need a break. There are days I just want to lock myself in my room to escape the routine of her daily care, then I feel guilty for wanting a break. I don’t know what to do anymore, I’m so tired!!

If the doctor who is screening is a regular internist, he's probably not that attuned to diagnosing the sort of decline your mom has.

When my mom started seeing a geriatrician she was referred almost immediately to a geriatric psychiatrist, who insisted on full neuropsychological testing. Which clearly showed mom's decline, along with numerical scores to prove it to my dubious brother.

Can you get your mom to a geriatric psychiatrist for an evaluation of agitation, moodiness, rumination and possibly depression?

I'm not an expert but it sounds like your mother's decline is just aging. My father has dementia and it is a different kind of memory loss, being tired, etc. If she's always been an angry person typically that just increases. An older person doesn't have the patience to deal with why they're angry. Who went to counseling, you or her? Maybe that would be your outlet, to go to counseling just to deal with your emotions. Do you live together or just visit? Do you have siblings that could help? My father got 7 out of 30 for the dementia test 2 years ago. I see more of a decline since then at times. It's not easy but his personality is typically kind.
good luck to you both.

I understand. For quite a while, I was seeing real lapses in my mother's comprehension, ability to reason, and ability to do things. But whenever she went to the doctor (which was just every six months), she was able to showtime for the doctor. The last time I was allowed into the examining room and said something to the doctor about my mother's cognitive decline, she told me that my mother needed "social support," and that someone should check in with her daily to see what she wants. Ummm....NO. That was NOT going to be me. (My mother lived "independently" in her own condo 7 minutes from me. I was her Dummy Daughter Driver, as I liked to describe myself.)

One of her friends liked to tell me that my mother was her role model, and that she hoped she was as "sharp" as my mother was when she was her age. What?!

I think that my mother's doctor did not concern herself much with my mother's situation because she knew that I drove my mother to her medical appointments, and so she figured that 1. my mother wasn't driving and 2. if I was in the picture somewhere, I would take care of my mother's needs. My mother was so anxious that she needed some medication for that, but the doctor told me that she didn't like to prescribe anything for her older patients because of balance issues? I think.

When my mother had a gallbladder infection in Oct 2018, she ended up being hospitalized for 17 days, then into rehab, then permanent placement into a SNF. She slid steeply into dementia once she landed in the hospital, and no one made much attempt to get her permission to do things from that point on, because it was so obvious that she was no longer competent. The mental tests that were given to her showed the decline, whereas the quick screening the doctor gave her one time when she was still living on her own didn't show enough to concern the doctor.

When you wrote that you used to live with your mother part-time, what does that mean? I know that you live with fulltime now because of the pandemic. Do you see this situation continuing indefinitely?

My mother was so anxious that she needed some medication for that, but the doctor told me that she didn't like to prescribe anything for her older patients because of balance issues? I think.

As a physical therapist of 35 years, a partial caregiver for my parents, and an author on the subject of proactive aging, I understand your position. I teach people a proactive aging process for themselves and for their aging parents. One of the things I emphasize is that if you have provided this for your parent, you have done all you can for them.
Aging is inevitable and everyone will have their own scenario of this time of life. The rate of aging is dependent on their particular life circumstances, lifestyle, and genetics.
Caregiving can be difficult emotionally, physically and mentally. Find joy in the glorious times you have had together and take the "bad" times in stride. Remember the strengths and love that your parents displayed. They would not choose to act out with bad behaviors if they had their full mental faculties.
Don't carry guilt with you into the future. Be confident in yourself as a caregiver as you have done everything you can for your parents. This stage of life isn't perfect for anyone. I found treasures and joy along the way as well as heartbreak and pain when I couldn't do anymore for my parents. The last few years of my parents' lives were challenging but meaningful and I wouldn't wish them away as I was taught so much about life and love.
The best to you as you travel this journey. Take a break to breathe and go forward with grace and confidence. This time doesn't deserve to be any less than a fruitful period of your and your mother's life.

I am so sorry and truly know the sadness and frustration. I spent two years trying to get Someone to diagnosis my mom..Every time I got her to the doctors she could pass as having mild cognitive decline...She would perk up when she saw her doctor. ..at that point she could function well at times where she was familiar with the routine. .she had all your moms symptoms..after two years she could no longer hide it from the doctor..She developed hallucinations and paranoia. Finally even my brother saw how mean spirited she was with me..she finally started lashing out at him. She has Lewy Body dementia.. they have many clear times initially mixed with anger, hallucinations and she can no longer function outside a facility for memory care. Mom started with the inability to use a cell phone, messed up her med box, then no math skills, no words for common things , difficulty writing and constant hiding of items and money. Moms dementia started with heavy criticism of me. She disliked me despite us being best of friends. I found it hurtful since I was her social life, and her care giver in general. My brother she was so sweet with. I was accused by family of reading into her behaviors. Being too sensitive.I worked as a professional for 27 yrs in a facility and I knew dementia when I saw it. Keep taking her to the doctor..Log what you see and her reactions. I never gave up. I did do counseling for the anger and grief I was feeling. It helped. My friends also thought I was over sensitive now they see I was right...mom was ill and mistreating me...I was panicky because I knew mom needed help and no one could see it but me. Mom now lives in her world of hallucinations and everyone is a lot more sympathetic.

My mother and I were as close as two people could be, but we always laughed about the fact that we’d never, EVER, could live under the same roof.

AND WE COULDN’T! It is not at all impossible for this to happen, and our situation sounds very much as yours does.

Even with a trial of almost a year, she just couldn’t adjust to the fact that in my house, she was a guest, and I was the boss.

Ultimately she became a serious fall risk, and I was able to place her in a beautiful SN center. Her two sisters and I visited every day for 5 1/2 years, and she came to love her “home” and I did as well.

She was a tough cookie, and I was her greatest supporter. She had rehabbed herself following a severe stroke at 85 and was able to live by herself in her own home until she was 90, when she suffered a badly broken hip.

She was SO MUCH HAPPIER living in the safety and comfort of her new “home” the change in her was just short of amazing.

I spent many hours worrying about the best way to provide for her care, and the peace that resulted for me came from seeing her do so well., in what was for me, such an unexpected way. I hope that you will soon find the same sort of solution for your mom”s safety and comfort.