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

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.

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!

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.😊

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.

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!

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.

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.

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.

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!)