My aunt thinks my mom's dementia is a lie, and isn't properly being taken care of, any advice?


My aunt recently took my mom and my daughter tagged along. While at her home, she got on to my daughter that she wasn't being properly taken care of. That she didn't have dementia, that she simply desperately needed her thyroid pills. So when my daughter asked why she didn't believe that she had dementia, well she said, "Because she is active, and not falling apart like most Alzheimer's patients. Alzheimer's patients are quiet, and basically bed ridden, while some you can't even understand anymore" I was fuming! She has always done this since my father died, and before my mother's diagnosis. she is just the type to meddle. Because my father was no good at taking care of her, and neither am I. Personally, I'm not perfect, I don't claim to be. I have never had to deal with anyone with dementia before, so I play it by ear, and what I don't understand, I ask the doctor, or I look up online. I have gone through the rummaging, I have had to lock cabinets, the fridge, and even had to clean up her room more than once a day because she hoarded things as well. Then she would never recall of doing any of those things. My husband and I have to cook her meals and save portions of it at a time, because she forgets that she eats, and either refuses to eat or wants to eat more. She speaks to people who are not there. But because there are stages that every dementia patient has, and because the disease has not worsened, but stayed the same, and she slowly, very slowly seems to be worsening, it has to be her thyroid. The doctor right before her diagnosis, was called by my husband to inform him that she needed medication because my mother had the flu, and he really didn't want to taker her out in the cold or anything of that nature. He said, "I just want her to rest, and I will go get her medicine" The doctor said she needed to come in, to check her out, before prescribing something for her. He had them set up an appointment, which was a week away. We were reluctant, but he still scheduled it, because the doctor didn't seem too worried. He then said, "You can get her some Robitussin if she starts coughing too badly" My husband was really upset, but because she held the doctor so high in regards to her care, he didn't say anything. Her doctor knew we couldn't give her anything like that, her seriously high blood pressure was not going to help her feel better. So, we did what we could at home, until he could find someone to see her immediately. We didn't find anyone, and she got worse. We took her to another hospital since her, one that her doctor wasn't from, and one that I trusted. There, they found that she had pneumonia. They asked who her Dr was. He told them to NOT do anything until he sent someone from his office to go see her. There he and his colleague could not find the same diagnosis. So he sent her home. I was FURIOUS!!! This is the same Doctor who told me she didn't have anything wrong with her, that she simply needed to take more thyroid, and then when his blood levels would check out, he lowered them again, and they would be normal, and nothing would be wrong, but her memory loss was worse! So, at that moment, when she was sick, I decided to get her a new doctor, I scheduled her an appointment which was for three days later, and sent her to the hospital. I could not go, I was at home with my kids. My husband went, and I told him, "Tell them she no longer has a primary physician, that we are in transition, and the doctor we are looking to be her dr is this dr" so he did just that, they called him, he immediately came to the hospital, signed for her to have antibiotics, and she started to regain her health, that night he called in the neurologist, and that morning she was diagnosed with dementia shortly after meeting the neurologist. He then said, "The illness will NOT be cured, but with medication, and since it's very early, we can slow the disease" He did later put her on both Aricept and Namenda, but he has predicted every symptom, and some I have not seen yet. All three of her doctors tell me, that she has dementia. Even though I was one to try to deny it, or refuse to see it, but the symptoms, and the change of personality, and other things that I have seen, like when she misses even one dose, I know it's dementia. Even though, I hate the disease, and how it has changed her, and how it pains for me to see her get upset, because she forgets how to write her name, I still have to say, that there are things she does, and that I have seen, to prove to me, what I didn't want to see. I'm am emotionally tired with being a mother and trying to keep peace between two teens, and a sometimes hostile mother, who says doesn't need my help. I really don't need my aunt to come bully me on what I am doing wrong, what should I do? I don't even know how to feel. Sometimes, I think, maybe she's right. NO matter what I do, it's never enough.

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Very good insights, Chimonger; Gratitude prayers make us think positive thoughts even as life gets negative sometimes. Keeping an "attitude of gratitude" is wonderful advice.
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It is so hard to deal with people who behave that way!
But understand, it is quite common for someone with a medical condition, to try to see that in the aunt's son having his hyPER thyroid, and believing that is what is haywire with your Mom....if they do not think they themselves have a condition, they see it in others.

You've been working with your Mom's Doc.
Mom is taking her meds. Doc is supervising her conditions.
THAT is very well done.
The Aunt is out of line. She can talk, rabble-rouse, and try to trouble-make, but she is not the one in charge of your Mom's caregiving...

MAYBE Aunt is really scared that what your Mom is going thru, might happen to her, too? That can drive a person to behave as your aunt is doing.
She could also be very emotional about the loss of her sister...she sees the end coming for her sister, and probably already is grieving, not totally understanding that is what is happening to her emotions--anger is part of grieving.

Her son is not a medical professional, is he?
And, I bet any education [and thinking, not nearly enough education] he has, is not in health care?
He is also probably responding to his mothers emotional issues, too--children do that--it is one way [a poor way] to help console someone who is distraught--he is probably trying to help his mom work thru her emotions, and just doing a poor job of it.

People are too often unaware how hurtful their words are, how what they say can be misconstrued; made worse by not realizing where their own emotions really are, and how those trigger what they blurt out. .

It is not likely that Aunt is thinking of how you feel, what stresses you are under, nor what is going on really-
-but mostly, underneath her bluster, she is scared for herself, as your Mom is her sister--which means, her prospects could easily be similar, health-wise---and that she is too close to losing her sister.

If there is one thing I have learned in life: those who bully, cause trouble, or have hurtful behaviors, it's related to themselves carrying around some really heavy baggage of hurt feelings and bad life experiences.

I have found it helpful to practice Gratitude prayers... "I am grateful to have these lessons in life", or, "I am grateful to have the time left with Mom;" or etc., whatever fits for you...and have a chat with Creator while at it.
I do these statements and conversations while I exercise, because emotions + the physical stress of exercise seems to make them work better.
I end up feeling lots better.
I pray this might work for others, too.
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So many times people look for ONE answer, and there is really a whole collection of problems. Glad you have a smart Doc to work with.
Your cousin would have had HYPERthyroidism, not HYPOthyroidism. Exact opposite. Sounds like your Doc will order all of the appropriate tests (there are several). Maybe trying different types of thyroid meds is a good idea too -- you can always go back to the original if the others are less effective. Nutritional suppliments (Vit D, B-12 injections, etc.). Won't harm, may help, will head off some of the "if only you'd tried ____" & will let Auntie know that you are covering all of your bases. I think one of the fears I had in the early stages is that the dementia would turn out to have been some stupidly simple fix that I missed (like thyroid, or B12...).
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I have NOT discounted thyroid, I have taken all that needs to be taken in account that it's that serious. I am practically open to just about anything, because this woman is not just my mother, but she has always been my best friend. I had a wonderful relationship with my parents, with the occasional mischief of course, but I was close to both. When my father died, it devastated me and my mother. Being an only child, I took the responsibility to look after my mother. My children and I, were already living with her, because when I had my divorce, my father promised to help me on my feet. From that moment on, I had to take care of her, because her mental stability started to decline. Now, that I look back, there were signs, of the illness. Not very severe, but some things I wish I hadn't discounted before. When I took over, she had not been taking her medication properly, and if I had gotten involved before, or brought it up to my father's attention before, we could have possibly prevented this. I realize that her thyroid could have caused this, because of the fact that her thyroid was always out of control. I'm not discounting it. The doctor says she does have a thyroid problem, but that she also has dementia. As of right now, we are changing her medication, because we want to make sure EVERYTHING has been tried. It's better to be safe than sorry. That was also her Doctor's thoughts. If the doctor tells me, that we are to think it could be this, I trust him, and will do whatever it takes. The one thing that gets me, is the fact that her sister was so quick to jump to conclusions, only because she thinks this is what is wrong with her, she hasn't talked to her doctors, she hasn't seen anyone who can tell her my mother's medical information. What she is going by is what her son told her. He has really high thyroid, to the point that, he lost over 300 pounds, and people accused him of being on drugs, only to find out that his thyroid was at a dangerous level. He had some type of surgery, and has convinced her, this is my mother's problem. She hasn't even checked with me to see if this COULD be the problem. She's just assuming, like I said earlier, she wasn't very fond of my dad, so she's not fond of me either. My mother is a very warm person, and there are moments when I cry because I feel she has returned to me for a moment. To see her with this horrible disease, is hard. I wouldn't wish it on anyone, not even the most horrible people deserve anything like this. Which is why it's hard to see someone like my mother have it. However, if this is what is happening to her, then I want to make it as comfortable for her as possible, while she has this illness...even if that means enduring her sister.
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Oh--was going to add a couple bits of information about thyroid:
Thyroid, whether high or low, can have emotional / psychiatric effects, among other things, but it is -not- as likely that these manifest within only one day's missed dose,
nor would behaviors become marked or extreme by missing a couple doses:
IF someone is acting-out markedly, they probably have missed a bunch of doses--perhaps 2 weeks to a month--in which case, it will take them a few days to tame down to closer to normal, after re-starting their thyroid.

USUALLY, one is cautioned, when one first starts using it: "this will likely take a month or so before you really feel the effects of it".
HOWEVER: many people have experienced the following:
== effects are felt faster than mainstream Docs let on, sometimes in a few days;
== After one has been using it for some time, and misses a few days, sometimes only 2 days, one may experience emotional roller-coaster effects, usually relieved by restarting the thyroid dose as prescribed.
This is particularly for Armour thyroid.

Armour thyroid has some components Synthroid lacks, however, pharmaceutical companies promote their synthetics for profit, and some folks do not want to consume animal products; and there is that yuck factor--Armour thyroid literally stinks...but it does work very well, and some people cannot get good relief from hypothyroidism without Armour thyroid-- Synthroid just doesn't do it for them.

As ferris1 stated, the "generic" is often NOT the same effects as the Name Brand--in ANY prescribed medication.
1. Recent disclosures have specified that "generic" medications can be higher or lower than the prescribed dose of medication by an average of 20% [some even higher or lower].

2. Generic medications can have OTHER ingredients [those pesky "inert" or "non-active" ingredients], which can cause greater incidence of allergic reactions, or which can block the intended drug from being adequately used by the body, or which can cause the drug to process more effectively than expected--

3. You may get your generics from one manufacturer one time, and another another time, getting entirely different results.

All of which means:
Generic medications, if one is using them, must be adjusted for---though that can be hard to do, as one batch may be skewed one way, another batch skewed the other way...
One can discuss this with their Docs, and request name brands, particularly when using medications that require a fixed blood level, or if one has many allergies or sensitivities.

Your Doc and you can figure out which manufacturer makes one that works for you, and order that one specifically--though many huge pharmacies cannot accommodate that, in terms of Generics.
IF your pharmacy supply cannot accommodate your specific source for generics that works for you, you may need to specify the name brand, and just stick with that, to get reliable results.
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A little caution about hypothyroidism. It takes several months for the med to kick in, but also I have found Levothyroxine (the generic) has a nasty side effect of making one really aggressive and nasty. This is probably the only time when Synthyroid (Brand) is far superior, but the dr. has to specify "No substitutions" and perhaps you have to get an authorization from your insurance company to cover it. We found no ill side effects with Armour Thyroid. Each body is unique in the reaction to each drug, so if one does not work, try another. Another area to test for which mimics dementia is a deficiency in B-12. That's the vitamin required for your small intestine to absorb food nutrients. As one ages, B-12 decreases. Do a complete work up of all bodily functions to rule a problem out for dementia. An MRI or CT of the brain is also good.
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SO good you finally found a Doc who paid attention, and did proper diagnosis and referral to neuro! SO many elders mental deterioration goes UNdiagnosed, making life that much harder to deal with, caring for them.
IF one is faced with a Doc who fails to properly diagnose, FIRE them.

You did right, telling the new Doc the elder was between Docs and looking for [named] new one.

Bullying is a very unfortunate problem, and comes at worst times, from family, friends and medical staff as well....we just have to keep believing in ourselves and our abilities--you work so hard to take care of the elder do due diligence to find proper information to do things right....and often, it has to be done flying in the face of what other family/friends understand.
Sometimes, caregivers just have to make "executive decisions", because no one else will.
Those executive decisions can come with a high price for a caregiver to pay, too....they can cause hurt feelings, as well as family rifts--especially when others keep listening to moody, "creative" elders, who lace their dramatic claims of theft, abuse, etc. crimes, with just enough truth that others have a hard time telling what's what really.

Be of good heart. You are doing a very difficult job. If your relatives keep saying they do not believe how mentally off the elder is, make sure they get to spend more time with the elder, up close and personal....they'll see it.
Take care of yourself, first, and well.
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Please please don't discount Hypothyroidism!! The TSH test mentioned above is a good start. Research hypothyroidism, there are Alot more tests than just that one. Alot of the symptoms mimic dementia/alz. I'm going through this with my 89 yr old mother. She has been diagnosed with dementia but also has a hypothyroid. I found ...Stop The Thyroid Madness....web site and it really was an eye opener. With my mom I'm not discounting the dementia (shes acting like thats what it is) but it also could be her thyroid.
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The book, The 36 Hour Day, is such a great book for loved ones of people with Alzheimer's. Personally, I fear Alzheimer's more than I do cancer. Of the two, I would choose cancer. Alzheimer's is evil and I don't mean in a religious or biblical way, it just defies explanation as to how devastating it is to the person who has it and the family and friends. It tears through a person's brain and rips apart their perception and can torture someone and the family for years before it finally ravages the body as badly as it did the mind and the friends and family are left with horrifying images of who their loved one turned into, an almost feral-like body barely resembling the person they once knew and loved.

And the people who care for loved ones with Alzheimer's deserve a special place in heaven. If your aunt isn't part of the solution then she's part of the problem. She needs to pull up her big girl panties and quit waving her coconut oil around and get out of your way while you're caring for her sister. You're doing an amazing job and you've made great choices regarding your mom's care. But like someone else said, don't underestimate your aunt's influence with your mom. Your mom is very fragile and vulnerable and she trusts your aunt because she doesn't know any better.

Keep doing what you're doing, your mom is in great hands!
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First of all, Aricept and Namenda DO NOT slow the progression of dementia. Perhaps you misunderstood the neurologist or you were hoping for a cure. Dementia is a terminal illness and it only gets worse. Being in denial about your mother's illness is a coping mechanism for both of you, and if it helps and does not harm your mother then use it. However, soon her behaviors will get worse and you will be forced to accept the diagnosis. Having hypothyroidism can act like dementia, so taking the correct medication (there is Synthyroid, Levothyroxine and Armour Thyroid) will improve her moods and memory. I am not a supporter of Aricept and Namenda because of the side effects on my husband, however, if she can tolerate them (and that is a big IF), then take them. Make sure you consult the neurologist about the side effects she is having.
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