Follow
Share

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.

This question has been closed for answers. Ask a New Question.
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.
Helpful Answer (2)
Report

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 others....like 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...
...like "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.
Helpful Answer (0)
Report

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...).
Helpful Answer (2)
Report

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.
Helpful Answer (0)
Report

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.
FYI:
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.
Helpful Answer (0)
Report

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.
Helpful Answer (2)
Report

TDuggan,
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
....you 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.
Helpful Answer (0)
Report

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.
Helpful Answer (0)
Report

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!
Helpful Answer (1)
Report

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.
Helpful Answer (0)
Report

I agree with many earlier posts. Everyone shies away from dementia and ALZHEIMER'S because they are afraid and refuse to educate themselves.

Your aunt may not spend enough time with your mom to observe the signs. Your mom likely can "show stop" where she can snap-to for periods of time and appear normal, catch herself and then once the company or family leaves, collapses in exhaustion and is even more out of it for a couple days. I know because my mom does/did this. The longer my visits the more obvious the signs also the longer she was isolated from family and friends the worse the dementia.

I went to her family physician with a long documented list of observations, witnessed talking to people not there, paranoia, accusations, fantasy, etc. even though she could pass the time, date, draw the clock, count backwards test, when asked other questions related to my letter, she didn't deny some of the stuff and he could see that some of her "truths" were fantasy and he diagnosed her plus had confirmation from neurologist and elder psychologist. My mom still denies her dementia even though she has the diagnosis but I've witnessed her breakdowns when she's had overwhelming confusion.

It's awful when relatives, friends and family stick their head in the sand, it doesn't help the loved one and enables them in fact to continue to not accept reality or help, or plan for their future. As the caregiver, you deserve the support, not the undermining of your decisions.

Sorry, but she's not likely to come around. Ignore her and move on. But don't allow her to undermine you or make you second guess. If she starts, tell her okay, hubby and I are going away for a week and mom wants to stay with her favorite sister or sister in law.

PS. Screw the doctor. Find a physician experienced in geriatric care and go with your gut.
Helpful Answer (2)
Report

Another idea: call Adult Protective Services and tell them you are concerned about your Mom not taking her meds; and that her caregiver (your Aunt) is in denial about your Mom's diagnosis, so she is not giving her the meds she needs. I know it sounds drastic, but Adult Protective Services will take your claim seriously. BTW: if you call, APS won't tell your Aunt who made the complaint.
Helpful Answer (0)
Report

Alz./dementia etc. - two of the worst things a person can experience for both the loved one and the caregiver. Many folks don't understand what is going on because the person "looks so normal", especially if they only see the patient infrequently; however, those of us who are 24/7 know differently, i.e. the talking to no one, reaching for things that are not there, forgetting where they are, wanting to go home to their parents, forgetting who they are or who the spouse is who is taking care of them. God bless all the caregivers everywhere. Several books I've read: "Your Name is Hughes Hannibal Shanks" written by himself and his wife - she was dealing with Alz. back in the 80's and was an awesome person. Another "10,000 Days, 10,000 Nights" and "The 36 Hour Day" - google the titles or books on Alz. and you'll find a wealth of information. As for your Aunt, I'd be careful about her presence without you being there. If she would get your Mom on a good day and take her to an attorney, you could have a mess. I think she is in denial, but one never knows for sure what is going on in someone else's head. I'm proud that you changed doctors and found one who listens and takes action. It is critical that you have a doctor who actually does those things. My husband was on Aricept for 5 years and we finally quit because there was no change; for us it was a waste of $'s. He now has a Meningioma (brain tumor)along with the Alz. so his pain meds are being monitored by Hospice; they are wonderful folks. We also get bath help, volunteers to visit so I get a break, nurse visit once a week etc. We can call them 24/7 if needed. The Alz. and Meningioma are not connected. We feel blessed to have family support, and the love and prayers of many folks. Keep up your good work - and do what you would want to have done for you, if it was reversed. Take it one day at a time. If necessary, don't have the aunt visit for a while if it upsets your Mom or you. Your Mom will sense if you're bothered about something. Take care of yourself.
Helpful Answer (2)
Report

TDuggan78 Your a good daughter and your husband from what you wrote he seems to be on board. About your Aunt .... I guess she has the power of diagnosis of Alzheimer's when know one truly knows for a fact, until autopsy after death. I do want to tell you that I remember reading that one of the main causes of dementia is thyroid condition. I also believe that high blood pressure is an added risk of stokes even if minor they can cause undetected memory issues. The only person you should be listening to about this is the Neurologist. You concerns now should be that your Mom gets needed nutrition and that her medication is taken as prescribed. You can't trust a person with memory issues to take meds properly. I didn't know until quite a while after my Mom was diagnosed that it is crucial to be very structured about the time of day Aricept and Nemenda are taken same time every day. What I mean is not to fluctuate 8 pm is 8 pm 8 am is 8 am and skipping pills is a big no no.... will make things worse. Make sure the meds she is taking are not risky to take with others, ask the pharmacist.
Helpful Answer (1)
Report

Been there (in a similar way). My Mom has Alzheimer's, but her friends want her to be the "old" Lois. One of her friends really doesn't get it. My Mom wants to buy buy buy (cosmetics/clothes). So last month, they went to lunch. My Mom comes in with her hands filled with clothes (many very inappropriate for her age). I've told her friend no more shopping trips. When the 2 are together, they spend up a storm. Also, your Aunt sounds either ignorant or selfish (or both). Tell her to check with the Alzheimer's Association ( or you could request info from them be mailed to your aunt. My mother is an angry, confrontational, and verbally abusive. So she is wrong, wrong, wrong.
Helpful Answer (1)
Report

oops. "use", not "us"
Helpful Answer (0)
Report

Get the blood work, talk over the TSH levels, etc. It IS a hard diagonsis to wrap your mind around when someone seems so "normal". Get every test known to man if her insurance covers it (vitamin B, etc., the works). First of all, there MAY be other things going on as well as the dementia -- us it as an excuse to get super-great nutrition, exercise & take vitamins -- all things that may help her anyhow. Let her sis "meddle" all she wants in the vitamin regimen within reason, draft her to take your Mom on outings for exercise if feasible-- if you let her feel like she is "doing" something to help your Mom she is less likely to criticize what you are doing.
Helpful Answer (2)
Report

Its plain to see your Sister doesn't what She is talking about,You are with your Mom 24/7 and see thing She doesn't,looks like your doing a wonderful job keep up the good work.
Helpful Answer (1)
Report

And one more thing, think about where your mom would be without your help. She would never think to do the things that you are doing for her.
Helpful Answer (1)
Report

The bullying statement touches a chord. One of my sibs accused me of bullying her, they sent extensive information to others about my abuse of her. Good grief! And I am the one that has responsibility for my mother 24/7, and she accuses me of bullying her. Where is her gratitude for what I have been doing? She has always been quite narcissistic since a young age. Whatever she can do to call attention to herself, rather than the issue at hand. They also thought mom had "a little memory problem". What a joke!! Many family members were and still are in denial about what has happened to our mom.

Tduggan78, you are an excellent advocate for your mom, which we all have to be. It requires significant diligence to get them the medication and assistance that they need. You need to have a very thick skin and not let the others around you get to you, especially family members, that believe that they know best, when they are not around enough to understand what is occurring.

The fact that you finally got the medications and obviously a change in physician, that your mom needed, shows what an excellent advocate you are for her. Keep it up, this is not a job for many.
Helpful Answer (1)
Report

Thank you both, really good advice, and I never thought of the fear, it makes sense. She and my mother are the only sister left from 6 sisters. Thank you both so much!
Helpful Answer (0)
Report

Duggan - i think Virtual is spot-on in their advise. Your aunt is in total fear that what she see's in your mom will be her. Plus is is a total busybody and control freak.

You are on the right track with the neurologist. If mom is not in a gerontology practice, then I'd schedule an appointment to get her to see one and have them become her primary physician. All of her medical care gets coordinated through them. If the MD are also medical directors of NH, that could be a big plus as when the day comes that mom needs a higher level of caregiving that you can do, then she can move into one of the NH they are on staff at.

There are all kinds of dementia's too. My mom has Lewy Body and still is pretty functional with her ADL's but has the animal hallucinations and visual issues that Lewy does. She also has the paranoia - "I was robbed!!...They put poison in the rice" that seems to be a part of all the dementia's. Things will get more intense so best of luck and keep a sense of humor.

Oh also make sure you have all legal done - DPOA, MPOA and that the will is updated - so that Auntie can't make this an issue for you all.
Helpful Answer (3)
Report

I'm so sorry for your situation and I empathize, as my Dad has gone through many of the stages of AD so far. Its difficult to realize that this is a disease from which no one will get better. As for your Aunt...Many people don't want to admit that those people closest to them have Alzheimer's, or any other type of dementia. I think it makes them afraid, even subconsciously, that because a close relative has the disease, they will get it too! My grandmother had Alzheimer's for many years -- became frail, called people by the wrong name, didn't know who her kids or grandkids were. My mom and dad, who lived furthest away from her and saw her only once or twice a year, knew that something was wrong and suspected Alzheimer's. Those who lived in the same area, one right next door, refused to admit that anything was wrong with her. She lived alone in her house until they finally agreed that she was ill and was moved to a nursing home, but I still don't think some of her kids and grandkids believe she had Alzheimer's, and she's been dead for 15 years now. As for the doctors...There are family doctors who are very good at recognizing the symptoms of Alzheimer's. My dad was lucky (if you can say that!) in that his GP recognized something, gave him some tests that included remembering words and drawing diagrams, and immediately said that he was in the beginning stages. Dad was quickly sent to a neurologist. There really is nothing that the neurologist can do except try to prescribe meds that might be helpful (most aren't) and watch him as he progresses. Dad sees the neurologist every 4 months at this point. There is no cure for Alzheimer's. Its sad to say, but your mother will only get worse. I don't know of any advice I could give, other than to try to ignore your Aunt. If she doesn't want to see what's right in front of her, there's nothing you can do. As your Mom progresses, your Aunt may eventually see the light and admit there's something wrong. Perhaps your Aunt needs to give you a break and watch your Mom for a week or so? Then perhaps she'll understand that the doctors are correct and your Mom has Alzheimer's. Hang in there...
Helpful Answer (4)
Report

This question has been closed for answers. Ask a New Question.