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.
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.
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.
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...).
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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