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Ronikaye Asked June 2018

Doctor refuses further testing, but says she does not have dementia or Alzheimer's. Any advice?

Ok so our mother was prescribed aricept about 2 months ago. But doctor says she does not have dementia or Alzheimer's? So what was the aricept for then? I have read that it is not good for just aging memory loss? She passes her mini test, but yet can not operate telephone, remotes, etc.. We go through h*ll with her, we make appointments for her then she refuses to go, any appointmenst, foot doc, hair done etc, then she accuses us of holding her prisoner. Calls us liars, accuses us of stealing, refuses anything I cook she literally lives off bananas, we tried voicing our concerns to him he will not even listen to us at all. To make matters worse as she flips like a switch, she's all sweet and loving around strangers soon as they leave it's back to the combative attitude towards my husband and I. She is 88 and broke her hip in Nov and we finally moved in with her to keep her at home, and it's been a big decline in her, since. Any advise? We noticed changes in her over the past couple years stopped all social activities, ect. Insurance company would no longer insure her as a driver either. She has always kept her medical records tightly sealed, we just have found out who her doctor was a little over a year ago and it was only because she was forced to stop driving. She would even tear doc name off her perscriptions until we started driving her, we are at a loss.. and this is just a begining of the story. There are so many signs that point to dementia but can not get a diagnosis.

SueC1957 Jun 2018
Can you ask your aunt, in an "alone" moment, if she'd prefer to go back to the NH? No fun to pass away being bombarded by a demented sister.
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Something's weird about your mom's old doctor...prescribing Aricept but she has NO dementia? Maybe he doesn't want to tell her she's got dementia (because she'd refuse to take the meds-however this is not morally right). You've got DPOA, so he should be able to tell you what's going on. That's the only thing I can think of. 
As far as I know, Aricept is not used for any other condition or disease.

Per WebMD;
"Donepezil (Aricept -trade name) is used to treat confusion (dementia) related to Alzheimer's disease. It does not cure Alzheimer's disease, but it may improve memory, awareness, and the ability to function. This medication is an enzyme blocker that works by restoring the balance of natural substances (neurotransmitters) in the brain."
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I think the reason that doctors are hesitant to state that a senior has crossed over into dementia is because it's such a fine line. Especially if the doctor has known the patient for a long time, then emotions come into the picture also. No one really wants to recognize that something is wrong and then DECLARE to the world that this person is no longer mentally fit and devastate their lives. So they wait. And so do you.

I'd try a different geriatrician or possibly a gerineurologist to get a conclusive diagnosis on your mother, if she'll go. Sometimes you just have to wait for the "bomb to drop" (something she does that's really wrong and could cause her or someone else to be in danger or land her in E.R.).

I remember being where you are, helpless to do anything, but having these very difficult behaviors to deal with. As the disease progresses, there will be no doubt that she is suffering from some type of dementia (Alzheimer's, vascular, Lewy Body, Frontal lobe, etc.) You just need to keep searching for a doc to say so.

If you can, take a video on your phone (pretend you're going to take her picture or a photo of something else) when she's really 'whacked out'. Keep doing this so you have "proof" for whichever MD that sees her next. You can't refute the evidence caught on camera.

I'm sorry. I wish I could say that it gets easier as the disease progresses, but I can't. The whole disease is a struggle. In my moms' case, Aricept did nothing. At 95 and at stage 6 Alzheimer's, I'm trying to get her doctor to wean her off the drug. (If you've taken it for a long time, it can't be stopped abruptly.) Why clutter her body with unnecessary drugs that don't work.

I hope you can find an answer from a knowledgable doctor, however your 'power' right now will be knowledge. Read everything you can about dementias. This site has good information as does Alz.org.

I'm sorry. (((Big Hugs)))

Ronikaye Jun 2018
BlueRidge gal and everyone else thank you so much and yes I looked up the showtiming and would have never even thought of that and that's exactly how she does. In the mean you are correct they look at you like you are making it up. We also take care of our 92 yo aunt which is her siater, she went into hospital about 7 weeks ago with severe intestimonial bleed. Got it corrected and she was in rehab, that's when mom just basically turned on us, we finally brought her home and thinking that maybe by some miracle that it would at least calm it down...boy were we wrong over the last 9 days it seems to have made her worse, cause now she just sits in there with her and constantly just putting us down how bad her life is with us ect. And poor aunt is tired she basically came home to pass in peace. And now we are stuck in the decision do we take her back to NH or continue to allow mom to depress her more...we are in a rock n hard place. So many emotions going on.

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BlueRidgeGal Jun 2018
I wish I had helpful advice to give, but I'm in the same position. After years of my mother's antics, I finally got her in to see a neurologist, thinking finally- I'd get a diagnosis that confirms what I've suspected about her. But no...after all the "testing", she is only "mildly cognitively impaired". So the fun continues. What I've found helpful is to keep a diary of sorts. I keep records now of all the stuff she does and says. It also helps me to get out how it makes me feel too. In the future, if things continue to escalate, at least I have notes for the "experts" to review.

Thank you jeannegibbs for throwing out that "showtiming" word! I had to go look it up and it's exactly what my mother does! I had not heard of this before now. Whenever I've taken mother to doctors, hospitals, therapists etc she puts on a big show of being "fine". It used to drive me nuts because everyone would look at me like I was making up all the things I've observed. Thankfully, anybody that spends any length of time with mother eventually sees her true side.

Hang in there ronikaye! We are here for you!

HolidayEnd Jun 2018
Ronikaye—We can’t know why the doctor refuses to assist you to care for your mom. Some guesses...he really believes your mom’s delusional tales, which by the way are the same song and dance my mom told everyone in 3 counties and law enforcement as well. This stage is common and the patient tells the same stories, acts similarly to most other dementia patients...so it’s hard to believe A SPECIALIST can’t see common symptoms and falls for ‘showtiming’.

Or the doctor is just burned out. Nurses and doctors get burned out like everyone else who cares for dementia patients. So he doesn’t want to get involved. It also just could be your mom or you he can’t abide. I’ve been in HATE with particular doctors, not everyone can keep things on a professional level.

You could admit mom to Geri Psych for a checkup of her mental functioning. That will settle things once and for all. The psychiatric hospital should offer this service. Then get her admitted into AL now because she’s just going to get worse. If a facility is not in the plan then at least they’ll put her on proper medication at Geri Psych. It’s a 4-5 day stay there for a psychiatrist to diagnose and get the meds adjusted.

DotM57 Jun 2018
Sounds like my husband and I am getting no help. He also demonstrates show timing which is so difficult. Everyday is an argument! He goes to his doctor and says he's fine. He was diagnosed last year with Mild Cognitive Impairment, but he thinks he's fine.
I feel your pain!

Ronikaye Jun 2018
Jeannegibbs, thank you for the advice, Sadly he is a geriatric. She has told him that all we are after is her money,ect.ect. she has told him we refuse to cook for her, stolen from her the list just goes on n on.. but what gets me if he believes her and yet will not diagnose her then why hasn't he sent human resources to investigate? His demeanor does not add up. We have DPOA but have realized that it is very much a very exspensive useless piece of paper.

Countrymouse Jun 2018
I think you'll have to apply for guardianship. You'd better contact your Area Agency on Aging to find out where you can get support with this process, because your mother's doctor is clearly not going to help.

As you say your mother has *always* kept her medical records tightly sealed, I can't blame the doctor for anything more than being a bit of a numty. He has very clear instructions on top of a very clear duty of confidentiality. He's just being a bit slow to respond to changing circumstances and newer, better information.

You could try asking him what responsibility he believes he will have if he continues to uphold your mother's autonomy long past the point where she is mentally able to exercise it, thereby exposing her to risk. But it'll be quicker, simpler and less confrontational just to go round him, I should think.

jeannegibbs Jun 2018
Here is a diagnosis: Mother has dementia. Whether you have an "official" medical diagnosis or not, assume this one. Learn all you can about dementia, common symptoms, and ways to deal with the symptoms.

Your description sounds a lot like my husband in the early stages of dementia. (His was LBD.) He tried calling the sheriff to report he was being held prisoner. Fortunately he never punched in the correct number! He went across the street to report on my stealing and holding him prisoner. Neighbors fed him some cookies, calmed him down, and sent him home.

This doesn't sound like it would easy, but switching to a Geriatrician as her PCP might be a very good move.

Aricept helps some people with dementia. (It did help my husband.) Doctors tend to try it on anyone who MIGHT have SOME KIND of dementia or Mild Cognitive Impairment, even though it was developed for a specific kind of dementia. It doesn't help most of the time. Unless Mom is having side effects I would continue with it another month or two, but if it doesn't seem to be doing any good, I'd tell the doctor you want to discontinue it. (It does not slow progression of the disease. It can help with some symptoms.)

Since there are currently no good, reliable treatments for dementia, I'm not sure that further testing would make a huge difference in outcome. Generally us caregivers and also the medical personnel deal with each symptom as it comes up. For example, right now you are dealing with paranoia. I don't think there is a medical treatment for paranoia per se, but there are medications for anxiety. (But Mom would have to be willing to see a doctor who'd be willing to deal with her symptoms.)

By the way, that turning on and off the charm switch is called "showtiming." Now you can look it up!

Hang around here. You'll be surprised how much company you have coping with similar problems!

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