Trying to Help my Mother with Memory Loss

Zanymermaid

Hello all,

This is my first post. I am an only child and my parents live a 7 hour car drive away. Last year, I noticed that my mother was experiencing memory loss, but my father is in denial. Last May, I went up to visit and got her to see a neurologist. Her memory loss has gotten worse. She can't remember how many days are in a week and she thinks that her cousin who has passed away is alive. She was referred to another specialist in October and was supposed to go back for a diagnosis in December. My father canceled the appointment and is refusing to take her because he is afraid she might lose her driver's license. I've talked to him to no avail. I've reached out to my Uncle (my mother's brother), but he was no help. I asked the specialist to call him to reschedule the appointment, but he refused to do so. He seems to think that a supplement he found on the Internet is the answer and told me that the first neurologist who referred him to the second specialist said that there wasn't anything else they could do for my Mom which I know is a lie because because why else would they refer my Mom to a specialist? I lost my temper and said when they came back from their trip I was going to go up there and we were going to see the specialist period. Is that what I should do? Force them to see the doctor? I'm an only child and I like far away and I don't know what to do. I'm at my wit's end. According to the specialist and the local area agency on aging, I have no legal recourse. The specialist is going to reach out to my Dad again and also to the first neurologist. What should I do?

towhee

Hello zanymermaid, welcome to the forum. First, this section of the forums does not get much traffic, you might want to post also on the "Caring for a Parent" section.

It is really unfortunate that your father is being unhelpful here, but it does sometimes happen. I think you will have to make another visit and if possible stay a few days, otherwise you will not be able to know what is actually going on. It might be helpful to pin down the information you have right now, so you can plan a little for that trip and what you will need.

I am going to describe a typical process for diagnosing dementia, I might not have it 100 percent, so you might also want to google it, (the mayoclinic site usually has good info).

Family member advises patients primary care physician that there seems to be a problem—-PCP does short 15 minute screening test and does bloodwork, looking for vitamin deficiencies, dehydration, thryoid issues etc. Also screens for depression. If PCP sees problem and finds no explanation then refers patient to neurologist.

Neurologist does neurological exam, repeats the mini mental screening test, may screen for sleep apnea, and may repeat all the tests the PCP did. They also want a really through patient history of symptoms preferably from someone very familiar with the patient. They send the patient to get a CT or MRI, EKG, possibly other tests. They are looking here for evidence of tumor, stroke, seizures, or any other brain problems. If they do not find any the diagnosis is often MCI, or mild cognitive impairment, cause unknown. If the patients symptoms do not match the common Alzheimers ones, or the patient is "younger" they might be sent to a nuero-psychiatrist for more extensive mental testing lasting several hours, which can identify specific problem areas. A followup visit with the neurologist will be scheduled in six months, one of the dementia medications may or may not be prescribed. When or if the neurologist sees that the patients condition is getting worse, than a diagnosis of dementia is given.

So the first thing is what specialist was your mom was sent to, and does that referral fit the typical diagnosis pattern. You seem to be able to somewhat communicate with the doctors, but not enough to know what is going on. You need your mom to give you a HIPAA release or a Health Care Power of Attorney so that you can talk to her doctors. You also need these for your father.

You mention that your father is afraid that your mothers license would be taken away. Does he depend on her to drive or do they both have independent lives and he does not want to drive her around or is he concerned she would have a meltdown if she could not drive. It might be helpful to know. There is a lot of info on the forum about stopping driving that might be helpful.

You mention that they are on a trip. It is possible that in unfamiliar surroundings your mother may be worse to the point it is impossible for your father to ignore.

harshedbuzz

@Zanymermaid

You've already gotten some great advice.

One question I have is why one neurologist referred her to a second. Sometimes neurologists are generalists or specialize in a specific issue— spines, MS, dementia, seizure disorders, etc. If the first was a generalist, then the second might be someone who works more in dementia-related cases.

TBH, the meds available for Alzheimer's aren't fabulous. Some of the oral and patch medications can help a PWD function better temporarily but they don't work for everyone, and many can't tolerate the side effects. The newer infusion medicines have had very disappointing results in women. While I agree your mom deserves a comprehensive evaluation, having one might not bring as much to the party as you would hope.

My concern is the driving issue. Is dad dependent on this for his independence or is it because he doesn't want to deal with her upset at having it taken away? Depending on the state, you (or the doctor) could report her to the DMV for testing. One issue with the driving is that having been to a specialist, her mental status and referral are now part of a medical record that could be used in a court case if she is sued as the result of an accident. Her policy may or may not cover her now. The other piece is that court cases take some time to complete; if mom's cognition is deteriorating, she would have difficulty with being deposed or called to testify in a year or more. Your parents could lose everything.

In terms of legal options, a CELA in their state would be the expert but I suspect without other family on board and in the absence of profound neglect you would not prevail.

HB

SeattleChrista

https://alzconnected.org/discussion/69156/trying-to-help-my-mother-with-memory-loss

I certainly understand your journey. We spent years getting Dad appropriately diagnosed with Alzheimers. What I’ve learned since then is the official diagnosis does very little when both of your parents are in denial. The diagnosis offers no additional benefits with Medicare, no in-home care. Depending on where you live, there may be volunteer-based resources, but again, if your parents don’t accept the reality of ALZ, then their reality can become levels upon levels of anger, frustration, blame, isolation, etc. My recommendation is to join a caregiver support group. Challenges will continue to roll out, the majority being out of your immediate control.

JDancer

I'm so glad you've gotten such excellent advice on the forum. Is there any chance you get your dad here? He could learn a lot about dementia here and be warned of the (physical, emotional and financial) danger of a PWD driving. Is there any chance dad's in the early stages of dementia and exhibiting anasognosia?