A visit to the neurologist(1)

mrahope

My DH, age 83, was diagnosed with MCI in 2020.  He is very aware that he does have short term memory loss.  We visited the neurologist who gave him this diagnosis yesterday.  The doctor said he "doesn't think this is early Alzheimer's".   I was also concerned with DH's ability to drive given his memory impairments.  The doctor told us that DH should be only driving in daylight hours, during good weather conditions and should stay off the highways.

The doctor has ordered several tests, which I will arrange for him to have over the next few weeks, including an MRI, an EEG and neuropsychological testing.  We are then to follow up in November because apparently that is how long it takes to get the results of the neuropsychological testing.

My question is:  Has anyone else here been told a similar thing about driving?  And also, if this isn't early Alzheimer's, what could it be?  FWIW, my DH seems crankier than ever and does have other health concerns, including heart issues.

Any wisdom others can share with me will be appreciated.

Rescue mom

Welcome, but sorry you have to be here. As we say, “the club nobody wants to join.” But there is more practical, helpful advice here than anywhere I’ve found, and lots of people with experience who likely have dealt with whatever problem you’re having.

Your DH is about same age, and sounds similar to mine,  a few years ago.

Could the neurologist think there’s another non-cognitive  medical issue that can be treated? 

Or maybe a different type of dementia, like vascular dementia, instead of Alzheimer’s? There are several common types of dementia, more than just Alzheimer’s.  Did the neurologist think he has any vision problems to make night/weather driving harder? 

 “early onset”  dementias/Alzheimer’s etc., is usually a specific term, for a specific condition for people under 65. Maybe he (neurologist) was trying to make a joke? Or maybe he thought you knew that and he was just struggling for something to say?

The PWD also lose judgment, reaction time, and abilities to respond fast to something unexpected along the way. I would think your DH heart issues also are involved (they were with mine).

But the driving was my first big wake-up call on the dementia. DH had some memory problems, and lost executive function (yes that’s an actual thing), but most people didn’t think it was a big deal, or didn’t notice his inability to carry out anything, since they’re not around 24/7.

Until he got lost going to a very familiar office, less than 2 miles away, on a very familiar road. The cops brought him home because he did not remember where he was going, nor why he was in the car. 

I cannot describe how shocking that was. We had no idea it was that bad. And then I found he’d got lost driving in the neighborhood before, and neighbors got him home. My DH “drove” (operated the car) just fine. He just couldn’t remember where he was going, or why, or how to get anywhere.

Doctors are often reluctant to flatly tell a PWD they must stop driving. There’s been a lot of talk in this forum about that, and why—fear of lawsuits? Or fear of alienating the patient? Who knows…but maybe that’s why all the conditions. Stopped just short of “no driving.”

And once there’s a history of any, any level of,  dementia, if he did have a accident, you could lose everything regardless of fault (civil lawsuits). Many insurances will not cover or will void a driver with those issues. Not to mention the personal guilt.

Many PWDs get cranky, or depressed, or easily upset, or withdrawn. They know somethings not right, but usually can’t articulate or fix it.

That time frame for all the testing sounds typical IME.

jfkoc

Have complete labs been done recently to rule out possible and often treatable causes? Have all perscribed drugs as well as OTC been evaluated?

harshedbuzz

mrahope wrote:

My question is:  Has anyone else here been told a similar thing about driving? 

One of the women in mom's IRL support group had a husband who developed symptoms of dementia which hospitalized. Once home her recovered from the psychosis piece but was still not who he'd been prior to his surgery. They followed up with a memory specialist who diagnosed MCI and gave his blessing to working a driving so long as it was limited to short local trips. He did OK until he didn't. TBH, his personality got darker and his wife worried he'd make poor decisions driving because he was angry. It went OK for about 18 months when he had an accident hitting parked cars on their street. 

And also, if this isn't early Alzheimer's, what could it be? 

It could be one of the other dementias. A couple of my aunts had vascular dementia; if he has coronary artery disease this could be the answer. My dad had mixed dementia; one was an alcohol-related form that is sometimes seen in those with cancer, AIDS, bariatric surgery patients and eating disorders. Parkinson's/Lewy-body dementia and frontal-temporal lobe dementia are other forms. In the latter, memory is preserved a bit longer but speech and behavior can be an issue earlier than in ALZ. It could be a mixed dementia that includes ALZ but looks different than is typical. 

Vitamin and hormone deficiencies can also cause dementia-like symptoms that are generally reversible to a degree. Most neurologists/memory centers would do these blood tests first. 

FWIW, my DH seems crankier than ever and does have other health concerns, including heart issues.

It's interesting you mention mood. This was the very first change I noticed in my dad almost 10 years before he finally got a diagnosis. his neurologist felt the mood change may have been an early symptom of his Alzheimer's. 

Any wisdom others can share with me will be appreciated.

mrahope

Thanks so much for your replies.  FWIW, the neurologist has used that same "it doesn't look like early Alzheimer's" phrase before, so I think that means that perhaps he thinks it might be some other type of dementia/cognitive problem.  Also, yes, he has been tested for non-cognitive causes and keeps in good touch with our family doc on those things.

It's so good to know I'm not alone in looking at these things and wondering what they add up to and what happens next.  Honestly, the crankiness is far worse for me to deal with than any driving deficits.  We've been married 44 years and this is not typical for him.  He can completely melt down over a lost handkerchief...and did so just a day ago.

I also appreciate the information that the wait for neuropsychological testing is very long.  I got an appointment for November when I called today.  He has had this testing before, but the doctor has ordered it again.  The first time diagnosis was MCI.  There's so much that seems left to my judgement in the handling of our day-to-day affairs. 

Thanks so, so much for sharing your experiences.

Ed1937

mrahope wrote:

And also, if this isn't early Alzheimer's, what could it be?  

There are literally dozens of other conditions that could cause symptoms like dementia. Some can be successfully treated, and I really hope this is one of them. Just don't put too much hope on that. If you do, it can be very hard to take the diagnosis if it is some type of dementia. It takes several tests, including blood tests to rule out other things.

Iris L.

mrahope wrote:

Thanks so much for your replies.  FWIW, the neurologist has used that same "it doesn't look like early Alzheimer's" phrase before, so I think that means that perhaps he thinks it might be some other type of dementia/cognitive problem. 

What does early Alzheimer's look like?  The signs appear subtle while they are happening in the years leading up to a tipping point.  But the signs may appear obvious in retrospect, after the dementia is well established.  

IMO, now is the time to become proactive and investigate legal and financial options.  Think about safety measures, and whether or not a move to alternate living quarters will be needed.  Pay close attention to driving; observe the patient yourself or consider a professional driving evaluation at a hospital.  

Iris L.

M1

Mrahope I'm going to play the cynic here. I'm a doc, fwiw. It's probably dementia of some variety and the neurologist is being coy to break it to you gradually.  I'm not necessarily badmouthing him, it takes most people time to adjust to a difficult diagnosis.  But given the lack of effective interventions, he has no incentive to be accurate in what he tells you, and I guarantee you're going to find more practical help here than in any doctors office. 

 Truth is, time alone will tell. Not all MCI progresses, but most does. I agree with iris, you would be well served to prepare for the worst and be pleasantly surprised if he does not progress.

mrahope

Thanks again for the replies, M1 and Iris.  We already have DPOA in place and I am the financial manager for our household and have been for some time.  I am getting ready to look at a major downsize/move, also.

I must say, I agree with you, M1.  I feel as though this doc isn't being very forthcoming, but since there's little that would change (other than driving issues), I suppose he thinks it's easier that way.  Sigh.