What symptoms have you seen with early Alzheimer’s?

Care4Mom2

My husband was diagnosed with MCI in 2020. (The neurologist could not diagnose dementia. We will be finding another one…) While taking the cognitive test for the first time, he did have issues drawing the clock. He has had short-term memory issues for at least 3 years prior to his MCI diagnosis (maybe many years before that…) 

A month ago, I had an appointment with my internist (also my husband’s) and talked to him about what was going on. The doctor said that he thinks my husband has early Alzheimer’s.

He is still able to care for himself. But, his short-term memory has gotten noticeably worse since about last September (to me, at least). Around that time, he also started with some ED issues, which I have read happens at least 50% of the time at the start of Alzheimer’s.

A few days ago, I asked him to go to the store to pick up 3 things (he is always asking me if he can help me, so I figured I’d give him something to do….) I explained what I wanted, and  wrote everything down. He came back with one item. He had folded the paper in half (written side up) and didn’t look at the other side. He went back to the store to get the other 2 things. The next day, I had him go to the store to pick up 3 other things for dinner (I can’t seem to plan ahead!). He came back with the three things from the previous day. He had both lists in his pocket, and it didn’t occur to him that he had already bought those items….

He is still able to drive, but I am seeing some things that are unusual — things that I have not seen him do before. So, I question whether they were just honest mistakes or a brain mis-fire. I don’t want to jump to conclusions that everything he does that is out of the ordinary is Alzheimer’s, nor do I want to be in denial. 

One example was that he put the left turn signal on when he was approaching a circle. He didn’t stop and there was no one coming in either direction, and he did follow the circle properly. Another time, he put on his left turn signal at a sharp curve (the main road) and came to a stop (there was no stop sign). There was a road to our right that had a stop sign. Fortunately there was no one behind us. When I asked him why he was stopping, he said he didn’t trust that someone would stop at the stop sign. There was no one around. In response to my question, he probably just said the first thing that came to his mind, even if it didn’t make sense. (He does that often.)

Sometimes I feel like a helicopter wife, worrying that he is going to do something wrong. Then he gets mad and he tells me that he is not stupid. So, I back off. But, when I do that, something happens. The other day I didn’t realize he had put two pieces of bread in the microwave for 2 minutes at 60% power. They started to burn! But, again, did he really mean to set it for 20 seconds and hit the 0 twice?? Or did his brain mis-fire? It is hard to tell since everyone has done stupid little things… When I told him 2 minutes was too long, he just said, “I know that now.”

What kind of things might I expect to see as this progresses? How long have the stages lasted for you? What concerning things should I look for, especially when driving? What have you experienced? 

Pat6177

Care4mom2, this is such a difficult question to answer since everyone presents so differently. My DH’s PCP referred him to a neuropsychologist for the battery of tests to determine what his problem was. I don’t know if your neurologist performed that type of testing. If not, perhaps your internist could refer your husband to a neuropsychologist. The neuropsych stated in her report that based on the tests, my DH should not be driving. And suggested that my DH might want to go for a formal driving assessment done by an occupational therapist. Depending on the findings, they might be able to work with DH so that he could continue driving. DH of course refused to do that. If you are at all concerned about your DH’s driving, then at least try to limit his driving. Don’t ask him to go to the store for you. Try to drive when the two of you go out.

I’m sure others will post tomorrow with links to several good articles about dementia. In the meantime, you could Google the 7 stages of dementia. That will list out different symptoms for the different stages and gives estimates of how long the stages lasts. But the bottom line is that everyone is different. 

I have gotten a lot out of reading this forum regularly. People are supportive and will share their experiences. Keep coming back.

jmlarue

I second what Pat has to say - every PWD is different and there's no real baseline on how quickly or slowly their brain is dying. My MIL suffered a rather gradual, slow decline with Alzheimer's over 12 years from diagnosis. Personally, I'd say she was showing mild symptoms 3 or 4 years prior, but her children chalked it up to her acting "unaware" or "ditzy." So often, we don't recognize those early warnings that something is going awry. That was the case with her eldest son (my DH). In spite of the experience with my MIL's dementia journey, I didn't suspect my DH was going down the path for about 4 years. His earliest symptom was misplacing things - tools, car keys, wallet, credit cards. I chalked it up to being distracted or just a lack of attention to details. At first, it was only occasionally. Over time, the lost items became a daily upset for the whole household because he started accusing all an sundry of taking things or moving things so he couldn't find them. His sons were looked at as thieves and I was often accused of gaslighting. Still, we didn't recognize the real problem, we simply engaged in the treasure hunt to find the things he'd lost. He never accepted responsibility. In his mind, we were simply returning things we had taken. The other symptom I only recognized in retrospect was the failure of his ability to complete a task. The more complex the task, the greater the likelihood that he would only initiate it with the help of someone else or he simply would avoid it altogether. Home repairs went so far as demolition, but stalled when it came to putting anything back together. Bills went unpaid because "the computer was acting up." In truth, he was forgetting how to navigate the wonderful world of online bill pay with all of the bookmarks, passwords, and submenus to wade through. His difficulty finding his words was what finally drove me to seek medical advice. He'd say things like, "that guy" or "that thing" or "that place we went to." With time and twenty questions guessing from me, he might finally come up with the proper noun for that person, place, or thing, but it was an ordeal getting there. It's been less than 2 years since diagnosis with vascular dementia. Now, his speech is primarily word salad. Worse, his ability to interpret or comprehend what others say to him is very limited. There's so many more deficits I could mention, but the bottom line is I wish that I had been much more aware of the subtleties of the onset of dementia and sought medical help and advice much earlier.

harshedbuzz

Care4Mom2-

I am sorry for your need to be here again. 

It's really hard to say what you are seeing and reporting. That said, not being able to draw the clock is an ominous development.

The onset of dementia can be very insidious especially when you are the spouse living with the PWD day-to-day. In the early stages, it kind of felt like there were more good days with a few rougher ones which could make you question yourself. 

To answer your question, I saw early symptoms of a personality change/loss of social filter in my dad as early as 2005. They blew off my concerns. I saw glaring memory issues in 2008- short term, longer term and conflated memory. My mother blew off my concerns again. It wasn't until she nearly died with him as her advocate in March 2016 that she agreed in theory that it would be a good idea. He was given a preliminary diagnosis in the hospital in August which was confirmed in December 2016. 

My mom was clearly in denial and felt disloyal admitting dad had issues. She was also a bit like the frog in a pot of warm water set on to boil- she was too close to see things clearly. 

These are the stages of dementia-

Stages of Dementia Dr. Tam Cummings

The Global Deterioration Scale: the Reisberg Alzheimer's Stages (alzheimersdisease.net)

In your shoes, I would schedule another neurologist as it sounds as if things have progressed. If there is a university medical center with a memory center near you, that might be a good place for a second opinion. 

I would also make sure you have the necessary documents in place around POAs and do some Medicaid planning with a CELA if applicable. You'll want to name someone other than your DH to act on your behalf although you'll need to be discrete in making that happen.

National Elder Law Foundation (nelf.org)

The driving is a concern. Anyone who can't bring home 3 items from the grocery store with a list in hand is not going to be safe making the multitasking decisions required to drive safely. This is something to ask about when you have him re-evaluated. If the neurologist won't "go there" but he does get a diagnosis, ask you carrier's agent whether your insurance will cover him in the event of an accident with a dementia diagnosis in his medical record. Dad's insurance would not- one accident could risk everything my parents had worked all their lives for. 

I found this piece useful. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)


HB

Ed1937

Your very first job should be to have him stop driving. There is no question about that. It doesn't matter if he has an illness, if he has an accident (and he probably will), and someone gets hurt, you could lose everything you have. Look at the top of this page, and you will see "Solutions". Click on that for some pointers on different things, including taking the keys away from him. This will likely be a very hard thing for you to do, but you have no choice.

Here is an excellent link for you. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

My wife was diagnosed with probable vascular dementia. But I'm not sure that's right. I think it's likely alz. The first problems I noticed were short term memory loss. This was followed by problems with basic math. Today, after 4 years since being diagnosed, she sometimes does not know where the bathroom is. She also has issues with hygiene, although I get her in the shower a couple of times a week, maybe more. She has major problems finding words, and there are times I have no idea what she is trying to say. She is also double incontinent. She would never change clothes if I did not force the issue. But she is not aggressive, and does not wander. And she knows who everyone in the family are.

Ed1937

Sorry HB. I didn't know you posted the link. But I'll leave mine there just to reinforce what a good read it is.

Crushed

NO DRIVING   I don't care that he can drive in most situations.  The 13 year old who killed 9 people in Texas probably could drive in most situations  But wehn he could not he killed 9 people

I had to do the same thing for my wife.  

PlentyQuiet

For DH it started with not remembering conversations and word finding problems, but only occasionally.  More concerning to me was the inability to follow verbal multi-step instructions or make a decent plan for a work task. Written multi-step instructions were gone over and reread constantly, but still not quite followed. 

The full neuropsych eval did not show a "pattern consistent with Alzheimer's.  At the follow up with Neurology I had to speak bluntly ,with DH in the room, that something was wrong, that it was more than just short term memory, he was making bad decisions or unable to make decisions. 

We opted for the lumbar puncture to get some answers. The biomarkers were positive for AD, so we had the diagnosis of EOAD - dysexecutive variant.  This did make it very easy to get SSDI - one month from application to approval.

So many electronics are "broken" for him: computers, dishwashers, ipad. He just can't navigate them. I do not allow him to drive at night or to anywhere new. We have a follow up in May with Neuro and may seek an OT driving assessment at that time.  When he was diagnosed his MMSE score was 24 so he was cleared to drive 6 months ago, but things change. 

I totally understand the helicopter wife thing. I feel like observing DH for changes is my new hobby.

toolbeltexpert

Care4mom2 sounds like your dh has been progressing and all the others have touched on the places to try to figure out were your dh is in this not so fun of dementia in its many forms. Not very long ago I was asking the same things and still am trying to figure things out. I would really try to keep dh from driving, and I would make sure you have the necessary paperwork you will need. Dpoa, and financial stuff. A certified elder legal attorney can help with these types of things.  We are all here for each other. Lastly if you haven't  watched any Teepa Snow videos I highly recommend, she is a very competent teacher about caregiving strategies. Keep on posting.

Rescue mom

Every PWD loses different abilities at different times…with my DH, a couple of the first things I noticed was that although he had always been a voracious reader, he wasn’t reading books anymore. I though just not interested. Much later he said he couldn’t remember page to page.

He also did not pay bills. He’d say it just slipped by him, or he’d catch up later.  It eventually, of course, caused problems—and I finally got one bill that proved he did not “understand” a bill, at all. 

He lost cellphone/computer ability, I excused that because we got new devices that were just slightly different, and he didn’t use them much anyway.

He could not put clothes away, or hang them up. Piled them all on the floor. I thought he’s just tired, or getting sloppy (for the first time in 30 years).

And, since you mentioned it, folding….

The two things that brought it to a head happened within a week of each other: he got lost driving, to a very familiar, very nearby, place, with very bad consequences. (that’s when I found out he’d been involved in other driving incidents). The second thing: he took trash, old junk mail, greeting cards, to our CPA for tax prep. 

About the driving…two deadly wrecks have been in our news the last week or so, due to driver with dementia. As always, grieving family says it was just a short way, he’d done it before, he said he could, he said he needed to. Etc. I live in retirement area, so we see it a lot.

Lawyers will look for accident reports with elder drivers. Accidents with any hint of driver dementia can lead to lawsuits, and little sympathy for driving while impaired even dementia. And many/most insurances won’t cover in those circumstances.

The driving issues you mention are seriously dangerous, for him and others. And for you financially, even if he’s unhurt.

A PS about  randomness…it was 4 years ago things came to a head, getting lost and taxes. Other things noticed 1-2 years earlier. Now, he can do almost nothing without close supervision (at best).  It’s 50-50 at recognizing our kids faces (names long gone), doesn’t know grandkids at all. Cannot have conversation. But he can draw that dang clock perfectly, in about 5 seconds.

Gig Harbor

Your husband needs to stop driving today. It won’t be easy but attending a trial if he causes an accident in which someone is injured or killed would be much harder. Since he has a diagnosis of MCI any accident he is involved in would have a good chance of being deemed his fault. He sounds like he has definitely progressed beyond MCI. It is easy for us as spouses to get used to their behavior and not see how bad they really are. Sometimes I will read a description of someone’s spouse and think “wow that person is far along” and then realize that my husband is even worse. I am looking at memory care units for my husband. He gets out for a long walk each day but otherwise he is a prisoner in our home as I can’t trust him to be outside alone. We do go on drives but run out of places and he does not seem to enjoy them like he used to. In memory care he would at least have long hallways to walk, inner courtyards to visit and people and activities going on around him. I think he would forget our house very quickly. All of this has come about since last summer when he started getting lost on his walks.

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Care4Mom2

Thank you. 

The neurologist we went to said she could not diagnose dementia unless my DH had more extensive testing. He is refusing to do that because he does not want to be told, based on some psychological tests, that he cannot drive anymore. He sees that as taking away his independence. But, I have read on this site, that with early Alzheimer’s, the person may still be able to drive. 

I know of someone whose doctor said he couldn’t drive anymore because he could not remember 5 things he was asked to remember. That person appealed the decision and his license was reinstated. At each of our 3 visits to the neurologist, my husband was never able to remember the 5 words.  But, the neurologist never said he can’t drive, though she did ask how his driving was. It told her what I have seen.

We really did not care for the neurologist we we seeing. She gave him the same standard test each time. Even if he scored lower, she could only say he had MCI. So, what’s the point? But, since we are moving soon, we will look for a new neurologist once we get settled. 

I did suggest to my DH that we sell his car before we move, and just use one car. I figure that might be a good way to wean him off of driving…. He thinks I would not like having one car. I think it would be easier for me to convince him not to drive if he was older. He is only 73. (I am 65.) His friend tried to talk to him about driving concerns. My husband wouldn’t even listen to him.

I had been driving most places. But, I figured I should let him drive more often with me in the car so that I can see if there is a problem.

We do have all of our legal papers in order. 

I did tell my DH that our internist said he probably has Alzheimer’s. He only, “I know something isn’t right.”

Having seen my mother decline with probable vascular dementia, I know what may be in store, though vascular can be different. Regardless, I am not looking forward to it. Mom was 95. I watched her decline rapidly. It took about 1-1/2 years. My husband’s issues may last longer.

Gig Harbor

Doctors seem very reluctant to tell a patient that they are no longer safe to drive so it usually falls to the family member to make the decision. Driving is not a right - it is a privilege. When the person can no longer make safe and responsible decisions while driving the privilege gets taken away. It is such a hard thing to do but you may be saving lives by keeping him off the roads.

JoseyWales

Here are my 2 stories: 7 years ago both DH and my dad were having memory issues. I was super concerned about DH, because he was only around 50. My mom was super concerned about my dad - he was around 70. She'd tell me stories that were eerily similar to what my DH was going through.

DH's earliest symptoms were with numbers, mainly dates and times. He also relied A LOT on his GPS. To the point that he drove onto train tracks once because he didn't realize the road was right after the tracks.

My dad had general memory concerns, couldn't recall what to buy at the store, making mistakes banking, etc. My mom was super concerned, but my dad refused to go to the doctor.

Today DH is in memory care. I'm not sure he knows who I am.

My dad continues on, at age 78, with some more memory issues but nothing that would cause me to demand he see a neurologist yet. This winter he's the one that took care of calling someone to plow snow to clear my driveway and is finding me someone to cut down two trees in my yard. His memory issues are pretty similar to what they were 7 years ago. 

My take away: There's no way to tell what's going on.

toolbeltexpert

harshedbuzz wrote:

I found this piece useful. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)


HB


HB I read about half of the above piece so far, and I found it eye opening. Thanks 

toolbeltexpert

ED I never got to your post about that link because it took me to the page. it is very good.

Care4Mom2

HB, Thank you for the links. I started to read the 12 Pt to understanding dementia. It is so far very good. I was a little freaked out by it, though… One was when it talked about the person with “insight” going to the store to buy three things and only getting one, which is exactly what my DH did. A second thing was that they used my husband’s and my names in an example… What are the chances?? Freaky….