WTDW you suspect cognitive decline?

January 23, 2024 11:18 AM

I suspect my husband is showing symptoms of Alzheimer's/senility/whatever you call this sort of thing. I know nothing, and nothing about the process to get it diagnosed, which I'm assuming is the first step. Have you been through this? How did you start the process?

I did have a screaming fight with my husband about a whole bunch of things but the punch line, for lack of a better term, was me saying to him, "I think you need a cognitive assessment!" He basically didn't respond to that.

That was at the end of a single day where husband: opened up a pill bottle, took out some pills, then forgot about it and left the pills & bottle sitting there; unplugged an electric toothbrush for basically no reason whatsoever; wrote gibberish in a paper calendar; took above 30 seconds to tie his bathrobe closed; somehow managed to fall down (I didn't see it happen so I'm not sure how). Separately, these are all tiny. Together, they paint a picture that I'd been kinda refusing to acknowledge for a while. However I'll acknowledge that he seems fine on the surface, and can totally have conversations with people who would not notice any kind of difference. He's also super charming, and maintains that charm.

He has a doctor, but not the kind of person who I can, say, call and randomly chat with. I'm guessing because of HIPAA they might not even talk to me anyway. We do have good insurance.

If you've been through something like this, I'd like to know the first steps you took and what happened as the process unfolded.

posted by anonymous to Health & Fitness (26 answers total)

There are a lot of things that can cause those symptoms, and some are definitely fixable. A close relative was diagnosed with hydrocephalus last year and had a shunt put in, and although it has taken a while, it cleared up probably 95% of the kinds of symptoms you're seeing. Go to the regular doctor first. The doctor should do blood tests, check for a UTI, and stuff like that. If that checks out fine, get a referral to a neurologist. They will probably do an MRI, and then you'll go from there.
posted by jonathanhughes at 11:26 AM on January 23, 2024 [17 favorites]

Well, in my marriage I would be gently and lovingly (and probably tearfully) expressing my concerns in a sort of "intervention" style sit-down, and then going with him to his doctor. Not sure how you got into a screaming fight?? But if he's experiencing confusion the last thing he needs is his spouse screaming at him.
posted by amaire at 11:28 AM on January 23, 2024 [16 favorites]

If you’re in the United States, call the nearest chapter of the Alzheimer’s Association. They’ll know what resources exist nearby for cognitive screening. It is often true that people are changing cognitively long before common clinical assessments can pick it up, and it’s very possible that someone who IS changing a little bit will test perfectly normally on those less sensitive tests. But then you’ll know he’s not impaired enough for it to be clinically meaningful, and you will also have obtained a baseline, which can help down the line.

On a personal note, I’ve seen a startling degree of cognitive impairment be due to reversible causes as mundane as dehydration. As best you can, try not to let fear or frustration with these lapses affect your care for him, because if he is changing, this will only make it harder to address. Easier said than done, I know.
posted by eirias at 11:34 AM on January 23, 2024 [15 favorites]

If your insurance has a 24-hour nurse line, call it, or call his doctor's office.

Many health issues can mimic dementia (urinary tract or other infections, medication side effects, dehydration, sleep deprivation, cardiac dysfunction, thyroid disorders, B12 deficiency, and so on). Generally the first step is the primary-care doctor's visit, a.s.a.p., and you're at the appointment with the list of odd things you've noticed. They'll run tests and refer out if necessary. But the fall is concerning -- you weren't present, so you can't be sure he didn't hit his head.
posted by Iris Gambol at 12:00 PM on January 23, 2024 [8 favorites]

One thing that might be useful is talking about how things like urinary tract infections and the like can cause short term symptoms like this and using that as a way for him to go to the doctor and talk about the symptoms. That workup can start the longer conversation with his providers if there isn't a UTI
posted by advicepig at 12:02 PM on January 23, 2024 [3 favorites]

If you have access to Teladoc through your insurance, you can talk to someone online pretty quickly. They'll generally do a triage kind of thing and ask a lot of questions, and set up labs and referrals. And also make an appointment with the primary care doc who will do the same thing but likely be better at navigating the local system.

They may refer him to a psychiatrist, but you need his buy-in for that -- and like others are saying, there are plenty of interacting systems which affect the brain. Probably most important is to get his cooperation. Get him to make a short checklist of things which he wants to tell the doctor, so when they meet he doesn't just make jokes and claim everything's fine (all too common with my relative...)
posted by credulous at 12:23 PM on January 23, 2024

These events all happened in one day? How long have you been noticing it for? Has it been a slow realisation or something you've suddenly started seeing over the last few days/weeks?

IANAD but I would be more concerned about something that seems to be impacting him so strongly so quickly. Going from (possible) normal to falling down/writing gibberish/cognitive difficulty all in one day is giving me alarm bells for some more serious and time sensitive things. If I were you I would get him to a doctor ASAP, if not to the emergency room, especially for that unexplained fall (did the calendar/pills etc happen before or after the fall? Is it possible he hit his head?).
posted by fight or flight at 12:43 PM on January 23, 2024 [10 favorites]

Have a heart-to-heart with him about this - and be concerned but not too frightened and not annoyed - and get his consent, even if begrudging, to make a doctor appointment. Go together. Write out your observations and concerns and questions. Go in with your husband, present your concerns, and then offer to step out of the room for a few minutes for them to talk privately, but generally the doctor's going to be like "do you want them to leave?" and if he says no, he wants you there, you don't have to leave.

HIPAA largely controls how information is communicated, the privacy laws and regulations and standards are spread out across various legal acts and guidelines. You are allowed to tell the doctor anything you want, but as they'll probably charge a separate visit fee for you to do this, y'all might as well go in together.

But yeah, if your examples are all from this week and not you saying "I suppose this has been getting worse over time but I hadn't really made note of it", go to the emergency room. That's an abrupt change in competence.
posted by Lyn Never at 12:52 PM on January 23, 2024 [9 favorites]

If you need an anecdote to help move the process along: My Dad died from a brain tumor. He was losing track of time occasionally, and thought it was just a symptom of getting older. If he'd sought help for it earlier he'd likely have made it to see at least one of the grandkids graduate high school, but by the time it was caught a protracted uncomfortable death was the only outcome left.

As Lyn Never suggests, schedule a joint visit ASAP.
posted by straw at 1:04 PM on January 23, 2024 [3 favorites]

I concur that those things don't seem all that tiny, particularly "writing gibberish." He needs to see a doctor pronto. Take the calendar with the gibberish along, if you still have it, and write up everything else you've noticed while it's still fresh in your mind.
posted by Don Pepino at 1:33 PM on January 23, 2024 [11 favorites]

Chiming in on "doctor ASAP" - we wrote off similar symptoms as "just getting old" in a relative and it was crawling encephalitis that eventually took him before his time.
posted by I claim sanctuary at 1:42 PM on January 23, 2024 [2 favorites]

Get him seen - urgently if these symptoms came on in a hurry. The phrase you are looking for is a neuropsych assessment. His regular doctor can do the initial one while looking for other causes as mentioned above. Bloodwork, urine sample. Next step after that if those don't point to something obvious will be a full on neurological assessment and MRI. Good luck - I hope it's something medical and treatable.
posted by leslies at 2:03 PM on January 23, 2024 [3 favorites]

Just chiming in to suggest also checking that your carbon monoxide detectors are working properly, because the stuff you're describing would make me want to rule out CO poisoning as well as dementia.
posted by aecorwin at 2:31 PM on January 23, 2024 [4 favorites]

Echoing the question of whether it was one day, or if this is something that has been ongoing. You are anon, so you can't respond, but here's something that might or might not help. This is highly personal, so take it for what it's worth.

I (Male, 56) had pretty much that day several months ago. I didn't have the fall, but everything else could easily have happened. I knew it was happening, and so did my wife. I was unable to make memories, unable to understand what had just happened or what was happening, repeating myself, forgetting what was going on, I kept looking at the crossword puzzle (which I do every day) and seeing that it was filled in, but I couldn't remember doing it. I sounded and acted normal, but my brain was completely scrambled. I was terrified and so was my wife, but neither of us wanted the other to know it.

I have a seizure disorder, and we both assumed it was some kind of seizure. I wanted to wait it out, but she gently but firmly told me we could either call my GP or she could take me to the emergency room. In the end we called my GP who diagnosed it (over the phone) as Transient Global Amnesia which is super weird and terrifying, but unrelated to my seizure disorder and not a stroke or sign of dementia. Later follow-ups with my neurologist appear to have confirmed that, as best it can be confirmed.

Anyway: the answer for our marriage was for my wife to take very good care of me and understand that I was terrified during that day, but not let me get away with my usual behavior of avoiding the issue and pretending nothing was wrong. YMMV. Hell, YM will almost certain V, but telling your husband that you're worried and would like to talk to the GP together worked for me and there's a lot of stuff out there that is scary, but isn't necessarily a disaster. Brains are weird.
posted by The Bellman at 2:35 PM on January 23, 2024 [11 favorites]

You can just call the consulting nurse line and describe your observations - they will get him into the doc immediately who will likely refer him on. You have to be at these appointments also. Good luck.
posted by tristeza at 3:28 PM on January 23, 2024

This sort of decline happened to someone I know and many of the symptoms lessened when his wife took him and all his medications to his doctor and they discovered how many of the drugs weren't supposed to be taken together.
posted by The corpse in the library at 4:12 PM on January 23, 2024 [10 favorites]

Well, in my marriage I would be gently and lovingly...Not sure how you got into a screaming fight?? But if he's experiencing confusion the last thing he needs is his spouse screaming at him.

I want to encourage you to not beat yourself up if any of the comments make you feel shame for your reaction to the situation. I'm sure we'd all like to think we'd respond gently, calmly, and kindly to our loved ones having these troubles, but fear is a complete mind-f@$& and feeling bad about your past reaction won't help future you or spouse.
posted by donnagirl at 4:27 PM on January 23, 2024 [37 favorites]

I have told my husband he needed to see the doctor, dialled the phone for him, and handed him the phone to start talking when the receptionist picked up. His words were “I didn’t think this was important but my wife said I had to come”. This bumped him up the acuity list. Do what you have to do to get him seen. If he won’t let you attend the appointment provide a letter.
posted by shock muppet at 4:40 PM on January 23, 2024 [4 favorites]

The Alzheimer's Association 24/7 Helpline is 800-272-3900. You can read about symptoms of Alzheimer's disease at alz.org/10signs.

Changes in functioning like this can be a lot of different things, including treatable and curable things, so a thorough medical assessment is important, but the Alzheimer's Association can give you tips on how to encourage him to actually go through with an appointment.
posted by assenav at 4:41 PM on January 23, 2024 [2 favorites]

Could you convince him that at his age, one is supposed to get immediate medical attention for a fall? That would at least get him seen and they will likely ask him about the circumstances of the fall, at which point you can say “he’s been a little unlike his normal self because of example xyz, and then he fell.”
posted by kapers at 5:10 PM on January 23, 2024 [2 favorites]

Agree that the fall is the way to go re getting him to go in. Falls destroy old people. Please get him to the doctor. The weirdness and then the fall, or was it the other way, suggest something medical going on. Also, there certainly could be cognitive functioning loss as well, but get the medical diagnoses figured out first, as they are easier.

Good luck
posted by Windopaene at 6:20 PM on January 23, 2024

This must be so tough. Your husband might be resistant to seeing medical professionals. As people above have stated, it is good to document and keep a diary and phone pictures of the odd things you have noticed (writing gibberish, electric toothbrush, etc.). The struggle is getting him to see a medical professional and getting an assessment or next steps. I would prepare for this with gentle nudges. One nudge is to ask for a medical assessment as a birthday or anniversary gift - you can frame it as you would like to grow old together and it is out of love. In my experience, older men tend to set their personal opinions aside when providing something tangible like a gift to their wife. It would help if you also received a cognitive assessment as well so he feels better knowing what to expect and as another nudge. The diary is to show to medical professionals in case things get much worse.
posted by ichimunki at 8:04 AM on January 24, 2024

As someone with medical anxiety and a history of dementia in the family, I would reiterate that taking the tack of "let's get you checked out since it could be something easily fixable like a UTI or dehydration" would make me much more likely to go in.
posted by advicepig at 11:34 AM on January 24, 2024 [3 favorites]

Before you do any of the above, each of you be certain that the other one is legally given written permission to access each other's medical records. If you don't have medical Power of Attorneys on each other, do that too. Anything that he might not be able to do in the future - like reasonably put together a will, Powers of Attorney, Medical preferences - should be done asap.
posted by summerstorm at 5:20 PM on January 24, 2024 [3 favorites]

Maybe it has a purely physiological cause. A delirium can be caused by a UTI for instance.
posted by jouke at 2:58 AM on January 25, 2024

1) Ask around friends and (if he is still working) co-workers to see if they've noticed odd behaviors. With the cases of dementia within our family and friends, we learned things had been going on buit no one was mentioning them, and in the co-worker case they were covering for the person so she wouldn't be let go and lose insurance until eligible for Medicare.

2) Definitely have him checked after the fall - not only can falls be bad for older bones, but they can cause traumatic brain injury (TBI) which also can cause cognition issues

3) HIPAA should not be an issue if you're his spouse but be sure to have a Health Surrogate form filled out for medical purposes

4) In the meantime, these Dementia Do's and Don'ts are very useful. I can't find the wallet-sized version I used to print but these are good tips
posted by TimHare at 8:04 PM on January 25, 2024