Dementia? Cumulative effect of major and minor head injuries?

[dsmith]

I feel like mil is a bit off the last few weeks. Part of this is from her hearing - it has really worsened recently, so when she repeats what she thinks we said to her to clarify it is often not even close. (Which can be hilarious at times!) But tonight she came up to me because she can't remember how to see the channel guide. Except she was holding her phone out to me. I was confused, so I asked her if she was looking up somewhere on line what was on tv, which would have been kind of shocking for her to even try to do, lol. But she thought she normally checked what was on tv on her phone, instead of the actual tv. When I mentioned I'd never seen her check what is on tv on her phone, only on the channel guide on the television, she looked confused for a moment and then looked shocked and upset, obviously realizing how bizarre this was. A few minor things like this have happened recently, but this is the most striking one. She has had a few minor falls within the last few months with slight bumps to the head, and has been perfectly fine after them, but maybe there is a cumulative effect that could be causing this? She suffered a major fall a few years ago with a few brain bleeds, concussion, broken neck, and was completely loopy in the hospital and rehab, and then normal once she got home. What actions would anyone recommend? MRI? Neurologist? Dementia screening? She absolutely needs hearing aids, but money is very tight and I don't know that she would wear them, and she will definitely lose them or step on them, etc. 

[Starr]

I would make an appointment with her regular doctor and get an appointment asap. One thing that throws people off is a urine infection. They don't feel it and the only signs can be confusion. They can do a work up and refer to specialists if needed.

[gardenmom5]

Write down everything.   She needs to be checked. 

[Harriet Vane]

It could be anything from early dementia to bladder infection. One possibility to also keep in mind is that her fall could have been the catalyst for Lewy body dementia, which has a faster progression and often is triggered by a traumatic event like a surgery or an accident of some sort. Hearing loss is also a major red flag for eventual dementia (really any sensory deprivation is).

Her regular doctor can check for bladder infection. Whether or not it's only that or exacerbating dementia, it's well worth treating and can bring improvement. 

I have dealt with multiple family members with dementia (Alzheimers, Lewy body, and brain tumor). Whether my own family/relatives or those of friends. I've seen that many people postpone neurological evaluations because "we're not there yet" or pursuing every other avenue and holding that one out as a last resort. However, it's a common enough issue for older people that I think it's well worth evaluating, especially in the presence of concerning symptoms.

Find a neurologist who specializes in geriatric care and have a full workup done. Then do it again periodically as you see changes happening. That doctor can then also prescribe appropriately, whether drug therapies that delay dementia or those that help with some of the more distressing symptoms when they arise. It's essential to have this type of doctor in place well before the dementia gets serious so that you have quick access to medications as the disease progresses. 

[Spryte]

Yes, I would head to the GP for a visit. Actually two visits. I’d want a sick visit asap to check for a UTI, and a longer visit to discuss the issues if there is no UTI.

Also, since it’s Saturday, and these things always seem to happen on a weekend — don’t hesitate to take her to urgent care if things get worse (confusion, etc — UTI is what you’d want to rule out right away).

But if it’s not a UTI, yes — get in to talk about it right away. 

Loss of hearing is linked to dementia, I think, and it’s important to get those hearing aids. Maybe talk to the doc about that, too? I don’t know if Medicare covers them, but I vaguely recall that there are some options out there that are covered. It’s worth checking.

[dsmith]

Thanks everyone. I had her do one of the home tests for UTIs yesterday. I keep them on hand for myself and have found them to be pretty accurate. It came out clear, but we could double check at an urgent care tomorrow or do a home visit through the local hospital. She sees her regular doctor next week. I think I will give the office a call and let them know what's going on. She hasn't seen a neurologist since her major fall, so a visit there is probably in order. I also found a program in our state that will reimburse $500 per hearing aid, so I will put in an application on Monday. From what I'm seeing Medicare won't cover any of it. She has a property tax rebate coming that she could use to cover some of the cost and we could probably manage to contribute $500 if needed. I'm sure her brother will contribute as well. 

[katilac]

She definitely needs good hearing aids. I hope she qualifies for the program, but I know my dh's hearing aids are muy expensive and that would be a small percentage of cost, so be prepared for that if you aren't already. 

If she has trouble hearing in person, it's probably awful on the phone. If she still has a landline, look into a ClearCaptions phone (there's also an app, but the landline version is better and of course bigger). 

It is worth going to an audiologist and not saving the money at Costco or whatever. My dh has his adjusted frequently. 

In addition to helping her not be cut off from conversation and the world around her, untreated hearing loss is associated with both cognitive decline and dementia. 

I do not think that the added frustration and confusion from hearing loss can be overestimated. My dh has a lot of trouble in group conversations and such, even with the good hearing aids. He always jokes that he's going to wind up wearing a pirate shirt (Seinfeld).

All the other things, yes, but don't delay the hearing aids. If she has to put them on a credit card, it's worth it. 

My husband has a charging case for his, so they have a home. Why yes, he does still occasionally set them down randomly, lol, but having a home for them helps a great deal. In your m-i-l's case, it might help to keep the case on a small table near an outlet, that nothing else goes on, and that is clearly marked "hearing aids." 

Why do you think she wouldn't wear them? Is she just stubborn about that type of thing in general? That's tough, but talking to an audiologist might help with that. 

 

[Tenaj]

14 hours ago, dsmith said:

Thanks everyone. I had her do one of the home tests for UTIs yesterday. I keep them on hand for myself and have found them to be pretty accurate. It came out clear, but we could double check at an urgent care tomorrow or do a home visit through the local hospital. She sees her regular doctor next week. I think I will give the office a call and let them know what's going on. She hasn't seen a neurologist since her major fall, so a visit there is probably in order. I also found a program in our state that will reimburse $500 per hearing aid, so I will put in an application on Monday. From what I'm seeing Medicare won't cover any of it. She has a property tax rebate coming that she could use to cover some of the cost and we could probably manage to contribute $500 if needed. I'm sure her brother will contribute as well. 

Just be prepared to advocate on her behalf if her regular doctor dismisses any concern.  My aunt was having very similar issues.  My aunt first exhibited systems of dementia about three years ago and when we visited her regular Dr.  my concerns were dismissed because aunt could answer the lame questions they asked the month, the year, her birthday (we had just filled out paperwork so all of that was fresh in her mind).  The "memory" test of three items she passed because the Dr. fed her the answers.  It made me furious because the Dr chose to smirk at me about there being no issue.  So our attempts to get help didn't go far in that direction and it really still makes me mad and sad.

We ended up getting her into a memory clinic without referral which was possible in a different state.    First diagnosis was low B12 and supplements did help for a while but now she is deteriorating again and back to the memory clinic for more testing .  She has daily help now, I am writing all checks, I or her helper schedules all appointments.  

Your story about cell phone vs tv remote is eerily similar to my aunt's story.  Confusion about cell phones, home phones, iPads and tv remotes was our first sign that something was wrong.  

[Spryte]

How is she today, OP?

 

[Harriet Vane]

52 minutes ago, Tenaj said:

Just be prepared to advocate on her behalf if her regular doctor dismisses any concern.  My aunt was having very similar issues.  My aunt first exhibited systems of dementia about three years ago and when we visited her regular Dr.  my concerns were dismissed because aunt could answer the lame questions they asked the month, the year, her birthday (we had just filled out paperwork so all of that was fresh in her mind).  The "memory" test of three items she passed because the Dr. fed her the answers.  It made me furious because the Dr chose to smirk at me about there being no issue.  So our attempts to get help didn't go far in that direction and it really still makes me mad and sad.

We ended up getting her into a memory clinic without referral which was possible in a different state.    First diagnosis was low B12 and supplements did help for a while but now she is deteriorating again and back to the memory clinic for more testing .  She has daily help now, I am writing all checks, I or her helper schedules all appointments.  

Your story about cell phone vs tv remote is eerily similar to my aunt's story.  Confusion about cell phones, home phones, iPads and tv remotes was our first sign that something was wrong.  

Agreeing about advocating at the doctor's office. 

OP--the dementia tests that most regular doctors use in the office are useless. I am serious--they are useless. Hence my earlier recommendation for a neuro evaluation.

[J-rap]

If this happened relatively suddenly, I'd be wondering about a mini-stroke.  My mother changed from a very intelligent woman to someone with something like mild-dementia in just a couple weeks' time.  It turns out she'd had a mini-stroke.  

[klmama]

6 hours ago, Harriet Vane said:

Agreeing about advocating at the doctor's office. 

OP--the dementia tests that most regular doctors use in the office are useless. I am serious--they are useless. Hence my earlier recommendation for a neuro evaluation.

Yes, although they can also show the patient is worse if they aren't administered correctly.  An elderly relative tested very poorly on a recent test; her dc, who was with her at the appointment, looked up the test online afterward and discovered the nurse hadn't followed the directions in administering the test. 

[Harriet Vane]

25 minutes ago, klmama said:

Yes, although they can also show the patient is worse if they aren't administered correctly.  An elderly relative tested very poorly on a recent test; her dc, who was with her at the appointment, looked up the test online afterward and discovered the nurse hadn't followed the directions in administering the test. 

This is also true. Which is why it's so important to have a clinician who specializes in geriatric care and why an actual neurologist is so much better than the family doctor.

 

I find it incredibly frustrating that the standard office tests for regular doctors are sooooo bad, and so often the lived experience of the loved ones trying to help the person with dementia are not taken into account at all. It was an absolute nightmare getting anyone in the system to recognize my grandmother's dementia and my mother-in-law's dementia, and until a doctor would give that diagnosis, there were many in the family who fiercely denied that there was any dementia issue at all. Meanwhile both were still driving and they were not getting appropriate treatment and no one was making any plans for long term care, which resulted in one big awful crisis after another. It was an absolute train wreck for both of these beloved women, and it really, actually didn't have to be that way. 

[katilac]

55 minutes ago, klmama said:

Yes, although they can also show the patient is worse if they aren't administered correctly.  An elderly relative tested very poorly on a recent test; her dc, who was with her at the appointment, looked up the test online afterward and discovered the nurse hadn't followed the directions in administering the test. 

When my dad was first recovering from his stroke, the nurse or whomever kept acting like he was giving the wrong answer to the question, where are you? She wanted to hear hospital, he answered first with our state, then with the correct city (which is not the city he lives in). You seriously cannot grasp that he is telling you, accurately, where he is when he gives a city and state? You're going to act like that's a bizarre response? And she kept repeating where, as though a geographic response did not make sense in relation to where. I broke the rules and interjected, she means what kind of building, and he was like, oh, hospital, with much rolling of his eyes. And I will say that I was initially puzzled as well as to why she was acting like his answers were wrong, I wasn't thinking hospital either. 

It made me so mad, for two reasons: one, she acted so baffled that someone would answer "New York City" in response to where are you? that I think she gave him a moment of panic, thinking that maybe he really was not understanding the question; and two, what if he had been on his own? She would have been making in accurate notes in his chart, which can have wildly bad consequences for someone recovering from a stroke. 

[klmama]

3 hours ago, Harriet Vane said:

This is also true. Which is why it's so important to have a clinician who specializes in geriatric care and why an actual neurologist is so much better than the family doctor.

Yep. Unfortunately, since Covid the wait has grown.  The last time my relative made an appointment with a neurologist, she was seen within a month. This time she has to wait almost 6 months.

[ktgrok]

Does she have any kind of amplification system in the meantime, while working on getting hearing aids?  They don't work as well, but might help some?

[ktgrok]

ooh, found this that might be helpful https://www.ncoa.org/adviser/hearing-aids/best-affordable-hearing-aids/

They won't be as good as professionally adjusted ones, but even something like the Audien Atom, which are $99 a pair, will amplify human speech and decrease background noise. I'm tempted to try them myself. 

Edited March 6, 2023 by ktgrok

[eagleynne]

Does she have original Medicare or an advantage plan? Original Medicare doesn't cover hearing aids, but many advantage plans do.

[Kidlit]

My mother recently got hearing aids at Sam's Club.  They weren't cheap, but I do think they were less expensive than ones purchased at a standalone audiology place.   She has been pleased with hers, and she is now able to hear her grandchildren. That's a glowing recommendation. 

[dsmith]

On 3/5/2023 at 2:45 AM, katilac said:

 

Why do you think she wouldn't wear them? Is she just stubborn about that type of thing in general? That's tough, but talking to an audiologist might help with that. 

 

She initially wouldn't wear them because she doesn't want people to know she's wearing them. Now that they are smaller she seems more interested, and when I spoke to her last night she was very open to the idea, so that's a big change in her attitude! 

[dsmith]

23 hours ago, Tenaj said:

Just be prepared to advocate on her behalf if her regular doctor dismisses any concern.  My aunt was having very similar issues.  My aunt first exhibited systems of dementia about three years ago and when we visited her regular Dr.  my concerns were dismissed because aunt could answer the lame questions they asked the month, the year, her birthday (we had just filled out paperwork so all of that was fresh in her mind).  The "memory" test of three items she passed because the Dr. fed her the answers.  It made me furious because the Dr chose to smirk at me about there being no issue.  So our attempts to get help didn't go far in that direction and it really still makes me mad and sad.

We ended up getting her into a memory clinic without referral which was possible in a different state.    First diagnosis was low B12 and supplements did help for a while but now she is deteriorating again and back to the memory clinic for more testing .  She has daily help now, I am writing all checks, I or her helper schedules all appointments.  

Your story about cell phone vs tv remote is eerily similar to my aunt's story.  Confusion about cell phones, home phones, iPads and tv remotes was our first sign that something was wrong.  

Her current doctor's specialty is gerontologist. We kind of forced the switch to this doctor after her big fall. She was so overmedicated that the gerontologist at the hospital was in absolute shock. And not just regarding pain killers and They drastically cut her meds, which was an unbelievable improvement in her day to day life. We never realized how bad it was until we took over her care. We expect her doctor to be very proactive. 

[dsmith]

14 hours ago, katilac said:

When my dad was first recovering from his stroke, the nurse or whomever kept acting like he was giving the wrong answer to the question, where are you? She wanted to hear hospital, he answered first with our state, then with the correct city (which is not the city he lives in). You seriously cannot grasp that he is telling you, accurately, where he is when he gives a city and state? You're going to act like that's a bizarre response? And she kept repeating where, as though a geographic response did not make sense in relation to where. I broke the rules and interjected, she means what kind of building, and he was like, oh, hospital, with much rolling of his eyes. And I will say that I was initially puzzled as well as to why she was acting like his answers were wrong, I wasn't thinking hospital either. 

It made me so mad, for two reasons: one, she acted so baffled that someone would answer "New York City" in response to where are you? that I think she gave him a moment of panic, thinking that maybe he really was not understanding the question; and two, what if he had been on his own? She would have been making in accurate notes in his chart, which can have wildly bad consequences for someone recovering from a stroke. 

I had a similar situation with our elderly neighbor. And she was looking at me in total disbelief that he couldn't answer a simple question, mouth just about hanging open, which I thought was extremely rude and disrespectful. I explained it in a better way, and he answered immediately. I don't think very much of these tests!

[dsmith]

22 hours ago, Spryte said:

How is she today, OP?

 

She's been completely fine since the incident. And the previous less concerning incidents were the same - isolated and completely fine after. She realizes that the incidents happened and looks obviously upset after she realizes. 

[dsmith]

19 hours ago, J-rap said:

If this happened relatively suddenly, I'd be wondering about a mini-stroke.  My mother changed from a very intelligent woman to someone with something like mild-dementia in just a couple weeks' time.  It turns out she'd had a mini-stroke.  

That thought did cross my mind. I've seen TIAs in other people which were a lot more obvious, but I'm no neurologist. I really would like for her to be seen by her neurologist. It's been quite a while.

[dsmith]

6 hours ago, eagleynne said:

Does she have original Medicare or an advantage plan? Original Medicare doesn't cover hearing aids, but many advantage plans do.

She does have an advantage plan, I'll have to check her coverage, thanks!

[Spryte]

8 minutes ago, dsmith said:

She's been completely fine since the incident. And the previous less concerning incidents were the same - isolated and completely fine after. She realizes that the incidents happened and looks obviously upset after she realizes. 

That makes it seem less likely that it’s a UTI, and sounds a lot like the beginnings of dementia (my mother’s and MIL’s, at any rate). Are these episodes more common in the evening? Sundowning is real, and can be disconcerting when you are the one caring for her.

The 36 Hour Day is a good book, if you need a dementia resource.

[J-rap]

10 minutes ago, dsmith said:

That thought did cross my mind. I've seen TIAs in other people which were a lot more obvious, but I'm no neurologist. I really would like for her to be seen by her neurologist. It's been quite a while.

With my mother, it was very subtle (not obvious to everyone), but those of us closest to her picked up on it right away.  

[dsmith]

1 hour ago, Spryte said:

That makes it seem less likely that it’s a UTI, and sounds a lot like the beginnings of dementia (my mother’s and MIL’s, at any rate). Are these episodes more common in the evening? Sundowning is real, and can be disconcerting when you are the one caring for her.

The 36 Hour Day is a good book, if you need a dementia resource.

I'd like to say yes, in the evening. I have witnessed sundowning with her and our neighbor, both when they were in rehab or in the hospital. It was quite a bit more noticeable then. Dh hasn't noticed it at all, but he doesn't pick up on many things, lol. He wasn't too concerned until this last episode, thinking the smaller episodes were due to stress.

[dsmith]

1 hour ago, J-rap said:

With my mother, it was very subtle (not obvious to everyone), but those of us closest to her picked up on it right away.  

I'm the only one who has witnessed these events and changes. I wish others would see it! I'd like to say I see a gait change also, which worries me. Her mother had Parkinson's. But she also has back and hip issues.

[ktgrok]

2 hours ago, dsmith said:

She initially wouldn't wear them because she doesn't want people to know she's wearing them. Now that they are smaller she seems more interested, and when I spoke to her last night she was very open to the idea, so that's a big change in her attitude! 

see, I figure there are so many people wearing ear buds, and blue tooth devices, etc that having something in or on your ear isn't an "old person' thing anymore. Tell her she'd look like the young people with their earbuds in all the time!

I was excited to see that some have bluetooth abilities too. 

[J-rap]

3 hours ago, dsmith said:

I'm the only one who has witnessed these events and changes. I wish others would see it! I'd like to say I see a gait change also, which worries me. Her mother had Parkinson's. But she also has back and hip issues.

Well in our situation, I was actually the only one who thought it could be as serious as a stroke.  She didn't have typical or obvious stroke symptoms at all.  (And to be fair, her own sister didn't pick up on anything wrong!)  With my mother, her main noticeable issue was that she suddenly didn't seem to know how to use her iPad and iPhone easily -- she was kind of the tech queen in our family before then!  She also suddenly couldn't seem to keep track of time very well.  But her conversations were still mostly normal.  She was a little quieter.  I hope you can get her in to be checked.