Would a 2013 mini-stroke (misdiagnosed as another medical problem) explain these Dementia symptoms?
Symptoms with start dates below. Some dates are guesses because I only began paying attention to dementia / younger onset Alzheimer's symptoms this year (2023). PWD is 64 years old.
2024 June: A family friend noticed the PWD has hand tremors.
2024 June: Think I've confirmed in my mind that the PWD actually has dementia (and not just symptoms from Lyme or hypertension meds). PWD is experiencing chewing / swallowing difficulties more often.
2024 May: Noticed the PWD cannot discern differences in blue-green spectrum. Have also pretty much confirmed the PWD goes in and out of a delusional state throughout the day (I may have noted something similar below).
2024 April: Think the PWD may be saying nonsensical things now. Not 100% sure. But I asked the PWD to repeat three times in the foreign language we spoke yesterday and I had no idea what was said. My skills are normally good enough to understand the foreign language.
2024: Judgement in general is becoming an issue. I may start a list. PWD put too much sugar in a grandchild yesterday and we got chewed out by a parent.
2023: Difficulty judging distances. Think I stopped the PWD from jumping in front of cars coming from two directions recently. The look on the PWD's face indicated they were going to try to cross a street until I put my hands on them and said, "Don't."
2023: Hand wringing.
2022: Loud rummaging.
2022: Difficulty with daily home tasks.
2020: Hoarding.
2018: Social withdrawal. The PWD has become unfriendly with 23 family and friends so far.
2018: Planning challenges. PWD used to do all of it for our travel. Now I do it.
2018: The PWD is 64 years old and is sometimes confused about where they are at in a city they grew up in (population 70,000). They get lost in a place they know very well.
2018: Vision changes. The PWD used to have eagle eyes. I'm not a psychologist, but I think this is the only symptom that could possibly be attributed to simple old age.
2017: Aggressive verbal attacks on spouse. I lock myself in various rooms to avoid the PWD, to include home office and bedroom for both naps and at night. Note: I recently realized these attacks are delusional; literally every single verbal point the PWD makes is not true.
2017: Forgetfulness in the form of strange things appearing / happening in the house. Objects show up in odd places, for example. PWD claims they have no knowledge of the appearance of the objects, nor the strange occurrences. Our house is secure, and I had nothing to do with the occurrences. I suspect the PWD is rummaging while sundowning after I go to bed. Only way to confirm or deny will be to start staying up later.
2017: Uses cliches to communicate, especially when agitated.
2013: The PWD is confused about year dates and does not realize they are confused when discussed. I did not connect the dots on this one until this year (2023). I thought the PWD was a congenital liar until I figured it out. This was the symptom that caused me to research Alzheimer's.
2013: Uses a trekking stick, Nordic walking stick, or shopping cart in lieu of a cane for balance. Many falling instances before this.
2009: Shadowing. PWD used to stop by my place of work after they got off work and literally stand in front of my office door "hanging out." I would tell my PWD it was unprofessional for me to have my LO standing there when there is a line of customers, and my LO would literally ignore me day in and day out. I only recently decided this was a form of shadowing, because it was odd behavior, and at the time time hard to figure. I developed no coping method for this, although I now have many coping mechanisms for their continued efforts to follow me everywhere.
2007: Air travel: I realized recently that the PWD being extremely uncomfortable on airplanes may be a symptom. We travel a lot and I would not want to be with the PWD on a flight longer than two hours. Crowds make the PWD uncomfortable, too. Had to leave Busch Gardens early, too many people.
What I'm trying to figure out is when the PWD may become disoriented and start wandering. I realize everyone is different, but I'm hesitant to ask a nurse I communicate well with to present symptoms to the PWD's primary care giver right now.
I think I've determined the PWD has the type of dementia in which medication might make a stroke more likely.
Comments
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Your LO needs one-on-one supervision.
Iris
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Well, you and I agree on that.
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I'm not sure if my LO had a mini stroke in 2013:
I returned from a long commute on a Friday night to find my LO on the couch with dry heaves and vertigo. A hospital visit diagnosed something at a neurological level based on diagnosed hypertension, prescribed hypertension medication, and maybe an inner ear thing (can't remember the exact diagnosis and it was in a foreign language). The medication was tweaked and that was that.
No one said anything about a mini stroke, but I've been reading and thinking that's what it might have been.
LO had another similar "couch" incident recently, and there could have been others over the years that I was not made aware of because I was gone so much.
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Hi. I'm sorry you and your husband are having such a hard time. I'm going to be very blunt because it seems like you have been asking the same questions for some time but not getting a response that is helping you or him.
Your husband needs to see a doctor and be evaluated. If he's being aggressive, calling 911 is in order, so they can get him to the hospital. The doctor will need to rule out treatable causes and then work on a diagnosis. Your husband needs to see a doctor some how.
I'm concerned that you and he are not safe.
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@Jeanne C. is correct, in my opinion. As much as you wish we could, none of us can predict when your PWD will become disoriented and start wandering or point you to a chart that will give you the exact blueprint for your PWD’s journey.
I am not dismissing your reasons for not currently “going nuclear” with your LO’s PCP. But you yourself realize they need to be medicated. Like the previous poster said, most likely members here will continue to suggest getting your PWD medically evaluated because, no matter how you phrase your questions, that’s what most of us feel is your next step. Your timeline of events is excellent and you should bring this with you when you finally take your PWD to a doctor for your current concerns.
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If it was a mini stroke in 2013, the question in my mind is which will come first? Another more dangerous mini stroke? Or disorientation in the form of my LO walking around naked in our backyard? The LO is capable of making it throughout the day, with a lot of toxicity and dysfunction.
I've tried hard to get people to help me get a diagnosis. I'll get in trouble if I try any harder, although it looks like I'm going to have to.
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I've spent the last few weeks trying to think of more pertinent questions that can help me figure out a timeline for what's about to happen.
One major problem area might be that if I call 911, I could be the one that gets committed or goes to jail. Americans have less than zero credibility in the country I live in. Might sound crazy if an American reads this, but I've been dealing with that scenario for 40 years and know it well.
I think I'm stuck waiting for something to happen that will get my adult children onboard with helping me get the diagnosis.
I'm safe, mostly because my coping mechanisms rock.
I thought of the mini stroke thing a while back, then Googled recently and found an article that better connected the dots between mini strokes and dementia. I'm going to look hard at that area in the coming days and months, and if I can generate a list of symptoms that indicate there could soon be an medical emergency, I'll use that to try again to get my adult children involved. My LO has so many medical problems right now and I'm not a doctor; it's hard to piece everything together.
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I understand, thank you.
I appreciate everyone's comments.
I'll print a copy of my timeline of events to keep on my person at all times.
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Tally, you are asking the members of the message board to give you a diagnosis. We cannot. No one can, except one or more doctors. You will need a PCP and a neurologist, and the diagnosis will take some time, after testing.
You keep saying things like you'll get in trouble or you are afraid to go nuclear. Once dementia enters your lives, much, if not everything in your life, will have to change. This is what the members post about every day, how they are adapting to these changes in their lives. You talk about 2013; that is something to address with the doctor. But in most cases, what happened in 2013 will have no bearing on what is happening now in 2023.
The main thing is to get a diagnosis. In the small chance that this is a medical condition, she needs to start treatment. Some treatments may work if it's not too late.
At the same time, even without a diagnosis, there are steps that you can take to make your lives less chaotic. You should not be allowing her to wander around without supervision, because she can hurt herself. Your DW doesn't know what she is doing. Dementia slowly destroys the brain and destroys the thinking capacity.
IMO, your DW should never be alone. And she sounds past the point of early dementia. It is okay if you decide you cannot be her caregiver. In that case, you can make provisions for placement into a suitable memory care facility so she can have round the clock supervision. Although placement does not change the behaviors, she might do a bit better from a more contained space and more routine.
Iris
Edited to add that the timeline for the development of the dementias can be up to twenty years, possibly more, no one knows for sure.
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Thank you.
Read it once. Will read it again a little while.
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I think your question is impossible to answer. But it is unlikely that a single event in 2013 would be responsible for all of the symptoms. Certainly the most common diagnosis is mixed dementia (combination of Alzheimer's and vascular disease), but the diffuse behavioral changes you describe are cumulative. Nausea and vertigo that you describe in 2013 may be due to an inner ear problem, or can be symptoms of a stroke in the posterior part of the brains circulation. Very difficult to tell apart without brain imaging.
I also don't think anyone can tell you whether or when wandering might occur.
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Tally - given that you mentioned in another post your own cognitive issues, it would be best for you to get the adult children involved now. I don’t know if your issues are stable and will continue to be or if you could decline too. Given everything you’ve said in various posts, I really don’t think you should continue being her primary caregiver. It’s not safe for either of you.
Dementia isn’t linear. You can’t base your guess on when a particular symptom will happen in the future based on the past timeline of events. Even though each ‘stage’ has an average duration, each person with dementia presents with symptoms from more than one stage at the same time. For example, my mom is incontinent(stage 5 of 7), but is fully capable is choosing appropriate clothing and dressing herself(stage 4). She can’t remember what she had to eat an hour ago, but she can take a cognitive test and get scored almost normal. However her fall last week sent her into delirium and she seemed much worse for a while.
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I think my neurocognitive disorder is degenerating. I checked in with my psychologist earlier this year, and they said I was stable, but I messed up which day of the week it was last week. I'm going to get some brain vitamins and crossword puzzles this week. I'm big on being self-sufficient. :-)
Very much appreciate your advice.
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I'm worried I'm stuck for the next ten years dealing with the situation, to be honest.
I never wish anything bad on anyone. I listened to one of our arguments yesterday, and am certain that my LO's defense was consistently tainted by dementia (my psychologist said I retained my intellect, and my LO's arguments are not logical). I've been dealing with the arguments for so long, I have to physically remove myself from the person to make the arguing stop. Clamming up doesn't work.
LO has had two incidents of bad drug use in the past, Lyme disease that may not have been completely cured, Hepatitis C with interferon treatment, diagnosed hypertension with constant tweaking of medication, gout that put the LO in the hospital, and still smokes cigarettes believe it or not. I have another list of ailments somewhere that is longer than the above. I think the 2013 nausea / vertigo thing was diagnosed as neuro-level-inner-ear-(the-hairs)-hypertension-something, but I'm starting to suspect it was misdiagnosed and the LO has had multiple mini strokes.
I'm looking for something that will allow me to report a potential medical emergency before it happens. I think that's my only option right now.
Thank you for your guidance.
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Tally, I must have missed reading that you have a neurocognitive disorder. What does that mean? If this is the case, I am beginning to understand why you are having difficulty processing you and your LO's situation.
What, exactly, are you looking for to allow you "to report a potential medical emergency"?
Iris
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Iris,
An exceptionally intelligent psychologist diagnosed my mTBI a few years ago.
It was sort of a big deal at the time because it explained a lot.
I had almost self-diagnosed myself after finding an mTBI flyer at an overseas Army Health Clinic. Veterans Affairs was trying to figure out what was wrong with me, and I guess symptoms for everything from sleep apnea, to PTSD, to mTBI are similar enough that they could not nail it down. The mTBI flyer had my coping mechanisms listed on the back and I said "wow, that's it" when I read them.
I'm looking for the ICD numbers, I'll post those in a minute.
I did run myself past my LO's symptom list and even though I think one of my ICD numbers may be close to Alzheimer's, my coping mechanisms work very well (thus far). Me being a good problem-solver could be exacerbating my LO's undiagnosed dementia, which is something for me to think about.
I don't like to brag about my coping mechanisms, but my family thinks there's nothing wrong with me. Although my oldest and his wife may have noticed me mixing up what day of the week it was a couple of times last week. 😅 I've already developed a coping mechanism for that.
Tally
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On the medical emergency:
I don't know for a fact that my LO has had mini stroke(s). And I had the date wrong. The first mini stroke would have been 2011 or 2012 (that I know of). I had to check my resume, because I base incident dates on jobs I've had in the past (my coping mechanism for stuff like that).
That being said, my LO had to lay on a family friend's couch to recover a few months ago, and I just found out about it. Same symptoms as 2011/12. There's no way to tell how many other times it has happened.
I may be able to get that symptomatic info to my LO's primary care giver and let the logic flow from there? Tell him I'm worried my LO is about to have a major stroke. Something like that. I'm really stuck and have to be careful what I do.
I probably got the idea from the person here in the discussion group who mentioned they were doing slicky-boy things to get stuff done.
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Tally, this may appear to be a small point, but there is a distinction between mini stroke and mild stroke. A mini stroke is a precursor to a mild stroke, yet causes no permanent damage. A mild stroke causes damage. A thorough neurological examination is necessary to determine the extent of damage.
Recurrent strokes can cause permanent brain damage and dementia, also other complications. Also, a PWD can have a mixed dementia. This is for an experienced neurologist to determine.
Why don't you describe to the doctor what you are observing currently, and let the doctor ask questions about the timeline? You seem to be more concerned about 2012 than today.
Tally, you have devised coping mechanisms regarding your TBI, but IMO, you are overthinking. You know what you have to do, you just have to do it.
Iris
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Knowing these will enable us to better help you
...neither of you is under medical care....you do not live in the USA...is a DPOA in place and if so are you the agent listed???
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I know I overthink things. I'm analytical to the point that I lost girlfriends when I was younger. 😅
On the 2012 mini stroke thing, I'm still analyzing what happened, because it could be a major clue.
I know what I have to do. It's very hard to push the button. I've already tried to officially push the button five different ways, and it didn't work.
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On the DPOA, believe it or not, I think I'm okay without one. I'll ask my oldest adult child today if they think one would be necessary if something bad happens.
I know it's hard to envision my situation without being in it.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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