Younger onset, or forthcoming Alzheimer's at later date?
Symptoms with start dates. Some dates are guesses because I only began paying attention to symptoms this year (2023):
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."
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.
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: 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.
2013: Uses a trekking stick, Nordic walking stick, or shopping cart in lieu of a cane for balance. Many falling instances before this.
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 also think the PWD may be at a stage where medication could help.
Comments
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This person needs to be evaluated by a physician. These are certainly symptoms for dementia/Alz. It is critical that a diagnosis be made to get the help needed for this person for safety reasons. Attached is a handout regarding stages that might assist you.
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Correctable causes should be ruled out ASAP. It's a lot to deal with, but I suggest getting started.
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Once again, you are describing my dad.
Dad had mixed dementia. One of those was a treatable form caused by alcohol use. Had this been diagnosed when I first started hounding mom about getting him evaluated, they'd both have had a better quality of life for about 10 years until the Alzheimer's became more severe.
HB
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As I mentioned before, sometimes the PCP is not the solution you might be hoping for. It was only after the base’s social worker worked with me to “beat some sense” into his head, did the PCP agree to actually test my grandmother to formally diagnose dementia. And even then, she presented with AFIB on that visit and he jumped on that problem, saying it trumped her dementia issues., and postponed her testing. I argued that it did not if she didn’t have the wherewithal to remember to take her AFIB meds.
I had to wait for the catastrophe because even APS chose not to act, despite all the very clear evidence of her diminished, mental capacity.
What I’m trying to say is start now with getting a proper diagnosis, because that process might not be a speedy as you think it will be.
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Forgive me if I sound suspicious or questioning, that's not my intent--but there's something odd to me here in your approach that I can't quite figure out. This seems to be your SO/partner/spouse you're talking about? Are you married? Not that it matters to the folks here--there are all kinds of relationships here, but I feel like you're trying not to disclose for some reason. Whether you are married is going to matter in terms of legal obligation and expectation of financial support. If you are not married, do you have any legal standing with this person? If you don't have power of attorney for finances and healthcare, there is ultimately going to be little that you can do, and it sounds like you need to decide whether you are fully committed to the caregiving role no matter what, or whether this is an abusive relationship that you want to leave before it gets any worse. Both scenarios have been often discussed on these boards. If you are committed, you are ultimately going to need legal standing and it's never too soon to get that taken care of. If you want out but still care about the person, it may behoove you to figure out who (you mentioned children) might be the ones to assume responsibility and give them fair warning.
Again, very hard to tell from the symptoms you're describing, it's not clear to me that this is definitively dementia. Makes me also wonder whether there's any substance abuse involved. But there does clearly seem to be a lot of antagonism in the relationship that is going to need to be resolved one way or another. Believe me, many of us know what it is like to be very frustrated with your partner before the diagnosis is clear. I'm sorry it's so difficult. Perhaps speaking to a care consultant at the Alzheimer's Association hotline (1-800-272-3900) would help you.
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Tally - it’s okay to just refer to your loved one as DH ( husband), DW(wife), partner ( covers every other significant other). Your posts sound like you are distancing yourself from being anything more than a roommate - but sometimes you mention something that implied your loved one is your spouse.
As M1 stated, if you are not the legal next of kin ( and even if you are) you really need legal authority to do things. You need to be listed on forms that allow medical people to talk to you about their care.
There are medical conditions that cause dementia like symptoms: thyroid issues, B12 deficiency, brain swelling, urinary tract infections( even without burning and itching), etc. I suggest you call the doctor and schedule both of you for a checkup that involves blood work. Some of the symptoms you mention can be helped by anxiety and depression and memory medications. Others by medicationd to reduce hallucinations delusions, agitation etc.
If you’ve read other people’s posts on the caregiver, spouse, or parent forums, you’ve seen mention of a free internet article, a book Then36 hour day, various links to expert discussion of stages of dementia etc. All of those are informative.
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There could be substance abuse involved. But it was a long time ago. Maybe two different instances with different drugs. Could also be psychological trauma from before I met the person. Everyone's pretty much answered all my questions, plus Google is my friend, so thank you.
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What do you mean by "loud rifling?" When I google rifling it has to do with the barrel of a gun.
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I’m guessing they mean their PWD rifles through possessions. For example, rifling through papers in a desk, etc.
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I think I used the wrong word (I'm starting to lose my English language vocabulary after 40 years in a foreign country 😅).
I should have written "rummaging."
It seems like my PWD loudly rummages through things throughout the house. Think this began in the last year or so. About the same time that I noticed household things were not being done correctly. Which also corresponds to me locking myself in rooms to avoid the PWD. I'm trying to develop a timeline to see which stage the PWD is at, but it's hard because I think they've had symptoms for many years.
Note: I checked the base word "rifle," and it's a synonym for "rummage." As noted, I may be so dated with English that "rifle" is no longer used. https://www.thesaurus.com/browse/rifle
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PWDs rummage, that's what they do, along with other behaviors.
You will have to accept that this is how it is, then develop a plan, starting with medical exam to rule out anything treatable and possibly reversible.
Iris
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Thank you.
I accept the rummaging because there's not anything I can do about it, other than putting in ear plugs. 😅 I sleep with ear plugs anyway, so no big deal.
I've been looking for the member who mentioned meds, because that's been one of my objectives. I think the PWD may be at a stage where medication could help.
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I added "Air travel" to the symptom list.
I completely forgot that that is an issue with the PWD.
Sad part is that means the PWD may had serious symptoms for eight years.
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I don't see marriage as an issue with what's been going on. We're married and have had marital problems the whole 40 or so years.
For the sake of conscience, thank goodness I did not let the PWD kick me out of my own house recently. I examined one of our recent arguments, and it was very specifically based on a dementia symptom. 😀
Pretty sure I'm stuck looking at everything through a dementia filter for the rest of my life, or the PWD's life.
I'm sure it's hard for an outsider to read a digital list of symptoms and make a determination. I added "Air travel" to the symptom list this morning. That's a huge indicator, in my mind, that the PWD really does have early onset Alzheimer's - because they've been uncomfortable in planes for at least the last 8 or so years. I have spine arthritis and the simple act of sleeping can inflame my arthritis. If anyone should be uncomfortable in plane it's me, not the PWD. I did an 11-hour test flight recently because neither of us had flown long distance for a while, and everything but the long flight bothered my back. 😅 You don't need to feel sorry for me. As my psychologist always notes, I've had arthritis since my early thirties and my coping methods are exceptional.
I really appreciate everyone's input on this. It has helped me further figure out what's going on. Still no idea how to get the PWD diagnosed, but I'm making progress in that direction.
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I would have used rifling as well. It creates a distinctive sound.
My dad did this. It was a result of his anger, suspicion and paranoia. He believed mom and I were doing dirty deals behind his back. We kind of were to some degree having moved him near me, selling both their houses and buying a third in mom's name only at the suggestion of her CELA. He was looking for evidence of our betrayals.
HB
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I need to think about what you wrote.
I thought my PWD or unknowns were trying to poison me for a while because someone was messing with hydration bladders, and coffee and supplement containers. Two different times: 2017 when I early retired, and earlier this year.
I think I finally determined it was just my wife rifling through my stuff after I'd gone to bed at night.
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Yes, everything must be looked at through a dementia filter. Also remember that the PWD is receiving everything through a dementia filter. Words may not be understood, but tone of voice is. Multi step instructions cannot be followed. Questions can't be answered...Life is different now.
I also agree that those who know the PWD best can see the symptoms most clearly. Knowing the PWD "before," makes it obvious, to us, when something is wrong with the "after."
I'm fortunate that my DH is OK with me being in charge of money, etc, I've always been on the bossy side, but I've taken over most of the things he used to do and he's OK with it. I should count my blessings.
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I appreciate all of the feedback regarding paranoia and hallucinations. I'm a 1st time poster here. I've been with my "other half" for 20 years so it's not like we haven't been thru a lot together or don't know each other well. I realized that something was amiss about 6 years ago. I alerted his family and they were pretty much "ho hum," about it. I completely took charge of his life from his finances to medical. We finally bought a house together and moved 6 months ago. His mood swings are erratic, sudden and threatening. He swears at me, makes wild accusations, etc. I used to counter his attacks b y arguing which was the wrong thing to do. Now, I just stop what I'm doing, look at him in silencer and allow him to rant. I'm seeing a new neurologist on the 19th because his former doctor was "going thru the motions" of caring. I need him to be seen by "fresh eyes" with new and different questions and to have his meds re-evaluated. Added to all of this is that his younger brother is mad at him (us) and cut off all communication. Unforgivable. The rest of his family is just as bad even though he's always been there for them! My support group only meets once a month. I need more than that! He had a home healthcare worker, 2 days a week and 3 hours per session. All of a sudden, they started to "strong-arm" to get him full-time hours. He doesn't need that. So, I'm waiting to see what the new doctor recommends. I'm so sad, so stressed and fearful and I feel like I'm sitting on a keg of dynamite. Any suggestions would be gratefully received.
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Hi judy, you will get more responses if you start a new discussion.
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Tally, since your LO is rifling and rummaging, especially at night while you are asleep with earplugs, it will help if you take some precautions.
Caregivers put up locks and alarms to alert them if the LO attempts to leave the home in the middle of the night.
Dangerous items, such as cleaning solutions, need to be put away, because PWDs may think that bleach is a beverage and drink it. The same with any weapons, such as guns and knives and power tools.
The stove should be secured so the PWD cannot access without supervision.
Important papers and jewelry should be secured because PWDs have a tendency to throw things out.
All of this is called dementia-proofing the home. This can be done even without a formal diagnosis. Frankly, your home situation sounds precarious.
Iris
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@yojudy @tallyshooter , also discuss with the Neurologist or whatever physician you see the possibility of Frontal Temporal Dementia, especially if they are on the younger side. DH had many of the same symptoms and tallyshooter lists, and his tests came back showing mixed dementia with mainly FTD, with some ALZ. The difference could be important because the medications given for ALZ can actually make the FTD worse.
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I don't have much to offer, but I will sit on your words a little, then come back to see if I have ideas.
Coping mechanisms work, since you and I are obviously using them. People can call me "nuts" all they want to, and I'm still locking my door at night, when I take naps, and when I need to get stuff done in my home office.
I have video-ed my PWD in the past, just not recently. I wish I would have video-ed the PWD's face sticking through our kitchen-to-dining-room serving window yelling cliches at me when I locked a door to get away from them. Which is probably hard to envision without seeing the layout of our house. Visualize a beet-red yelling face sticking through a small window because they could not get to me through a door to yell directly in my face. 😁 I should apologize for smilee emojis, but laughter kept me sane in a workplace for 38 years, now I'm using it again (I'm not laughing at your situation; definitely laughing at mine).
I bookmarked your post, and will be back soon. This discussion group has already helped me quite a bit.
One thing I need to ask a question about next is whether anyone is stuck in a foreign country legal situation where it might be bad to even ask to have someone evaluated for dementia. Because I may be in that situation. I've tried to contact a local Alzheimer's organization and got no response (I think). And asked a foreign lawyer for a legal opinion and was ignored (I think). Both could have been technical glitches, so I'm not sure if I'm being ignored. I know I already told people here that I was laughed at by a psychologist when I told them I thought my PWD might have early onset Alzheimer's. Until I figure that one out, I'm not going to do anything that will get me into legal hot water. I have legal insurance that protects both of us, but the country I'm in has different medical privacy laws than the U.S. I know how HIPAA works, but don't know much about the laws in the country I live in because I always worked for the Army (covered by a Status Of Forces Agreement). I'll post more on the above later.
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It probably is precarious, but not so extreme that I need to do all of the things you note (yet). Namely, because if I do more than I already have, I will be mobbed back into submission by our adult children. 😅
We're at the "dumb" stage right now. Asking my PWD to please not put a basket of clothes on the top step of our basement stairs doesn't work, because the PWD doesn't understand that if we don't notice the basket, we might trip over it and fall down the stairs. Same way cats and candles don't go together. My PWD keeps lighting them and leaving them unattended. That kind of dumb.
I was concerned watching the PWD drive a few months ago, but there's nothing I can do about it until I get a diagnosis.
I appreciate the tips, and I will look at doing each one when it's time.
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Making my situation worse with meds would be bad, yes. 😀 Thank you for the info!
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Tally, it's not true that you can't do anything without a diagnosis. You can take precautions to ensure the safety of everyone in the household. And your LO is not dumb, she is ill with a progressive illness, which will inevitably get worse. Someone in the household needs to ensure that the unattended candles are put out, or risk a fire.
Iris
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I'm seeing a parallel between your and my situations.
Yours is way worse than mine.
I think I may be in a country that thinks like your husband's family: "Ho hum, it's just part of getting old."
Here's my first suggestion:
- Maybe write down all your coping mechanisms?
- I use the Notepad app in my phone to create lists that turn into brainstorming sessions. I use paper stickies, index cards, and even letter-size cardstock to create even more lists.
- I think my coping mechanisms in general are great. My psychologist pats me on the back all the time. The lists help me think of more things to do because I see holes in my thought process (the brainstorming mentioned above).
- Along the same lines, as soon as I have time, I plan to add year dates to the list that started this discussion, and maybe a short note about the effect it's having. The social withdrawal thing is a huge part of my life right now. I texted an American cousin my PWD tried to unfriend yesterday, and thankfully his feelings were not hurt. We used to play together as kids and I've been out of the country for so long, it would have broken my heart if I lost him as a friend. Your husband's family, and professionals in the country I live in, need to live with the full ramifications of what the symptoms do to families before they say "ho hum" thing.
- Another suggestion is to keep posting new discussion questions about your problem areas - because I think we are experiencing a healthy journaling effect from the keyboard pounding. I still haven't figured out a timeline for my PWD, so I'm going to keep Googling and asking questions here until I get it.
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Iris,
The "dumb" reference was to the acts, not to my LO. I can see that they have retained their intellect. The situation is also dumb because it could result in a house fire.
I put out the candles when I see one unattended. My LO lights them again and chews me out, of course.
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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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