This is an administrative question, I think. I am looking for an article about a dementia patient who scored very high on a memory test given at the neurologist ‘s office yet continued to show symptoms of dementia.
This just happened yesterday with my sister.
She has a “boyfriend” from her Bible study group (he is a retired pastor to seniors) and thinks she is getting married this summer even though he has not proposed. We have not even formally met him yet. I go to a different church.. Yesterday she scored very high on the memory test (even the neurologist was surprised). Ideally, it would be so good to just let her get married, have my sister change my POA (medical and financial) to her new husband, but I see obstacles ahead. I see ethical and moral questions about not revealing her true condition. My dear husband wants this “marriage” to happen, but I can’t hide the truth.
Anyone have thoughts or ideas on this?
Being neutral about this is better than being anxious like I was earlier. 🙄
But they had a few good years and why deprive your sister of that (if this guy is really interested in marrying her)? It sounds like she has no money to be scammed out of. Maybe they should just live together (too scandalous for a pastor I suppose?). Maybe they should have a prenup or something. Maybe he also isn't "all there" and in that case, there is a bigger problem in the future.
Anyway, I don't think being POA for a person with dementia entitles you to keep them from making a mistake. Legally is she well enough to make a legal decision to marry? Sounds like it. It doesn't sound like she's been declared incompetent or that you are her legal guardian.
I do think you should meet this guy and talk to whomever can give you a clue as to whether this is a delusion or not. If it is you are worrying about nothing. But be discreet if you can. Telling other people that your sister has dementia is something I don't think is something you should do until it is REALLY obvious to everyone.
From last evening’s short visit with the pastor friend, it doesn’t seem so much like a delusion to my husband and I, but something real is going on there but still too early to say. It’s a wait and see situation.
Thank you!
It's a little scary when older people of questionable mental capacity want to get married. Do they really know what they're doing? Is the intended spouse manipulating them? Is he a good person who will love and care for her, even as she is declining? Hard to know how much you can intervene and how much you just have to let go?
I agree about the neuro test (which she gets every time she sees the neurologist). It measures only one aspect of the mind. The rest of the symptoms count also, as does family input about behaviors.
I appreciate for your thoughts. It helps me have a more informed perspective on things.
thank you for your comment. This whole caregiving experience has been a very difficult time. My son-in-Law suspects spiritual oppression going on. I believe it.
I have been overwhelmed with being my sister’s “overseer”, and finally last weekend, I came up with a list of Agingcare.com advice that meets me right where I am. And I wrote another list of “what I cannot control” and “what I can control”. I’d love to share those with you all sometime.
One new idea to me is to not compare dementia behaviors with normal behaviors, to remember that her behaviors are part of the illness. Ive read and heard this so often but now it means something to me. So instead of thinking that a behavior is insane (even if it is), which causes me to go into sorrow, grief and angst, I need to label it as part of the illness, accept it as it is, pray for her, thank God for her and for the help He gives me. I have so much to learn, and I thank all of you for teaching me through this forum.
Until later,
Caregiversister
Dementia is an umbrella term, that hovers over most cognitive issues. There are so many underlying causes and symptoms can vary widely. Even people DXed with the same condition can experience different symptoms and/or at different times. The "staging" used is to lump together observed behaviors by most. Some exhibit all, in the time frame indicated. Others may never experience them. Every person with dementia will have their own "journey", as it were, highly dependent on the type, what part of the brain is impacted, even their background and/or personality.
While she thinks she has a BF and that BF is going to marry her, is this just a delusion or is it real? Given all that you have observed about her, it sounds more like a delusion. I would, at the least, make a point to meet this "BF" and somehow ask about his "relationship" with your sister. No details, just asking how they met, what they plan, etc. I would NOT go revealing anything about her condition, esp since you don't know the whole picture yet! I also wouldn't even reveal her thoughts about impending marriage. It could impact their friendship, if there really is one. That would hurt her. If he indicates they are just bible study buds and nothing more, leave it at that. I wouldn't try to convince her otherwise. If, on the other hand, he indicates strong feelings and potential marriage, then you have to consider how to proceed. Despite how husband feels about that, it wouldn't benefit anyone to let that "plan" move forward. But, her medical condition is HERs and shouldn't be shared with others. IF this "BF" were considering marriage, you could dampen that by just saying that she has a medical condition.
As noted in another comment, her next appointment should include you presenting a list of observations you have made about her. Tests are tests and may reveal something, but these docs never see the test subject in their natural habitat and can dismiss a lot unless you can provide evidence otherwise! Also, if the test isn't targeted properly, they will miss the real DX.
Anyone relying on that test a PCP would administer in their office - this isn't extensive or conclusive. It is intended to get a baseline with the first iteration and then watch for changes in subsequent iterations. Too many people can pass that test easily.
Please give the source of the article and web address if you know it.
Thank you.
Whatever needs to come out will during their dating.
Juse pray about it and let God handle it.
If you haven’t met him, do you even know if he intends to marry her? Contact him and have an honest conversation. Talk with him about her dementia and your concerns. You might keep the POA active though. Sometimes things don’t work out and you may be needed. You may have suspicions about him or his intentions, but do the work to meet and understand him. Also, if he doesn’t know that she has dementia, he may not know what he wants for his future with her.
Meet him. Have a discussion.
Scientists Have Identified Four Distinct Types of Alzheimer's And What They Do to Us (sciencealert.com).
The first variant, discovered in 33 percent of cases, sees tau spreading mainly within the temporal lobe and affecting patient memory. The second, found 18 percent of the time, spreads across the other parts of the cerebral cortex – memory problems are less common, but difficulties in planning and performing actions are more common.
The third variant, found in 30 percent of all cases, is where tau spreads in the visual cortex (used for processing sight) – patients have trouble orienting themselves, judging distance, and identifying shapes. The fourth and final variant, seen in 19 percent of cases, spreads asymmetrically in the brain's left hemisphere and affects language processing.
Two notes on this:
1) POAs are no good for any federal agency
2) There's no file to be on with SS and Medicare.
Legally, the only way to take care of SS/Medicare, you have to apply to be Rep Payee.
This can be done via a local SS office (unless you enjoy being on hold for a long time when calling the main number.) It's free and not that hard. I did it through my own local office, not my mother's. I did not have to bring her with me. They didn't ask to look at anything I brought with me to show I'd been managing her finances, etc.
Even the yearly reporting isn't hard - it can be done with the form they send or can be done through your own SS account (they link you to it, you should NOT create an account in their name or use one they created.) The only bad part was trying to set up the special account at the CU. That was only because they weren't very good at how it is done, even with their own "cheat sheet"! Once it was finally done, a simple call to the local office set up electronic payments to that account (The first payment as Rep Payee comes as a check. Once set up, only the Rep has access and nothing else should be mingled into it.)
My sister had a brain MRI which revealed mini-strokes in the lower brain. Neurologist has not come out definitively saying she has cerebral vascular dementia. He mentioned doing a spinal tap to determine if it was Alzheimer’s but he hasn’t mentioned it again.
I don’t discuss anything with my sister that is related to her dementia except yesterday to congratulate her on doing so well with the neuro test. (That test takes about 15 minutes with a neuro nurse at the office).
I have so many caution signs about her marrying:
I'm not at her Bible study group to see what actually goes on.
i don’t really know how much people in her group can detect dementia behaviors.
There are two people from her church I can talk to when I need to:
this “boyfriend” (about whom I have found life info online -how old, address, education, career, etc.). He himself told my sister that he had a stroke earlier in life from which he learned how to read, think, add, etc. with the help of his now deceased wife). Big red flags there!
a kind lady friend who drives her home from her weekday Bible study.
It IS difficult for me to think that no one has noticed her symptoms. I think someone should know. If my sister’s behaviors starts affecting people outside of my family, I think I have to say something.
in the past, my sister has confabulated stories from some event that happened. She recently handed me a dvd, asking me to give it to a family member, and a while later, with dvd in hand again, asked me if I had delivered it yet. And just yesterday continued to ask for whom is the neurology appointment (even when we talk about the appointment beforehand). We are currently applying for her third bankruptcy. She used her retirement pension and family inheritance to “pay off” a fortune teller. This last fact is what convinced me in 2019 that she should live with my husband and I. Husband has been so supportive and generous. ❤️🙏
I am stressed but am in process of seeking out therapy since our Alzheimer’s support group shut down at the hospital last year and hasn’t re-opened yet. I also have piano practice to offset the burnout. And quilting. And grandchildren. And exercise.
heartfelt thanks and warm regards to all of you wonderful caregivers!
caregiversister
I would suspect Frontotemporal Dementia (FTD). Memory is not so much affected in the earlier stages, but interest in romance can skyrocket, and they are easy prey for financial predators (as in gold digging "romantic partners" and various scam artists such as the fortune teller you mentioned). There is an excellent online support forum for FTD at ftdsupportforum dot com. You might want to join up and check it out to see if what you learn there matches up with your sister's symptoms. Most doctors, even neurologists, want to lump everyone under Alzheimer's and it can be frustrating trying to get the correct diagnosis.
My Dad has FTD, behavioral variant. He, too, has imagined he was going to marry women who were church or former work friends, and of course these women had no idea of such a thing. It is sweet but very sad. They can also become quite gullible and need protection from scammers. Another early sign is craving for sweets, bananas, sugary drinks. Loss of empathy can also begin fairly early, as well as lack of initiation (trouble getting started doing things). But, as they say, you've seen one case of FTD, you've seen one case. It can be a highly variable disease.
You sound like a wonderful sister and I am so sorry your sister is not well and wish you all the best!
There was a post where the OP said the PCP said Mom was fine with his testing but the neurologist's test said Mom had Dementia. We told the OP the Neurologist's test was probably the correct one.
As you said Mom "thinks" she is getting married. Does Mom see or hear from this man outside of the Bible Study? My Mom thought the Daycare bus driver was her boyfriend and wanted me to call him. I told her I did not know his phone number.
I would find a way to talk to this man. Ask if there is something going on with him and Mom? It may all be Moms imagination. If not, then you need to make him aware of her diagnosis. I personally would not marry someone at my age, 71, going into it knowing I would be the caregiver eventually. And sooner more than later. And if she does marry, it will all come back on you eventually.
Thanks again for your input!
I don't recall the question, but if you can remember the title, if you google it you might be surprised to find it in the search engines. Many AgingCare questions are right there front and center. Also try variations of the title with the spy glass above on the title line and do the "search" for this site. I hope admins might know; I sure don't know more.
Again, your sister passed. You might consider talking with her and saying what you have seen that concerns you. Do know that often memory is GREATLY affected by anxiety, and your sister may be exhibiting some of that in her newfound love.
I sure wish you good luck. Not ALL dementia shows up in memory tests, though indicators usually do, and if the MD was concerned he should have advised on a more thorough testing. Some testing can run for hours as others here might tell you.
You really have no control over this. You surely can speak frankly with your sister and you SHOULD not only about where SHE is headed, but about where the new hubby is in health risks spectrum.
Memory is one part of the brain's functionality. Some others are executive functioning, ability to process complex information, attention, concentration. The list is pretty long.
Has your sister had comprehensive testing to stage her dementia?
I may request testing to determine what kind of dementia and what stage. Thank you for that idea!