2 possible symptoms: Social withdrawal and hoarding, question about?
Hi--
My first question is about a social withdrawal symptom:
I can count 22 people - family and friends - who my person has intentionally offended over the last few years. In some instances to try to keep them from staying in our house as vacation guests. We have typically stayed in other family members' homes, sleeping in extra bedrooms or on couches, over the decades. I see my person's attempts to keep people away from us as t an early onset Alzheimer's symptom (social withdrawal), but I haven't found anything online that supports my theory. Also, ironically, I think my person would still stay in family's homes when we travel even though the person tries to keep the same family from staying in our home.
Second question is whether a person with no income who tries to capture any and all monthly pension income is doing this as a form of hoarding? I have removed the person's name from my bank accounts as a precaution until I can get the person diagnosed. I only recently realized that if the person is trying to hoard money, if I allowed it, it could cause me/us financial problems. Explaining it to the person does no good, and the person keeps trying to capture more monthly income.
Thanks for any comments or info in advance. I'm trying to tighten up my understanding of what's going on right now to develop coping mechanisms.
Comments
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Typical early symptoms include a loss of empathy, so it would not be surprising to see someone with Alz running off people that are inconvenient (houseguests) while still anticipating that relatives would put them up if they traveled.
I don't know about hoarding, but people with Alz have very poor judgement, and money if often the first place that becomes evident. Explaining doesn't help. If you could explain things logically, the person wouldn't have Alzheimers! Keeping them away from finances is essential, whether they have been diagnosed or not.
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First. I feel your pain! Withdrawal is completely normal. I think it protects them from any embarrassing moments making mistakes in front of others. Usually super sensitive about that. Don’t like being confronted. But at same time hard to see it from others perspective. Being rude or unreasonable then forgetting it even happened. As far as hoarding. I would get power of attorney so you have control and maybe even contact the company to see if he is eligible for more and if not let them know the condition and to make a note so they are aware and can shut it down. I had to make a fake letter and mail it to my husband so he would stop calling an airline about being an airline attendant. He called and talked about it non stop. I had to put an end to before I snapped. One place I got amazing help is TEEPA SNOW VIDEOS. She is the Alzheimer’s whisperer and explains certain issues so clearly. I google the issue and her name and there is a video in it. Good luck! Hang in there! I know it is HARD!!!!!!!!1
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Very hard to tell from what you're saying. Social withdrawal and wanting to control your finances are also potential signs of an abusive relationship.
Typical early dementia signs are repetitive questions, having trouble paying bills, getting lost going to familiar places, misplacing household objects.
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You've described my dad before I was able to get him diagnosed-- mom was the major impediment in this causing dad to be diagnosed late mid-stages-- but I saw obvious behaviors as early as 2005.
Dad managed to burn though most of the social circle in PA by 1999 as a result of grief and drinking as a result of the death of my younger sister-his favorite. They moved to a golf course near the beach in MD as a deliberate do-over and built a new social circle which was great until about 2005 when my parents were suddenly iced out. They started spending more and more time at their home in Florida where they created yet another social life for themselves. When I went down to sell the house in 2017, several friends stopped by to ask after mom but only one mentioned dad and then only to tell what a horrible man he was.
Dad mostly offended people with a lack of social filter-- basically he said the quiet thing out loud. So while he never particularly cared for mom's sisters (he used to refer to them collectively as "the coven") he was no longer cordial when one or more came to visit. Over time, they became quite isolated.
It was different with me. We were never particularly close, but I continued to visit to keep an eye on their well-being visiting about 6 times a year. Dad actively worked to offend me and keep my from keeping tabs on him. I suspect her knew he was slipping cognitively and that I would not only recognize it but would take steps to rob him of his independence. Which, of course, is exactly what happened because he didn't take steps to plan for his care that didn't include me. Initially I brought my husband and son (who has autism) along, but dad would antagonize them knowing it was the best way to get me from coming. Eventually, I made the trips solo; it made him crazy that he couldn't offend me enough to stay away though he continued to try.
Around this time, he also got very weird with money-- irresponsible, grandiose, paranoid. He didn't mind splashing out on drinks and there was plenty of decent wine on hand, but he didn't like mom spending money on anything "extravagant" like the hair salon or even a white built-in microwave to match the other appliances. Since his mind sort of time traveled to the mid-1970s, he parsed everything against prices from that era. He also took to day-trading believing he could grow his wealth. He managed to lose $360K before he lost the ability to use his laptop. The steps you are taking to protect yourself are critical.
HB
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I'm confused about the term,"capturing money, " but I agree a PWD should not have access to finances. Durable POA is essential. Also good to keep an eye on any separate accounts they may have. My DH had automatic payments deducted from his account for numerous magazines he never looked at.
Social skills fade with dementia, so it's hard to maintain relationships. My DH has no idea when he says something offensive. I question whether your DH is intentionally driving others away. My DH hasn't understood cause and effect for a long time. He just goes on with his life, as it is, and the chips fall where they may...
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One of my DW's first symptoms whas social withdrawal. All she wanted to do was watch tv all day long. She would watch the same series over and over for a year or so. I think she sensed something was wrong and didn't want anyone to see her I guess. She's out of that tv phase now as she is in the shadowing phase and never leaves me alone.
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My step-dad’s symptoms are similar. Apathy, chooses to avoid socializing with others, and paranoia about money. Hadn’t ever written a check in his life, but transferred most of their money to an account solely in his own name after they had added me to the joint account. They added myself and my sister because Mom was showing the common symptoms of dementia and she could no longer be the bill payer. Four years later his symptoms are still the same, with some memory loss added in.
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The person has no income to speak of. The person would literally like to control my monthly income to the point that I have no money each month. If I let the person do this, we could run into financial problems. I have a small amount of debt right now that I'm not comfortable with, because normally I have zero debt. The person is tricky, insistent, and persistent with trying to capture more of my income even though I constantly say "no" specifically because I'm going to pay off the small amount of debt soon.
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That's why I wonder if this is a form of hoarding. I don't see it as normal behavior.
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I am confused about "capturing money" too. What are you trying to say? PWDs cannot function normally.
Iris
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Iris, the person tries to control 100% of my pension money, which I can't allow - or we would get into financial trouble. The person tries to incrementally capture more and more money each month in tricky ways, is another way to say it. Before the odd behavior started, the person put gasoline in our car. Now, the person refuses to put gas in our car so the person does not have to pay for it. We have more than enough money; the inflation where we live is nothing like in the United States (I visited Colorado earlier this year; inflation in the States is off the charts, fully understandable if people are having problems paying their bills).
I have not yet been able to have the person diagnosed, so I do not know if the person has early onset Alzeheimer's, signs of forthcoming Alzheimer's, or nothing.
I think I'm stuck waiting for a major disorientation incident to get help. Our children don't believe there's anything wrong with the person because the person has always been like this (or at least since our children were born). The thing that caused me to research dementia was the person literally believing we went on a big Florida trip in 2018, when it was 2007, a huge difference in time because of what was going on during those time periods. That, and the fact that I've had to start locking doors to keep the person away from me. Her verbal assaults have become horrendous.
The next questions I will post will probably be a complete list of symptoms to try to determine whether the person has early onset, or just signs that the person will get Alzheimer's later in life. The person's mother walked around naked in our backyard, although she was 20 years older when she got dementia.
Thank you for your question.
Note 1: I'll try to remember to start typing "PWD" from now on. I didn't see the acryonym list until now.
Note 2: The PWD angered and may have lost a close friend yesterday due to a money issue. The friend is wealthy, and like I said, we have enough money, so money is not an issue for us or for the friend. The friend would be number 23 in a list of family and friends the PWD is being unfriendly to, suddenly.
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Tallyshooter, if you could get your PWD to see their PCP, they could check for the other health issues that can cause dementia like symptoms. Some of these other health issues are treatable. Depending on the circumstances, you could write up a list of the behaviors that you have seen and drop it off at the dr’s office before the PWD’s appt, explaining to the receptionist that the dr needs to read the info prior to the appt.
If your PWD is becoming aggressive, you need to seriously consider your safety. Have a plan and know what you will do if your safety is threatened. Keep your phone charged at all times and on your person. Have a safe room you can go to and lock yourself in. If possible, make that a room that would have access to the outside. Keep a small bag packed with essentials in the car. Have the car keys handy. Do NOT hesitate to call 911 if you are being threatened. If the aggressiveness is a sudden onset, it could be caused by a silent UTI (urinary tract infection). Or it could be dementia. Regardless, think about what you would do and then follow through. Stay safe!
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I echo what Pat posted. You really need to get your LO (loved one) examined by a PCP to search for dementia mimics, then by a neurologist. There are techniques to get the uncooperative PWD to the medical office. You will have to make a bullet-point list of your observations.
In the meantime, you have to ensure safety, both for yourself and for your LO. Keep your finances under control. There are techniques to do this. Read a lot of threads, and keep posting. Also, read the online reading material.
I still don't know what you mean by "capture money". Do you mean withdraw from a checking or savings account? You will probably have to have a separate account. If you post specifically about what you are dealing with, you could get a more targeted response. If your LO is bugging you about money, you will have to learn to divert attention. You may have to use what are called "fiblets". If your LO becomes aggressive and you feel threatened, you will need to call the authorities who handle PWDs. (911 in the US).
Iris
I edited to add that you cannot reason with a PWD. Hence the use of fiblets. Don't keep trying to reason with your LO. Familiarize yourself with anosognosia. They don't know that they have dementia or that they are behaving in an unusual manner.
Also, your LO should probably not be driving or putting gasoline into the car.
Iris
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Hi. I appreciate your suggestions. The doctor list thing is on my "nuclear" list. I have a nurse I think I can go to with the list. I'm just not there yet with going nuclear on the PWD because it's possible I'm wrong with everything (heckuva Catch 22 on not being able to get a diagnosis, aye? :-).
I've discussed with my sister the fact that the PWD was diagnosed and treated for Lyme Disease about 15 years ago. And the PWD also does not want to do follow up on that. I didn't know about the urinary tract infection thing. The PWD has also complained about that, but since I didn't know at the time, I could not match the timing on the agressiveness and the infection.
It's a frustrating situation that I know I'm not alone with, I appreciate everyone's suggestions. They are very helpful!
[Not spell-checked; copy and paste didn't work for some reason]
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Since everyone keeps asking about the capture-money thing, I should note that I took the PWD's name off our bank accounts after I realized the PWD might have something serious going on.
The PWD has no income, so I give the PWD an allowance each month that is more than enough (I'm generous; the PWD gets more from my pensions than I do). Even with an amount of money that allows the PWD to save exorbitant amounts of money, the PWD tries to get more money from me on a daily basis. I can't think of another way to describe it. I think it is similar to hoarding physical items.
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Taking away driving privileges will be hard. I'll need to get a diagnosis before I even attempt that.
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No, you don't need a diagnosis to stop an unsafe driver and anyone with cognitive impairment is unsafe. Fiblets may be required, but you should do it before someone gets hurt/killed. Grab the keys and go to the driver's side, "let's go together" or "I can drop you off/pick you up while running errands," if the PWD wants to drive somewhere. If you have more than one vehicle, get down to one. That way you can always say, " i think I'm going to need the car today." Imagine how you would (both) feel if the PWD got in a serious accident.
Stop giving them (so much) money. Once again , use fiblets if you have to. "I've worked out a new budget, we need to change spending habits for a few months," "I put money in your account," "I can pay your bills, " whatever it takes. PWDs can be reckless with money. Only give them what you can afford to lose.
Other than ruling out preventable cause like UTIs, vitamin deficiencies, brain masses, etc. you may not get a definitive answer. I would not delay action while waiting for a diagnosis.
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@tallyshooter what is your PWD doing w the money you are providing? Is she using in a manner that is appropriate? Paying personal bills, buying groceries, investing in savings? Is money being used in a manner you can at least evaluate and ensure that it is being handled appropriately? Since you are expressing concern about your PWD and money, I assume they are not making good choices w the money. Do you have legal access to exercise control over her spending, saving or investing? As mentioned earlier, if she is being scammed or making bad choices it may be time to begin to decrease and/or eliminate the allowance while you take care of financial obligations she currently has. That would be a best next step whether she is diagnosed w dementia, another condition, or just being eccentric.
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Regarding the money: stop giving the person so much money. Only give them a small amount for casual spending when not with you. Lunch, coffee, etc. Take over whatever bills etc that the person is supposed to pay out of the ‘allowance’ / pay them directly yourself. Take the car and put gas in it rather than give them money to put gas in it. Order the groceries and pick them up. Take them shopping for necessities, clothing etc and pay for it yourself. If they ask, just say that money is tight right now, but that you continue to make sure they get everything they need. Tell them that you get ‘points’ for using your debit card etc.
It’s going to be a battle if they are paranoid about having access to money.
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Thank you.
I will eventually do everything you guys are suggesting.
At present, if I mess with the status quo, the PWD manipulates other loved ones into mobbing me into submission. I've made enough changes like taking the PWD's name off bank accounts, and tweaking our budget, that I'm comfortable with my coping methods and the situation as it is.
The really crazy part is how long this has been going on (without me realizing there was dementia involved). The 2007/2018 date thing was the eye-opener. And then I realized the PWD was not a congenital liar, that the PWD was messing up dates as early as 2013.
I'm working on a list of symptoms. I'll post that next because I think I need to figure out if I'm dealing with early onset, or just signs of forthcoming Alzheimer's.
Thanks again.
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I clicked on "insightful" because this paragraph describes my PWD to a T:
"Around this time, he also got very weird with money-- irresponsible, grandiose, paranoid. He didn't mind splashing out on drinks and there was plenty of decent wine on hand, but he didn't like mom spending money on anything "extravagant" like the hair salon or even a white built-in microwave to match the other appliances. Since his mind sort of time traveled to the mid-1970s, he parsed everything against prices from that era. He also took to day-trading believing he could grow his wealth. He managed to lose $360K before he lost the ability to use his laptop. The steps you are taking to protect yourself are critical."
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Hi Tally,
I could be wrong, but based on what you've posted it sounds like some of your person's "original" personality has some similarities to what's going on now. This is hard. Usually when we think about dementia or alzheimers we sort of think of the other person you mentioned who strolled the backyard naked. Before we've gone through it directly and experienced the progression it can be hard to see how things are connected.
My mom and I suspected my dad had been having some sort of cognitive decline since 2019 (I'd thought it had started earlier). My mom married my dad when he was 56 and he's now 83, so it's really possible that he's been showing symptoms for almost the entire time I've been alive (I'm 27). I'm bringing this up to talk about the social withdrawal.
All of the "bad" personality traits of my dad have become the predominant parts of his "dementia personality". He's moody, caustic, he shuts down when he gets upset, he's withdrawn and doesn't want any visitors - which are all possible symptoms of dementia but also just sort of how he'd always been but worse. Which is what made it hard for us to be sure. And now it's hard to know what's dementia and what's his personality. I'm trying my best to see everything as dementia because it makes those jagged pills (the meanness, the stubbornness) easier to swallow.
We were in the same boat you are with not knowing how to get him to a doctor for a diagnosis. My dad stopped going to the doctor and refused to even consider it starting in 2019. We played this awful waiting game for something 911-related to happen to where he would HAVE to go and we'd finally be able to get some medical care for him. (This is what happened this year when he fell and broke his hip).
I'm saying all of this to say: if you're able to get your person to the doctor, that's great. It doesn't necessarily mean things are going to be easier for you. The delusions and suspicions and paranoia will likely continue. Things aren't going to get "easier" if you choose to continue on as caregiver, but having the support and guidance of medical staff helps.
And I want to echo what everyone else has said: they probably shouldn't be driving and you need to have a plan to keep yourself safe.
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It's easy to miss early signs of dementia. Looking back, I realize I ignored the signs for years! I just thought we were having trouble communicating. Now that you've (probably ) figured it out, it's time to act. Early onset can progress quick;y. On the other hand, if it's a correctable condition, treatment should start immediately. I'm sorry you have to go through this.
I don't mean to offend, but may I ask if English is your first language?
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Tally, you seem to be reluctant to accept that much of what you describe are things that you need to take charge of. Yet you say you don't want to "go nuclear". Well, this is what you have to do! But the members have strategies on how to make going nuclear less nuclear. It won't be easy, and it won't be a "one and done" sort of thing. You need to re-read and study the strategies that have been suggested to you. Nothing you have written is unusual, as you can see from the stories that the members relate.
You have not given your relationship. Are you in a position to have a legal power of attorney? This will be very important.
Iris
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You would laugh if I answered your question: "I don't mean to offend, but may I ask if English is your first language." 😅
You didn't offend me.
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I could use a laugh.....
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"Tally, you seem to be reluctant to accept that much of what you describe are things that you need to take charge of. Yet you say you don't want to "go nuclear". Well, this is what you have to do!"
I have a good female friend who calls me a wuss a lot. I always respond with "wisdom sucks, doesn't it?" 😂
Which is to say that I'm stuck on the fence with the going-nuclear decision. I'm sure I'll fall one way or the other soon.
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I'm disabled.
I have a diagnosed neurocognitive disorder that I'm sure affects my writing.
Please don't tell my editor (there's your laugh 😅).
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Thank you for answering and thank you for not taking offense.
I thought the use of the word "capturing," might have been a translation issue.
Your secret's safe with me...
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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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