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My dad (87 years old, with dementia) accused me of being in charge of (as in producing, and picking out the cast of) an infomercial and making it show up on his TV so he had to watch it, at like 3 in the morning, when he no longer could figure out how to use the remote to turn the channel or turn off his TV. This was while he was still living at his home, and I was 3 1/2 hours away at my own home.

He also had a big box of keys (the vast majority of which no longer went to anything....) he set out by his fence, for whatever reason. When he finally found the box again, he blamed that one on me too. Again, I was hours away.

With short term memory, they don't just don't remember what they say or do, so their brain (in self-preservation) makes up things to fill the holes, to try to keep themselves from being so scared of all the missing memories. Their made up memories become truth to them....they don't realize their new memory is made up.

My dad had always been so smart, logical and meticulous, and while we were not super close (I didn't share girly stuff with him growing up....LOL ), we were close enough, and had great respect and affection for each other. When younger, he helped NASA put the first man on the moon, as well as working on the space shuttle and F22 programs. He was a very smart guy.

I didn't take his accusations (when he had dementia) personally, as I knew he didn't know what he was saying or doing. I just wished I could have helped him more, but dementia was such a new thing to me. My sister and I did what we could to help him, even though he refused for the longest time to move to assisted living, and she and I lived 3 1/2 and 16 hours away from him. It was definitely not an easy time.

He passed away a little over a year ago, and I still get emotional about it at times.
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Hallucinations are pretty common with advanced dementia. Just because they tell you about events that seem impossible, they are apt to firmly believe what they say. At times that could be hard to distinguish from spiteful behavior.

My wife is frequently reprimanding me for not taking good care of our dog. I'm convinced that when she does she truly believes we have a dog, but our last dog died about eight years ago.
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Elainera Sep 2023
Yes. It’s very possible your father really believes he went to the ER.
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Wow. Your father seems to be experiencing delusions.... or he is pulling every trick out of his bag to get your attention.

For sure he shouldn't be living alone as someone in the neighborhood may call APS.

Have you given any thought to having him live in an ALF? He would be safe, cared for, fed and watched over. It seems like the last resort, but it sounds like it's time.... right now.

I feel that your father is in peril not only to himself, but also to his neighbors should he leave the stove on and start a fire, etc.

Please know that his behavior IS manipulative and is a result of wanting/ needing attention. He is not being rational.

You must do what is best for your father and for you. I promise you if you answered every phone call, responded to every need, nothing would change..... except you. You would become an unhappy, stressed individual. Please, it's time. Put him in a facility, for both of your sakes.
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BurntCaregiver Sep 2023
Well said, WastedEffort.

Never play into the nonsense and attention-seeking behavior.
The father cannot live on his own anymore. It's either live-in help or AL.
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Your father cannot be living alone anymore. Either he needs to move into assisted living or there needs to be a companion/caregiver moved in to live with him.

I did in-home caregiving for 25 years and now am in the business. The kind of behavior you describe is very common with the elderly even when they don't have dementia.

Often the elder is consciously is trying to get attention because they think they should be the center of everyone's life epecially their adult kids. I had an elderly client years back who didn't have dementia and still lived on her own. She would literally "stage" falls then call me in hysterics so I'd go running over.
It's like a child with a 'boo-boo' who acts like it's far worse than it is for the attention. I've had clients who would call me in hysterics because it was an emergency. The emergency was they were out of ice cream.

Don't play into this nonsense with your father and don't give him more attention when he engages in this attention-seeking behavior because it will only encourage it.

If he has dementia, it's confabulation or actual delusions that he believes. He cannot live on his own anymore.

To answer your question about can people with dementia be spiteful.
Sure they can. I've known seniors with dementia who were still capable of methodically planning spiteful acts on their caregivers and family then carrying them out.
Ones who will instigate subtly to start trouble then play innocent like they don't know what's going on. They can also be master manipulators that pull out all the stops to get their own way. Or will pit family or friends, or spouses against each other. For the reason of being bored and enjoying the drama it causes.

I've personally seen and even lived all of these things. When I worked in AL I knew seniors who could go from having a laugh with their friends to crying, misery, the long faces, and begging to go home the second a family member walks in. I've seen a few turn it on when they thought they saw a car that looked like their adult child's in the parking lot. Then go back to being happy and fine when they saw it wasn't. It was as if they were flipping a switch like turning the lights on and off. I've also seen the vicious spite that can follow the poor, neglected senior act if they get called out on their lies.

It's okay to go along with a delusion when a person has dementia if the delusion is harmless. I had a client with dementia who believed she was secretly married to Elvis Presley. So we went along with it because it made her happy.

Never go along with delusions that are harmful. Like people are spying on them, stealing, or they went to the ER. Don't go along with this and do not answer the nonsense phone calls every other minute.

Get your father some live-in caregiving/companionship or move him into assisted living.
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Scampie1 Sep 2023
Burnt,

Thank you for this one. I've experienced this week two fold. My sister who is in a NH has been reeking havoc on her daughter. I spoke with my niece until almost three am this morning. Then I had a client that has been treating me my trash all week, wanting to leave me in her apartment while she takes a walk alone. She had planned to walk to the Capitol which are very long blocks. This is not what the job entails. Then she meets her social worker and turns on the boo hoo, old mean Scampie routine because I told her to stop talking to me like that. Everything coming out of her mouth was an order. She would order a rideshare to go to a store, but found out she could use her rideshare for other things, and had me carrying large bags of groceries on the bus. I don't know what she told her social worker, but she was angry at me. I asked if she had spoken to the Clinical Director and she had not. It simply amazes me how these people can lie.
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There are some who say they can't, but as you are gathering, they most certainly CAN be spiteful and manipulative! And I'm here to agree with the ones who say they can.

My mother is a narcissist and narcissists are master manipulators. In her early-mid ALZ, she could still put together a pretty decent manipulation. One of many examples: She kept locking herself in her backyard "accidentally" and then she would call me with her cell phone (which she hardly ever carried around otherwise) to come rescue her, which meant I had to drive an hour down a lonely rural road to get there. After the first time, I gave a trusted neighbor a key to her house. She was surprised the second time when I had a ready answer and the neighbor was there in a jiff to get her in the house. The next time, she waited until she knew the neighbor was out of town and she wandered to the back deck in the middle of the night. She called me at 3 am to come rescue her. It was a mild night and I knew she was safe and she had a comfortable place to sit, so I let her wait til daylight. The next time it happened, the neighbor was in the hospital and the night was in low 40's. Rather than letting her sit for an hour while I drove to her, I got the fire department to go out and get her out of her yard. It played to her NPD, but whatever. Every time it happened, I fixed her door so it would not automatically lock, but every time, she managed to fix it back "because she was afraid she would forget to lock it at night".

She did so many things to try to manipulate me into going to her on her timetable rather than my own, but I kept an account and used all of them as justification for moving her to Assisted Living when it became abundantly clear she couldn't live by herself.

Her AL was in the same town as my house and I took her out quite often even just to run errands with me. She picked the most public, awkward moments to call me out for crazy stuff - it didn't matter what - she just wanted to make a scene. Once we were alone in private, she was fine (although I was usually still seething!). I wonder sometimes what people said or thought in our small town after I managed to get her out of their store after a scene.

About a year ago, right after she moved from AL to MC, she saw me walk onto the unit where she lives and she turned and went to her room, but she didn't think I saw her. When I got there, she was on the floor moaning. She said she didn't know how long she had been there, but that the staff had refused to help her up and in fact, one of them had pushed her down. I had seen with my own eyes her turning in the common area to go back to her room and there were no staff members around as I followed her. She told me I am a horrible daughter for putting her in that place.

Today, she is on the backside of mid-stage ALZ. She can't really put anything together in advance - it's pretty much on the fly and it falls apart pretty easily - but she does try and most of what happens is she resorts to "rotten daughter" talk. It still stings, but I don't find myself trying to think several steps ahead of her anymore - just brace myself for the weirdness of being a peripheral player in her little serfdom.

I'm coming to the belief that as dementia takes over, the manipulation and spitefulness may not be as distinct, but those traits are so innate that they are always an undercurrent in their actions and attitudes. But heck - I'm an accountant, not a psychiatrist!
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MAYDAY Sep 2023
I was so lucky. My friend's mom needed a place, so our mom's became roommates in a board n care. Best thing ever having a tag team. I am so thankful for those few months. My friend would call me and say she got the burgers and shakes come over so we can eat together and then dance. We would put on music, and the caretakers and residents would just light up, and we would dance to the oldies and have fun. I was upset when she took her mom to be placed up where her sister retired. It was sister's turn to take care of mom.... We lost a wonderful tag team. I brought my aunt into the house where mom was. that was pretty good too, easier on me. A one stop shop. I also brought a dime store ball to toss around. They seemed to like that game too.
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He is probably experiencing anxiety in the evening. His anxiety progresses to agitation and then to outbursts. Talk with his doctor about his problems. His doctor can prescribe anti-anxiety medications and medications to help him sleep through the night. If he lives alone, it might be time for him to have a sitter in the evenings.
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Yes, in the early-to-moderate stages, they most certainly can be spiteful. They may not remember exactly why they're doing something, but they still know how to manipulate someone into giving them what they want, which oftentimes is attention, or how to stick it to someone and make them feel like s**t. My FIL has done both to me and my husband on myriad occasions. He did it less when he was in mild dementia than he does now that he's in moderate dementia.
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All I can say is I can relate . Sending hugs and prayers. I don’t know how long I can handle this situation with my Mother.
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Windy2022 Sep 2023
Hugs and prayers to you as well. It’s one of the toughest things I’ve had to deal with.
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Windy, your father “has not really ever been in my life and I have not spent any time with him in the past 15 years”. BUT “he would reach out to me when he needed help with something over the years which is the only way we have kept in touch”. Remember that what goes around, comes around?

Perhaps you need to ask yourself why you are now putting so much time and effort into HIM? You have no Obligation to do this, and you have no reason to feel Guilt if your don’t. FOG (fear, obligation and guilt) is one of the major reasons why our posters ruin their own lives for an ungrateful parent.

Perhaps the answers you really need are about how to walk away.
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Windy2022 Sep 2023
It’s not my job to inflict his karma on him. But it is my job to put my own karma out there. I could never sit comfortably with myself if I ignored him or pretending that he didn’t exist.
He is not the same person today that he was. I work on this in therapy every week. I know this only a temporary situation. Nothing lasts forever.
I’m fortunate that I have resources to help him and help myself. This is a trying time and I will get through it.
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Yes , it’s possible. My mother was diagnosed with narcissism and dementia . Doctor told me to expect her manipulation and spitefulness and lies that had escalated to continue because she had no filter anymore and was angry when I needed to put her in a facility because she could no longer be at home .The doctor recommended putting Mom in AL because my mother would not do anything I asked of her , hygiene , eat , change clothes . Doctor said Mom had to be taken care of by non family at that point .
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Hi, I’m not a caregiver, I’m a person with early onset, etiology still being determined. I stumbled upon this site while looking for Resources to help ME to help myself, or even a blog for people in my situation. I didn’t find it. I have found reading about your pain and suffering and how much you come to resent your parents extremely helpful. As a result, I’ve found someone else to be my Representative Payee, in fact, I’ve found someone to do almost everything else for me. Except my son insists on grocery shopping for me.
But forgive me, I have veered away from the topic….
I share this next part ONLY BECAUSE it exemplifies how the symptoms of this disease are related to the structural changes in our brain and aren’t likely personal.
I recently had an MRI done & I learned that my thalamus’s have atrophied to 4%. Along with my diagnosis of Major Neuro Cognitive Disorder, my primary Neuro doctor helped to explain & provide material with information explaining how these two issues might affect my behaviors. I’m paraphrasing the information so that it’s understandable for me;
the thalamus is like a hub that takes in information from all over our body, it then processes the information appropriately & relays it to the correct areas. It’s role in emotions: it is highly involved in processing & regulating emotions. Without the thalamus, the ability to process & regulate one’s emotions is HIGHLY unpredictable, if not highly unreliable.
How the brain is affected overall by Neuro Cognitive D/O (ie: dementia)
While I’m being tested to find out what is going on with my brain I’ve learned that;
•there are over 200 types of dementia’s
•most of them affect parts of your brain that regulate your emotions, so there WILL be changes in personality, behavior, mood swings, anxiety, & depression. This is likely NOT personal at all - but more likely related to changes in the brain’s structure.
•loss of empathy is common - AGAIN ONLY because of how the brain structure is changing
•difficulties with decision-making, problem solving, concentration, & judgment.
•poor control of impulses & temper
•reduced motivation, decreased energy
•possible hallucinations, delusions, confusion, & disorientation
•delusions & paranoia including those where the person believes that a friend or family member has been replaced by an imposter
•withdrawal from family and friends
•difficulty making & following conversations
•difficulty remembering recent events, while having good memory for past events
•difficulty with choosing what to buy & paying when shopping
•difficulty understanding time & place - getting up in the middle of the night to go to work even if they’re retired.
Etc…..
I invite those of you open to this, use this time to make sure you finish up any unfinished business. Before I knew that I had Neuro Cognitive D/O, my dad, who I had been very close to passed away, & my mom, who I’d never been able to get close to, was diagnosed with Lewy Bodies dementia. Before she progressed too far, both she & I cleared the air ; I found out that she had been angry for 15years over a misunderstanding that she never even said anything about. I got the chance to tell her what had really happened, & let her know how sorry I was for those years of disconnection. I had always been too loud, too active, too tomboy for her, but the grace in these last years was that I no longer needed her approval and so it was easy to do or say or be whatever she needed for a little bit, & it was easy to accept that she could only tolerate me for a little bit because I just didn’t take it personally anymore- to me , I now realized it was really about her. I guess that was the gift I received.
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Bubba12345 Sep 2023
You are so brave and thank you for sharing what you are going through. It means so much that we start understanding this so we can understand what is really happening. The physical is actually causing our loved ones to say or do things that seem to hurt so deeply when you are taking care of them. Lost mom 10 years ago to cancer and lewy body. Recently just lost my in laws of to cancer and dementia.I hope and pray that we can find a cure and hope it is soon. More of us should be brave and speak of it as it is happening.
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I really had't had much conversation with my aunt. She was always nice, and I know I wasn't her favorite growing up. My brother was always her favorite. She called me one day for help. And I did from that day forward. You are right, nothing lasts forever. She was kind. She was a bit quirky, but she was fun, and full of life. She was a small person, so she felt she needed to make sure she had space. My friend does that too. If I get too close she stares at me, and says what and why are you getting close to me? As she is getting older, it bothers her more... Sorry, Im off track.
If it makes you feel good that you are doing your best to help dad, then do so. you don't have to answer the phone all the time. As one friend says: You do not have to accept every invitation you get. Most people have cell phones nowadays. So put on your message: Sorry, I can't get to my phone now. When I happen to remember where I put it, I will text or call you back.. "

That's what I should put on my message. It's the truth... I have a treasure hunt every day. I have to find my phone, my house keys, and my car keys. Thank goodness the dog barks, and the cats meow. I can find those guys... Trying to figure out how to get my dog to find my keys and phone.

I know..... Just put them in one spot.... ya... but then I won't have a game to play every day of my life.... :-/ who doesn't like a treasure hunt? My hubby... Drives him nuts.

There I go again.....

Maybe it's time for him to be evaluated and placed in assisted living...
you're probably thinking the same thing about me... not yet... I know where the front door is... I'm not ready yet...
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Yes! I am learning first hand that they most definitely can be manipulative, and spiteful. Most definitely.
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