Category Archives: paranoia

Dementia and Paranoid Delusions

Over the past three years and nine months, my mother has had a few paranoid delusions. This is common in people with dementia, but I wondered what caused it.

Mom’s Paranoid Delusions

When Mom was in the hospital after her accident, she was very frightened by the hospital staff. The first time staff moved her from her bed to a chair so that she could eat dinner and they could change her bedding, she thought that the chair would tip her down a chute to the basement where she would be murdered. She begged me not to leave her alone “with these people.”

Mom has an intermittent delusion that the TV is a window through which people stare at her. This paranoid delusion also first appeared the night I spent with her at the hospital. It resurfaced when we moved her to a care home where she was exposed to daily TV after almost three years of not ever watching it. She frequently asked me why “those people” were staring in at her.  How rude!  Mom got very agitated. She even worried about me when I left because “those people” were still outside.  Although Mom has largely adjusted to the concept of TV, she will still at times express irritation that the people on TV are staring at her.

My mother also thought that my husband and I were going to kill her. That was a fun one. One day when we were returning Mom to her care home after a visit with us, I overheard her muttering in the car, “These two people coming to get me, coming to kill me.”  Now, if I had heard this during the 7 1/2 hour trip bringing her down from Livermore, I would have disputed it as a delusion because we really were just about ready to kill her. It’s not paranoia if it’s true, right? However, by this point we were long over our stress and not about to do her in. Yet at least briefly, my mother viewed us as strangers who planned to kill her.

What is it about dementia that dredges up the primal fear that others have ill intent and even mean to kill you?

Why Do Dementia and Paranoid Delusions Coexist?

Mom’s main caregiver told me that almost all of the residents with dementia in their four homes are on or have been on anti-anxiety meds. I can understand that. When you don’t know where you are or what happened 15 minutes ago, when you don’t remember you have a bedroom, when you are totally dependent on others, of course that is going to produce anxiety.

Are the paranoid delusions the extreme product of this anxiety?  Are people who have suffered from anxiety prior to dementia more apt to have paranoid delusions?

I was very curious to know and started reading articles on dementia and paranoid delusions.

Dementia and Paranoia

I found many articles about how to cope with paranoid delusions in dementia patients, but little about what caused it. In the article “Understanding Paranoia and Delusions and Some Coping Strategies,” The Alzheimer Society in Cornwall, Ontario, Canada states “that the person with dementia often feels that they have little control over their life and little insight into what is happening around them. It is often easier to blame someone else such as the caregiver for events that they do not understand.”*

Blame didn’t really seem to me to be the problem, except in regard to missing objects.  Fear did.

The article went on to attribute paranoia to misinterpretations of what the dementia sufferer sees and hears due to memory loss and visual spatial problems. Basically, “changes in the brain” was the cause.*

Well, yeah, but I still wanted to know why exactly cognitive dysfunction led to fear.  I got nowhere.

Walk in Their Shoes

In one or two posts I have likened an adult with dementia to a toddler. The need for reassurance, explanations, help with communication, and care-taking are the same.

Maybe you don’t remember what it was like being a young child. There was a lot of fear—fear of loud noises, of the dark, of being alone, of strangers, of dogs. The thin line between reality and fantasy led to fear of monsters under the bed, unknown terror in the hallway, and a host of other threats. And you knew instinctively that you were powerless and defenseless.

So consider people with dementia. They don’t know where they are or who they are with. Even if they have a roommate, they forget that they do and feel alone at night. Loud or “strange” noises (the dishwasher, the vacuum cleaner, staff clattering in the kitchen) cause them to startle. They can’t remember the other residents. The staff is more recognizable, but not completely, especially if it rotates. Who is this person dressing me, taking me to the bathroom, bathing me? Do I have a home? Where is my home? How long will I be here? Am I sleeping here tonight? Do they have a bathroom here?

Shake in Their Shoes

All this not knowing is frightening. I think people with dementia have the fears of a young child, but lack the remedy of climbing onto Mother’s lap for protection or having Dad show them there is no monster under the bed and then leaving a nightlight on and the door open.

The next time a child hears the vacuum cleaner, he can remember that Mom explained she uses it to clean. The noise still startles him, and he doesn’t like it, but at least he learns what it is. My mom asks me every single day what the noise is when the dishwasher is going or staff is preparing a meal. She does not remember. She does not learn.

You have to have memory to learn.

If a noise is that concerning, imagine how it is when you can’t learn where you are or who is there with you, or if anyone is there with you.  It is like waking up with amnesia every moment of your life.  Amnesia and something akin to paralysis if you are no longer ambulatory.  You are completely vulnerable–powerless and defenseless.  You can’t even run away.

It might make an interesting movie, but it is a hell of a life to be living.  No wonder they are afraid and expecting danger everywhere.

*Note:   (To read the entire article, click here to reach The Alzheimer Society and then search for ‘Paranoia and Delusions.’)

Related Posts

My post “Inconsistent Memory vs. Nightly Rituals” describes the frustration of trying to orient someone with dementia to their environment. It also expands on the TV delusion. To read it, click here.
For a look at the scary delusions and hallucinations someone can have at a hospital, click here to read “Irrational Desires and Hospital Nightmares.”
“Mom Stopped Peeing on Me. Thanks, Care Home” describes how I dealt with Mom’s delusion that I was going to kill her.  Click here to read that post.
To understand why I felt on the verge of throttling Mom, click here to read “Meeting Financial Challenges,” especially the section regarding the trip.
Click here  to read “Dealing with Delusions and Memory Loss” for more about delusions.

 

Mom Stopped Peeing on Me. Thanks, Care Home!

Improved Health in a Care Home

All I want for Christmas is . . ..   Sometimes it’s the small things that make you happy, like when your mother quits peeing on you. I am happy to report that there have been many improvements in my mother’s physical and mental health since we moved her out of assisted living and into a care home.

Mom refused to eat during her last week in her assisted living facility and had to be hand-fed. She is now eating full meals, albeit eating mainly with her fingers, but who cares? Her ankles were swollen and bruised and now look great. She peed on the floor and on me when she first arrived, but now manages to get all the way on the toilet before letting loose. She didn’t sleep through the night. Now she does. She didn’t understand simple instructions, but now she does.

What a difference dedicated care makes. And increased socialization.

More Flexibility for Me

Now that Mom is settled in, I go there more than I have her over at my house. That is because my swollen foot turned out to be the onset of arthritis in another of my toes so supporting Mom’s weight in and out of the car and in and out of the bathroom is agonizing. Also, it just strains and pulls muscles in my back and neck, so I end up slightly miserable for days.

However, we did have her here for Christmas and had a lovely day listening to music, chatting, napping, drinking tea and eating cookies, and having lunch and dinner. While my husband and I were preparing dinner, Mom asked if there was anything she could do to help. Ummm. I wonder what she would have done if I had asked her to set the table.

Another time when she was here for dinner, I started to take her plate when we finished. Mom put her hand over mine and magnanimously told me, “No. Leave it. I will do the dishes in the morning.”

“Oh, thanks, Mom.” I left it and simply cleaned up after we got back from returning her.

Life in the Care Home

The staff of the care home is warm, friendly, funny, loving, attentive. I love going there. It is my home away from home, and how often can you say that about a care facility? People make all the difference. I chose a home based on how I felt about the staff.  (Click here to read “Choosing a Care Home.”)

I have seen far more Hallmark movies than I ever have in my life. (Main character cannot form attachment due to some past grief, meets someone, relationship seems doomed, but then magically all is resolved on Christmas day. On to the next stupid predictable story.) I have watched my first “Ellen” show and many reruns of “Family Feud.” Daytime tv is amazing. But the jokes the staff, the five residents, and I make about the shows or even the commercials make it all fun and homey.  (Click here to read “Care Home Suprises.”

Mom is very sweet. If I leave her at the time she has dinner at her care home, she always asks if I am eating with them and tries to offer me part of her dinner. She was eating a grilled cheese sandwich with tomato soup the other night and tried to give me her sandwich.

I told her, “Oh thanks, Mom. I’ll get dinner with Fred (my husband).”

“But do you have things like this?”

“Yes. We have bread, and we have cheese.” Everyone is laughing. I announce, “She is so sweet. She would give me the food off her plate.”

This is in contrast to when she thinks I’m trying to kill her.

Mom Seems to Feel Safe in the Care Home.

I mentioned Mom’s running monologue in my late November post.  (Click here to read about the difficult trip transporting her 440 miles in  “Meeting Financial Challenges.”)  You can hear her talking, but it’s not loud enough to understand. A couple of weeks ago, we were taking her back, and she was actually talking loudly enough to hear.

Mom muttered, “These two people . . . coming to get me . . . coming to kill me.”

I decided to brave it. “Who’s trying to kill you, Mom?”

She looked at me startled.  She didn’t think anyone could hear what she says.  I let her off the hook and reverted to my usual coping strategy. “We’ll have to get Sherlock Holmes on it right away.”

Mom laughed. (Cue “Twilight Zone” theme music.)

There seems to be two parts of her personality operating—the kind, sweet, ‘normal’ one and the dark paranoid one. Makes me a little uneasy, but I know I can dodge her, gimpy as I am, if she decides to knife me in self-defense.

So I’m very blessed. No more getting peed on. I have a mother who would give me her own food. And I can outrun her if her thoughts that my husband and I are going to kill her get the upper hand.

Life is good.

Irrational Desires and Hospital Nightmares

After a night in the hospital not sleeping due to Mom’s delusions, hallucinations, and attempts to get out of bed, I am trying to adjust my expectations of life.

Expectations

It interesting the things that we decide we want out of our lives when we are children or in early adulthood. During that time in my own life, I decided I wanted one of my parents to die a natural death. My father hadn’t, so that left my mom.

Although dementia is a natural disease, the way my mother got it was not via the usual normal slow progression.  Instead, it was the result of an event—an accident, which was not my mother’s fault.  However, it constituted a medical event that catapulted her into dementia. One week she was bright, witty, and articulate except for the occasional search for a word (the same way I struggle at 27 years younger than she). The next week, she was in the hospital after almost dying and not herself any more. Her accident caused an acute stage of rhabdomyolysis (muscle breakdown). Her creatine kinase levels were 4,000 times what is normal. Mom was therefore in a cardiac ward.

Hallucinations, Delusions, and Confusion  

When I stayed overnight with her in the hospital, she was hallucinating that there were cats playing by the foot of her bed. She also had delusions.  One was that the tv was a window through which people watched her.  Another was that the hospital hallway was a place she regularly walked down to listen to people singing in a choir.

Mom was confused and didn’t know me.  She thought I was a stranger, her mother, my sister. Mom asked if I had children, how the weather was where I came from. She was very polite as she clearly attempted to make conversation with a new acquaintance who just happened to be her daughter. Then she started calling me “Mom.”

A Sliver of Logic

Mom asked if her kidneys were okay. She remembered that her doctor had had her go to a class related to kidney problems. Mom was worried, and I thought somewhat logical in suspecting that was why she was in the hospital. She wanted to know truthfully, did she have what her mother had — cancer of the kidneys.

Paranoia  

Mom was paranoid.  The staff got her out of her bed and into a chair for dinner while they remade her bed.  Mom thought that the chair would tilt and drop her down a chute to the basement where people would murder her. She clung to me and begged me not to leave her there.

Loss of Basic Skills

Mom couldn’t feed herself, so I tried to feed her something. She had been days without food or liquids. She kept doing weird things with the food and the utensils. Even eating with her fingers didn’t work. Mom just didn’t understand what she was doing, and her hand-eye coordination didn’t work at all.

Hospital Nightmare

The night was an eternity. Mom had been through a horrible ordeal and was up until about 3:00 a.m. the night before after the EMTs brought her to the hospital. I thought that surely Mom would sleep fairly well. At 8:00 she did fall asleep, and I darted downstairs to get something to eat for dinner. I hadn’t eaten since breakfast. The cafeteria was closed. I got something out of a vending machine. I can’t remember what. I was back up at 8:10 to find Mom with her legs dangling over the side of the bed, her gown around her waist. “Help me. Help me,” she whimpered.  She had tried to get up.  She simply could not remember that she could not stand.

From then on, we were caught in a cycle.

Step One

Mom frequently wanted to go to the bathroom. It was difficult even with help from staff to get her up and to the commode. She couldn’t stand on her own. Mom clutched me, whispering desperately, “Don’t leave me with these people.”

The staff was bitchy and annoyed with her for thinking she needed to go to the bathroom so often. They made comments to each other as if she wasn’t there, as if her feelings didn’t matter. “Oh, she just thinks she has to go.”  They were not happy when we finally got her onto the commode only to find she really didn’t need to go.

Their faces revealed their annoyance, as well. I wanted to slap them.  After over two days of being on the floor, lying in her own urine and feces, it didn’t seem odd to me that Mom wanted so much to get to a toilet of any kind.  I wanted to yell at them to have some compassion or to at least consider that this was part of their job.

Step Two

The next step in the cycle was Mom eventually falling asleep again. But never for long.

Step Three

Then, five or ten minutes later, I could see her legs start to kick the blanket off, and Mom would try to get out of bed.  I had to watch her continually so as to stop her.

And Repeat

Then Mom would ask to go to the bathroom again. Back to Step One.

Finally around 10:00 pm, I begged the hospital staff to watch her so that I could at least go to the bathroom. (Wanting to pee is a family trait, I guess.)

This cycle went on and on. In spite of her ordeal, Mom never slept for more than five or ten minutes at a time that night. There was no sleep for me. Around 5:00 a.m. she actually slept for 45 minutes straight, but I couldn’t relax enough to do the same. Of course, I kept waiting to see her legs start to kick the blanket off again.  I was in the same clothes for 34 hours before I could finally shower and change that evening. I’m too old for an all-nighter, especially one so stressful.

It was a nightmare, but a nightmare for both of us. I cannot convey how distressing it was. As I said, Mom had no cognitive concerns pre-injury, and now she was completely . . . out of her mind?

Expectations Unmet  

So, what I’m getting to is this: My mother was robbed. There was a mugging, and Mom was robbed of herself. I feel robbed.  I just didn’t think it was too much to ask that one of my parents die a natural death. But I guess it was. I can’t believe how disappointed I am. It’s as if I somehow expected the wish I made over 40 years ago would just have to come true. I’m trying to get over this feeling of self-pity and betrayal.

I had no right to expect I’d get what I wanted. Living in America, I am privileged. My country is not ravaged by civil war or by out-of-control disease and poverty. If I stay out of a gang, take certain precautions about where and when I’m out and about, don’t drive under the influence, drive defensively, and don’t carry toy pistols in my pocket, I have a degree of expectation that I will be safe. How did this happen?

It was an accident, and accidents happen. I know this, and yet I’m feeling so sad and betrayed. I think I was stupidly naive to want what I wanted.

For just a few of related posts from this blog, click here for “Dealing with Delusions and Memory Loss,” click here for “Inconsistent Memory vs Nightly Rituals,” and click here for “Meeting Financial Challenges, especially the section entitled “The Trip.”

 

Hide and Seek, The Dementia Game

Hide and Seek was a fun and exciting game when we were kids, but now not so much. Our current version goes like this—Mom hides objects (usually her wallet or her apartment key), and my sister who lives closest to Mom searches high and low for them. The rest of us receive emails like this:

“She has turned into the Easter Bunny who loves to hide her precious eggs—her wallet, jewelry box, money, keys.”

Another time—“So, this weekend I searched for keys, glasses, and wallet. Found all three, and $20 stuffed at back of her undie drawer. Got to laugh.”

After a while though, it became less amusing.

The Game

My sister soon caught on to Mom’s favorite hiding places just like when you were a kid, you knew that your younger sibling tended to always hide in the closet or behind the drapes in the living room. At various times, my sister found Mom’s wallet hidden under clothes in the dresser, shoved in the bookcase, or under her pillow. One day, she looked in all the usual places to no avail. Getting irritated and frustrated, she then branched out, searching all over Mom’s apartment, including in her walker and even in the refrigerator. Still no luck.

Frustrated and out of time, my sister got our mother up out of her armchair to head down to the dining room. Just to be thorough, she lifted the chair cushion. Yep. There it was. My mom had been sitting on it all along.

I think my sister was internally blowing her top. She confiscated the wallet and took it home with her. “I now have her wallet as she is getting better at hiding with each visit. So, if she says she is missing her ‘purse’ or says that someone took something, you will know it is her own doing or that I have it and you can reassure her.” I applauded my sister’s self-defense measures. Problem solved.

Level Two

The keys presented a different problem. Mom had an apartment key and a mailbox key. My sister confiscated the mail key early on, but Mom had to maintain possession of her apartment key. Frequently Mom thought she’d lost the keys, but had merely shoved the plastic bracelet they were on so far up her sleeve that she couldn’t find it. It wasn’t unusual to experience what my second sister did during a visit. “When I got her for lunch, she said she couldn’t find her keys and was looking all around for them. They were on her wrist!”  (For an example of how Mom losing her mail box key complicated life, click here to read “Immigrations and Dementia.”)

If the keys weren’t actually on Mom, there were some other obvious possibilities. Sometimes, in taking off her shirt the night before, the keys came off with it. A quick search in the hamper or amongst the clothes by her bedside usually turned up the missing key. And sometimes not. Then it was check the walker, check her dresser, check her bedside table, check her armchair. The key generally turned up. “She lost her key again this week. I found it in a drawer.”

However, as with her wallet, Mom seemed to get better at hiding the key. Over a year ago, we started receiving emails from her assisted living facility. “Your mother has lost her key. We searched her apartment on Monday to no avail and as of yesterday they are still missing. Please contact us regarding a new set.”

My sister dutifully went in and hoped to find them. Most of the time she did, but sometimes they were not to be found. “After 45 minutes searching today, I gave up.” My sister let us know that she could order a new set at a cost of $25.00 from the facility, “but given how frequently she loses them, I’d like to wait a week or two to see if it surfaces. I have ordered four sets so far. I’m thinking an implant might be a good idea. If she can just scan her forehead to open the door, then I think we are good!”

This went on and on, with all of us frustrated with the situation and the unnecessary mounting cost. And then the day came when Mom got to the point where she needed help with all her transfers due to her fall risk. The responsibility of the key fell to her aides. It’s an ill wind that blows no good. Another problem solved.

The Tissue Issue

So, with no wallet or keys to hide, Mom moved on to hiding tissue boxes. I know. Huh? You have to understand that tissue is very important to Mom as her nose is running daily even though she is not. My sister once found four boxes hidden under her armchair as if they were golden tickets to Willy Wonka’s chocolate factory. My sister sent out another venting email. We joked about gluing boxes to the walls of her apartment.

My brother put the problem in perspective, “I don’t see losing Kleenex as an issue since she usually has half a box stuffed up her sleeves.”

Good point, but Mom worries about her lost treasures.

Hide and Seek, Solitaire Version

As annoying and time consuming as Hide and Seek is, it is occasional and nothing compared to Mom’s internal version of the game. Instead of objects, she loses and hunts for her memories. Playing Hide and Seek with your memories is absolutely no fun at all, and increasingly she is unable to find them.