Tag Archives: delusions

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.

 

Dealing with Delusions and Memory Loss

Every now and then, I share something going on with my mom, such as increasing delusions or nearly complete loss of short term memory. I am sometimes asked, “How do you deal with it?” The first thing I say is that I write about it. I have this blog to help me express and share my feelings and experiences. I always found that putting something down on paper helped me process and understand it. Otherwise, it just ping-pongs around my brain without any resolution. But there are other strategies that I find I unintentionally use.

Accept the Change of Roles.

By the time a parent suffers from dementia, most of us have related to our parents as peers for a long time.  (Well, maybe we change our language a little bit.) It is sad to experience a parent losing memories, being confused, and having delusions, but it is not threatening. I am not a confused insecure child with a parent who, for example, has mental health issues that are scary to me. A child does not understand what is going on and is not equipped to take care of the parent, although he tries to do that very thing.

As an adult, I can easily move into the caregiver role just the same as most people do as their parents age and become increasingly dependent. The parent with dementia becomes much like a toddler.  They need a lot of reassurance, care-taking, help with communication, soothing from fears, and explanations of what is happening at any given time. All this is done with love and respect for the person inside.

Delusions: Don’t Panic!

It is important not to think that every downward step is here to stay, that this is how it will be from now on.

Earlier this week, my mother asked me, “Have I told you what has been going on here for the past two weeks?”

She then went on to tell me that a group of people from England were staying with them.

“Oh, how nice,” I responded, thinking she was viewing her fellow residents in a favorable light.

“No, it isn’t,” she retorted.

She went on to describe how odd these people were because they never left, except for one man. Mom seemed somewhat incensed that tourists would never leave the house, that they were eating all their food, that they never spoke at dinner time, and that they expected the staff to just take care of them.  However, her biggest outrage was reserved for the fact that these tourists had given no one any idea of how long they were staying!  How rude!

This was an obvious delusion which held fast regardless of my questions as to where these supposed “tourists” slept, what the staff said about the situation, and other logical responses.  I could just imagine staff being non-committal as Mom asked when the other residents were leaving. LOL.

Mom repeated the story three times as I responded, asked questions, commiserated with her regarding the ‘situation,’ and offered some explanations.

But, there hasn’t been a word about it since. That doesn’t mean it won’t come back. It, or something quite similar, may very well resurface at a later date.

However, that night I didn’t go home thinking, “Oh, god. Now she’s perceiving her life this way, and that’s how it’s going to be from now on.” Instead I thought, “Well that was interesting. I wonder how she’ll be tomorrow.”

And ‘tomorrow’ and since, there hasn’t been another word about it. What I’m saying is, you cannot depend on consistency, so there is no reason to panic and think this is the new normal.

Find the Humor.

Humor is always an excellent coping skill for any situation. It is in both our personalities that my mother and I laugh a lot about annoying situations. It is so good for her to laugh, for me to laugh, for us to laugh together. We speak for the resident cat as we imagine what she is thinking. We make jokes about ourselves. In our opinion, we are hilarious. This keeps Mom in a good mood and definitely helps me “deal with it.”

Enjoy This Time.

Would it sound odd if I told you that I really enjoy this time with my mother?

For the most part, we talk about what went on today which allows Mom to respond with her natural intelligence, ask appropriate questions, display her personality, and see the humor in even frustrating events.

I am more relaxed around her now than I have probably ever been in my life. In the past three months, my relationship with her has improved enormously. I used to be a bit nervous and frequently had to make allowances/excuses for her comments or behavior based on what she went through in her life.  Now, I thoroughly enjoy being around her. She is consistently sweet, something I am not used to.

This is a healing time for our relationship. When she dies, I will feel much differently than if she had died three months ago before I had this opportunity for daily contact. This time is a gift to me. I don’t visit her every day because I feel I have to. I visit her because I enjoy being with her. If she changes and becomes combative and difficult, I still will have this time to remember.

So that is how I am dealing with ‘it’ (delusions, loss of memory). I’m aware that some of these strategies may not work at all stages of dementia, for everyone, or when the relationship is different—a spouse, a friend, a sibling. My mother is three and a half years into this disease. I don’t know what the entire journey is going to be like, but this is where we are right now.

Because this entire blog is about dementia, many posts cover delusions and memory loss.  For just a few related posts, click here for “Inconsistent Memory vs. Nightly Rituals.”  Click here for “Mom Discovers I am Her Daughter.”  Click here for Creative Conversations,” and click here for “Happy Birthday to You: Birth and Death.”

 

Inconsistent Memory vs. Nightly Rituals

I always thought that dementia sort of followed a general path. Longterm memory stayed the longest. Short term memory went, and everything in between was up for grabs. I’m finding out that it is not quite that simple.  I have found with my mother that there is inconsistent memory–sometimes there, sometimes not.  There are also consistent memory lapses that become nightly rituals.

Inconsistent Memory

My conversations with Mom generally go pretty well, albeit with several explanations and helping her with (or guessing) her intended responses.  However, I have to be prepared for the shifting of understanding from one day to another–the inconsistent memory. For example, some days she thinks she is in England. Other days she knows she is in the States.  (Click here to read “Continental Drift.”)  Some days she has the delusion that the people on TV are looking in through a window at her. Then occasionally she knows it is simply TV. It is that inconsistency that intrigues me.

Nightly Ritual #1

However, there are certain things that never change in her mind, resulting in a nightly ritual that we follow.

Mom is completely unaware of her current surroundings and the people she spends her day with. The two male residents in her care home spend the day in their bedroom. The four ladies spend the day in the living room, sitting in their own particular recliners. It is not a big room. If I pull up a kitchen chair next to Mom, I can touch ‘Betty’ in the next chair.

I visit every night after their dinner.  This time was suggested by the staff so that Mom can stay up later, and we can have an easier conversation on our own. Mom is already dressed for bed and sitting in her wheelchair instead of in her recliner.   This puts Mom next to Betty’s chair-side table. Every night Mom asks me about the two photos on that table. Every night I explain who the people are. Betty is in both.

“Who’s Betty?” My mom asks.

“Betty’s the lady who sits here.”  I indicate the recliner next to Mom.

Mom is trying to conjure up the woman who sits by her every day without success.

“Your roommate,” I try.

Mom’s expression becomes even more disbelieving. “I don’t have a roommate,” she retorts. “What do they call her? I’ve never heard ‘Betty.'” She’s annoyed and going to put me in my place.

“They call her Betty, Mom.”

“Oh.”

Every single night. I even turn the photos away so Mom can’t see them. She picks them up anyway.

Nightly Ritual #2

The other part of the ritual is:

“Suzanne, do you know if there is a toilet here?”

“Yes, it’s the first door down the hall.”

“The hall?”  I point behind her and she turns around searching.  “Do you have to go to the bathroom, Mom?”

“Yes, honey.”

“You were just coming out of the bathroom ten minutes ago, Mom, when I got here. Are you sure you have to go again?”

“Oh, I—”

“Or do you think you could wait until right before bed?”

“Okay. Yes, I can wait.”

Nightly Ritual #3

And that, of course, leads to the next part.

“Where am I sleeping tonight?”

“In your bedroom.”

“I have a bedroom?”

“Yes, it’s down the hall.” I’m pointing again.

“Down the hall?” She’s looking again.

“Yes. ‘Teresa’ and ‘Sarah’ have a room. ‘Dave’ and ‘Jim’ have a room. And you and Betty have a room.”

“Oh.”

“Do I have . . . ?” She points at her body.

“Your pajamas? Yes, all your clothes are there. You’re already in your pajamas.”

“Oh.”

She doesn’t believe me. She’ll never believe me. We do this every night, but she doesn’t recall any of it. Nothing about the hall is familiar to her, and she doesn’t remember Betty is sharing her room or even what Betty looks like. (No need to pay for a private room, people.)

Nightly Ritual #4

By this time, the rest of the residents are all in their beds. The staff are getting ready for the next day, preparing meds, doing whatever breakfast prep they can do in order for things to run smoothly in the morning. In the course of time, chopping or stirring sounds come from the kitchen.

“What is that noise?” Mom asks with concern.

“That’s Anne getting breakfast ready for tomorrow. She’s in the kitchen.”

“There’s a kitchen?”

“Yes,” pointing yet again. “Right next to the dining area.”

“The dining area?”

(I’m screaming inside, patient outside.) “Yes, that’s the table you all sit at.” I’m pointing again. It’s literally ten feet away.

She’s peering at the table. For her, it’s the first time she’s ever seen it although she sits there three times a day with the rest of the residents.

Nightly Ritual #5

More kitchen noises.

“What’s that noise?”

(Aggggggh!!) “That’s Anne cleaning up the kitchen.”

“Who’s Anne?”

(Give me strength.) “She’s the main lady here who takes care of you. You like her very much.”

“Oh.”

Every night. We go through Rituals 1-5 every night. So, when the night comes when she asks, “Why are those people staring at me through the window?” it’s a welcome variation.  I can leave wondering why her concept of tv changes from day to day instead of focusing on the frustration of the nightly rituals.

And no, it doesn’t help that I’ve pulled the drapes and there are no windows uncovered. That would require logic. Something in short supply these days.

 

For other posts related to memory, click here to read “Mom Discovers I Am Her Daughter,” click here to read “Continental Drift (Where Am I?),” and click here to read “Dealing with Delusions and Memory Loss.”)

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.”

 

Swiss Chalet, a Sweet Delusion

If you’re going to have a delusion, make it a sweet one.

My mom told my sister recently that she bought a chalet and that when she got fed up with being in her assisted living facility, she now had a place she could go to escape for a while. I can imagine my sister’s dismay, intellectual curiosity, and restrained amusement at this new delusion of my mother’s. Mom went on to say that she bought a second chalet, as well, so that when we all came to visit, we would have a place to stay.

That is so sweet of her!

This is so bizarre, though. I mean why would Mom buy a chalet? A nice English cottage I could understand, but a chalet? It makes no sense at all.

Okay. Maybe you think I should be more concerned that Mom is buying imaginary properties with imaginary money, but that’s really not the perplexing part of the delusion for me.
You know how you have dreams at night that make absolutely no sense at all? You wonder where on earth they came from? And then other dreams actually do seem connected to your day, something you’ve been worried about, or something you saw on tv or read about?

Well, another delusion of Mom’s is that she consistently thinks we are in Vallejo, California when we are not. That delusion makes sense to me.  She liked visiting General Vallejo’s house. But a chalet? Where did that come from? It’s not like Mom’s very poor London family sent her off to a posh Swiss finishing school in the middle of World War II.  And I don’t see many chalets around California where she lives now. So where did it come from?

The brain is a mystery whether it is crazy dreams, illusive memories, odd thoughts, false perceptions, or the hidden corridors of dementia. I don’t know why, but somehow there is a Swiss chalet in my mother’s brain.

For a related post, click here to read “Upside of Dementia, I: New Relationships.”

Creative Conversations

Are you a stickler for facts? Oh, dear. You are not going to have a good time. This is the time for flexible reality and for creative conversations.

Your mother thinks every time you take her out that she is in some other town? And, it’s always the same town? And you have told her a dozen times, “No we’re still in (her hometown)”? Give it up. Instead, try thinking, “Isn’t that great. She loves that town and I just saved a lot of time and gas getting her there.”  Ask her why she likes it so much. If you ever went there with her, reminisce. Bring up other places you have visited together or apart. You might find out some very interesting stories about places that are in her long-term memory.

Your father insists that an empty lot in town or the lawn outside the restaurant is where the car races are held?  Wonderful! It doesn’t matter that no car race has been held in town ever. For some reason he thinks they have been. Who are we to set him straight? Express interest. Ask what kind of cars. Transition to stories about cars and car trips in your family.

Your sister says that she doesn’t have a place to sleep, and she tries out the various empty beds in her assisted living facility. She tells you that each one has a different view. Don’t bother pointing out that she has her own apartment there and always sleeps in the same bed. Appreciate the variety and the adventures that the facility “offers.” How nice. Which bed does she like? How are the neighbors?

Your friend asks you the same question five times in a fourteen minute conversation. Don’t get distressed or annoyed. Figure out how to answer it differently each time. It’s an interesting challenge. I always think, “What if she realizes if I answer the same way that she already asked and forgot?” I don’t want to embarrass or distress her. Improvise, elaborate, give a completely different answer. You’d be surprised how many ways you can answer the same question.

Think of all conversations as a creative writing assignment or an improv exercise. It’s good for you. Keeps your mind alert. Keeps you young. And it makes for interesting conversations. You never know what you may learn if you let the conversation flow instead of correcting every dubious statement.

Note: For great suggestions regarding communication strategies, including confabulation, see “Confabulation in Dementia: What Is It and How Should You Respond?” by Esther Heerema, MSW in the Communication Strategies section at verywell.com.

For related posts from this blog, click here to read “Confabulation Can Be Wonderful.”  Click here to read “Dealing with Delusions.”