Category Archives: the mind

What Type of Dementia Is It?

When you mention that someone has dementia, the first assumption people generally have is that it is Alzheimer’s disease. However, there are several possibilities as to what type of dementia a person has. Not all are easy to diagnose or differentiate. This leaves us all with some confusion when trying to understand or even talk about what is going on.

Dementia: Is It Alzheimer’s?

To date, Alzheimer’s can only be diagnosed with certainty after death by examination of the brain. However, there are certain ways symptoms progress that lead physicians to conclude a person most likely has Alzheimer’s disease. Hence, the informal diagnosis of Alzheimer’s in someone still alive.

There is much current research with the goal of being able to diagnose Alzheimer’s while a person is still alive. Our population is aging fast and cases of dementia are on the rise. Therefore, such a discovery is high on the list of priorities in medical research. Until that discovery happens, what do we know?

The Types of Dementia

The Mayo Clinic  lists various types of dementia.  They are Alzheimer’s, vascular, frontotemporal, and mixed dementia, as well as dementia with Lewy bodies.  Then, there are the additional disorders with a large dementia component, such as Parkinson’s.

Note: Someone can have some of the symptoms of dementia due to other disorders, such as substance abuse or major depression. However, here I would just like to focus on dementia independent of other “temporary” causes.

Differences in Symptoms Per Type of Dementia

Again, per the Mayo Clinic, the following progression of symptoms help determine what type of dementia a person has.  Clearly, there is a lot of overlap.

Alzheimer’s Disease:  Memory loss of recent events gradually progresses. Language difficulties, impaired judgment, and mood changes are common. Rarely occurs before age 65. (See below for more detailed information regarding the stages of Alzheimer’s.)

Vascular Dementia: Onset is abrupt, caused by a large stroke or a series of smaller strokes. In comparison to Alzheimer’s, memory loss is generally milder and physical disability is worse. Repeated strokes cause additional brain damage.

Frontotemporal Dementia: Personality and behavior problems are usually the first symptoms to appear. Memory loss happens later. Usually occurs age 40 to 70. (The December 2017/January 2018 edition of AARP magazine describes this disorder.  Read this very sad article, “What Happened to My Husband?”)

Dementia with Lewy Bodies:  Concentration problems and disorientation are usually the first symptoms. Visual hallucinations are common. Active symptoms can alternate with periods of apparent normalcy. Stiffness, tremors, and slowed movement may develop.

Mixed Dementia:  A triple whammy of the symptoms of Alzheimer’s, vascular dementia, and dementia with Lewy bodies.

Additional Causes of Dementia

Huntington’s Disease:  Severe decline in thinking is the hallmark symptom.  Age 30-40

Parkinson’s Dementia:  Symptoms mimic dementia with Lewy bodies. However, the problems with body movement begin a year or more before there are cognitive difficulties.

Creutzfelt-Jakob Disorder:  There is rapidly worsening confusion, disorientation, and problems with memory, thinking, planning, and judgment. Depression, mood changes, difficulty walking, muscle stiffness also mark this disorder. Rare. Age 60

Traumatic brain injury:  Signs are memory loss, depression, explosiveness, impaired speech, and slow movement. Symptoms can show up years after the trauma.

Primary progressive asphasia: Impaired speaking and language are the primary symptoms. Short term memory is usually not affected. Age 50-70.

Further Complications

To make things even more complicated, symptoms of Alzheimer’s or dementia with Lewy bodies, for example, can be accelerated by eventual strokes in the elderly.

Also, there are ways dementia can be brought on that affect the progression of symptoms. For example, a medical emergency can abruptly bring on symptoms, effectively skipping the early stages of dementia.

The Stages of Alzheimer’s Disease

Because Alzheimer’s is the predominant label we hear, it may be helpful to know how the National Institute on Aging (NIA) describes the stages of Alzheimer’s.  (See “Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging.”)

Mild:  There is some memory loss, and small changes in personality. The person may not be able to solve simple math problems or may lose the ability to plan and organize.  For example, making a grocery list and then being able to find the items in the store may become impossible.

Moderate:  At this stage, there is more obvious memory loss and confusion, more trouble organizing, planning, and following instructions. The person may need help getting dressed, start having problems with incontinence, and have trouble recognizing family members and friends. They may not know where they are or what day or year it is, become restless, and begin to wander. Repeating movements late in the day and having trouble sleeping are common. More serious personality changes may include making threats, accusing others of stealing, becoming physically aggressive, cursing, screaming, or grabbing things.

Severe:  The person needs help with all daily needs. They may not be able to walk or sit up unassisted, not be able to talk, and often cannot recognize family members. They may have trouble swallowing and even refuse to eat.

The NIA describes these stages as Mild, Moderate, and Severe.  However, you could also describe them chronologically as Beginning, Middle, and End stages.

So, What Type of Dementia Is It?

Yes, it might be Alzheimer’s, but it also could be one of the other types of dementia listed above. Yet again, it could be dementia of a type and due to causes that we just don’t know about yet. We are living longer now. It is not strange that our brains, as well as other parts of our bodies, are showing wear in new and sometimes inexplicable ways.

Dementia and Grief, Part I

Dementia and Pre-death Grief

When a loved one has dementia, grief starts long before death. It seems that you lose that person bit by bit as memory is lost bit by bit. Every step down that road is a loss. They are not the same person. If it’s a parent, first, they don’t remember your adulthood. Next, your childhood is forgotten. Then, they might not remember you at all.  If it’s a spouse, a sibling, or a friend, your entire relationship may end up forgotten.

What Exactly Is Lost?

When my mother was hospitalized after her accident, it took us a while to discover how much of her memory was lost. She was disoriented, delusional, and hallucinating in the hospital. It was clear she didn’t know how to eat. It was also clear that she didn’t remember she was too weak to stand because she kept trying to get out of her hospital bed.

Somewhere along the way, as Mom stabilized and started to heal, we realized she had lost ten years, including the eight years she lived with my sister and brother-in-law. Because that was not an easy time for my sister, the fact that Mom couldn’t even remember it was a big blow.

Through conversations over the next month or so, we discovered that Mom didn’t remember at least the past thirty years. Putting it into selfish terms, that is over thirty years of your life that your parent doesn’t remember. Given that I was sixty-one at the time, that was at least half my life, almost all of my daughter and son’s lives, and all of my two grandson’s lives. Wiped out.

I became afraid to ask what, if anything, Mom remembered before that. I still don’t know if she remembered anything of our childhood. There were very important life events in her adult life and in ours that I never had the courage to ask about. I didn’t want to distress her.  I didn’t want to distress myself.  We just lived largely in the moment and in her memories of her own childhood.

Extended Grief

So, depending on how fast the dementia progresses, there’s months or years of loss and grief before death. With a physical decline, a person is for the most part still there, still present. With dementia, the brain—that which makes a person that person—is progressively lost. It’s a very strange disease, distressing and confusing for the patient, frightening and full of grief for the helpless family. It is different from anticipatory grief.  It is active prolonged grief.

Sundowning and Dementia

Recently Mom has exhibited increased agitation and anxiety especially at night. When symptoms increase at the end of the day, doctors refer to it as sundowning.

Mom’s Symptoms of Sundowning

Previously, Mom went to bed around 6:00 and slept through the night.  Now instead, she talked to herself until 10:00, repeatedly wadded up her blankets, called for staff several times during the night, maneuvered herself sideways in the bed or scooted up against the headboard until her neck was cranked. Overnight staff repeatedly repositioned her and settled her. For the first time, she fell out of bed.  The second time it happened, it became clear she was trying to get out of bed, forgetting that she couldn’t stand or walk.

I consulted with Mom’s doctor who prescribed a sedative commonly used for sundowning in dementia. It would calm Mom and make her sleepy, theoretically anyway.

The Effects of Sundowning During the Day

All this activity during the night naturally resulted in increased napping during the day.

My visits with Mom deteriorated to five or ten minutes of conversation at some point in the two-hour visit, or none at all. The rest of the time, she was deeply asleep. Occasionally, she talked to herself in her sleep. The snippets I could hear over the tv music channel were “She didn’t have that on her,” an annoyed “Don’t look at us” as if she was talking to staff, and a complaining “She comes in and sits down and gets up and leaves.” I wondered if she was referring to me.

A Related Complication

A few days during that three-week period Mom was actually awake and alert. It was then, I discovered that even during the day she no longer understood that she couldn’t stand or walk. During my visit, she tried to get out of her recliner three times. I watched her scoot herself forward until stymied by the challenge of the footrest.

“Do you need something, Mom?” I asked.

“Oh, I was just wondering what we have for dinner.”

Since that was my first experience of Mom attempting to get up, I thought it was an aberration and joked, “Oh, a little bit of this added to a little of that.”

She laughed and sat back.

The second attempt came about twenty minutes later.

“Do you need to go to the bathroom, Mom?”

“I thought I’d turn the oven on.”

Okay, so now I understood she was truly concerned about dinner and thought it was her responsibility to provide it. So this time I answered her seriously.

“I think Alice is getting dinner, Mom.”

“But does she have enough for . . .”  Mom gestured around the living room where three of the other residents were sitting.  “ . . . all of us?”

“Yes, she is cooking dinner especially for all of you.”

“Oh. Well, that’s nice of her.”

I thought I would put her mind further at rest by actually going to the kitchen. I told Alice that Mom was trying to get up to help with dinner, and that I was just trying to settle her mind by checking on it. Then I returned to the living room with the affirmation that indeed Alice was making dinner and all was under control.

Less than ten minutes later, Mom made her third attempt. What now, I wondered?

“What are you trying to do, Mom?”

“I thought I’d set the table.”

Oh, great.  “It’s too early Mom. It’s only 2:20. It’s more than an hour and a half before dinner.”

Before I left, I let Cassie also know that Mom was trying to get up. Cassie promised to keep an eye on her.

Ready for Another Solution

At the end of the three-week trial, we all agreed the sedative was not working, and I sent an email to her doctor with the report, which was basically “no improvement.”

The doctor has other possible solutions.  I just hope we don’t have to go through too many before finding one that helps.  I miss being able to spend time with my mother awake.


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.


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.”


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.”


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

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


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.”


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.”)

Continental Drift (Where Am I?)

Memory is an illusive thing, and when you visit assisted living facilities or care homes, you get used to residents not being quite clear on where they are or where they go on any given day.*

One of Mom’s fellow residents thinks the care home is her own home and that everyone else is visiting. There is nothing in her memory telling her that she moved here to receive the round the clock care she needs.  The staff jokes that they are the maids.

Another resident thinks I can drive by her house to check on it and does not remember that it was sold long ago or that she is not in the same city.

Where Does My Mother Think She Is?  

We moved my mother some 440 miles away from where she has lived for fourteen years to a care home near me in Southern California over the Thanksgiving weekend.  Ever since, my siblings and I have all been wondering what Mom understands about where she is. Although I’ve explained it to her many times, it doesn’t stick in her memory.  A conversation I had with her the other night was somewhat illuminating.

We were talking about her brother who spent Christmas holiday in Scotland with his granddaughter and her baby.  Mom asked me, “How would you get from downtown London to here?”

“Well, you would have to take a plane to either San Francisco or Los Angeles and–”

“A plane?”


“Well, yes, because we are in a different country, and you would have to fly across the Atlantic to get here.”

Mom is looking at me as if I’m mad. This information is obviously not what she expected.

I soldier on. “And then it would be a matter of renting a car to drive to here.”

“Oh. What does it cost?”

“Oh, gee. I don’t really know right now.”

“Well, what do you pay?”

“Mom, I’ve only been to England twice in my life, and the last time was about thirty years ago.”


At this point I think, what does it matter? Say anything. “Maybe 800 dollars or so?”

“Oh, well. That’s not going to work,” she says looking disappointed. I suspect she was envisioning a bus ride, and I have burst her bubble.

It seems Mom thinks she’s in England and has been planning an outing either for herself or for her brother so that they can get together.  I can now tell my siblings Mom thinks she is in England.  (And here we were just wondering if she understood she was in a different part of California, not if she knew which country she was in.  Boy, were we way off!)

Memory Loss:  No Passport Needed

The very next night I tell Mom about an article I read about how to stay warm at night without a huge heating bill. I describe the various suggestions, including adding curtains to windows that just have blinds or wearing a nightcap. Mom does not remember what a nightcap is so I try to evoke illustrations of “The Night Before Christmas” or A Christmas Carol. Nothing registers with Mom. I try the women’s version of the mop cap which seems to trigger her memory. I then confide that I cut off the toes of single socks and wear them at night over the sleeves of my pajamas and up over my wrists.

Mom likes that idea and suddenly comes out with, “Well, yes. People think it’s warm here in the States, but it gets cold.”

I am so impressed. Tonight she knows what country she is in.

In the space of 24 hours Mom has placed herself on two different continents. I’m wondering if she’s on to something. Maybe this is Pangea coming back to us, making crossing an ocean unnecessary. Or, as close to the “Star Trek” transporters as we are going to get. Whichever, it is a very exciting prospect and definitely lessens the importance of an unreliable memory and remembering where you are.

*Click here to read “Swiss Chalet, a Sweet Delusion” which describes Mom’s belief that she had bought two chalets and went to one when she got tired of the assisted living facility.

For other posts related to memory, click here to read “Dealing with Delusions and Memory Loss” and click here to read “Inconsistent Memory vs. Nightly Rituals.” 

Happy Birthday to You: Birth and Death

Birth and Death  

Soon my husband and I will be making the 7-hour drive upstate to visit my mom, sisters, and brother-in-law. This visit is timed to celebrate Mom’s birthday. She will be 92 years old.

I am leery of this event because people tend to die after birthdays as well as after the very important winter holidays. That being said, I’m not sure that my mom is even aware that her birthday is coming up or that it would mean much to her even if she were. I started mentioning it to her last month, and I know my siblings have been doing the same as we make plans for the family get-together and celebration. However, Mom forgets. I’ve never had her ask me what month it is, just what day of the week, and since she can’t even remember her last name, I don’t know if she knows the month of her birthday any more. We can take less and less for granted as time goes by.

Unfortunately, there is another reason I am feeling superstitious. A few years back one of my sisters asked me how long I thought Mom would live. I don’t know why, but I responded, “92?” Ever since, I have geared myself up for this coming year to be the one in which she dies. It’s magical thinking with no basis in rational thought, but there it is looming in my brain. So it shouldn’t be surprising that I have spent more time than usual lately thinking about her death and what we will do.

Planning for Death and Grief  

Mom belongs to the Neptune Society, so there is no wondering about burial versus cremation, but what about the rest? Will we have a memorial service? Who would come? Who is left? Would we speak? I have nothing to say. (Don’t be snarky! I mean at a service. Obviously I have a lot to say or I wouldn’t be writing here on this blog where I seem to be more open and honest than anywhere else. But I digress—)

There is no church any more, so no minister to call on. Will we simply gather as a family? Have our own private wake? Stare at each other in exhaustion and dismay that here we are at another weird parental death? Drink with dedicated determination until we are either completely anesthetized or finally completely emotional and vulnerable? God, I hate that—being emotional and vulnerable. I like to hold myself tightly together and not break down in front of anyone. Maybe I don’t have to worry. At this point, my bitterness would probably block any access to grief.

But we all know that doesn’t work in the long run. The grief, like truth, is going to find its way out even if it’s only in bits and drabs over the course of years. Much healthier to use the rituals that accompany death to express feeling. That’s what they are for. But I’m not a healthy griever. Too much anger. Too much bitterness.

So I’m thinking that I need to have some discussion with my siblings while we are there as to what we plan to do when Mom does die.

A Birthday Present from Immigrations  

On a lighter note (Whiplash warning! Probably should have worked up some kind of transition here.) Mom has received an early gift. Or, rather we did on her behalf. Immigrations sent her renewed registration card! ( Click here to see the Immigrations and Dementia post.)

There was no in-home interview after the herculean effort we went through to obtain one. The card just unexpectedly showed up in the mail. I’m not complaining, mind you. It’s just that I was certain that all the additional documents I uploaded in September would not be the end of it. I fully anticipated that Immigrations would either reject the photo I took of Mom, fail to open the password-protected letter from her doctor even though I sent the password to them, or demand some entirely new set of requirements. Then, we still had the interview to schedule and get through.

I don’t know what happened. Maybe they just gave up or took one look at her photo and realized they were beating a dead horse. Pffft. Doubt it. They probably just moved on to other prospects to torment. Whatever the reason, we were stunned and relieved to be done with the whole ridiculous process.

So, yippie! A little bit of sunshine in my thundercloud of a post.

For a related post regarding thoughts about impending death, click here to read “Guilt in Caregivers.”


Upside of Dementia, II: Conversation

I told you there would be more. Here is the second part to what will be a recurring post about the unexpected benefits of dementia as long as I can find any. Even with dementia, there is still much to enjoy during conversation.  (To read “Upside of Dementia, I: New Relationships,” click here.  To read “Upside of Dementia, III: Preserving Family History,” click here.)

A Successful Topic of Conversation

Conversing with a loved one with dementia can be a frustrating experience. They don’t remember anything for very long, so frequently the conversation is a series of the same questions and comments over and over again. Sometimes, too, you just weary of having to repeat and explain every comment you make because it’s never understood the first time. Conversation just becomes too arduous, and the silences become more frequent.

If you could only steer it to a subject that could last for more than two exchanges, you would be thrilled.

Well, the long term memory is strongest and sticks around the longest.  That means that your loved one’s most secure ground is their childhood. This is a wide open territory to mine when conversation lags or becomes frustratingly repetitious.

Start with What You Know

There is much I know about my mother’s life before she met and married my American father during World War II. She reminisced about her childhood over the years—sleepwalking, having scarlet fever, her mother’s strange behavior, rats in the coal cellar.  We heard she was sent to a convalescent home at age nine to help cure her of stammering and her nervous disposition. Until very recently, she still managed phone conversations and spoke frequently with her last remaining sibling in England. She and my uncle frequently triggered each other’s memories of their childhood, so there were fresh influxes of information from time to time. Mom also at one time wrote a 60-page autobiography, copies of which she distributed to us four children.

All of this gives me the foundation to gather additional details that I am interested to know. More importantly, it gives my mother the opportunity to be the expert and bring richness to a conversation that adds not only to family history but also a fuller understanding of her.

Then Ask for More Details  

For example, I knew that my mother and her siblings were evacuated out of London during the war. All parents were exhorted to allow their children to leave the city that was expected to be the main target of bombings. Children went off with their gas masks, some clothes, and a day’s supply of food. But they didn’t go as family, they went with their school class and their class teachers to be distributed to villages in the country. Therefore, none of my mother’s siblings saw each other or their parents very much for years. It always seemed horrible to me that these children were not only away from their parents, but did not even have the comfort of being with a brother or sister at a time their country was at war.

So during one of my most recent visits, I asked Mom how old her younger brothers were when they were evacuated and whether they were scared. She surprised me by saying that the boys thought it was all a great lark and loved the families they were placed with. We figured out that they were eleven and nine years old at the time, given that she would have been fourteen. Her older sister was old enough at sixteen or seventeen to be allowed to stay in London.  We talked about how hard it must have been for parents to send their children away for years in order to keep them safe.  As I already knew, their home was bombed out. This day, though, Mom told me that their home went with the very first bombing of London.

Conversation Rating:  A+

Altogether, our conversation was much more valuable than talking about the garden or how my husband and I are keeping busy in our recent retirement.  More importantly, it is a topic in which my mother is the authority, not the confused ‘patient.’

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.”

A Prisoner of Dementia and Self-Awareness

One of the hardest things to deal with in a loved one with dementia is their own self-awareness of their deterioration.  And, Oh, Man!  When they cry, that’s the worst.  The tears are usually followed by, “I hate it here,” “I’m a prisoner here,” or “What’s the matter with me?  I feel so useless.”

Of course, I haven’t experienced the combative stage yet.  Some friends tell me it’s sure to come and it is BAD, but my mom isn’t there yet. So, for now, this is the worst for me.

Can you imagine being aware of increasing dementia?  You know that your mind is going and that you don’t remember parts of your life any more or even ten minutes ago.  You can’t manage your own affairs or even operate a phone. Other people help you dress and accompany you everywhere.  You are not allowed out on your own as if you are a prisoner.  You think no one loves you because they haven’t visited you “in a long time,” but they tell you it was really just two days ago.   You can no longer read a book because you can’t follow the story line.  Every time you pick it up, it’s like you are starting from the beginning again.  So, what do you do?  You just sit in the lobby all day long.  It’s a fearsome existence.

There is no point in ignoring the tears.  When my mom says she hates it at her assisted living facility, I go with, “I know, Mom.  It was so much better when you could live on your own in your own apartment.”

I don’t mention how it was even better than that for the eight years she lived with my awesome generous sister and brother-in-law.  She had her own wing in a beautiful home, a fabulous garden with a koi pond by a vineyard to relax in, and neighbors coming and going.  However, she chose to move out.  If she hadn’t, she never would have suffered the injury that catapulted her into dementia.  But, I can’t throw that in her face or even “bring it to her attention.”  Besides, she doesn’t even remember those years, so why distress and confuse her?  I just say, “I know, Mom. I know it’s hard.”

She’s right.  She is a prisoner.  But that is because she is a prisoner of her body which keeps falling down and a prisoner of her mind which is also rapidly failing her.  She no longer has any independence, and that is a sad thing.  But her self-awareness that things are not right, that she can’t remember what you just said to her, that she is losing control–THAT is scary.

So please, keep your core muscles strong.  Falling leads to more than broken hips.

Note: For a helpful article, Responding When a Person with Dementia Wants To Go Home by Andrew Rosenzweig,M.D., go to the Communication Strategies tab on the following website: