Keeping Them/Us Safe/Alive

K-blueThis has been difficult to write. I’ve lost some sleep over it. You’ll learn why as you read. Forgive my wordiness.

Shortly after my last post, The Glen Campbell special I’ll Be Me aired on CNN. Campbell, as you probably know, was diagnosed with ALZ in 2011.

The promo for the documentary reads:

“In 2011, music legend Glen Campbell set out on an unprecedented tour across America.

Glen and his wife went public with his diagnosis and announced that he and his family would set out on a ‘Goodbye Tour.’ They thought it would last 5 weeks, instead it went for 151 spectacular sold-out shows over a triumphant year and a half across America.

The film documents this amazing journey as he and his family attempt to navigate the wildly unpredictable nature of Glen’s progressing disease using love, laughter and music as their medicine of choice.”

I did not want to watch this program. Were they going to hit us with overly sentimental images? Were they going to play with our heart-strings or impress us with their buck up and show up grit?

I missed the first twenty minutes not wanting to make a decision. But, then I braced myself with some comfort food, settled on the couch, erected an emotional wall, and gripped the remote for a quick escape when the story hit too close to home. I will not say that I was pleasantly surprised. But, I will say that the documentary  was oddly startling and comforting.

I was amazed that Campbell was able to play one song to completion let alone a full set during an entire concert, but he couldn’t button his clothes. My mom can button her clothes, but she can’t complete a task.

I was amazed Campbell couldn’t remember his early life, but he could learn a new song. (Listen to it  at the end of this post.) My mom can remember her early life, but she couldn’t learn a new song or a new recipe or a new . . .  anything.

We see Campbell watching old family movies and he is unable to recognize his older children. His wife, Kim, must remind him who they are. My mom sometimes doesn’t know who I am and I have to remind her. At one point, Kim explains to the audience how Campbell would pull the old disappearing act in the hotels during the tour and she’d have to search for him.

To the uninitiated, wandering may seem silly. After all, this person is an adult. This naive perspective hinges on irrational and is lacking wisdom.

In truth, wandering is a panic moment. It’s like a momentary loss of your soul when the person you care for goes missing. I recently saw a Facebook post alerting us to a woman with Alzheimer’s in a nearby city who had wandered from home in search of her deceased dogs. Her family was still searching for her and appealing for help. I shared this story with my sister and said I hope this doesn’t happen to us.

Glen Campbell now lives in a full-time care facility in Nashville and can no longer play music or carry on a conversation or recognize his wife of thirty-two years. This was a difficult decision, I’m sure. We know at some point caring for someone full-time can reach far beyond the skills, ability, or strength of the caregiver.

Unfortunately, two of Campbell’s children disagreed with Kim’s decision. They have sought legal action against her claiming she had secluded the singer and prevented them from participating in Campbell’s medical care.

Robs and Kills

This disease is probably fascinating for neurologists and gerontologists to study but to families who live with it, this disease robs and kills. Physically, emotionally, and relationally.

Shortly after my last blog post, my mom did escape in the middle of the night to go to the park to search for her deceased dogs. My dad was woken up at 3:30 in the morning by someone pounding on the door. It was a neighbor with my mom.

(Thank God. Thank you DM.)

DM told my dad that my mom had knocked on his door and told him she couldn’t find her way home, but she knew her address. She was five houses away from home.

I didn’t learn about the escape until two days later.

To say I was confused and frustrated would be an understatement. I was a wreck.

I worry. I’m a petri dish of worry warts.

 

Caregiver Stress

Caregivers experience extremely high levels of stress. They are often sleep-deprived and depressed. They are slowly losing their spouse, they must be alert twenty-four hours/day, and they rarely get time away from home.

Elderly spousal caregivers have a 63% higher mortality rate than noncaregivers of the same age. In 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.

These stats worry me. (Worrywart, remember?)

A few years ago, I enrolled my mom into an adult day care to give my dad a break. That backfired. He could only handle it for a week. He unenrolled her. Mom was a day care drop out because it was too stressful for my dad.

I wonder if the status quo is king with my dad. Maybe in his mind, it is not something to be conquered or tampered with. On the other hand, holding tight to the rule of status quo isn’t working. You know the definition of  insanity, right? Doing the same thing, the same way and expecting the same results.

Though his mind knows the truth I think his heart expects things to return to normal. I get it.

And yet, how do we honor both our father and our mother in a no-win situation like this?

What’s the solution?

Full-time care, of course.

Maybe not.

Studies show that many caregivers who institutionalize their relative report depressive symptoms and anxiety to be as high as it was when care was in the home. Perhaps this is why dad won’t put her in a home.

It’s the old adage, can’t live with ‘em; can’t live without ‘em.

He just isn’t ready.

So, we take it day by day until . . .

until something worse happens? Until she trips in the street and is run over? Until she just keeps walking? Until she’s a Facebook post?

Mom can’t make any decisions about her care. She’s the one being robbed of her memories and her family and is slowly dying from this disease. Dad won’t make any decisions because this disease is robbing him of his wife in addition to killing him slowly from the stress.

My only other thought was that my siblings and I need to gang up. We need to come together and knock around a few more ideas and then implement them regardless of the consequences because doing nothing could, in fact,  wind up killing us all or at least, guaranteeing that we will be circulating mom’s pic on social media.

She is the one person who matters most in all this chaos.

And she is the one person who won’t miss us at all.

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Just another day at Mom’s

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It is a sultry Wednesday afternoon.

My daughter and I have driven south to the near north suburbs of Chicago for a visit to my parent’s house and a hair appointment. K is a master stylist with a well-known hair salon. Doing hair has been her fall-back since she hasn’t been able to find a job that relates to her degree.

Hair has been good to her, though. She’s probably making more money than she would had she found a job.

We pull in the driveway and are greeted by my sister’s dogs. Mom, Dad, and Sister A are gathered in the living room waiting for us. Hair day is a big day for them. At least mom’s hair gets washed every six weeks. Dad loves hair day.

“She’s not eating much,” Sister A whispers to me. “Only if we bring her her food.”

This is depressed mom. She knows something is wrong, but she can’t understand what. “Well, I brought donuts. Maybe she’ll want one later.”

Mom is bundled in a jacket. She says she’s freezing. She looks lost until my daughter tells her to come into the kitchen where everything is set up.

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Mom perks up. She is center stage now and lickety split she’s into the kitchen salon and while the hair color is being slapped on her head, I hear her asking K, “What are they talking about in there?”

This is paranoid mom. Always afraid someone is talking about her behind her back. Afraid we are saying something critical.

K says she doesn’t know; she can’t hear. Then I hear my mom ask K, “how’s your mother doing?”

K says, “Fine. She’s in the living room.”

Mom answers, “Oh, I didn’t know she came with you.”

This is forgetful mom. She can’t remember from one minute to the next. Terribly frustrating for my dad. When he reminds her of things she has forgotten, she gets flustered. When we remind her, she says, “oh, yes.”

Dad is fidgeting. He gets up. “I have something for you,” he says to me. “but I had to hide it. Your mother found it yesterday and hid it under some of her clothes near her closet and I spent all night looking for it.”

Sister A says, “She hid the checkbook again last week. Took us days to find it.”

This is anxious mom. She doesn’t know what to do with herself but she needs to do something. She can’t complete a task any more.

“And she’s having trouble in the bathroom,” says A. “You know . . . going and wiping and not making it in time.”

“I catch her washing out her underwear,” Dad asks when he comes back into the room. He has handed me a pile of mail to give to my son.

“Is it time for adult diapers?” I ask.

This is incontinent mom. This is what embarrasses her. This is a slippery slope.

Dad has sour look on his face. I know he feels a certain amount of shame for her. He says, “Sometimes she makes us go out to the garage at midnight to look for her kids.” Her mind has reverted. She sometimes thinks she’s a young mom.

Her mind has reverted. She sometimes thinks she’s a young mom. This is hallucinating mom. Sometimes she even thinks there are babies in the car and she wants to call the police.

“And she tried to call her mother in Chicago several times but she kept dialing her own phone number and was frustrated that it was always busy.”

“Dad tried to tell her grandma has been dead for twenty-five years and the house has been torn down but mom keeps fighting him,” Sister A says.

This is the unreasonable mom. Her reasoning abilities are about shot. Nothing can convince her that she is wrong.

“How do you reason with someone who just doesn’t have the capability?”

“You don’t reason.” I have said this a million times. “You have to enter their world.” I say it but I don’t live with mom 24/7. I am sure I would be bonkers by now if I did.

Dad creaks back in his chair. “Then she accuses me of lying and tells me to take a hike and—”

This is angry mom. Oh, how frustrated she must be at all of us. She must feel so lost. So, she lashes out at thosbarber-161615_1280e who are closest to her.

K has finished with mom and now it’s dad’s turn for a trim.

He limps into the make-shift salon in the kitchen while mom takes his seat in the living room. She is a little more perky now than she was when we arrived. I wonder if it is just the change in routine or the socialization or the attention.

She fluffs her freshly-colored, cut, washed, and blown-dried hair. She is still beautiful. Still a shining light. We tell her she’s beautiful. She says, she knows. She has been told that all her life. I’m tickled to see a sparkle in her eyes.

This is dignified mom. She always had a confidence in her beauty. After all, she was a model in her younger years. She wanted one of her daughters to be a model like her. I disappointed her with my big hips and chest. She told me so. My sister tried modeling school once. She wasn’t cut out for all the frilly dresses.

The dogs get excited about someone walking down the street. They are making a ruckus. Mom smiles, looks at me and asks me if these are my dogs.

We are back to forgetful mom. She tells me they are cute. I see a darkness form behind her eyes. Like she just remembered that she forgot something but she can’t locate the memory. She looks down. Ashamed.

Sister A whispers to me, “She’s been telling me she just wants to die.”

This is despondent mom. My stomach churns and yet I know I’d feel the same way. Living within a swell of emotions and layers of memory loss would drag me into the grave. Quickly. My friends (whose parents also have or had dementia) and I have often said if we lose our abilities to reason, to remember, to live in reality, just take us out to the shed and shoot us.

Mom looks up. “What trouble are you two concocting over there?”

Sister A says a little louder, “The dogs are mine, mom.”

“Well, they are very cute. When is K going to do my hair?”

It is What It is

it is what it is

My initial post for my alphabetical trek through dementia land was about ALZ, inflammation, and the immune system. There’s quite a bit of chatter about how these three are interrelated. The Alzheimer’s Project has a short video about it if you are interested in learning more.

But, after seeing my mom on Mother’s Day, I decided against finishing that post. Something began stirring inside me that day and I haven’t been able to piece it together until recently.

One of my mom’s favorite sayings used to be “This too shall pass.”

For example:

“Mom, I’m getting divorced.”

“Well, that’s sad, but this too shall pass.”

“Mom, I just got into an accident.”

“Sounds like you’re okay and this too shall pass”

I used to think this expression was an extension of her eternal optimism. Her way of saying things will get better. But, as I step into the age she once was as I am now, I am wondering if this expression was just an easy denial about a difficult situation. I’m wondering if it was more of a stick your head in the sand type of phrase rather than a call for action.

Was this how her generation expressed the cliché of today:  “It is what it is”?

I think I heard that saying a few dozen times in the past month.

I hate it.

It’s like a resignation. Like when we used to shrug our shoulders and mutter “whatever.”

It’s a mantra of defeatism. It’s a way to shut down a discussion or dismiss a person. There’s nothing you can do about it so you might as well just weasel yourself into a closet and pout.

Or so I thought.

This Psychology Today article suggests that the phrase actually has two meanings–ambiguity and potentiality.

The first implies that there’s an air of neutrality about IT. IT has no emotional connection. IT just is.

IT is a tree.    oak-309878_640

                 IT is a pair of socks.socks-306249_640

 

It is a phone.phone-160430_640

IT is a drunk banana.

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It is just IT.

The second meaning suggests that IT could also contain also a trace of potential. In other words, the issue is the way it is and that’s that. You now have to view the situation in a truthful manner and then do something about it.

This view is empowering.

Deal with It

My intention on Mother’s Day was to give my father a break. He’s mom’s main caretaker and stressed beyond belief. That afternoon, my husband and I and three of our kids brought the obligatory bouquet of flowers. Plan A was to take mom out for frozen yogurt. But, we weren’t sure if she was even going to be dressed (many days she doesn’t even bother dressing) so I decided if she isn’t, she isn’t. We’ll just join her. We’ll bring our pajama’s and we’ll all go to her favorite drive-in for milkshakes wearing our pajamas.

It is what it is. Right? Deal with it.

As it was, she was just slipping on her shoes when we arrived at 2:30 p.m. so to my husband’s relief, we canned Plan B and went with Plan A.

Off to Yogurt Land we went.

Last year she was able to manipulate the yogurt machines and fill her cup with her chosen flavors and toppings. This year I had to do it for her. Just another indication of how slowly this disease is progressing with her. Next year I imagine I’ll be spoon feeding her.

It is what it is, right? Deal with it.

Or not.

The Urban Dictionary has another definition for this phrase that is more in line with how I interpret this phrase and I’ll let you click the link to read that since this is a family-oriented blog.

According to them, It is what it is is an expression of who really cares? Why bother? Live and let die.

This is what we used to call a BA-Bad attitude. Interestingly, BA has two heads. One that runs from the issue and one that defies the issue or circumstance and fights against it.

To run from Alzheimer’s is impossible unless you abandon your loved one. On the other hand, how do you defy and fight a monster?

A New Thought

After considering the Psychology Today article, my thinking has shifted. It’s more Clintonian now.

I do think it matters what IT we’re talking about.

Contrary to the Psychology Today article, this IT that we are dealing with (ALZ) is not neutral. I cannot distance myself from the emotion of this IT because this IT is an uncontrollable, unmanageable, unbenign murderer.

To say IT (ALZ) is what it is would be inhumane and uncompassionate.

I think it is what it is, (or this too shall pass) has infiltrated and perpetuated a generation (or two or three) to believe that nothing can change. Why bother? This is a victim mentality.

Example:

“I can’t find a job.”

“Tough luck. It is what it is.” (Insert Urban Dictionary’s definition)

“My husband is having an affair.”

“That sucks. But, it is what it is.” (Insert Urban Dictionary’s definition)

These issues drain emotion from us. We are not neutral about them as we are a sock. We have opinions. Strong opinions that should spur us to some sort of action not resignation.

A certain young person has recently enlightened me about what she means by the phrase. She says it is what it is is something we say when we don’t know what to say to acknowledge what someone has said to us.

And to this I say, you’re really not acknowledging that you understand what they said. It’s not a comforting statement. It’s not helpful. It’s not empathetic. It’s a “whatever” statement. It’s advising them that resigning is the correct answer.

Misinterpretation

I suggest that they (we) have completely misinterpreted what the phrase means and are using it to condone a pattern of lazy thinking. And because we don’t know how to skillfully enter into a situation or conflict, we turn and  run to our own personal island of delight (or unsavory hovel) instead of learning new patterns.

They (we) use this phrase when we refuse to acknowledge that we have a few things to learn: a new vocabulary, a new communication skill, a life lesson, healthy emotional skills, a few lessons on healthier ways to deal with issues and difficult people. (We all have a few chips to knock off our shoulders. Humility is not the same as false martyrdom.)

Giving up is easy. Running from the problem is easy.

Pressing on is hard.

I’m preaching to the choir. That’s for certain.

But, there are also times when giving up and giving in is the right answer. As a lay person I give in to the inevitability of a diagnosis of ALZ. But I fight against the disruptive and destructive parasites of the disease-incontinence, hallucinations, loss of reasoning and memory. And I do that by giving in.

Huh?

It’s all in how you interpret the giving in or the warring against.

Clintonian, remember?

Then how do you fight this beast?

You make alliances with it.

You study your enemy.

You sit beside it and learn as much as you can about its strategies, then design therapeutic ways to manipulate it until the doctors and researchers devise a way win the war.

You wear your pajama’s when you go out for frozen yogurt on Mother’s Day if Plan A doesn’t work out. You don’t slap them with harsh reality when they cannot reason. You relinquish your naive control but you plan for the attacks. You suit up, choose your weapons of dementia warfare like finding ways to keep their home safe and calm, like entering into their world and conceding a few untruths to keep the peace, and anticipating potential Alzheimer’s behaviors. Pick your battles carefully. Manipulate and tell fiblets only to serve your loved ones, to keep them safe, to assist them in living instead of muddling and faltering. Fill your arsenal with the proper tools, medications, doctors, resources, phone numbers, and then spread awareness.IMG_0356

I admit, this post has been a long rant about a little phrase that packs a punch and maybe has nothing to do with dementia and everything to do with attitude.

Go ahead, Defy me. Show some BA. Tell me I’m wrong.

Finding the Why

Today I am highlighting a captivating short film that proves that life with dementia can be enriching. When I read the accompanying article, Person-centred care film wins international award | Dementia Daily, I felt a sense of relief and encouragement that a care facility exists that focuses on the person, not on the disease. Then I watched the video. Instead of hearing negative phrases and doomsday, I heard hope.

Consider these quotes.

  • “People need to feel important. Give them dignity, choice, allow them to be a person.”
  • “We respond to how others treat us. Be present. Encourage them. Be engaging.”
  • “You have to have something to look forward to.”
  • “Risk is a normal thing you live with in your life. Doing something is better than sitting around and doing nothing. We have to value their choices.”
  • “Help people remember and retain who they are and why they are. The why is important. We need to inspire them.”
  • “You gotta live until you die.”

This film is beautiful and inspiring. Please take some time to watch. It a short sixteen minutes long. Then please consider sharing this video so others will know that care does not need to be controlling or dutiful.

Finding the Why – Starrett Lodge, UnitingCare from Fire Films on Vimeo.

These are the reasons why funding for dementia care is vital. It takes money to fulfill bucket lists. But, it also takes heart and compassion to change the face of dementia care. It can be done. One facility at a time.

Hope is vital to living.

Find the why of living and share it.

H is for Hands

My guest today is Carol. This weekend her family will gather for a memorial for her father who recently passed away. While her post is entitled “H is for Hands,” it is your heart that will grow a few sizes today.

H is for Hands

letters-66953_1280 hYears ago, I read that one of the sad parts about getting older is that no one touches you anymore. Your friends or spouse may not be around to hug you or hold your hand. A loving touch is what many miss during their final years.

When I think about my Dad, I think about his hands. He had large hands. His hands were unmarked by manual labor and in beautiful proportion. He kept his nails clean and filed at all times.

We held hands a lot. Especially near the end of his life. He had some hearing and comprehension issues and he just could not understand what I said a most of the time. There is nothing as frustrating as trying to tell someone something and have them not understand despite repeating yourself over and over again. So we would sit and hold hands.

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My Dad was a big guy. He was 6’6” and while not particularly heavy, he was just big. As he got older, he was always cold. As his disease progressed, he would just turn up the heat higher and higher. Going to see him was like a trip to a sauna. But his hands were usually cold and in need a warm touch.

When I was going to see him for what I thought would be the last time, I did not get there very fast. I am not proud of this but I just did not want to go. I didn’t have any warm, loving feelings about being with him for his last moments. I don’t know if it was exactly a fear of the unknown but I just didn’t want to be there. (Don’t worry; even I felt I was a bad person)

But before I left to see him, I thought about his hands and about us holding hands. Holding hands is a basic parent/child activity. I had held his hand for many years and I knew that those times were about to end. I suddenly wanted a picture of our hands together. With that thought, I took my camera with me. I wanted a picture of our hands entwined.

When I got to his floor, a nurse met me and she started crying. She told me that he was not talking anymore. I walked to his room with a feeling of dread. His favorite nurse and aid were just finishing moving him and moisturizing his skin. There was a chair by the side of his bed. They told me to sit and they left the room. I reached under his covers and found his hand and held it. It was too late for any pictures. It was too private a moment to take a picture.

We held hands and I cried. Fortunately, one of Dad’s idiosyncrasies was that he was stole tissue boxes from the dining room. There were at least fifteen boxes of tissues in the room. I had no fear of running out of tissue. One could look at that and say that he provided for me up until the end. That is a nice thought but really, he just took the tissue because he had a hoarding mentality for certain items and tissue was one of them.

I had read that hearing is the last sense to leave. I did talk to him a bit. Here is where you will know that I am an idiot. I didn’t want to bring up that he was dying. Even though it was the elephant in the room, I didn’t want to say it. But I finally decided that we weren’t really fooling anyone and I told him that I loved him and that I would miss him. And then I cried some more.

For all the times I wanted not to be there…

For all the things I did to avoid being there…

For all the dread I felt about being there…

He died about two hours after I started holding his hand. It was so peaceful that if I hadn’t been looking at him, I would not have known that he was gone.

So, I don’t have the picture of our hands joined. But I can see his hands in my mind and I know that the last thing we did for each other was to hold hands.

~~~

 

Gott ist die Liebe

Gott ist die Liebe

letter G

Easter week has begun and I thought it would be apropos to write my “G” post with that in mind. There is no other time of the year like Easter – the Passover Lamb, new birth, new life.

Bare with me as a travel back in time for a moment to one of the hardest jobs I ever loved.

When I worked as a nurse’s aide in the Lutheran Home for the Aged during my young adult years, the non-ambulatory residents often sat in wheelchairs in the hallway after lunch. It was a way to get them out of their rooms and to be around others. Most of them could no longer communicate except in grunts. What we then called senility had strangled away their thoughts and ability to speak. Most of them couldn’t sit up by themselves without some support.  Most were non-alert and oblivious to the activity and flurry around them. We did our best to make them presentable then draped lap robes around them for modesty and warmth. For the most part, they just hung their heads and dozed.

I remember one particular female resident who no longer spoke real words. She mumbled or grunted. Her sight and hearing were feeble. There was nothing beautiful about her physically. Her gray hair grew in patches. Brown spots pocked her skin. She couldn’t manage dentures. She drooled. No, there was nothing attractive or lovely about her by worldly standards.

But, she could sing. Daily, she rocked to and fro in her wheelchair and haltingly sang a German hymn: Gott ist die Liebe. Gott ist die Liebe.

Her quavering soprano voice was a contrast to the droning clutter of boredom within the hall. I was unfamiliar with that hymn as I wasn’t Lutheran and I didn’t speak German so I asked a nurse if she knew what the words were. She said, “God is love or God loves me or something like that.”

Then we carried on with our duties.

Because I was  young and drawn to popular cultural music with a little more kick to it, I didn’t appreciate the richness of hymns, their historical value, and the depth of their theology. My faith had not yet been tested. And I had a few chips on my shoulder. Young people often do.

Nevertheless, I will never forget this woman’s steadfast faith. Here was a broken woman who had forgotten even her own name. But, she remembered that God loves her dearly. She hadn’t forgotten the one thing that mattered. At one time, she had been a wife, a mother, maybe a teacher, or an artist. That identity was a lost memory – unimportant now. All that mattered was that God loved her. That was the one memory that remained embedded inside her aging brain.

I had forgotten all about her for a few decades. Then, years later, during a turbulent time of my life, these broken lyrics popped into my head and I held onto them because it was all I could do at the time.

I just wish I could remember the name of woman who touched me and taught me even while Alzheimer’s stole her voice and memories.

Have a blessed Easter.

Here are the lyrics:

God loves me dearly by August Rische (1819-1906)

God loves me dearly
Grants me salvation,
God loves me dearly,
Loves even me.
Refrain
Therefore I’ll say again:
God loves me dearly,
God loves me dearly,
Loves even me.

I was in slav’ry,
Sin, death, and darkness;
God’s love was working
To make me free.
Refrain
He sent forth Jesus,
My dear Redeemer,
He sent forth Jesus
And set me free.
Refrain
Jesus, my Saviour,
Himself did offer;
Jesus, my Saviour,
Paid all I owed.
Refrain
Now I will praise You,
O Love Eternal;
Now I will praise You
All my life long.
Refrain

Fantasy, Friendships, and Fallibility

I received a text from my sister a few weeks ago. This is a synopsis of our conversation:

Sister: Mom is going to call you.

Me: Why?

Sister: She doesn’t remember how to dial your number so I’m calling you for her. (a cryptic       answer)

Phone rings.

Me: Hi, Mom.

Mom: Who is this?

Me: Your daughter.

Mom: What daughter? I have four, right?

Me: No, you have two.

Mom: No, that’s not right. I thought I had more.

Me: No, just the two

Mom: Well, who is this?

Me: Your daughter, Janice.

Mom: Oh, Janice. I can’t find my mom. I think she went out with my dad.

Me: She’ll be back later. Don’t worry.

Mom: It’ll be past bedtime, I suppose. (fumbles with phone.) There are some people here. Upstairs. I’m not sure who they are but I can’t find my purse.

Me: It’s probably in your room.

Mom: Who am I talking to again?

Me: Your oldest daughter.

Mom: Your two daughters are here, right?

Me: No. (sigh)

Sister gets on the phone: She thinks I’m Joyce.

Me: Who’s Joyce?

Sister: You got me. But, she wants to go outside and look in the car for the people.

Me: But, it’s zero degrees out.

Sister: I know. But, we’re going out to check on the people. She thinks they are crying.

~~~

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Fantasy. Illusion. Hallucination.

It’s hard to know what to do when your Loved One sees things or hears things that aren’t really there. Oftentimes, we correct them. As you can see, I corrected my mom when she said she had more than two daughters. I wonder if a better choice would have been if I just distracted her with a different topic. But, I wasn’t expecting her insistence that she had four daughters. I wasn’t prepared to tell a fiblet. (Yes, mom, you did have four daughters and we’ll be home for supper.)

For caregivers who live full time with their LO it’s exhausting to constantly fabricate fables in effort to change the subject so mom or dad doesn’t remain upset or frustrated.

I don’t live full time with my mom and I get flustered. I also blew it when she mentioned that her purse was missing. It really wasn’t, but I had ignored her emotion. I missed the fact that she was fearful.

Paranoia is common with ALZ.

Don’t do what you want to do.

You want to correct them, right? It’s only natural to make right what is wrong. To fix the fallacy.

Caring.com suggests that you, instead, go along with their made-up story and assure them they are safe. “It is best not to argue or disagree.”

But for the family or caregiver, living the fantasy alongside your LO gets confusing, in the least.

We get startled at the new memories . . . er, fantasies . .  that appear day by day. A strange new neighbor, perhaps. A new baby. (gasp!) Or a new love interest. (double gasp!)

I’m sure my sister didn’t expect my mom to confuse her with Joyce. We weren’t even sure if Joyce was real.

A few days later, my dad told us that Joyce was once a friend of hers. I wondered what happened to Joyce. Why wasn’t Joyce calling mom or visiting? For that matter, I seldom hear of any of her old friends calling her. Where were they? Sure, some of them aren’t with us any more. Some of them are in homes. But, what about the healthy ones? Of course, I know the answer.

It’s hard. Sometimes the stories my mom tells are false. Scary. Upsetting. She is liable to mislead people. And to the innocent ears of loving friends, these fantasies are capable of deception. Can you imagine if she had phoned a friend and told them people were crying in the car and she didn’t know who they were but they had stolen her purse?

For the average person, these stories may seem real.

When she was in the hospital last year, she developed a “friendship” with a girl who helped her fold towels. Or so she said. She even told me she was bringing the girl home for a visit but first the girl had to call her father. Sounded plausible but not likely.

When my mom said that her parents were out for the night, it sounded plausible. I reassured her they would be home soon. Even though, her parents died decades ago. (A fiblet)

What’re they truly looking for?

I know my mom is searching for lost love and security. She gets angry when we don’t enter into that passionate need along with her.

This is what ALZ does. It strips away the shallow and reveals the truths of life. Our needs. Our wants. Our fears. Our struggles. It draws a picture of what’s really important.

I sometimes wonder if mom’s fantasies are our fantasies. We all long for love, security, a home, acceptance, a gathering of people we call family, whether it be blood relatives or true friendships. We all long for a bit of dignity. Some importance. To be useful.

I titled this post: Fantasy, Friendships, and Fallibility.

This is us.

ALZ is us.

Stripped to the core of our desires and our fears. From dust to dust we labor and strive for love. This is what they are doing. We just deny that their desires are our true desires. Their fears are our true nightmares.

I wonder who is living the fantasy.

Us or them?