A Dementia Triple Play

triple-play-1

As I settle in to watch Game 6 of the World Series, Chicago Cubs vs. Cleveland Indians, (Go Cubs!) I realize how grateful I am for the excitement and distraction of baseball.

I went to Cub’s games as a kid and it’s fun to think the curse of the goat has finally been lifted.

My brothers used to tease me for being a Cub’s fan when we were growing up. They are White Sox fans. But that didn’t stop them from finagling me into playing catcher for their pick-up wiffle ball games in the backyard. All the neighborhood boys came. There was one kid who was always picked first. He was the only kid we knew who was bald but no one made fun of him. He was that good.

In 2010, this “kid” was made manager of the Chicago Cubs. I guess he’s with a Twin’s triple A team now.

First Out

My mom was once a Cub’s fan. She was born and raised in the city and she used to ditch school and take the El to the Wrigley Field. A few weeks ago, she told me to pray for the Cubs. Mind you, she has no idea about baseball anymore. She can’t follow a game. She wouldn’t know a curve ball from a hairball. I’m not sure what prompted her request. But, okay. I did.

Alzheimer’s is funny like that. It’s not funny what it does. It’s relentless. It has taken her and transformed her into a sometimes goofy, sometimes paranoid, sometimes harsh, sometimes diminished, sometimes exaggerated version of herself. We don’t know who she is. And she sure doesn’t know who we are.

She’s been hallucinating lately, so the doctor has her on anti-hallucinatory meds. Hopefully, those will calm her down. Curiously, she is well physically, aside from a sore hip or knee.  We can’t tell. Neither can she.

This has not been true for my dad.

Second Out

We noticed that Pops has had some issues with trembling hands. His gait is a shuffling slow motion turtle waltz. He’s also been falling quite a bit during the past six months. He said he tells his legs to go but they don’t go. Tough for an old Marine sergeant. He started using a walker and still he fell.

The doctor diagnosed him with Parkinson’s, a form of dementia.

Third Out

He’s been mixing up his words.

And worlds. He talks about his living room being his office. How he needs to get the payroll out. How there’s not enough room in the office for all the staff. Then his hands shake.

When physical therapy wasn’t working, and combined with his issues above, the doctor diagnosed him with Lewy Body Dementia.

Three outs!

We got called slammed by Alzheimer’s, Parkinson’s, Lewy Body and the other six players on the offensive dementia brain team.

We also whiffed at bat.

From my softball days, I remember that feeling of the first called strike when you’re up to bat. You  remind yourself to sit back, keep your eye on the ball, clear your head, and then you take your stance. You hope the pitcher will give you one low and inside, or high and outside. You’ve practiced for this.

When the second strike is called, you  may swear at yourself for not being ready or for not following through with your swing. You choke up on the bat.  You remind yourself to breathe. Just breathe.

When you swing and miss again, the umpire yells, “You’re out.” You stomp back to the dugout or the bench determined to get a hit next time. The other team is relieved. But, you feel like mud.

In dementia land, when that third strike is called, you also feel like mud.

You were thrown a curving sinker and it fooled you.  It’s like you’re back to being a rookie.  You realize you didn’t practice for this play or this scenario.

you-just-want-to-quit

It’s a total dust-up.

There are now new signals to learn. New terms. New signs. New meds. New symptoms. It’s a different game and you realize you don’t even want to play in this game. You want to take your ball and go home.

But, you can’t quit. You have to stay in the game.

Your emotions go haywire.

No, there’s no crying in baseball, but in the game of dementia, it’s okay to shed a few tears.

Three outs. Three strikes. It’s tough.

Meanwhile, all you can do is remain vigilant as you wait for this cloud of dust to settle. And while you learn the rules of this new game, remind yourself to keep breathing.

Just Breathe.

Go Cubs!

cubs

Advertisements

Mom’s Summer Vacation

What a fantastical interesting summer Mom had.

Mom's Summer Vacation (1)

She went on not just one, but two cruises with her dogs and her Aunt Elsie, who is quite overweight. Mom said Elsie was off balancing the ship. We learned that Roger was the captain. (It’s interesting that she chose Aunt Elsie to go on a cruise with because Aunt Elsie’s sister drowned on a cruise ship. Psychologists-could someone analyze that?)

While on the cruise, Mom said she had a rough time keeping track of the kids. But, she had fun. At least in her mind. Except when she was panicking about the weather.

Of course, she really never left town.

This summer, we were also surprised to learn that she had been kidnapped and was apparently gone for twenty months before her teacher helped her.

Oh, and her mother got arrested.

Sigh.

Delusions are Real

It’s not that she’s lying. In the confines of her private mind, the events are real. Sometimes I wonder if she’s upset that none of us are sharing our cruise memories or jabbering about her trips or oohing and awing that she had been kidnapped.

No wonder she’s so anxious. I imagine she feels alone. Solitude can be detrimental to our health. An overabundance of lonely solitude hurts in places we can’t find.

Lonely solitude hurts

A PsychCentral post quotes a new book that states, “Loneliness also is related to difficulty getting a deep sleep and a faster progression of Alzheimer’s disease.’’

I don’t think we’ll ever know why my mom ended up with AD. It wasn’t because she wasn’t sleeping. My dad was the insomniac. Mom slept.

Except now, with her sundowner’s, she fights going to bed until very late. She needs to check on everything. But, lately, once she’s down, she’s asleep for the night.

However, I know she feels lonely. She’s constantly telling me she’s trying to figure it all out. I know she’s frustrated. I just tell her I’m trying to figure things out too. Sometimes she remarks, This too shall pass.

Sadly, this won’t pass.

Not in this life.

The delusions will remain.

So, we try to enter into her stories. It’d be ridiculous for us to confront her or correct her or dismiss her. That only leads to frustration on everyone’s part. But, an affirmation that we have heard her goes a long way. So much better than trying to reality orient her.

Simple is Best

Helen Keller once said, “I long to accomplish a great and noble task; but my chief duty is to accomplish small tasks as if they were great and noble.”

It is a small but great and noble task to reassure your loved one. They need affirmation. They need connection. They need to not feel crazy.

Be great and noble; keep your remarks simple.

Here’s an example of what we say:

Mom: The weather was nasty on the cruise last night.

Us: Did you feel sick?

Mom: Well, not so much sick but I was worried about the kids.

Us: You really love your kids, don’t you?

That’s enough. Mom really just wants to be heard. It’s a noble act to listen without judgment or rush to respond with criticism. Put down your phone. Be present. Take their hand.

Put down your phone

Just listen then feedback to them what you heard them say. Affirm that you heard them. Assure them you’re on their side.

That’s good advice for every relationship.

~~~

Here are a few more good ideas from ALZ Australia on how to deal with people who are having delusions or hallucinations.

Also, Understanding Dementia , a free nine-week MOOC, is open for enrollment. Great course!

The Daily Calendar

One thing we all know about Alzheimer’s is that every moment of every day of every week of every month of every year is overwhelmingly repetitive.

  • You hear the same questions. (Where am I? Who are you? Is my mother alive? What do I do now? Who am I married to? I don’t have kids, do I? Where are the babies? Whose dogs are these?)
  • You watch the same frustrating inappropriate behavior. (My mom wore a bathrobe to her adult day care last week. Oh, she’d be so humiliated if she were really herself.)
  • You cringe at the same demands. (Take me home. Quit telling me what to do. I want to go home . . .  NOW! even though they are home.)
  • You experience the same feelings of frustration when they wander, pace, trace their finger over imagined objects, look confused, struggle for words, and/or get lost.

In addition to this blog, I also have a poetry blog called Writing On the Sun. One of my favorite poetry prompt sites,Poetic Bloomings, served up a challenge today to write a week of haiku, highlighting a week of days in a string of seven haiku.  Anything is fair game, so I wrote what happens (and has happened) every day of every week of every month for the past four or five years of my parent’s life.

In my poem below, I think  I failed to capture a couple of things:

1. That their days are like the movie Groundhog Day. The same ol’ same ol’.

2. They express their frustration at their failing health by remembering the past and in prayers to leave this world NOW and meet God in heaven. The present is the past and the future. Not the present.

Here’s my offering for “WHAT A WEEK IT WAS!”

The Daily Calendar

THE DAILY CALENDAR
by J.lynn Sheridan

DAILY

Old sergeants wrestle.
Against time and providence.
Playing hide and seek.

He prays for heaven
Weary of daily battles
The sunrise cheats him.

She prays to go home.
Lost inside her tangled mind.
Asking her own name.

Another phone call.
Another question of time.
Searching the shadows.

Remembering 1953

White lace and diamonds.
Home sweet home and hearth to hearth.
Her beauty thrilled him.

NIGHTLY

A flirt with morning
Lost dreams teasing me.
Insomnia’s gift

Neighbor’s chickens squawk.
Red fox prowler on the hunt.
Thieves hide everywhere.

~~~

Are you My Mother?

Years ago, when my kids were younger, I read them a book called Are You My Mother? written by P.D. Eastman.

It’s about a baby bird in search of his mother, whom he has never seen because when he hatched, she was searching for food. He finds a kitten, a hen, a dog, and a Snort. But, he can’t recognise his own mother until the end.

It’s a lovely early reader book. My middle son loved this story most of all. I still have our worn torn copy.

are you my mother

Sometimes I wonder if my mom is still my mom. She does weird things. She says weird things. Inappropriate things. Really inappropriate things. She wears weird clothes. She tries to eat weird things. She calls me weird names. And most of the time she has no idea where she is or even what century she is in.

Once she was a beauty, full of life, hopeful. (That’s me on her lap.)Marijean with three children

She raised her kids then went back to school and graduated with a Psychology degree.

Mom college graduation

Now, we joke that Mom is a troublemaker.

Last month she told my sister she had to quit her night job at the strip club. (My sister is a little too old to work at one of those. Not to mention, she never did work at one.) Mom also told us that she was going to quit her job as a police officer. (She never worked as a police officer.)

Two weeks ago she hid her toothbrush in her shoe and stuffed her pantyhose in the refrigerator.

Last week she set off the alarms at the adult day care center by trying to escape.

Last night she thought she was on a ship and kept my dad awake until 2:30 a.m.

This morning she was packing to go home. (She was at home.)

Uff da!!!

It’s difficult to recognize her as the mother I once knew. She’s the same and yet she’s a completely different person.

Watching someone you love slowly regress into someone else is hard. You are challenged by the inevitable changes. Your perception of them and of your relationship must change. Your expectations must change. Your way of communicating changes.

Double Uff da!!!

Is she still my mother?

Physiologically, yes.

But Relationally?

Relationally, at this stage of her ALZ, she’s a backward Benjamin Button. While her body is aging, her mind is reverting to that of a child. She presses our buttons. She acts out. She forgets. We have to remind ourselves that she can’t learn new things as a child can.

We may not recognize our loved ones by the way they act, especially in later stages of ALZ, but we still love them.

My sister remarked that when she left mom at daycare, she was startled by how tiny she was now. Like a little bird. A little lost bird.

Kiss someone you love today. Remind them you will love them in sickness or in health. In good times and in bad.

Love conquers all.

~~~

What’s Your Name Again?

I have a question:mark-659508_1280

If your mother thought you were someone else, would you address her as “Mom?”

Confused?

Me too.

I have two examples.

Example 1

My mom is sitting across from me on the sofa at her house.

Mom: “So, how’s your mother doing?”

Me: “Um . . . she’s fine.”

Mom: “What is her name again?”

I stammer, unsure what I should say. If I tell her the truth, she might be embarrassed. If I tell a fiblet, she might become even more confused if she suddenly remembers who she is or who I am.

I opt to tell her the truth.

Mom: “Really? That’s your mother’s name?” (She is holding her head in her hands in frustration.)

Me: “Yep.” (Suddenly I feel guilty.)

Her: “That’s really strange because that’s my name and I don’t have any kids.”

Me: (A lump is in my throat.) “Oh, that is really strange.”

At that point, I changed the subject. I didn’t want to push the issue and thereby further confuse her.

Example 2

Another evening I was sitting on the sofa. My mom was standing in front of me. My sister was walking into the living room from the kitchen.

Mom: (Looking at me.) Have you met my niece? (She motions to my sister.)

Me:  (I raise my eyebrows.) No, I don’t believe I have.

Mom: Come in here. (She gestures to my sister)  I can’t remember your name right now. It’s Barbara, right? (My sister’s name is Sharon.)

Sister: Yes. (She knows it’s just easier to go with the flow.) Hi, nice to meet you.

Me: Hi, Barbara, nice to meet you too.

Mom: Barbara, this is my friend from church. (She looks at me and laughs.) Your name is on the tip of my tongue.

What is it again?
What's Your Name Again- (2)

Me: It’s Joyce. (The name she called me one night.)

Mom: That’s right. I know you from church, right?

At this point, I am wondering if I should  reality orient her and tell her “No, I’m your daughter.”  I wonder if I should call her Mom.

I opt to call her Marijean.

Me: Yes, Marijean. It’s nice to meet your niece. (My sister and I shake hands.)

Mom doesn’t seem phased. But, ten minutes later when she begins ordering me to put away the dishes in the kitchen, she calls me by my real name and I then revert to calling her mom.

But, in the back of my mind, I am wondering if she’d be upset or confused if I called her mom during one of her “I don’t have any children” phases. I really hate  the pained look on her face when she realizes something isn’t right and it might be her.

Sometimes she asks me if all the kids are home. I ask her what kids she means. She names me and my siblings and says they are at the park and it’s time for them to come home for dinner.

Seriously, I can’t keep track. Who am I? What’s my name today? How old am I? Who is she? What’s her name today?

It’s enough to make a daughter dizzy.

girl-562156_1280

 

Are We Defined by Our Memories?

 

I once knew a man who was deafblueM_thumb.jpg. He claimed to have zero memories before the age of twenty. (The educational system had somehow neglected him.) He was just out of his teens when a kind soul began teaching him words and sign language. So, as he learned that words were associated with meaning, memories finally began carving a pathway throughout his brain. He was working in an ice factory then and often said that hooking ice and stacking it in straw were his first memories.

If you read Alzheimer articles and blogs, you are familiar with the phrase, “We are our memories.” We often read that if you are robbed of these memories, then you lose your identity. (This may be a loose interpretation of John Locke’s Memory Theory.)

Fast forward to this man’s aging years when he developed dementia and his memories once again disappeared.

Does this mean that he once again lost his identity?

A New Theory

The article, Morals, Not Memories, Define Who We Are cites a “new study which has found that ‘who one is’ is largely defined by one’s moral behavior and not by one’s memory capacity or other cognitive abilities.

What they claim is that our identity is “not what we know, but what we stand for.”

Here again, I believe the scientists are wrong. (I also believe that we are not our memories.)

Why this study has it wrong

Because our morals are connected to our memories. If we stand for something and the part of our brains which have controlled that moral standing no longer functions, we lose our morals.

Case in point #1: My uncle was a devoted husband who tuned pianos and sang in church. I would have called him a bit uptight and extremely reserved. He developed Alzheimer’s. One day, my aunt visited him in the nursing home and found him walking down the hall with two women on either arm. He told my aunt these were his new wives. She said, “But, I’m your wife.” He didn’t recognize her. His morals stated one wife per one man. But, clearly he no longer remembered.

Case #2: This same aunt developed Alzheimer’s years later. She had also sang in the church choir and was reserved and very kind. But, one day she bit the nurse. Her morals would have told her she shouldn’t bite but clearly she didn’t remember or retain or possess self-restraint.

Case #3 My mother, who knows the Ten Commandments backwards and forwards, has recently falsely accused my father of murdering her parents. (Just in case you were wondering, her parents passed away several decades ago from natural causes.) Here again, her morals could not override the absences of memory or morals created by Alzheimer’s.

These examples are not uncommon.

We’ve all heard stories about the nun, the pastor, the Sunday School teacher who, upon developing Alzheimer’s, suddenly swore like the dickens and spat at their family and threw plates across the kitchen.

Was this really who they were? NO! Their behavior was based on the functions of their deteriorating brains.

And that does not define them.

‘Who one is’

‘Who one is’: a philosophical phrase meaning you, me, the guy at the bus stop, the newborn sleeping in a bassinet, are not defined by our morals.

Nor are we defined by our memories.

To take an either/or approach diminishes the truth—that we are so much more than morals and memories.

Recognize these words?

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

The Declaration of Independence has it right. Our Creator has given us our identity. We are made in the image of God.

And for this reason, those who live and struggle and die from Alzheimer’s retain their identity and are defined by their value as human beings even if their morals slip and even when their memories disappear.

All men are created equal

We retain identity whether our bodies whither away or our minds whither away.

Those with Alzheimer’s deserve to be treated with dignity and not relocated to some scientist’s idea or some study’s findings that we are defined by our morals or our memories and if we don’t possess either one then we lack an identity.

No human has that right.

How heartless.

 

Is Laughter Ever Appropriate?

 

LOne day, several months ago, my mom and I were discussing our names. Specifically her initials: MAD. She said her mother made a mistake in naming her. But, the problem got worse when Mom got married and added an E to the first three, making her initials now MADE.

“And you know what that means?” She was giggling.

“No, mom, what does that mean?”

“Well, when I was in school, if a girl had been ‘made’, it meant she wasn’t a virgin any more.” (giggle giggle)

“Mom, I don’t think that’s so bad. You didn’t have those initials when you were in school. Look what you named me.”

“Janice?”

“And our last name begins with EX. Say it all together really fast.”

“JaniceEX . . . sex?” (giggling)

“Yeah, the kids in school teased me all the time.”

(Giggle. Giggle. Laughter. Laughing hard. Laughing still harder. I can almost hear the tears falling from her eyes.) “Well, then . . .” Snort. “I guess we’re a couple of floozies.” (Laughing so hard she can’t even talk.)

Now, I was laughing with her. “Yeah, I guess we are.”

“We should get some sweatshirts that say, “I’m a Floozie.” HAHAHAHAHA!!

It was a hilarious conversation. And it was so good to hear her laughing. I know it lifted her spirits. I also knew in five minutes she wouldn’t remember the conversation. But, the shared chuckles were worth every second.

Yet, what about those times when she’s in her kooky ALZ mood and she’s wearing a bizarre outfit or telling “secrets” she has made up about hearing babies in the car trunk.

I confess, sometimes I find myself smirking and later laughing then feeling guilty wondering if laughing is okay?

“Alzheimer’s and Humor”, posted by Laughaways.com, whose official name is Laughter Works-Pathway to Healing, suggests “Laugh whenever you get the chance. Dealing with AD is not very funny so if something happens that is even remotely funny, let it rip.”

Caring.com lists five reasons when it’s okay to laugh.

  • When you both realize something’s funny.
  • When you need to let off steam.
  • When you feel the need to lighten a heavy moment.
  • When you want to normalize the reality of Alzheimer’s.
  • When the absurdity of the whole situation strikes you.

But, there are boundary lines on what is funny and what is not.

The times Mom puts herself into danger are not funny. The times she feels over-anxious and cannot sleep are not funny. The times she admits she knows something is wrong but doesn’t know what and she is fearful are not funny. The times when she looks confused during conversations and I can see the pain in her eyes. Not funny at all.

But, for all those in between times, I’m going to indulge in some humor therapy. The power of shared laughter “may be just as effective as antipsychotic medications for reducing anxiety in elderly people with dementia.”

And in those of us who love them.

What about you? Do you laugh freely? Or are you more reserved? How do you deal with the stress of ALZ?