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!

Advertisements

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?

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.

B is for Befuddling Behavior

Had any “senior moments” lately? You know . . . the kind when you forget your neighbor’s name, or you think you have still have a day to buy your husband a birthday gift only to realize his birthday is today, or you drive away from a funeral home only to realize you left your child alone inside. (True story. Not mine, though.)

Usually, we chalk these moments up to stress or too much on our minds.

Once, when my kids were little, I completely forgot I had let out dog out. It was freezing outside and I didn’t want to bundle up the kids to walk the dog nor did I want to leave the little ones inside to fend for themselves for ten minutes. At the time, we lived in a semi-rural area and it wasn’t against a law to let your dog take to the woods alone so I guess I must have just opened the door and let Norton outside. I really don’t remember. My husband came home for dinner hours later and asked where the dog was.

Dog?

Gulp.

I rightly chalked it up to being overwhelmed with four kids.

Now, however, when these things happen, I begin to wonder . . . is this forgetful behavior a sign?

caution

Behavior is the only visible clue we have when it comes to alerting us to Alzheimer’s.

I found a handy chart online entitled: Signs Of Normal Change vs. Early Alzheimer’s Symptoms from Helpguide.org.

Signs2

The hot flash brewing inside me is urging me to take out a red Sharpie and add this disclaimer: “Don’t panic—some of these are also symptoms of Menopause. Be respectful of your wonked-out hormones.”

However, usually, after a time of respite and renewal, I can fight through the brain fog or tears associated with Menopause or other stress-induced befuddlement. Whereas, those with Alzheimer’s, who may have some moments of normalcy, will not revive.

But, it’s never clear-cut.

To zero in on exclusive Alzheimer’s behavior, the above link at Help.org offers a Questionnaire that targets the  Visuospatial Ability, Functional Ability, Orientation, Memory, and Language functions of those with memory impairment due to Alzheimer’s. Questions such as: Does your loved one become more confused outside the home or when traveling? Is your loved one having trouble using home appliances? Does he or she have a decreased sense of direction?

I’ve never had a good sense of direction. If your loved one never did either, you may need a base plumb line in order to evaluate correctly.

My mom began having issues with judging stopping distance. Even after a few bumper tapping episodes, we didn’t suspect Alzheimer’s. We suspected she needed new glasses. Ironically, the eye doctor had good news–her eye sight had gotten better. (Who’d have thunk this was possible?) She could now read without her glasses. The bad news-we were clueless that her bumper thumping may have been signs of the genesis of Alzheimer’s. I wish we had been more aware.

diary-92652_1280

Keep your own chart.

Has your mom or dad or grandma done something out of the ordinary? Write it down. Date it. Keep a list. Encourage friends and family to share their observations. Write those down, too. You may begin to see a pattern or a higher occurrence of language issues or daily living issues. Seeing it all written down defends against denial. You’ll need this list when you finally decide to make an appointment with the neurologist. You’ll also need it when you inform the rest of the family. Don’t be surprised if some of them push back and don’t believe you. Not facing the confusing behavior is more simple than accepting a diagnosis. Hang onto the list for your own self-preservation—so, you don’t begin to think you are going crazy.

Believe me, it happens.

As I work my way through the alphabet on this blog, you’re going to hear from Carol, who’s father lost his life to vascular dementia. She has a similar story. Everyone’s story is different. And everyone’s story can help another family.

“B” is for Behavior. Become a behavior specialist. Observe. Train your eyes. Learn. Become aware.

For your loved one’s sake.

B