A Dementia Triple Play

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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.

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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

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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

The Arts and Alzheimer’s

My poetic friend, Michelle Pond, co-hosts a radio show about the arts. Recently, she interviewed Deborah Shouse, author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, along with her performance buddy, Ron Zoglin. Both Deborah and Ron are entertainers as well as writers.

In this radio interview with Michelle, they discuss integrating the arts as therapy for the Alzheimer’s patient and they also perform some of Deborah’s stories.

Art for special populations is not a new idea . . .

. . . but it’s an idea that is blossoming.

The Alzheimer’s Reading Room sings the praises of music and art citing that researchers believe “the arts can improve cognitive function and memory, bolster a person’s mood and sense of well-being, and reduce stress, agitation and aggression.”

This is true for all of us. Most of us have playlists on Itunes or Pandora or Spotify. Music is said to be the universal language. Even when we lose our memories.

Especially when we lose our memories.

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While I was in college, I worked as a nurse’s aid in a home for the aged. One woman, who could not communicate to us verbally or make eye contact, would often sit in the hallway in her wheelchair and sing,

Gott Ist Die Liebe.”

It was a Lutheran nursing home, so many of the residents spoke German. I never actually heard this woman speak but she could still sing.

I have a degree in Therapeutic Recreation and when I worked in that field we often integrated music therapy into programs with special-needs children and with the elderly.

When I worked in a Senior Center, we played music from the era of the seniors. This is where I learned how to waltz. The men loved to show off their moves. They never forgot the feeling of dancing to the music even if their legs didn’t move as quickly as they once did.

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All the arts can be therapeutic

As for other the arts, my mom used to enjoy knitting and needlepoint but that is beyond her scope of ability now. A decade or so ago, she began making jewelry so for awhile I was stringing beads with her. It’s calming. At first. Then it becomes frustrating because she is unable to complete a task. Knowing when to distract her with something new is key.

Last year I made a couple of scrapbooks for her—the story of her life. It was a learning experience for me but a little confusing for her to see her life in a book. I thought it might help with her memory but I’m not sure. (I think it helped my memory more than hers.) And yet, looking at it kept her occupied until her attention waned. Even if she can’t follow along, we can use the scrapbook as a more of a picture book.

Our job is to consistently lower our expectations and find smaller and smaller tasks she can complete so that in that one moment she can feel useful. A word of advice: Our loved ones dignity is paramount. Be mindful of not judging them or of creating an atmosphere of failure. Enjoy what they enjoy while they still enjoy it.

Connecting with others is important

I’m encouraged that Michelle took the time to interview Deborah and Ron. Take a listen to the podcast. About fifteen minutes into the interview, Deborah and Ron perform a couple of Deborah’s stories. I know you’ll enjoy them.

One more word of advice: Reach out and connect. Connecting can reduce stress.

5 reasons why you need to earn about Alzheimer’s while you are still young

Think you’ll be forever young?

I sure used to.

When I was a teen, I thought twenty was old and I’d never reach that age. When I was twenty, I thought thirty was old. When I was . . . .

Cutting straight to the moral of the story—Young is relative. Young/Youth is also a prized possession you cannot keep.

When you’re young, you feel invincible and you generally aren’t thinking about the generation behind you that is nipping at your heels or clamoring for your job or pining for your spouse.

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Yeah, I said it. This is reality. A Fact of Life

Old. Will. Happen.

To YOU!

You were born. You will age. You will die. Historically, this is life’s formula. You cannot contest it.

Each generation has had to accept the growing up and growing old process.

However painful it may be to lose your outward beauty, charm, and perfect skin. Whatever new products,  new advances in plastic surgeries, new vitamins, we will still age inside and out.

Funny how that works.

Generation after Generation

Did you know the generation you were born into has defined you? Or rather, advertisers, demographics, and technology have defined you. You were labeled the moment you were born and that will carry with you until your body gives in to Adam’s curse.

If you don’t know your generation’s moniker, take a look at this chart:

THE SILENT GENERATION (born 1924-1945) got their name from their cautious and withdrawn natures, even in their youth,

BUILDERS: 1920-1945 The Great Depression and World War II produced a generation with a strong work ethic, financial conservatism and respect for authority.

BABY BOOMERS: 1946-1964 Born in an era of financial prosperity. Vocal on social issues. Liberal in outlook. (78 million Americans were born between 1946 and 1964)

GENERATION JONES: approximately 1954 to 1965, Includes the first wave of Generation X.

GENERATION X: 1965-1979 Cynical about authority. Insecure about financial future.

GENERATION Y: 1980-1994 Labeled as flighty and transient. The “me now” generation. This is the start of the Millennials, which ends about 2000.

GENERATION Z: 1995-2009 Tech-savvy, creative, confident. Strong work ethic – the result of more mature parents and the economic downturn.

PLURALS: 1997 to now. Ages 0 to 15 in 2012.

GENERATION ALPHA: Babies born in the 15 years from 2010.

So???

Soooooo, that’s A LOT of people in different generations. A lot of people aging. Together. This is why health care is a big deal. People need care.

Sooooo? So, health is not an entitlement. People (and you’re a people) contract cancer, Ebola, brain tumors,  Lyme disease, Meningitis, etc. We are clumsy; we have accidents. We are born with stuff we never wanted: limb deformities, scoliosis, cleft palates, heart defects, too many genes, not enough genes, too many broken genes, grandma’s arthritis, grandpa’s mental illness, Uncle Arthur’s MS.

Soooo, learning about Alzheimer’s while you are still young is a gift you can give to yourself and to the generation that gave to you. Remember, the older initially care for the younger and then at some arbitrary point, the young and healthy then care for the old and ill.*

Five reasons to learn about Alzheimer's while you are young

I promised five reasons why you need to learn about Alzheimer’s while you are young.

Here they are:


1. Because you were born. And if you can read this, you have intellect. Educate yourself. It’s a gift.

2. Because you did not conceive yourself. You have a genealogy. Someone somewhere in your family has or had Alzheimer’s or what we used to call senility. The statistics are telling. AD has a genetic link.

3. Because you are not the Scarecrow in the Wizard of Oz. You have a brain. Your brain may succumb to Alzheimer’s. Even while you are yet young.

4.Because you are just like Ponce de León. You have not discovered the Fountain of Youth. Every second you are aging. And a forever healthy brain is not  a given.

5. Because my generation did not discover the Fountain of Youth. We are aging. Someone will need to care for the Boomers and the Generation Joneses and then Generation X. And down the line.


I’ve tried to paint a picture of our finite timelines. Your finite timeline. Call it the circle of life if you want. Though your soul will go on, this body that shells YOU will not.

Kind of hard to swallow, isn’t it?

Do yourself a favor because your turn may be next: Educate yourself. Befriend an elderly person. Grow wise. Find the cure for Alzheimer’s. Don’t lose your mind. Teach the next generation.

Can you think of more reasons? Please share.

~~~

*Illness in the aged is not a given. It’s also not not a given.

For more info on Plurals.

Why?

This post is not lamenting in nature. What I mean by that is that it is not: Why, oh, why, did my LO get Alzheimer’s?

Disease is part of this fallen world. We do our best to avoid contracting them by healthy living but the truth is, humans succumb to disease regardless. Age, money, family, religious beliefs, good, bad, ugly, pretty, fame, fortune. None of these are barriers to disease.

Why what then?

The why of this post is rather, why throw money at a disease that generally affects people later in life? They’re going to die in a few years anyway. You’ve thought this. Others have thought this. I’ve thought this.

snake-animal-stripes-cut-outDiana Adams

It’s the snake hiding under the carpet sneering at us: They’re not important anymore. They’ve lived their life. Leave them to the vultures.

For me, however, working in a nursing home when I was seventeen woke me up to a new appreciation for the aging and aged. I never knew that learning to change adult diapers as a teen would be a catalyst to learning compassion. Or that sitting at the edge of a wheelchair, trying to understand an eighty-year-old woman stroke victim would be a lesson in perseverance. Or that transferring a cranky old woman with a gutter mouth would teach me empathy.

(Does anyone really think these people enjoy becoming bed-ridden, incontinent, and dependent? No wonder they are cranky.)

We don’t know what the future holds for us personally. You may develop Alzheimer’s one day, or suffer a stroke and be desperately trying to communicate something but your mouth won’t form the words.  Would you want to be attended by someone who throws up their hands in disgust, rolls their eyes, and abandons you? Or would you rather want to be attended by someone who sits patiently and struggles alongside you?

Education. Awareness. Research. Attention. Understanding.

This is the Why of this post. Why fund the research for a cure of this disease that generally strikes old people?

  • Because age and disease do not negate an individual’s humanness.
  • Because aging and disease teach us compassion and respect.
  • Because aging and disease give us an opportunity to honor those who’ve lived through wars, poverty,pain, births, deaths, tragedies, and triumphs.
  • Because aging and disease teach us the perseverance we will need if (when) we age and succumb.
  • Because Early Onset Dementia (EOD) is a public health problem. Mayo Clinic states, “Of all the people who have Alzheimer’s disease, about 5 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer’s, at least 200,000 people have the early-onset form of the disease. This could be YOU some day.
  • Because those who cannot speak do not have a voice.

Seth Rogan

What the hell happened to my brain?

 What the hell happened to my brain?

I never met Kate Swaffer.

But, I love her question.

Kate was featured in Wikking Dementia Research’s online MOOC called Understanding Dementia. She was diagnosed with early onset Semantic Dementia. It began with several headaches and lapses in word recognition.

No one expects to receive a diagnosis of dementia at a young age. It’s generally thought to be an old age disease yet more and more I am hearing of people in their fifties on down to even early twenties who are living with early onset dementia.

I know I would be asking the same question.

Here is part one of Kate’s story:

 

Live every day as if it is your last

Kate writes poetry about her journey and even has a book of poems published called: Love, Life, Loss, A Roller Coaster of Poetry.

It’s inspiring that one of her refrains is: “Please don’t call us sufferers.”

She wants to be seen as the fully alive person she is, not as that woman with dementia, which brands her as a victim, instead of as a wife, mother, advocate, educator.

Let’s not be deceived. There is no cure for dementia. So, her focus to live every day as if it her last, contains more awareness, acuity, and gumption than most of us can muster.

She still thinks forward and I applaud her for that.

My heartfelt apology

I confess I must apologize to Kate and others. I’ve written AND said that my mom suffers with dementia.

But, what other term should I use when I feel that this disease has her in its grasp?

Poem IT !

Today, write a poem about your struggle to accept the dementia diagnosis for yourself or a loved one. Or write a mother’s day poem.

Post here or write in private.

Then, tell me what you think.

 

“The day that fades”

by J.lynn Sheridan

This day, you seem to be less
than the mother I remember.

I love this mom. I love that mom,
too. Tomorrow you will be some
other mom The same one that you

remember.

If you do not know,
maybe I am the one who suffers.

 

 

Consider making a donation to the Wicking Dementia Centre

Wikking donation page

So, what’s the plan?

Monday night, we faced one of those emergencies that no one can control.

Mom suffered a TIA.

My dad heard her collapse on the bathroom floor. As soon as he could drag her out of the bathroom, he called me to ask what he should do. From a distance, it’s hard to know so I instructed him to get her some juice in case it was a blood sugar issue and while he was getting that, I tried speaking with her over the phone but she was incoherent. It took all of thirty seconds for dad to come back and I practically yelled at him to dial 911.

I’m grateful my brothers live nearby and could accompany him to the hospital. Since I live further away, after the initial emergency, I went down to stay with dad for the next few days.

It was frightening and confusing and left us with an increasing sense of unease. She’s doing well now. Probably better than we are because she doesn’t remember any of it.

But, now we are asking ourselves: How many more of these mini-strokes will she experience? How can we better prepare?

I also wondered why dad hadn’t call the paramedics first and then me. Perhaps it was because he needed validation that it was the right thing to do. Perhaps it is because he is so weary of caring for my mom, that he just couldn’t make the decision on his own.

When the crisis calmed down, I made a list of her meds and names and phone numbers of doctors, in addition to my dad’s and created copies for all the family. That was the first step in formulating a plan as to how we can not only better handle these emergencies but how we can better support dad. He’s a stubborn old Marine who is wary of asking for help. He’ll tell you that, too. You don’t even need to ask.

If you are in a poeming frame of mind, write about a time when you realized you needed a plan, or when a plan failed or better yet, when it was a life saver.

Also, if you have plans for these types of emergencies, what is your best advice?

I’m not too stubborn to ask.

notes-z-dlugopisemPiotr Wojtkowski

“The might of a plan”

Who could know that this place
of This confounding disease
would hold us hostage simply
because we know and you don’t?

One pen One note might save
your heart Might save ours, too.
Mightier than even a sword.