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!

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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?”

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

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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

Dentures, Desks, and Dementia

My desire for this blog is to personalize the Alzheimer’s journey and share how it affects families. Today, I have invited blogger and friend Carol Cooney to share her story. It is touching and memorable.

Dentures, Desks, and Dementia

by Carol Cooney

My Dad died three weeks ago. He would have been disappointed that he only made it to ninety-five. His goal had been to live to be one hundred but he had a pretty great life.

Well, if you exclude the vascular dementia. But most of the time, he did not know there was anything wrong. He truly thought it was everyone else. He would talk about the “old people” who lived on the floor with him without once putting himself in that category. He would also talk about how some of the people did nutty things but he, of course, was not one of them.

My Dad lived in a wonderful place. The staff was devoted and really took care of him. They would tell me things that he did that they found endearing while I found them embarrassing. It seems that my Dad would pound on the table and yell “hey” if he thought they were being too slow bringing his food. I don’t see at all how they could find this funny but they seemed to have found it to be an endearing quirk. I wanted to desperately defend him by saying “you should have known him before . . . .”

That is probably the lament of every child of dementia.

My Dad had been a salesman. He traveled the Midwest as a publisher’s representative. He sold advertising space in magazines. He would be in town one week and on the road the next. When he was in town, the routine was that after dinner he would sit at his desk and work. We were not to disturb him. His desk was the most fascinating place on earth. He had so many odd little items. There was the key chain with a hard hat; there was the plastic crystal egg that was a puzzle; the paperweight in the shape of a man’s loafer. The list goes on and on. We were not supposed to play in his desk – the ultimate way to induce us to play in his desk.

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His desk was his kingdom. When he moved, first to assisted living and then to the memory care unit, the desk went with him. It was in the memory care unit where we discovered that the desk was quite the hiding place. He was not supposed to have knives or sharp implements. I was a bit softhearted. I could not see taking everything out but after a couple times of the staff finding knives, I would do a sweep to remove everything I could find.

I had to do this four times.

But knives and scissors were not the only thing he seemed to have squirreled away. He was also not supposed to have money as it could be easily stolen or professed to have been stolen. I could not leave him without any cash. It would drive him crazy. So I left seventeen dollars in his wallet. He would complain from time to time but I would remind him that he didn’t use money so it was okay.

Then we had the day that he slumped over and became unresponsive. I was called to his bedside. The doctor and I talked and the doctor did not have great hopes for Dad’s recovery. I noticed that his ring was not on his finger. The staff went in search of it. They had taken his clothes directly to the laundry. They got there just as a staff member was emptying the pockets of his pants. There was the wallet and the ring. They checked the wallet to make sure it was his. In the wallet they found one hundred and seventeen dollars. (Where did the hundred dollars come from?) Later that evening when a nurse came in to check on unresponsive Dad, he turned over and told her he was hungry. I have always felt sorry for that nurse. He must have given her a fright. We have since referred to that event as Dad’s Lazarus moment.

Of all the things that he would remember, he knew that the hundred dollars was missing from his wallet. Dad was the master of the bad boy blank stare. You know that look that professes innocence but does not have a verbal profession of innocence to accompany it. So, while he would not tell me where the money came from, he was not happy that I had taken his hundred dollars.

Several weeks later, I received a call that they had checked his wallet and found eighty-seven dollars in it. They put the seventy dollars in the safe for me to pick up. Once again, we had no idea where the seventy came from.

At this point, we began to wonder if he was running a poker game. After much frivolity, we had to discount that solution. The only reasonable conclusion was that he had money hidden somewhere in his desk. We knew that when he died, we would have to go through the desk slowly to see what was actually in it.

After his death, we found many odd things in the desk but we did not find any money. We did find dentures. Yes, you read that right. We found dentures. This was a bit confusing. My father had only had dentures for a few years. There was really no reason for him to have two and half sets of dentures in his desk. We were kind of laughing about it when the head of the memory care unit came into the room with a blue cup. She thought that we might want my Dad’s dentures. She was a bit taken back when we all started laughing. We suggested that she better check around and see who was missing their teeth because we had plenty to go around. It appears that no one was missing their teeth. This, of course, resurrected the concept of the poker game and my Dad collecting his winnings in teeth.

Dad left us with the mystery of the dentures. I like to think that he just wanted to give us one final laugh.

~~~

Thanks for sharing your story, Carol.

Please visit Carol’s blogs: The Nine Inch Plate and Carol Cooney dot com. She also writes about feet at We Care for Your Feet.

If you have a personal story about Alzheimer’s or another form of dementia that you’d like to share, leave a comment, I’ll get back to you.

The ABC’s of Dementia

Today starts a new series on The Slow Forget–The ABC’s of Dementia. I never thought there was so much to say about this disease, but there is. So, (cue the music) let’s start at the very beginning. It’s a very good place to start.

“A” is for Anxiety

Anxiety is a normal reaction when your parent or aunt or grandmother is screened for cognitive issues. You worry for them and their future. Your mind whirls with questions: What will happen? How long will their journey be? Who will care for them? How will we pay for this?

In reaction, it’s not unusual to worry for ourselves, too. Human nature kicks in and we begin looking for patterns, causes, ancestral links, possibilities, and probabilities. After all, no one wants to become intimate with Alzheimer’s.

The links and patterns we find become like a scarlet letter “A” we wear on our hearts with trepidation. Mine has over six hash marks on it–my mother and four aunts. A few weeks ago, I stumbled upon a long-lost relative who handed me two more hash marks–a great-aunt, a great-uncle.

I wear two “A’s” on my heart. An “A” for Alzheimer’s. Another “A” for Anxiety. Double-trouble in my book.

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I wonder what will I do if I learn it is  my turn. Will I make a plan? Will I find emotional support? Should I start now?

Support soothes anxiety

Blogger, Sharron Warren (Was This My Mother’s Journey?) was diagnosed with early onset ALZ at the age of 64 and she is doing both. Particularly, right now she is looking for support from others with ALZ and she is putting the word out that those who have Alzheimer’s need support, too. Not just the caregivers.

So, I am appealing to you. If you have been diagnosed with ALZ or know someone who has, please contact Sharron through her blog. Knowing you are not on this journey alone is comforting.

The opposite is also true–isolation is frightening and anxiety inducing.

One way to quell anxiety is knowledge and a warm hand to hold.

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Share your Journey

Yesterday, my friend, Carol, lost her dad to dementia. We’ve shared stories about our parents over the past year or so. I’ve appreciated her kind words and humor. (Only those who’ve walked this path with parents would understand.) I want to extend my condolences to Carol and her family and thank her for taking my hand throughout our journeys.

A is also for Acceptance, Affection, and Alive

Isn’t this the goal for all of us? To accept our circumstances, to remain affectionate with those we love, and to live the best we can while we can. This is true for those of us who struggle with chronic conditions as well as those who are blessed with health.

Anxiety can be like a lead anchor, keeping you from life. If you feel overwhelmed, talk with someone who has walked the walk and don’t hesitate to seek professional help.

And never forget, you are not alone.