Sleep well, Lizzie

 My first published book was Dancing With Dementia: Recognizing and Coping with the Early Stages of Dementia.

The star of the book is Lizzie. I used an alternate name for Mom to protect her privacy but the stories in the book are all real.

Lizzie was a firecracker - from her early days growing up in Aberdeen throughout WWII to her time in a local nursing home where she was often the highlight of the day for many people.

Dementia is a cruel and nasty disease. The last few weeks have been difficult for Lizzie as she mostly lost contact with the world around her. She was put into palliative care and fell into a peaceful sleep. She passed away Monday morning without experiencing any pain.

Lizzie was known for her sense of humour, her adventurous spirit, her oh-so-colourful language, and her big heart. We will miss her sass, her spunk, and her stories.

Sleep well, Lizzie. Sleep well.

Visiting Checklist

 We all know dementia is hard. Some days, it feels impossible.

I'm not sure how those of you who care for your Loved Ones in your homes do it all day, all week, all month, all year. The disease creates hideous moments for everyone involved.

Lizzie is in a wonderful nursing home and we still have those moments.

To help avoid those, I've got a mental checklist of the things I want to accomplish with Lizzie during our visits.

Lizzie now requires assistance while eating. Some days are better than others, but she no longer is able to use utensils for their intended purpose. She doesn't always see food as food. Some days, the soup is a sink and she wants to wash the other foods in there. Other days, it's all "f***ing awful" and she wants to toss it on the floor.

Our visits tend to revolve around meal times now, so the checklist involves those. During the visit, I hope to:

• have Lizzie drink as much as possible. She requires thickener in her liquids now and this makes it easier for her to swallow. To get her to drink her tea, I either sing "Tea for Two & Two for Tea..." or say, "Tea makes everything better." This was a saying Lizzie's mom used throughout WWII while Lizzie was growing up. The saying brings fond memories and feeling of safety
• help Lizzie be as independent as possible during the meal. Hand her the spoon or fork with food already on it. Put a portion of the sandwich in her hand. Allow her to eat in whichever order she wishes. If she wants the pudding first, that works. She doesn't mind going back to soup afterward
• have Lizzie sing along with me. This helps to activate her memories and her ability to converse is always better after we sing a few songs
• don't allow Lizzie to sleep with her head drooping froward. This has caused some issues with swallowing and we've got her in a new style of wheelchair where we can tilt her back when she dozes
• have Lizzie smile at a memory. She loves seeing pictures of her grandchildren and great-grandchild. She may not remember them, and she mostly doesn't get the connections as to who is who, but she loves to see pictures of happy kids
• have Lizzie giggle and laugh. Lizzie tends to giggle at silly word plays, tongue twisters or when I trip over words. She laughs at when we talk about memories or silly things that happen in a day. Laughter truly is medicine.
• Have Lizzie sing and clap along with a song. If she's tired, the clapping doesn't always happen. I think activating as many different parts of the brain as possible can only help everyone. Lizzie can clap on beat really well. Sometimes, she speeds up the clapping to make us sing faster and this can cause lots of laughter. Lizzie also taps her toes to the beat and that's great too.

So that's the checklist - drink, be as independent as possible, remember, laugh, and sing.

How about you? What are some important items to put on a mental checklist for your Loved One?

The Christmas Doll

We bought Lizzie a doll for Christmas. This is a doll created to be as lifelike as possible for people living with dementia.

The doll was expensive (about $200 including shipping and handling) but she's been worth every single penny.

Lizzie has always been vivacious and fun. She lives with a twinkle in her eye and a sarcastic comment waiting for just the right moment to appear.

Despite living with dementia and losing so much of herself to this horrid disease, we still see many moments of Lizzie.

The doll has brought even more of these.

Photo by Rod Long on Unsplash

Lizzie loves "the baby".

She holds her carefully, talks sweetly to her, tickles her chin, taps her nose, and kisses her forehead.

Lizzie also sings and talks with the baby.

Because of the pandemic, there are times Lizzie is alone at her nursing home. Now with the baby, she is never alone. She has a companion who is willing to take all the love Lizzie has to give.

Lizzie is so proud of her baby.

• She's growing so quickly! 
• She said her first words the other day! 
• She's learning to sing! 
• She's such a sweet baby! 
• She never cries!
• She loves this song!

At times, Lizzie mentions that the baby is a doll, but most of the time, she treats her as a baby. And she loves her.

If you've considered a doll for your Loved One, all I can say is the baby has been one of our best purchases ever!

There are also stuffed animals (some are robotic) that are created for the same purpose.

How about you? Anyone else find a doll to be a great purchase? Or a lifelike stuffed animal? Any other success stories from gifts?

Star Trek To The Rescue

 I'm a huge Star Trek fan. Lizzie is not. If you're not, bear with me. I think it's worth it.

If you're a fan, you may remember the TNG episode entitled Darmok. Picard met an alien who only spoke in analogies, imagery, and metaphors. Temba, his arms wide (welcome, offering, sharing). Darmok, on the ocean (alone). Shaka, when the walls fell (failure).

In these examples, the first word is a proper noun indicating a person or place. The rest of the phrase indicates what happened.

If you don't know what happened when the walls fell, you might wonder if it was a good or bad thing. Same with being on the ocean. And all the other phrases

Throughout the episode, the people struggle to learn a new form of communication. It's an intriguing ending where both races learn to communicate using some of the other race's styles and words. It's a lesson in open-mindedness and determination. When we learn the alien has set up the entire dangerous scenario in order to force the races to understand each other, it becomes more poignant, as he doesn't survive the threat. But he's content at the moment before death as Picard is now able to communicate with him. His belief in the power of and the need for communication is inspiring.

Photo by Dom Talbot on Unsplash

Sometimes Lizzie speaks in analogies or metaphors as well. She's not always able to find the words she needs, but her brain finds another way to express itself.

"Some people might think that was dry." Lizzie wants a drink.

"You're so pretty/smart." Lizzie needs to hear a compliment on how pretty or smart she is. These attributes have always been important to Lizzie. Dementia is making her insecure and we look for ways to boost her confidence.

"You're f***ing stupid." Either we're not understanding or doing what Lizzie wants, or she isn't able to communicate her needs. For this one, I usually bat my eyes, smile, and say, "Such charming language," in a syrupy-sweet tone. Lizzie catches the sarcasm and giggles. This helps break the tension and we can start in again trying to decipher her needs.

"My bum hurts."  Lizzie has been incontinent for a while. This often means she needs to use the bathroom. It also might mean she's been stuck in a position too long.

"It's so quiet." Lizzie wants to sing or hear music.

"It's too loud." "Shut up." "Stop making all that racket." Lizzie is tired and wants to sleep.

"She's ugly/You're ugly." Someone is asking Lizzie to do something she doesn't want to do. She's upset about being asked to do it (brush her teeth, get out of bed, come to the dining room...)

Learning to communicate effectively with Lizzie is an ongoing challenge. It's well worth the effort to listen to not only the words, but the need behind them.

I hope some of this helps. Until next time, Jemi, arms wide open.

How about you? Does your Loved One speak around what they want or need as well? Do you struggle to interpret?

A Good Day

Dementia has settled into Lizzie's brain and is attacking with a vengeance.

But, Lizzie remains Lizzie in some of the best ways. We're sad and grateful and a whole host of other emotions you're probably very familiar with.

Photo by Jon Tyson on Unsplash

Today, when I arrived at Lizzie's nursing home, she spotted me as soon as I walked onto the unit. The room was crowded because they were all gathering for lunch. I was wearing a mask. Sometimes all of that visual "noise" makes it difficult for her to "see" or recognize me. Not today!

I waved across the room as we made eye contact. She smiled one of those wonderful, happy smiles and waved back.

I continued to wave as I maneuvered my way through the dining room. Lizzie continued to wave back and smile. The staff members near her looked up to see what made her so happy. We all grinned. She knew me, knew she was happy to see me, knew we'd have a fun visit.

Cue the happy chills covering my arms.

I took Lizzie out on the balcony to eat her lunch. During the meal, Lizzie mostly wanted to talk. This is an anomaly now, as there are many days when she struggles for words. Obviously, I let her talk and encouraged her words.

While Lizzie's conversation was mostly nonsensical, she appropriately used the words "supposition", "proposal", and "capacity". The phrases she used made sense, but there was no connection between phrases. This didn't upset her at all and she was happy to chatter away while I made encouraging comments as needed.

Dementia's effects on the brain is an endlessly fascinating (and sad) process. You never quite know what each day (each moment!) will bring. It's good to enjoy the bright sparks and moments when they come.

At the end of the visit, Lizzie was exhausted. Probably worn out from all that chattering. I left her smiling.

A good day indeed.

How about you? What kinds of good things have happened in your world recently?

Power of Music 4 - Learning and Growing

 If you know me or Lizzie at all, you know we love music. All kinds of music.

Dementia is a hideous disease that affects the brain in so many ways. And many of those ways involve some kind of loss.

• precious memories
• friendships
• emotional control
• vocabulary
• physical control of her body

Lizzie has been in the nursing home for over 5 years now. She's experienced a lot of loss.

What surprised me in recent visits was that she's also shown evidence of learning and growth. Yay!!

As you know, Lizzie and I sing a lot during our visits. It's something she enjoys and it's a great way to help her retain her words and keep that brain active.

The other day, Lizzie started singing a song about Nicholas being ridiculous and not wanting to get up in the morning. She sang the same 3 or 4 lines multiple times. It was a song I'd never heard. I wasn't sure it was real, but when I looked it up, there it was!

This was during the pandemic. There had been so guests in singing or playing instruments. No one I spoke with had ever heard the song.

But, Lizzie was singing it. Not completely accurately, but the song is from the 30s!

When we were little, Lizzie introduced us to The Sound Of Music. We had the record of the movie and listened to it often. When I visit Lizzie we often sing several songs from the musical, including Raindrops On Roses.

When I first started singing this song with her, Lizzie would wave her hand like a conductor. She knew the beat and the rhythm, but the words escaped her. Now, she's able to sing along with the first verse and the chorus.

Repetition has helped her regain the joy of that song.

How about you? Has any song brought you good memories with your Loved One?

Where Everybody Knows Your Name

With pandemic restrictions easing, we've moved into a new stage for our visits with Lizzie in the nursing home.

My sister and I are now fully vaccinated. Lizzie has been fully vaccinated for a few months.

Because of that, we are now allowed to visit her without our face shields. We still wear our masks, but the clear plastic shields that cover our faces are no longer required. Yay!

When I arrived at the nursing home, Lizzie was sitting at her table in the dining room. I waved when I walked in as I always do. I walked toward her smiling.

Before I could say my usual greeting (Hi Mom. It's Jemi! I'm here for a visit), Lizzie smiled back and said, "My baby."

This is the first time she's recognized me in months.

I did a happy dance and made her laugh.

About 30 minutes into the visit, Lizzie turned to me and said, "What's your name?"

"I'm Jemi."

Big smile. "I have a daughter named Jemi."

"That's so nice."

Then she turned back to her meal and took another bite. Sure, I could have said I was her daughter, but that seemed a little mean. She was happy and content and I didn't want her to lose that.

Photo by Markus Spiske on Unsplash

So, you win some, you lose some!

Even if it was just for a few moments, Lizzie recognized me without prompting.

Day = Made!

How about you? Any easing of restrictions? Any reactions to wearing fewer pieces of PPE?

Don't Let The Sun Go Down

I was driving home from the Nursing Home one night after visiting with Lizzie.

It had been an odd visit. Lizzie had exhibited extreme paranoia about another resident. He was someone she'd known for months but she was suddenly afraid of him. It didn't help when the poor man walked by us multiple times as we chatted.

Then Lizzie told me a story about how I watched myself begging for a library card. Both the Begging Me and the Watching Me wore the same bright yellow rubber boots. She was surprised I didn't remember watching the two of me.

Lizzie then told me about letting That Man into the house because his mother was an Artiste (said with a French accent) and they wanted to see her flower gardens. Not everyone had an Artiste wanting to see their gardens, so she'd let them into the basement to see the tulips. Wasn't I proud?

Of course I was.

Another evening of Sundowning in action.

(Photo by Anand Rathod on Unsplash)

On the way home, The Elton John song Don't Let The Sun Go Down On Me came on the radio.

I've always liked the song, but that night I started to wonder.

Did Elton John and/or Bernie Taupin have some experience with dementia in their lives? Was the song alluding to Sundowning?

Probably not, but when you hear it, you might find some lines that make you wonder.

 What do you think?

Essential Caregivers in a Pandemic

 This pandemic has been hard on everyone.

We're very lucky with Lizzie's nursing home. The people are almost always kind and caring with her, even when they're understaffed.

Lizzie wasn't eating well during the early part of the pandemic and she wasn't thriving. Sis and I were declared essential caregivers to help her out.

This means we can go and visit her at meal times to help her get more fuel into her system.

It's made a huge difference for her. She's eating more and has regained the weight she lost. She interacts more with the staff even when we're not there. That one-on-one attention with us has helped.

We're lucky.

When we enter the home, we need to have proof of a negative COVID swab from the 4 previous days (which means we've had COVID swabs every 4 days since before Christmas). We wear a mask and a face shield. If there is a potential issue in the home, we wear full PPE.

Lizzie was taken aback by the masks and shields at first.

Photo by visuals on Unsplash

She'd want to know why we were wearing blue makeup. She'd ask who we were. She'd say we looked awful.

It didn't take too long for her to get used to it, but it makes me wonder what her reaction will be when we don't need to wear the masks and shields anymore.

Will the change throw her off again? Or will she slip back into recognition of our faces?

Only time will tell.

How have you been coping with the lockdowns?

AlzAuthors

 Today I am thrilled to announce that I am an official AlzAuthor!

AlzAuthors.com is an amazing community of authors and bloggers who are all working to raising awareness of Alzheimer's Disease and other forms of Dementia. There is even a podcast.

Sadly, until we are confronted by the disease itself, many of us know very little about dementia. This was certainly the case for our family. We have learned the hard way and wish we'd known about resources like this site earlier!

The various forms of dementia present in a variety of ways and of course each person is unique. These are some of the reasons the disease can be difficult to identify. The resources at the main site are boundless and incredibly helpful. I hope you'll check it out.

My book Dancing With Dementia is now a part of the AlzAuthors collection of resources. I'm proud to be part of an incredible group of talented authors who have used their experiences to reach out and help others.

I have a post on the AlzAuthors blog today as I join the community. I hope you'll visit the website for more details. I'm sure you'll find something to help you and your family along this journey!

Using Improv Skills To Improve Communication

Once Lizzie was in the Nursing Home (NH), we found that her friends dropped away rather quickly.

Many people found it challenging to spend time with Lizzie. She was still outgoing, friendly, articulate, and happy. So what was the problem?

The problem was that Lizzie didn't react as they expected her to react. She got facts wrong. She told stories that didn't reflect reality as the listener remembered it. She didn't remember some of their time spent together. She would sometimes tell stories that didn't make sense. She was sometimes determined to make the friend do something the friend had no desire to do (take Lizzie out to a restaurant).

Lizzie's friends had no idea how to react to these changes and all of that combined made visiting troublesome.

I wish I'd had this video to show them!

This video is a TEDMED. It showcases some positive ways to interact with someone living with dementia.

The people in the video have realized that the guidelines of improv acting are very similar to the guidelines for interacting with someone with dementia. They show a couple of scenarios to help viewers get the idea. They give concrete examples of "go with the flow" and "live in their reality."

I loved the "yes, and" tip. People living with dementia hear No a lot. Using "yes, and" is powerful!

LINK

How about you? Have you seen this video? Any tips to help friends be more comfortable visiting people living with dementia?

Photo by Avel Chuklanovon Unsplash

Dementia: One Size Does Not Fit All

I stumbled across the Daily Caring website earlier and found this excellent infographic. The Infographic was created by Be Independent Home Care.

(this is only a screenshot of the title

- there's lots more!)

A few things I especially like:

• it shows the different types of dementia
• it explains that Alzheimer's is only one form of dementia (I'm always encountering people who don't know this)
• clear layout
• solid information in concise terms

The fact that dementia is expected to TRIPLE in numbers by 2050 is terrifying.

It might be a great resource to share with people who don't always understand.

LINK

How about you? Do you find you have to explain that dementia doesn't come in a one-size-fits-all package? Did you find anything helpful in the infographic?

Video Chats With Lizzie

COVID-19 has changed so many things, including how we're interacting with Lizzie.

Before COVID, one of us visited with Lizzie every day. We'd bring tea and chat. We've found that frequent visits help to keep Lizzie attuned to the here and now.

Enter COVID and that obviously had to change.

While we miss those daily visits with Lizzie, we're glad the nursing home (NH) is keeping the residents isolated and safe.

After the first week, the activities staff in the NH started arranging video chats through FaceTime and Skype for all of the residents. With over 400 residents, this was a big task.

Lizzie hasn't been able to use a phone independently for a few years now. A staff member dials the call and holds the screen so Lizzie can see us. Sometimes she thinks we're on TV. 😀

Photo by Georg Arthur Pfluegeron Unsplash

Lizzie being Lizzie, the calls are usually entertaining. She sometimes thinks whichever staff member is helping her with the call is another daughter. The first time, the poor young staff member was embarrassed and worried we'd be upset. We think it's great. Lizzie believing she is surrounded by family is an awesome thing! Lizzie even braided one staff member's hair throughout one of the calls.

Because the screen is small and there is activity happening around her, Lizzie can become distracted during the calls. Sometimes she wants to introduce us to everyone walking by. Other days she gets tired quickly of concentrating on the call and zones out. It's definitely more challenging than an in-person visit but we're grateful for every call.

We've found a few things that help. Lizzie loves music so we use that, either singing a song or playing one on the piano. We've even found one staff member who is willing to sing along with us!

Complimenting Lizzie works too. "That top sure looks great on you. Your eyes really pop when you're wearing that colour." "I remember you always told us you enjoyed school. What was your favourite subject/teacher/class/friend/activity?"

Pretending to suddenly remember something is a good ploy too. "Oh! Did I ever tell you about that time...?" "You'll never guess what your grandson did!"

We avoid bringing up COVID as Lizzie appears to think nothing is unusual and that we are actually there rather than on the screen.

Overall we're so lucky.

How about you? Anyone else doing video chats with Loved Ones in NHs? Any tips on distractions? Topics to use or topics to avoid?

Welcome!

Welcome to Dancing With Dementia.

Our family has been dealing with dementia for a few years now, and as a writer, I find it really helps to put my thoughts and feelings down on paper ... or screen as the case may be.

In many ways, Dementia hit us without any warning. We're an immigrant family and we didn't grow up with older relatives around us. We didn't know the difference between normal aging and signs of dementia.

We made a lot of mistakes.
We did a lot of things right. Many of these right choices were simply by accident.

We're not perfect, but we're working hard to ensure our Loved One, Lizzie, has the best quality of life possible.

This blog is going to be a way to share information, ask questions, and definitely provide a few laughs. As you get to know Lizzie through this blog, you'll see that there will always be laughs and smiles when she is involved! Smiles From the Dementia Files will be a regular feature.

For practical tips that we've found very helpful, you can check out my YouTube channel. I'll talk more about these tips and others on the blog as well.

The book, Dancing With Dementia will be available on March 31, 2020. It covers the story of our journey through Dementia as well as collects tips and advice into handy lists.

The book is now available for preorder at the following locations. The price will be at $0.99 (US) for the preorders and the first few weeks after release. Then the price will jump, so get your copy now!

Amazon.com           Amazon.ca.          Apple Books.           Barnes & Noble          Kobo.      

Add it to your Goodreads shelf

For more info on the book, check out my website jemifraser.com or the MCBook tours page.

I hope some of the information you find here on the blog will help you along in your journey as we learn the steps to the Dementia dance together!