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?

Smiles From The Dementia Files: Episode 2

Our Loved One Lizzie is an amazing lady. She is full of fun and mischief. She's always been quick-witted and more than willing to share her opinion on everything!

In our experience with dementia, we've found that laughter is important. It's a key to coping for all of us, including Lizzie. She enjoys being able to shock and surprise those around her with her quick mind and tongue. Having dementia hasn't taken that from her yet, and we hope it never does.

Photo by Roman Kraft on Unsplash

Episode 2 - Memories
Circa 2 years after diagnosis

According to Lizzie ... 

Lizzie was in charge of escorting the little kids to air-raid shelters during WWII because she was organized, strong, and smart. Lizzie ensured that the children had partners and walked in pairs in an organized fashion from their classrooms to the shelters. She checked that each child carried his/her gas mask. If anyone became stressed it was Lizzie's job to calm them down and make them feel better. Once they arrived at the shelter, Lizzie counted to make sure no one was missing. To help everyone relax, Lizzie led them in songs and story-telling.

Lizzie was born and grew up in Scotland in a city that was a frequent target of bombing. The trauma of living through that kind of experience has life-long impacts.

Lizzie was also 6 when WWII ended, so she might be a bit optimistic about her role in these events.

Of course, we congratulate her on being a responsible helper and encourage her to share more of her stories with us.

Memories (whether they're historically accurate or not!) are a great way to encourage conversation and connections.

How about you? Any recent smiles?

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?

COVID-19 and Lockdown

The world is currently dealing with an incredibly serious virus that is calling for unprecedented safety measures being taken in many areas.

For us, one of those safety measures is that Lizzie's nursing home is in lockdown. No visitors allowed. (Our home is making exceptions for end-of-life situations and allowing limited visitors who are healthy and pass screening.) Within the home, the residents are staying within their own units (about 30 people so still opportunities to socialize) and there are no big gatherings in the common room.

We're really glad the home is in lockdown even though it means we can't see Lizzie. More than anything we want her to remain safe and healthy.

Our nursing home has a terrific staff. They are working hard to keep the residents active and talking with them and each other.

If Lizzie was on the 1st or even the 2nd floor, we've go see her and wave through the window, but from her floor she wouldn't be able to see us. At the beginning of lockdown, there was also still a lot of snow and getting around to her side of the building would have been tough anyway!

Photo by Andreea Popa on Unsplash

Lizzie no longer understands how to use a telephone so calling her isn't an option.

Within a few days of the lockdown we got a call from a staff member. They were arranging Face Time and Skype visits between residents and family. A staff member sits with Lizzie and runs the call and helps her out with the conversation. Sometimes a person on screen doesn't make sense to Lizzie.

What a great idea!! Creative problem solving at its best. It has made us all a lot happier.

How are you coping if your Loved One is in a nursing home?
If your Loved One is at your home or on their own, how is it going?