The Visitor

I recognize the sound of her footsteps in the hallway. Is she going to visit me? She’s here!  I have to try to open my eyes or she’ll think I’m asleep.

“Hi Mama”, she says with a bright smile. I wish I could respond to her greeting. She’s placing her hand under my chin, and turning my head a little so I can look at her. Oh! I think I smiled!

She begins the visit with her usual question “How are you feeling today?”  How I wish I could tell her this time…I just don’t know how.

I try to reach out to her, but my hands won’t obey. They feel as if they are glued into a fist. I’ve been holding tightly to something, but I can’t remember what it is anymore, and can’t let go. Somehow my fingers have forgotten how to unfold. “What are you holding onto, Mama?” She asks as she slowly opens my hand. It takes a while and it feels a bit uncomfortable, but I love how she holds my hand and rubs my fingers as she talks to me.

Yikes! She always seems to think it’s necessary to tickle my feet.  I wish I could move my feet to let her know I can feel it….oh well. I grimaced. At least I think I grimaced.

“Do you want to sing with me?” she asks. Yes! She’s singing my favorite song, “My wild Irish rose”. I want to sing too! I try, but my mouth doesn’t work right. I think she sees me trying because she is beginning again.

Am I singing now? I think I am…but it’s so hard to tell. She asks me again, “Come on, Mama, sing with me.” I must not be. She looks at me with anxious eyes; I desperately wish I could make my mouth work! Another song? I’m glad she doesn’t give up. I’m trying – really I am. I love listening to her sing; I wish she could know how loud I am singing on the inside.

My mouth is so dry that it doesn’t want to work right. I’ll try to tell her I’m thirsty. Oh, what’s this, grape juice? Maybe she understood. Yuck! It tastes so blah. She seems to think it’s my favorite. Okay, I’ll drink it. I think I’m drinking.  Wow, something cold is running down my neck – maybe it’s the juice.

Oh yeah, I need remember to swallow. Swallow, swallow, swallow – that’s better. Is it all gone? I think so! I guess I feel a bit better, but I wish I could tell her that grape is not my favorite.

Oh no, here comes the wet washcloth. I don’t like this part. She wipes with it all over my face; eyes, nose, mouth – even my neck where the juice was cold. Now comes the lipstick. It’s such a pretty color. Oh good, she’s putting it on me! I hope I look nice.

Now she’s praying. I love it when she prays for me. She says the words that I wish I could say out loud to God. I can feel God’s presence, I wonder if she notices? What’s this? Am I crying? It’s so hard to tell…

All done – she’s getting ready to leave, “Bye Mama”, she says. “I’ll see you when I come back.”Oh, how I hate to see her leave! I hope she’ll be back again soon.

Hmmm, I wonder who she is?

Listen Up

Listening is essential. Your loved one may be trying to tell you something. It is important to listen.

The initial awareness of dementia brings to mind several concerns and fears both spoken and unspoken. Some are deep-seated and unconscious and others are at the surface. Not everyone is comfortable voicing their worries. Body language speaks volumes.  As soon as you become aware of an issue, listen purposefully for both the verbal and non-verbal messages.

When my Mama was at the beginning of her journey through dementia, she was able to talk. Even then, her thoughts and ideas were distorted by what we referred to as her “loop”. It was a statement that she grabbed onto and repeated over and over with increasing frequency as time went on. The “loop” eventually pushed out any other form of conversation.

Listen with your whole being. Smile, make eye contact, and lean in to catch each nuance.
Listen with your whole being. Smile, make eye contact, and lean in to catch each nuance.

Later, she began living in a world that was rather disconnected to reality. She would speak, but it wasn’t in a conversation manner – it was more like a series of statements that didn’t flow with the rest of the conversation. The loop was gone, but it was as if her words came from some automatic speech response area of her brain. For example, if you asked her how she was, she would reply, “I’m fine.” even when she clearly wasn’t. Or, if she was asked a ‘yes’ or ‘no’ question, she would reply, “Oh yes” the majority of the time.

As time when on, and her speech became even more limited, I relied on observations. Indicators such as wide swings in her blood sugar levels told me she wasn’t feeling well even when there was no fever.

Sudden agitation was also often an indicator of pain. If she said something over and over that didn’t make sense, and there wasn’t anything obviously wrong, I would try offering her a drink of water or a snack.

Now that Mama is nearing the end of her earthly journey. She now communicates with me with her eyes. They look at me when I smile and fill with tears when I sing.

At some point, your loved one’s ability to express thoughts and feelings with words may no longer be an option. Thankfully, words are not the only form of communication.

I believe there is an enduring willingness for our loved ones to communicate. Dementia creates a barrier to getting the message out.

Somewhere deep inside there seems to be a part that is aware, on some level what is going on around them. Listen. What do you see?

What non-verbal statements have you heard?

Sing, sing, singing the blues away

Are you feeling blue? Overwhelmed? Take heart – or take up singing.

The almost magical affect music has on those suffering from dementia are well established, but what about those who care for them?

Here’s some good news: I just read about a study that showed a wonderful side-benefit to music therapy. It seems that it does more than enhance the quality of life of dementia patients – it also appears to improve the mood and emotions of caregivers.

Another surprise, according to this five-month study conducted in the UK, was that the benefit lasted well after the trial ended, measurements taken two months later showing continued improvement.

Music is the language of the soul. It appears to enter the brain differently than words alone or other noise. To gain the most benefit from musical therapy, it is important to be engaged in the music somehow, rather than just having it play in the background.

A few ways to really engage are:

Singing, humming or whistling is the best way to connect to the music. Also, the use of headphones can be helpful as well as viewing a music video. The most effective songs seem to be the tunes from a persons ‘formative years’. For my Mama, who was born in 1931, the top hits of the 1940s as well as hymns had the most impact on her. A variety of online sites such as www.youtube.com  can provide easy access to a variety of music videos.

Not sure what music is best? Try a song and watch for a positive reaction. Develop a playlist. If it turns out that the list is short, it is okay. If someone has dementia, songs can be played over and over again as long as they are helpful to the listener.

Have you noticed this to be true in your experience?

For Want of a Word

While feeding Mama her thickened juice today, I suddenly wanted to hear her voice. I wanted her to say something—anything. It has been several months since she has uttered a single word.

I even tried to ask her some easy ‘yes’ questions to try to see if she would give me one of those automatic responses. With a smile, I words-finishing-well-in-lifelooked into her eyes and asked, “Do you like your juice? Is it tasty? Would you like some more?”

She tried to answer. I could tell by the almost imperceptible movement of her lips as well as the sweet expression on her face that she really wanted to say something. She looked at me intently as I continued to ask her questions. I finally gave up and began singing to her as she finished up her juice.

I got to thinking about words. Words are great. Words hold so much power—so much potential for both good and evil. Kind words are gifts we can give each other; to our spouses, family and friends.

Proverbs 25:11 states, “The right word at the right time is like a custom-made piece of jewelry,” (The Message Bible)

On the other hand, words that are wanted, but not received are heartbreaking. I wish I had a recording of Mama’s voice from when she could talk. But though I don’t have her voice, I still have her and I give her the gift of hearing my voice as often as I am able.

Later, as I was thinking about it, the words to an old nursery rhyme floated through my head:

For want of a nail the shoe was lost.
For want of a shoe the horse was lost.
For want of a horse the rider was lost.
For want of a rider the battle was lost.
For want of a battle the kingdom was lost.
And all for the want of a horseshoe nail.

Words are like that nail. They are building blocks of both relationships and memories. They can bring joy, provide hope and offer second chances. We would all benefit from a ‘word at the right time’.

Instead of a nail, the rhyme could be rephrased:

For want of a word the joy was lost
For want of a joy the chance was lost
For want of a chance the time was lost
For want of a time the hope was lost
For want of a hope the memory was lost
All for the want of a word

With the prevalence of phones, tablets and computers we can instantly give timely and thoughtful words to anyone we know, no matter where they are in the world.

Is there someone who needs to hear your voice today?

Jingles

 

  • “I am stuck on Band-Aid brand, cause band aid’s stuck on me.”
  • “Oh, I’d love to be an Oscar Meyer wiener, that is what I’d truly like to be, cause if I were an Oscar Meyer wiener, everyone would be in love with me.”
  • “In the valley of the jolly-ho, ho, ho. Green Giant”radio-finishing-well-in-life
  • “Like a good neighbor, State Farm is there.”
  • “I’d like to teach the world to sing in perfect harmony, I’d like to buy the world a Coke and keep it company. It’s the real thing.”
  • “Wouldn’t you like to be a Pepper too?”
  • “My bologna has a first name, its O-S-C-A-R, my bologna has a second name it’s M-E-Y-E-R, I love to eat it every day and if you ask me why I’d say, cause Oscar Meyer has a way with B-O-L-O-G-N-A.”

Are these jingles ringing any bells? Any get stuck in your head? That’s exactly what they were designed to do.

According to Wikipedia: A jingle is a short tune used in advertising and for other commercial uses. The jingle contains one or more hooks and meaning that explicitly promote the product being advertised, usually through the use of one or more advertising slogans.  Jingles are a form of sound branding.

Was your loved one raised on radio? Or TV? It’s likely that some of the  jingles and theme songs played regularly on radio and television shows will be more than memorable. And anything that stirs a memory is helpful to activate something wonderful and pleasant inside your person.

Some of the older radio show theme songs are: The Lone Ranger, The Green Hornet, Turn your Radio On, Yukon King, NBC News and Bill Stern Sports Newsreel.

TV show theme songs such as Mr. Ed, Rawhide, Bonanza,  The Beverly Hillbillies and, of course, the very memorable I Love Lucy show may also stir something up.

These old tunes had a profound effect on people, and with a little effort and computer time you can easily discover just  the right ones from your loved one’s earlier years. Many are free to download for you to create a play list that might just awaken a memory or two.

Here’s a few more for the road…

  • “Plop, plop, fizz, fizz, oh what a relief it is.”
  • Once upon a time there was an engineer. Choo Choo Charlie was his name, we hear. He had an engine and he sure had fun. He used Good & Plenty candy to make his train run.
  • See the USA in your Chevrolet, America’s asking you to call.”
  • “Halo everybody, Halo. Halo is the shampoo that glorifies your hair.”
  • There’s just one Schlitz, yeah, yeah—nothing else comes near. When you’re out of Shlitz—you’re out of beer.
  • Lets All Go to A and W. Food’s more fun at A and W. We’ll have a mug of rootbeer, or maybe 2 or3, make the perfect size from the burger family.

‘Till next time, “Happy trails to you, until we meet again.”

What jingles do you remember fondly?

The way the ball bounces

Sitting on the floor playing ‘roll-the-ball’ with my little granddaughters, I realized the fun of playing with a ball is an activity that has really stood the test of time.

When my Mama lived with us she was in around the mid to late stage of dementia. One day she and I were in the living room visiting. Mama was sitting on the couch and I was sitting on my exercise ball–I’ve heard some actually use them for exercise, but mine is predominantly used as a chair.  She seemed particularly alert and focused that day, so I decided to see if she would be able to play a little two-square.

I stood up, got her attention and gently bounced the ball her way. She caught it. The look on her face was a mixture of surprise and delight. Since she was in a good place, at that moment, she bounced it back to me. We had a blast bouncing the ball back and forth for about 20 minutes. I could tell she was tiring of the game when she quit returning the ball.

We played that game on a regular basis while Mama lived with us. It was fun to have an activity we could do together. On a real good day, when she was really ‘clicking’ I would even bounce the ball a bit off of center to see if she could adjust –which she usually did quite well.

Even if someone does not have the strength to bounce a ball, a balloon can be just as fun. For a group,  ‘balloon’ volleyball can be delightful—even batting it in the air by using a pool noodle can be enjoyed by many. Anything that bounces or can be bopped or rolled never seems to go out of style, and can play a part in the joy of life no matter what the age or ability.

What activities do you find that your loved one particularly enjoys?

Happy Birthdays

Today, my Mama is 84 and 1/3. It got me thinking about birthdays and how many she has had. The carehome where she resides holds a birthday party each month for all of the residents who have had a birthday in that month.

Everyone loves it. The festivity always includes music, cake, party hats and of course singing “Happy Birthday”. Only a handful of folks in the room know what day of the week it is, let alone when it’s their birthday. That however, does not stop anyone from having a wonderful time.

I realized, that the elements that go along with a birthday celebration have got to be one of the most repeated, and therefore ingrained aspects of our culture.

Many studies as well as our own experiences have shown that heart songs (such as “Happy Birthday”) live in a place other than the part of our brain we use for general memories. How else could it be explained that my Mama, who hasn’t recognized me for years, can’t remember anything about her life or even the previous three minutes could still sing songs with me from her younger life. Even when she was unable to speak, there were days I could pull one of her ‘heart songs’ out of her – at those times we would live in the moment.

The songs we sung were the ones we knew from her childhood and teenage years. If any qualifies for a life or heart song, “Happy Birthday” would certainly make the list.

I have decided not to wait for Mama’s next birthday to sing to her. Since she is in the final stages of dementia, the Happy Birthday song alone will have to do for her.

But may I suggest that if there is any possibility of your loved one wearing a party hat, eating birthday cake (even if it’s angel food), and blowing out a candle accompanied with a hearty round of “Happy Birthday to you…..”. Give it a try.

Why wait? Have a party as often as you’d like—your loved one won’t realize the repetition, and really, you never know how many birthdays are left.

Are we there yet?

“Are we there yet?!” What parent hasn’t heard that question? For that matter, who hasn’t muttered it themselves when a project or task seems endlessly endless? Children usually can’t read maps and understand miles per hour, so the amount of  time that trips and journeys take can seem like a mystery to them.

As caregivers, we are also unable to predict the length of our loved one’s journey. Even though our intent is to finish well, there will be times that our hands will sag, our eyes will droop and our soul will sigh. We will grow weary, become exhausted and experience frustration at the whole situation. At that point, we, just like the little children will lament, “Are we there yet?”, and “How much longer?”

You need relief. You need help. You need sleep. This is the time when respite moves from a luxury to a necessity. It becomes essential. Look around. Is there anyone in your world who could step in for you for some number or hours so you can get some ‘me time’?

One common characteristic of caregivers is that they don’t usually want to ‘burden’ anyone else with their responsibility. We have to understand and become convinced that our friends and family love us and would be willing to step in and help, but they typically don’t know what’s needed. And if you aren’t willing to ask for help, no one will ever know. Asking for help is not a weakness, it is a gift you give yourself so that you can continue to care for your loved one.
When my Mama lived with my sister, we would take her to our house on occasion to give my sister respite, when she lived with us, we would take her to a care home (we called it her vacation resort) that received ‘guests’ for short periods of time simply ford folks to get breathers and a good night sleep. It made a difference.

It wasn’t until after Mama had to live permanently in a carehome that I realized how much time and energy her care had required. You don’t often realize when you are in the middle of it—I actually gained weight after Mama left because I wasn’t jumping up every few minutes to do this or that in the course of caregiving.
There were a lot of fundamental things we did for Mama’s sake to help her reside as comfortably, safely and joyfully as possible while she lived with us. Respite was the essential thing we did for us.

Singing along

One of the most surprising discoveries we made in this adventure called “Caring for Mama”, was that the ability to sing does not decline at the same rate at other abilities – even talking. It could be, as my husband says that “Music does not reside in the brain, it lives in the soul.”

That certainly proved to be true in Mama’s case.  Even after her capability to talk or carry on any type of conversation was gone, her notes-finishing-well-in-lifeability to sing remained.  We believe the challenge is to discover exactly which songs or type of music ‘strikes a chord’ with your loved one. We were fortunate as our family had songs while we were growing up on a regular basis–especially on family road trips.

The deepest held songs may be the ones that your loved one connected to in their youth. For example, we took Mama to attend a concert. The music style was from the 1930s-40s. The singers were accompanied by a piano and banjo players. Mama watched the players on the stage intently and seemed to enjoy the music. About halfway through, the band played “You are my Sunshine” and she surprised us by singing along!

I was quite astonished as I had never heard her sing that song before. With a bit of research, I discovered that it became popular in the late 1930s. Mama was born in 1931, so it was one that she connected to early in life and apparently it stayed with her even into her 80s.

Sometimes, the journey is long….

Caring for you loved one can be a mix of joy, duty, exhaustion, determination, honor, love and tears.

What is your story? Who are you caring for? What are some of your coping strategies? Who helps you? Why do you keep going? How do you find respite?

Please share any ideas, tips, helps and wisdom with others who are walking down this road.

I remember one particularly difficult day. I was so exhausted – Mama needed so much care. I thought about the promise I made to Daddy right before he passed away. I told him he wouldn’t have to worry, that I would take care of Mama. But right then, at that moment, in the middle of my tired I wasn’t sure how much longer I could go on. I cried out to the Lord and asked Him to help me finish well.

His answer came by providing a variety of help day by day as we continued the journey. The biggest answer was that no one can do this alone. Family, friends, agencies and yes, Blog posts and comments are ways to get help, help others and find coping strategies to continue walking day by day.

Great starts are easy, the goal is to finish well