Flickering Magic

Flickering Magic

Thank you for joining me. . .
. . .you are my sunshine!!

Have you as a caregiver encountered any communication issues recently? If you realize it could happen along your path, maybe you can reduce your stress and worry by knowing others struggle with this as well!

Eleven months ago, when I wrote about it here on this site, I asked, Where Do The Missing Words Go?

Back then, My Love was beginning to have serious problems finding words to explain his thoughts.

I wondered how terrible it must feel to be unable to ‘call up words on demand’ to speak your thoughts. At that time, if no other way worked, he used charades, a concept replacing the word with an idea, communicated via an ‘acting’ mode.

Memory loss is not just forgetting where you put the keys, not just taking longer to think of a friend’s name, not just bringing home eggs when you meant to buy bread. I have witnessed My Love’s Alzheimer’s brain, the boss of the bodily functions, destroy his abilities on all levels, bit by bit, nipping at a life that once emanated from the person, the life that once dazzled the world with vitality. His lost words are just like his weakening ability to walk, and his body’s confusion about when he is supposed to sleep.

I know how frustrating it is when I cannot magically find ‘that one word’ to describe what I am trying to convey. But to lose connection to all our words must be more than discouraging, unless of course, you have memory loss, plus anosognosia, and don’t know it is happening.

In the months since I told about My Love’s word finding difficulties, his Alzheimer’s has progressed. His memories and recognition of his daily surroundings, have all but disappeared right along with his words. He can no longer use charades because the concept does not seem to be able to transmit to the ‘acting’ part of his brain.

On the other hand, now I must try acting out what I am asking of him. For instance, to take his pills, I put one pill in my hand and raise it to my mouth…wait for him to follow. Then I put the glass of juice in my hand and lift it, to show to drink it with the pill…wait for him to follow. Sometimes he does not understand this and I must take the glass, put it in his hand and lift both hand and glass to his mouth to get him to grasp what I try to say with words. And sometimes, it is more complicated than ‘acting out’ with pills!

Caregiving just takes a great deal of patience, counting to ten, being able to be flexible, going with the flow, one moment at a time. I aim at being kind, knowing I do the best I can with what I know at the time. 🥰

It is incredible to note how common it has become when one sentence cannot be completed. Like a child, the sounds come, one or two at a time. But My Love’s 81-year-old sounds are not necessarily recognizable as words anymore. The attempts are there. He realizes, momentarily, when he cannot find the right word. And then he tries again…not remembering that he tried to find that word just moments earlier. I am aware of his brief frustration from word loss; but, that, too, disappears quickly.  

Sadly, the magic of my soul needs recharging. Yes, I become impatient listening, but I do try to help by suggesting words— it is hard to find words he understands! He does not even understand when I try to act out the words. The connections are definitely disrupted.

It is my job, me, My Love’s partner and caregiver of over eight years, to step in, with a smile and laughter, to bring life back into his face, vitality into his life. I guess at the words he cannot find, as if I could magically discover his thoughts and say them out loud…but my magic wand does not always work!

 It has become difficult for him to give me a clue. His ability to get the thought from his mind to his mouth seems to have been cut short by the brain areas that control those complex functions. The available means to tell me have diminished and, as a result, so do our conversations.

My Love may be losing many of his words, but he does still have feelings. He still can laugh, he still looks at me with a heart-felt, kind smile, a sense of thankfulness that I am there, an uncertain awareness of what is going on around him. Yes, even if he cannot explain them, he still has feelings.

At times, I chuckle when I respond to him with what I guess he might be saying—he still has his scripts, so deeply embedded, that his response will invariably be, ‘right,’ or ‘I know’  or a nod of the head, even when the answer I give could not possibly be correct!

Every so often, I wonder if I can keep my caregiving magic alive during the later stages of Alzheimer’s. I have been told it will become harder to communicate as we walk the later steps of this journey together…I, too, am learning! But like I have done since day one, I will remain My Love’s ally and partner, his caregiver, regardless of what I am asked to do.

I can’t stop… even if I am getting tired…it is time to get the wizardry back into my life and get the magic, beginning to flicker in that wand, recharged!

🌞I hope this little update of a caregiver’s life in the world of Alzheimer’s magically melts away some stress for you today!!🌞

Before you leave, check out the rest of this site especially Caregiver Tips!!
Sign up to get notices…and we’ll watch for you next time….! 🌞💝🌷 ~ jas

Flickering Magic! (c) 2020 Judith Allen Shone

Goin’ to the HOP!

Goin’ to the HOP!

At my age I can say it . . . I remember going to the hop, the teen canteen . . . and dancing to songs like Bobby Darin’s Queen of the Hop and Danny and The Juniors’ At the Hop!

I recall seventy years ago ‘hop‘ meant jumping up and down on one foot, and then, a few years later, we did that jumping up and down at a party and renamed it dancing, as we had learned in class— where the boys stood on one side of the room and the girls clustered on the other side. We were no longer swinging and swaying, we were bopping at the hop! That dancing would soon be renamed – again – to rockin’ and rollin’ and then, when the Bunny Hop was popular, we learned to ‘line dance!’ Even more recently, Hip Hop evolved for the physically fit!

Today when I turn on the ‘oldies,’ my loved one’s eyes light up, his arms start reaching out, his shoulders rise and fall, his body comes alive. . . right there in the chair where he spends most of his recent hours, his head is bobbing back and forth with the beat of the music.

He does not remember the song titles. Currently in stage 7 of Alzheimer’s, he can no longer retrieve the memory of the specific dances, the names of partners he danced with, nor the dance hall where they went, but his muscle memory has not forgotten! I love to watch it . . . the foot bouncing, the arms and hands twisting, and the big bright-eyed, feel-good smile on his face! I clasp his hands, and he continues to sway but he does not get up to dance. He just seems to be happy with the feeling. What better morning activity than to listen to music that makes someone feel that good?

He was a good dancer in his day, and even as recent as five years ago he still had his ‘jitterbug moves’ . . . I am reminded how quickly our abilities can vanish!!’ (Read “Fancy Pants Dancer,” chapter twenty-four, in Is There Any Ice Cream?)

The other day I found the word hop presented with a new meaning, which fits my later years in life! H.O.P. can mean Helping. One. Person.

This new, expanded definition acknowledges that at this stage of my hopping years, one person is all I can help! I know I cannot be a caregiver for more than one loved one, at least not at the same time. When our dog was terminally ill, I learned that!

This new idea of H.O.P. makes me feel very happy that I can still hop! Sometimes I have to hop faster than I ever hopped before! I have to ‘hop to it,’ or I better ‘get crackin’, or ‘shake a leg’ . . . oh, right, those are not hops . . . but anyway, sometimes I do have to move quickly to help what needs helping!

This idea of H.O.P. validates my role in the caring world, confirms my value as a caregiver, where I am giving the best help I can, 24/7, to my one person…in a style related to my age, of course.

For a brief second, I even thought of my niece and her husband who raise hops, and wondered if the calming effect of beer with this stability agent could help those on their journey. But, I felt I would be reaching too far to suggest we all meet at the pub on Friday nights!

Then, just to see if I have missed other, more recent, definitions of hop I checked the dictionary. And there I spotted another hop meaning new to me: “passage, trip, journey.” But it makes perfect sense, I just do not recall learning it. As a result I believe this circuitous search has brought me to the conclusion that some caregivers are HOP SURVIVORS! I know I am!

Join me! I am sure anyone who has any amount of caregiving tenure providing care for one who is too fragile to carry on alone, a position of grave responsibility, has earned a HOP Survivor card.

HOP SURVIVORS deserve to feel good about themselves! We have endured the same type transitions as the word hop itself—from our first days stepping onto our path, and then adapting to our loved one’s changes, hopping to respond to their needs, until the days we accept the gift of having their life in our hands. Through our years of caring we have been called kind, desperate, compassionate, frustrated, empathetic, angry, patient, loving. Now we can add one more characterization that shows concern HOP SURVIVOR.

GET YOUR OWN HOP SURVIVOR card, below. Then, every time you look at your HOP SURVIVOR card, SMILE 😊, feel that warm, fuzzy feeling, 🥰 knowing you did an amazing job, and remember, you are a HOP Survivor! A ‘Helping-One-Person Survivor.’ You deserve to feel special!

DOWNLOAD here . It is a 3-1/2″ jpg image. Print it out on 4″x6″ photo paper, and then confidently write your name on it! 🤗 ~jas

I know, maybe I went the long way around, but some days I feel like being whimsical…it is my mental detour. . . this time I talked about my visions. (See Night Visitors, My Love’s visions story) Question: are hallucinations contagious?

By the way, I even found a HOP SURVIVOR cup in a store!

. . . Until next time, stay safe and take care of you!

~ jas

Goin’ to the Hop (c) 2020 Judith Allen Shone

dancers art: Clker-Free-Vector-Images
frog in grass: © dannyphoto80 Megapixl.com
frog w/ crown: © Vilax | Megapixl.com
frog hopping: © Drawinglounge | Megapixl.com
frog card art: © Dobrynina | Megapixl.com
Watercolour flowers: lucianapappdesign

New book was released August, 2020.

Did You Hide the Cookies?
Inescapable Heartaches of Caregiving for My Love with Alzheimer’s, Anxiety, and COPD, Accepting the Gift of Caregiving, Part Two

this series begins with the stories in the book published in 2019:

Is There Any Ice Cream?
Surviving the Challenges of Caregiving for a Loved One with Alzheimer’s, Anxiety and COPD, Accepting the Gift of Caregiving, Part One.

LARGE type – easy reading.
BOTH BOOKS can be ordered from all booksellers online including Amazon, for eBook, Paperback or Hardcover.

Another Day Dawning

Another Day Dawning

Ever since we began our journey in Alzheimer’s world well over eight years ago, My Love has been a Cookie Monster, not to mention his craving for ice cream. Hence the titles to the two books, Is There Any Ice Cream? and Did You Hide the Cookies?) In truth, not a day goes by that he has not asked me those exact questions . . . and, yes, I do hide them.

My Love is now in late stages of Alzheimer’s disease. I see big changes happening, I witness memory slides I would not have believed years ago. I have to be the encourager, keeping him active as much as possible. But COVID-19 has taken a toll on those at high risk, who are restricted to staying distanced, even isolated. He will do some basic chair exercises with me each day. He still smiles when I play John Barry music, so I try to play it often. On the TV, it’s the old black and white, ‘calmer’ movies, with familiar actors and simpler plots, that tend to keep his attention.

Otherwise, I find My Love is not interested in doing more than watching the digital photo frame rotate through the pictures of his family one more time. He still points to pictures of himself to tell me “there I am” or “that is me” almost as if he might be forgetting that connection himself. I rarely ask if he can tell me who everyone else is at this point – it makes him feel bad when he cannot answer.

And so when I hear My Love clattering in the kitchen I recognize that his interest has begun to wander, telling me he is bored.

That’s when I go find a couple pictures for him to colour or paint.

(Download below two sets of free drawings from the internet for colouring )

I put out his brushes and watercolour paints, and a small glass of water (heavy enough so it won’t tip over). Then I drop water on a few colour squares and begin to paint a flower petal or sky so he knows what to do.

Generally, My Love follows my lead and takes a brush from the water and continues to paint the picture. He currently remains engrossed in painting for about an hour, which is a long time compared to other activities. I now offer him much simpler pictures to colour than I did a year ago. In fact, a year ago, he was drawing and painting his own compositions that are now framed on his Gallery Wall. (Read Art and Music As A Brief Intervention in this site.)

When paints no longer interest My Love, I find a picture book he loves to look through. Pictures of the world from the sky. My Love used to look at it for hours. Now his attention span is greatly reduced. But if I sit with him and we talk about each picture, he stays with me and looks at the book. I love doing that, but can’t do it all the time, so I suggest it when I can sit for a while.

But time and Alzheimer’s have stolen his desire to do much. Some days I see that the disease has removed his memory of even creating those original pictures. I am glad he still likes to paint. It occupies his time and is something he still can do. But mostly, he truly is happy to have completed a picture when he is finished.

I feel good when My Love smiles and tells me, “I did that.” His tone tells me, “of course!” Watching him paint is a warm fuzzy for me, too. 😚

And the cookies? I just this minute took two little chocolate stick cookies and placed them on My Love’s table with a napkin. He just looked at me.

“What are those for?” he asked me, in all seriousness.

I put my pinched fingers toward my mouth.

“Are they for me to eat?” My Love asked, as he imitated my movement, putting his empty hand to his mouth. I’m not sure he connected with “cookie.” I could not believe what I had seen. I smiled and shook my head yes. He smiled in return.

Does that mean his love for cookies is slipping from his memory . . . is the memory of loving cookies fading? It will be sad for me, but My Love won’t even know.

Another new day is dawning, and as always I just have to remain flexible, in the present and lovingly helpful.💕🌷

Four of the pictures in the download 1

I share here, a download of 12 drawings on white background I found FREE in various places online. If your loved one likes to colour or paint, use them. You need a printer or maybe someone can print them out for you. Art has been an activity that has provided many happy hours for My Love through the years. I hope it will for your loved one, as well.

DOWNLOAD 1 DRAWINGS (set #1) -14 pages, in pdf format

Four pictures in download 2

DOWNLOAD 2 DRAWINGS (set #2) -12 pages in pdf format


Another Day Dawning (c) 2020 Judith Allen Shone

BE PREPARED for the role of caregivermy stories from my life as a spouse-caregiver are written in real time just like the stories I tell here. Read the stories I share to become prepared for life in the world of Alzheimer’s!

For more book information, visit caregiver-books.com

Order from local independent book stores, in paperback, hardcover and eBook. Thank you. 🍦🍪 LARGE print in paperback and hardcover.
A Different Drummer Books Burlington, Ontario,
The Bookworm in Omaha, Nebraska,
Maria’s Bookshop in Durango, Colorado

or order online from most booksellers, including Amazon.ca