Fatigued, in need of respite

Fatigued, in need of respite

Is it the heat? or maybe the humidity?

I sure notice how tired I am this month. Is it because summer is actually here and sunshine is pouring in our windows, baking us as it does each year? Our AC is working hard, the dehumidifier has to be emptied often and the three fans in the room are at full speed. But even with my protector screen in front of the southern window, the heat tends to make me sick.

I won’t open the door to let in the breeze because nothing filters out the humidity! My Love’s COPD cannot handle the humidity. My body cannot handle the humidity…on this one thing we do agree!

So what do I do? In the afternoon, if I see the tree tops swaying and realize there might be a small breeze blowing, when the sun is on the other side of the building, I open the door a crack, daring the humidity to come in, “…what point to run a dehumidifier with the door open?” I ask.

My Love reaches for his puffer. I know effects won’t last and he’ll feel a need for another puff soon. I step out onto the balcony and shut the door behind me. It is nice to feel the wind brush my arms, and notice my ”’much too long’ hair blowing around….to realize it is summer…the second one since the pandemic began. We have been inside for so long!

I have just spoken with the head of the day program where My Love attended 16 months ago. They anticipate possibly being able to open, on a limited-participant-each-day basis. Oh, how nice to hear that. It had been such a nice few hours for me each week. She asked what I thought about starting again…after our second vaccines this month.

How different it is now than those months ago. How changed I am, and My Love is. How much older I feel having been isolated so long. I consider how much My Love’s memory has lapsed since we left the program for lockdowns. I consider how much functionality his body has lost, how much more I must do for him, think for him, say for him—he is never alone. All the time now I am two people, multi-tasking, double-track thinking, perhaps? Will he fit in with the day program folks now? I wonder.

He doesn’t register anything about the virus, he hates the mask on his face and has no idea why he must wear one. The one criteria of concern is the need for social distancing. It will have no meaning. I seriously doubt he could consciously understand the need to stay at 2m from someone else. He has no clue about the virus, even when I mention the ‘big sickness.’ He does not remember my words, let alone know what they mean. Masks and distancing are off the charts of understanding.

But, I definitely need respite. I am aging faster than I would have believed possible. I feel old. Much older than the sixteen months that have passed since we have been isolated, like captives, in our small apartment. I need the stimulation of other people. I know I need some grooming, some TLC time for me.

Without a doubt, I need to be refreshed, recharged, repaired, the same as someone focused on driving all day needs a rest, I need to relax with both eyes and both ears, and full mind attuned to something other than my responsibilities toward My Love’s every need. I have ‘grabbed the bull by the horns and moved forward,’ long enough without help.

Our second vaccines were last week. We had relatively little reactions, and this week it seems we are OK. I am calling the services we had before the pandemic halted our lives to see if we can get some help for My Love and respite time for me.

Hopefully, the powers that be will acknowledge my request for someone to help with showers and shaving. Someone to talk to him while I go to the basement to do loads of laundry. Hopefully, someone will come and relieve me of continual conversation…ultimately with myself…yet provides a closeness that stimulates his mind. My wish is that someone else can keep him from wandering off to find secret spots: to hide his puffers, to deposit his pills he’s put in his pockets, to hide his accumulated, folded squares of Kleenex, to remove and hide his Depends without telling me. It is amazing how quickly he can scoot down the short hall, after asking permission to go to the bathroom, and carry on all his clandestine activities in the back rooms….all while I am in the kitchen cooking or washing up. Unfortunately, from there I cannot see or watch him. If I did not know better, I would say he planned his mischief so I would come out and play with him! But alas, he is just ‘doing things without thought’ like many one-year-olds…he has not words to tell me, he just does…that’s his level now in stage seven.

Light at the end of the tunnel is having someone to relieve me while I take a nap; even if they can look through picture books together while I catch up on another of many forgotten chores. I am not young anymore. My next birthday will be my 80th. I understand that having respite might not come from the day program if he can’t meet their criteria. Even though I don’t have the energy to do the many other things I used to do, planned respite hours from somewhere just might allow me again to be a rested caregiver, to carry on from one respite period to the next.

signoff initials

I know exhaustion happens to us all. Take note. Take action. That’s the plan.

Do you have your plan? Visit our blogsite page Respite Ideas. Time to make your plan.

Fatigued, in need of respite. (c) 2021 Judith Allen Shone

Flickering Magic

Flickering Magic

confused man

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.

blurry words

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!

man searching

 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!

fairy angel

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

Each day, do something that makes others smile and your heart sing.

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!

frog jump

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.

frog dance

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?)

frog king

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!

HOP survivor card

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.

HOP survivor card

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?

frog mug

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

watercolour flowers

. . . 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

Second book was released August, 2020.

Did You Hide the Cookies? book

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 (2020)

Is There Any Ice Cream? book

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. (2019)

showing large print

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