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.

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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

Another Day Dawning

Another Day Dawning

ice cream and cookies

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.

loved one painting

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.💕🌷

colouring book pages
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

colouring book pages
Four pictures in download 2

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


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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!

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My Love’s Anxiety

My Love’s Anxiety

I mention all this in hopes that when someone reads my words, they might recognize something familiar or similar and mention it, or find a way to let it help another who is suffering with something similar.

My Love was diagnosed with COPD ten years ago. Two years later, he was diagnosed with Alzheimer’s disease and vascular dementia. About the same time he developed a condition described to us as “probably anxiety attacks.” Other diseases, osteoarthritis, pneumonia, and colon cancer have come and gone in that same ten years. Not long ago, he spent five weeks in hospital where lack of ‘any other remarkable results’ suggested to doctors that dehydration ‘must have been the source’ of nearly six months of elevated calcium. No one knew for sure. Medical researchers still have so much to discover!

But today, it is issues surrounding COPD, Alzheimer’s, dementia and anxiety that persist.

Matisse cuttings
Is this how confusion feels
to someone with memory loss?

Our life is ongoing. I am still a 24/7 caregiver and learn something new related to one or the other of My Love’s diseases almost each day. But this one eludes me.

For ten years, My Love has had a ‘rumble’ in his chest. A hurrumphing, a throat clearing, coughing sound, that comes, like clockwork, at least once a day. I watch for it now. In the beginning, I became quite anxious about it, but now I recognize the pattern. Little has changed. I have learned to live ‘around’ it.

Generally his mid-chest area increases in pain over thirty minutes, enough that he tells me,”I can’t breathe.” He no longer is anxious, even though anxiety is what doctors call what is going on.

I observe. He is breathing, even though he holds his chest and repeats words I hear every day, “Something is blocking my air way. I can’t get my breath.”

I have searched and asked and read and listened, but I have not yet discovered the trigger.

His COPD specialist could not connect My Love’s pain in the middle of his chest, the throat clearing, or the coughing, with COPD in any way.

These attacks do not happen continually, but they do happen every day at some point, and lately, one can last anywhere from thirty minutes to three hours. In the early days, when these events began to happen more frequently, his attacks could last for hours. I have a note “…eleven hours…” in my journal from the early years.

Because My Love kept saying it felt like he had a blockage, his family doctor ordered tests to check his airways, to check his esophagus, to check his lungs. No results were remarkable. But I pressed on.

Normally, his attacks happened in the afternoon or evening. Usually after My Love’s personal doctor’s office was closed, so his doctor never saw the event.

We saw doctors at the evening clinic many times after deep breathing for oxygen did not seem to help. We have been to our hospital emergency room over ten times when the clinic said they could not help and sent us where they could do testing. No doctor has ever seen an actual episode.

After several years visiting the clinic, one doctor, without absolute conviction, admitted she thought it might be anxiety attacks. Even after that, there have been no tests results that show conclusively what causes his mid-chest pain.

watercolour spin
Where do hallucinations
come from?

I thought I could help the search by finding something similar on YouTube ‘anxiety’ sites. After hours of watching videos, of searching for different possibilities, I found nothing. One of my doctors suggested I take a video when My Love had his episode. I tried but the pictures never showed the pain and anguish I knew he felt. I was not successful.

One personal service worker who came to our home told us her husband had similar attacks. He breathed deeply with his eyes closed and it would go away after 30-60 minutes. I tried that with My Love. He could not breathe and close his eyes at the same time. For some reason it was quite confusing for him.

Another service worker suggested I try the 5-4-3-2-1 treatment. When the attack begins, I distract him by asking him to find and describe five things he can see, and then ask him to describe each one. I did the the same procedure with four things he can touch, and three things he can see and two things he can smell and one thing he can taste.

I still try this once in a while because on occasion it works.

Ultimately, I end up using a little green pill to reduce his anxiety. It seems to calm him. We are under doctor’s care with this medication, trying to reduce its use by using another medication that reduces anger and aggression.

He always seems to have a mental shift along with the anxiety, no longer knowing who he is until the event is over. I have yet to determine how much his Alzheimer’s or dementia add to each episode.

These days about 4:23 each evening he gets up and walks to me to ask how he will get home. He is shaking because he notices the people who were just here are gone and he didn’t get to go home with them.

Almost each evening, his hallucinations involve the same people appearing, and the same story ensues, although he cannot describe the visitors. He just knows he sees someone. I always let him know how sorry I am I missed them. He is okay with that. Sometimes I feel like someone else is taking over his being.

Although he does see a geriatric specialist, we have stopped going to doctors specifically for ‘anxiety’ because his symptoms have not changed recently and the doctors were not able to discover a cause for those symptoms My Love presented.

Can we help one with memory loss consciously reach CALM?

I mention all this in hopes that if anyone reads it, they might recognize something familiar or similar and mention it. Even sundowning surely is a manisfestation of various physical activities converging…with what?

I have been the skeptical one all these years – anything that lasts so many years, and repeats daily, surely must have physical triggers. But alas, none are known so far.

I would like nothing more than to help My Love eliminate his daily anxiety.

“My Love’s Anxiety” (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 this story. Read the stories I share to become prepared for life in the world of Alzheimer’s!

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