winding road
Road ahead

My Love has memory loss. We began this circuitous journey together over eight years ago. Right now, I can tell he is rounding the bend in full view of late stages of Alzheimer’s disease looming ahead. There is no road map we follow on this journey The limited verbal skills that are developing are the newest bumps appearing along the road. I know these next months require intense around-the-clock care.

Recently, I experienced the biggest dipsy-doodles of our ride, just like thank-you-mums when they tickle the tummy … these bumps got my attention

My Love’s daily routine has been changing, showing me he appears to be crossing the border between stage 6 and stage 7 along the Alzheimer’s spectrum,

  • My Love has been getting up between ten and eleven in the morning, instead of nine, giving him nearly 14 hours sleep.
  • Sometimes he stays up beyond his normal nine, until eleven at night, and then sleeps in the daytime, shifting his sleep pattern.
  • Daytime hallucinations are increasing and lasting longer.
  • I help him shower and shave. I must remind him and help him.
  • He is not sure how to pick clothes or how to put them on. He knows wearing pjs is not right in the daytime, but can’t figure out how to change them.
  • He knows he must ‘change to something else’ before bed, but needs help with knowing what that means. Words alone won’t help him.
  • His ability to verbalize his thoughts, or to understand my words, has diminished significantly…repetition and rewording on my part does not help him. The connections are pretty loose right now and appear on the way to ‘burning out.’

The past few days I witnessed these intensifying shifts going on and, just like the tickle in my tummy, his altered routine has gotten my attention.

Yesterday morning, My Love came out to the living room, still in his pjs. I knew he had just gotten up, yet he seemed to be on a mission, and darted straight over to me, where I was sitting at my computer. 

“I am so sorry for all the things I did. All the things I did to you,” he blurted out at me. “I did not mean to do them. I am sorry. I mean it.”

“What are you talking about?” I asked, holding my hands out to steady his wavering body, while looking into his eyes to be sure he was, indeed, awake.

There was no usual dramatic entrance, no “good morning,” or even a normal “hello.” We had not had any discussions or any remotely similar topic that might have prompted even a conscious apology. I wondered if his anosognosia had lifted, or even was miraculously gone…after all, he suddenly remembered things he was not proud of in his past! Why else would he feel compelled to apologize for something he just realized he had done?

Is this how we do when we want to make amends?


 Definitely, I wondered what happened. 

When I asked what he meant, he said, “That’s what those people told me to say.”

“What people,” I asked, not ready for any new visitors.

“The people back there,” he answered, pointing to the bedroom.

Yes, a shift is happening.

Am I watching a movie and I am in it, but I am not controlling me? It all feels very strange. Similarly, I wonder how he feels being in the late stage of Alzheimer’s, yet I know he does not even realize anything is wrong at all.

I ignore so much or I’d feel life was too bizarre!

So, are these new morning people in his sleep-dream state or are they hallucinations? I am not sure. These ‘people’ are talking to him? Or is that, too, hallucination? 

In addition to the new morning ‘visitors,’ My Love has ‘visitors’ who come between four and seven in the late afternoon. Evidently, his guests, who have been appearing for months, just sit and then leave without saying a word to him.  He never can describe them but always asks me if I know where they went or if I have seen them.

I routinely tell him I was in the kitchen and must have missed seeing them leave. He accepts that.

I doubt it is the pills, because we have not changed the pills. Although, slowly he is using fewer. But since I have been told before, “take note of new or altered behaviours, and if they cause pain or persist, ask a doctor so they know what is going on.” I have done that, and, I will, again, in our Dr./Zoom conference coming up this week.

Then, this morning he came out to the living room, without a stitch of clothing on, asking, “Can you please help me?” as he turned to walk back down the hall.

hang up shirt

I was completed stunned that he was undressed and fidgeting like a nervous dog. I got up and followed close behind him.

Through watching his gestures and seeing his nakedness, I concluded he needed to know where his clothes were. He was trying, without words, to ask me to help find his clothes. He did not know what to put on.

He has been on this limited vocabulary track for some time. I must say, though, that this was the first time he was in such a hurry to get dressed. Maybe since he no longer remembers me, he feels quite ‘private’ about dressing.

I usually put his clothes out the night before and he dresses himself in the morning. He has never asked me to help him find his clothes. But this day, he had no idea what he needed and where to find ‘it.’ There is no pattern of how his memories fade…this time he happened to bundle his losses.

A couple years ago, when he had elevated calcium, I had to help him dress. Back then, he needed my assistance for eating, walking, and dressing, putting on socks and shoes, because the swelling was excessive, and the pain was great. 

But this is different. Most of the time, now, I notice he needs reminders/assistance – so much involving functional, procedural and emotional memories.

Every day he declines a bit more. For a good part of the day we cannot ‘really’ converse. Often, lately, he can’t say words, and he doesn’t always find a substitute word, he can’t even find a gesture that mimics his need. He just cannot get the words in his brain into an area (hand gesture, words, motions, even charades) where he can communicate. This has reduced his activities because he chooses to do very little.

Declining verbal abilities are part of late stage of Alzheimer’s disease. Sadly, I await more dipsy-doodle thank-you-mums ahead on this bumpy road.

😥 It is sad to go through this. But as always, he is ever happy. I am the sad one.

~ LEARN MORE: Conversation Blackout, about words. ~

What are his sleep-dreams or hallucinations related to? Medication or just Alzheimer’s disease? Things change so quickly, will I ever know?

sign off jas

Does it matter?

“Thank-you Mum” (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!

2 books
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Watch for upcoming Did You Hide the Cookies? the second in the Accepting the Gift of Caregiving series, Inescapable Heartache of Caregiving for My Love with Alzheimer’s, Anxiety and COPD to come out early this fall.

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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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