Where Did She Go?

Where Did She Go?

desk with papers

During the day I am at the helm, control central, where I guide our lives, as I work on my computer, write, blog, create graphics, check social media, respond to emails, pay bills, order groceries, make/take phone calls, and even do my recent class work for McMaster University.

My Love seems to need me to be in sight at all times. So it made sense to move my work space to the dining room. I fashioned a desk from my keyboard stand with a shelf I confiscated from a bookcase That wee shelf holds my laptop and added 24″ monitor on a spice rack spinner, pencils and pens, papers, electronic cords, and eyeglass cases that store USB keys.

There is no room on the shelf for my reference books, and notebooks and extra hard drives. They are in a box on the floor beside me, and in a basket behind me. I do have my office chair…far better than our old couch.

loved one painting

From here, I face My Love and he can see that I am still here, me, “Judy Shone, his lady who takes care of him.” He feels calmer if he knows I am nearby at all times.

From my position in the dining room, I can move back and forth between the living room when I help My Love. I encourage his colouring, make sure he drinks his water, and takes his pills.

Then, from this position, I can get up and go to the kitchen to make meals, get coffees, wash dishes, prepare meals for the week. I am easily able to go back and forth to my make-shift desk between tasks.

I can manage the CDs, music and radio from the speaker off to my side. The only downside is the intense heat from the curtained southern window when there is sunshine. I have a screen I put up behind me I can adjust and it works.

When I take a break, serve and eat meals, take a nap on the couch, I move into the living room to be with My Love. We no longer use the dining room for meals because over the years it has been taken over by my office props.

When I sit in the living room, we talk, see what is on the TV that might be decent to watch…not loud, not too fast, not too weird for people ‘of a certain age.’ When we chat, I try to find something funny so we can find reason to laugh…oh, how we need to laugh! And laughing with someone else makes it much better.

sundown image

In the evening, as part of his sundowning, he goes through a definite routine that, for me, is somewhat like seeing a play over and over, with nuanced changes.

His episodes usually begin just before I serve dinner. I sit near him on the couch during his episode. Then I have dinner with him, and afterwards take a rest for thirty minutes. I am there, on the couch – me, “the lady who made dinner, who brought him his meal, the lady who takes care of him.” He feels safe…safe equals calmer.

And when the dishes are done, I go back to the computer to check emails, answer emails, and begin to shut it down. While I am there, inevitably, he points to the spot on the couch where I had been seated and asks, “Where did she go?” …the lady from the living room.

I always have to explain that I am that lady, the one who just had dinner with him, that I am the lady who just gave him his pills.

“Who me? You helped me with pills?” he asks, not remembering that short time ago.

I explain I am the lady who helped him shower, who washed his hair and shaved his face in the morning. I am the lady who took him to the doctor and picked up his meds at the pharmacy in the afternoon. He is not connected to what I am saying.

And then he looks at me and says, “Where did she go?”

I used to think it was a joke for laughter, but I know now it is not. He is serious.

During sundowning, he has to be coached to remember me or my name. I don’t work on that much any more. It does not matter. I accept that every night he will have trouble differentiating between the ‘me’ sitting at the desk across from him and the ‘me who is the lady who was just sitting on the couch, who takes care of him.

He always wants to know how he can find the lady who was on the couch. “Did she leave?” he asks.

Then he refocuses and asks “Where did they go?” referring to those night visitors who have come nightly for years. I still do not see them. And I still tell him I was in the kitchen and missed them.

two of me

I move back and forth between the couch and chair trying to show him I am the person he is looking for. But he is not convinced.

I expect he will ask where his car is. I have printed out the sales receipt from when he sold it almost five years ago so I can go through the story of how the axle broke. He shakes his head ‘yes’ when I tell him he sold the vehicle because he could not afford to fix it.

Next, he will ask where his driver’s license is. I repeat how the Ministry took it because he has Alzheimer’s. That is tricky because he does not believe anything is wrong with him. I quickly try to distract him.

And then he shifts back to, “Where did she go?” and it begins again.

“No, I don’t think you are the same person who sits on the couch and sits at the desk,” he tells me, firmly. “I need to find her.”

“Let’s go look at some pictures,” I say as I take his hand to lead him to see some photos of the two of us hanging on the wall in the bedroom. Holding hands generally is a calming factor. Then, seeing pictures of the two of us again helps him recognize me, at which point, every night, he begins to come back to his current ‘normal’ state. Life goes on.

signoff initials

See Night Visitors on this site about his nightly visions.

~jas

Where Did She Go? Copyright (c) 2020 Judith Allen Shone

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.

calm
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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