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.
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.
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.
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 caregiver…my 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!