Oct 12, 2011

What Were Some of the Clues to Indicate Something Wasn't Right ....

He was the one who leaned over to touch my husband’s knee to announce, “I have some shocking news for you. You have Alzheimer’s.”

By Mary Gazetas

I talk a lot about Alzheimer’s and am often asked for information by friends who suspect that something may be happening with an aging parent or spouse.

Two common questions are, “How did you find out your husband had Alzheimer’s?” and “When did you first start to realize something wasn’t quite right?”

It is a lot easier to look back in time to figure out what were some of the first symptoms to indicate the onset of this disease. A whole lot easier than compared to say four, five years ago when I had no idea what Alzheimer’s was. Nor what lay ahead.

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Some of the earlier changes in my husband's everyday habits included things like forgetting the name of the street we drove on almost every day. “It’s called Gilbert Road” I’d say to him. Later, we jokingly renamed that street to “Gilbert and Sullivan”, hoping that might help.

His balance was effected. Most noticeable was when he could no longer ride his bicycle. Later, his walk began to change and in time it started to take on more of a “shuffle” characteristic. What was interesting though was he never lost his skill in playing ping pong!

Typical to Alzheimer’s was when he had trouble remembering instructions in how to do simple tasks that required a few steps. Turning on the oven, using his cell phone, and accessing telephone messages became tough for him .

Written directions for some reason didn’t help very much. Eventually small sticker signs were needed to name items like the fireplace switch, the microwave.

A list of his medications in large letters was taped onto his bathroom mirror.

One day to my horror he couldn't find reverse in his car.

He struggled wrapping presents. Why it was hard for him to fold paper, use scotch tape and try tying a knot with ribbon puzzled me.

Confusion reigned when it was time to prepare income tax returns. I began to dread income tax time because I knew he could no longer grasp that he was receiving income from different pension plans.

Slowly, tasks such as that and me helping him with weekly banking, paying bills and interpreting monthly statements became a norm as part of our life together.

We moved into a new house during the summer of 2006. The move in hindsight was very hard on him. Despite how happy I was to have a larger garden and live right beside a river he was confused and disoriented. His familiar surroundings had vanished.

By the fall of 2007, even though they were small changes, my worries (and frustrations) increased.

He was trying to write a 2nd edition to a film history text book. As the weeks passed, I was astonished there would be days when he could no longer fathom e-mails from his publisher or proceed with writing down words and ideas.

Life in our house became a nightmare as I still did not know what was going on. He would panic when he got ‘inbox’ and ‘sent’ mixed up.

Time became a foreign concept for him. Dates on his e-mail messages had no meaning for him. Even when I showed him that he had answered somebody over a year ago.

If we had to be somewhere at 4 in the afternoon he would be dressed and ready to go by 10 in the morning.

That was when I told him I wished to make an appointment with his family doctor so we could share my increasing concerns.

We sat in the doctor’s office where my husband was asked to do one of those preliminary tests. Draw a face of a clock with numbers. Repeat back the names of three objects. There indeed was enough evidence that something wasn’t right and in February 2008, we found ourselves visiting with a geriatric specialist at a hospital in Vancouver.

He was the one who leaned over to touch my husband’s knee to announce, “I have some shocking news for you. You have Alzheimer’s.”

This diagnose hit us both differently.

At first my husband went through a stage of denial and called the doctor a “scoundrel.” I wondered how we’d survive going back there for repeat visits down the road.

Though I was saddened to hear this news, at least I now knew what we were dealing with and it helped to make sense of what had been changing in the last two, three years.

I stayed home more as his levels of confusion and anxieties increased. He was put on the Exelon patches which was supposed to help slow down the progression. No way was it a good idea.

I don't take small trips anymore and leave him by himself. Slowly my husband stopped reading and could no longer enjoy activities such as watching movies on television.

Driving was out of the question and he surrendered his driver’s license. (He scored 9 out of 100 on a controversial test done on a computer.)

With great relief he was no longer allowed to do any driving. By this time his laptop was put away in a drawer - never to be used again.

Family celebrations such as birthdays Christmas and Easter lost all meaning for him. Short visits to see my twin sister on Vancouver Island became tricky. He had to know where he was at all times and never could we be out after dark anymore as it was too frightening for him.

I began to learn that one of my key caretaker jobs was to make sure he wouldn’t be put into situations as much as possible that would cause anxieties.

I began to practice how to live in the moment. Afternoon teas on the porch took on more meaning. We ate lunch out more often. I joined him on his walks along the river. Structured activities like these helped to fill his long days of wanting to sleep a lot and the increased inertia.

He suffered a steep decline in June 2009 and after weeks in a hospital he was admitted into a 24/7 extended health care facility. I sometimes wonder if I might have done things differently if we had known sooner he was living with Alzheimer’s.

I would have. I’m sorry I didn’t ring alarm bells sooner with his doctor.

I wish I had moved quicker to source out resources that were available to help us both.

I would have made a bigger effort to read up more and not ignore that the more information we gleaned would have been a great help when we needed it the most in those first stages of Alzheimer’s.

Yet, I’m very aware those days were then - and now it’s the now.

Mary Gazetas is an artist, writer, volunteer who lives in Richmond B.C. Canada. Four years ago she knew nothing about Alzheimer’s. In fact she didn’t even know how to spell that word. At first she and her husband were overwhelmed by so much information available. Looking back it was a slow learning curve. Once diagnosed (February 2008) the progression of her husband’s Alzheimer’s was fairly slow until he went into a steep and sudden decline. Since then, Mary has continued to learn more - especially in the context of how to provide the best care in a residence environment.

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Original content Bob DeMarco, the Alzheimer's Reading Room