Sunday, October 23, 2016

An Altered Life

So, my husband has Alzheimer's. His 59th birthday was just 11 days ago. He's way too young to have this particular condition. His is called "early-onset", which I appreciate. It's an acknowledgment that this is not usual. In fact, Alzheimer's is not "typical" at any age, it is not a "normal" part of aging. 

I LOVE this man!
Jordan and I started noticing things awhile ago. But it was intermittent, so we attributed it to stress, which was also intermittent. Then, as things progressed confusion happened more often with greater severity. We both knew something was wrong. 

So, we started reaching out to doctors for help. Our primary doctor was wonderful. Very concerned and empathetic. I will say that I had to really insist that something was wrong. This wasn't a result of stress (I knew now). This was not depression. --Though a certain amount of depression actually resulted from the confusion. He didn't feel himself. He knew something was wrong...but how do you articulate it when you are losing your words?

When I realized that there was something bigger than absent-mindedness going on, I started keeping a log of sorts. I have a little Moleskine notebook that fits in my purse. I recorded the symptoms I had noticed. I took specific notes about where and when an "episode" occurred. I made notes about why it was not "normal".

Let me just say that this notebook was invaluable as we started the doctor rounds. Especially because just getting an appointment takes forever. I wanted to make sure I didn't simply say, "He's forgetful." 

I continued to take notes and by the time we were at the Neurologist appointment I was completely prepared to make the case that "something was wrong". I didn't know "what" it was, but knew it was wrong. 

This doctor was a disappointment. We had an MRI, which he had received. This doctor was in the same medical system as J's primary doctor. Our primary doctor had called and discussed our case before our appointment. And yet, Dr. Neurologist was very dismissive. He looked at his watch and said something like, "I understand that there is some memory loss and there is depression." He went on to say,  "The memory loss is related to depression. It's a symptom of depression. And pseudo-dementia can occur when your depression has not be treated." 

With that, he was ready to tell us to find a psychiatrist and send us on our way. 

My response: "No. This is NOT depression. This is different. He may be depressed, but who wouldn't be when their brain stops working the way it used to." And what about the MRI? Did it show no issues? Why were we being dismissed? 

Then I pulled out my notebook and started reading about J's different episodes. Very specific notes. Indisputable notes. 

It was only after my presentation of evidence that the Dr. decided to pursue a real diagnosis. --Another specialist was involved (who was amazing), and we finally got the diagnosis in May. 

It was a hard diagnosis that left us both a little shocked in the specialist's office. This doctor (a woman) was amazing. She was gentle in her presentation of the illness diagnosis. She walked us through the markers that confirmed her diagnosis.

It's an awful diagnosis but we are both glad to know what it is. Knowing and naming something takes power away from the fear.  It was also validating that we were not "wrong" to pursue help. We were not imagining it. We were not being alarmists. The symptoms are real. It was not our imagination.

This is a life altering condition, for both of us. We both have to learn how to navigate our life with unseen hurdles. Some days are harder than others, but that's true for everyone.

I've so much more to tell you about the changes we have made and continue to make. We continue to embark on new adventures. 

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