Dementia: The Path Beyond the Tears

It’s been a rough road, so far. I fear we’re not even close to finished with rough – and then surely there will be even worse.

It’s fairly obvious that someone dealing with cognitive issues is going to be talking to doctors – to understand what they are dealing with – to find out if there’s a way to fix the problem. Or to find out how to make the best of the situation, if it can’t be fixed.

Carl and I started with our primary care physician, who later referred us to a psychologist. After that, she referred us to a neurologist.

Currently, it seems that the neurologist has made his diagnosis – or at least, the best diagnosis he can make today – short of an autopsy – and is transitioning into a management pattern or plan.

At this point, I need to transition into a learning and research and caring pattern.

Where we’ve been – Psychologist & Neurologist

All of this started with our primary care physician. A few years ago, she judged Carl’s difficulty to be depression. And I’d agree that’s what it looked like.

For the longest time, I fervently hoped it would turn out to be depression. I’ve dealt with depression. I could help Carl deal with depression.

As things began to look like more than depression, she referred us to a psychologist. He conducted an assessment interview and diagnosed dementia.

Based on the psychologist’s assessment, she referred us to a neurologist.

The neurologist conducted a similar assessment interview.

After that, he requested blood tests for syphilis and HIV – because those diseases can cause cognitive problems. Both tests were negative. I thank the stars for the small bits of good news that do come our way.

After that, he ordered an EEG. He said if the results were wildly abnormal, that might indicate other tests. The idea was to see if there is some other brain problem causing Carl’s difficulties. When he saw the EEG results, he said they didn’t show anything special.

Where we are now – Management

The neurologist says Carl has Alzheimer’s. He said that all they can do today is slow it down.

He has prescribed one of the drugs on the market, and he seems to me to be shifting into a management pattern or plan.

I asked him to characterize the level of Carl’s problem. He said it was medium.

Having heard that, I’m left to wonder – to ask him, when I can – is Carl at the severe end of the medium range? I’m wondering whether Carl is truly at a mid-range, or is the doctor easing me into an understanding of the situation.

The doctor said that in three years, they will have much better treatments.

I asked whether there’s anything I can do – that I can push or encourage – that could improve Carl’s prospects. The doctor said to keep him active – intellectually and physically – that could slow the process.

I also asked him whether there was any point in trying to do something about Carl’s disturbed sleep pattern. He said he didn’t want to get into that until he knows Carl is settled in with his medication.

Where we’re going – Research

Now that the doctor is shifting into a management pattern, I have to figure out how I can best help Carl.

I asked the doctor how I could learn about the new treatments that are coming. He said to search the Internet for “Alzheimer’s new treatments”. He also said that the Alzheimer’s Association had excellent information on their web site.

I am planning to start a structured, persistent, online research project to learn about the treatments – current and coming.

When I asked whether there was anything I could do to improve Carl’s prospects, he said, “Keep him active – mentally and physically – this could slow the process.” This points to a second thread to my online research.

I expect there are understood strategies that could slow the process. I have to find out what the best ideas are in this area.

The first question that jumps to mind is: How do you keep a man mentally active who is already cognitively challenged.

As far as physical activity is concerned, what’s best – aerobic, strength, something else, some combination – what.

Another learning activity I need to pursue is to figure out generally how to help and care for Carl. I expect I will find some of this on the web. And I have three books: “The 36-Hour Day (4th Edition)“, “What If It’s Not Alzheimer’s?“, and “Reversing Memory Loss“.

I was thinking that all of these research threads will take time. Along those lines, it occurred to me that the “slow the process” thread of my research project should be my first prioirity.

And so …

It’s going to be rough.

But I need to make the best effort I can to take the best care I can of my friend.

At the same time, I won’t be doing Carl any favors if I don’t take care of myself. So it seems that I’m as much a part of the problem as Carl is.