Alzheimer’s: The Path Beyond the Tears

“As we walked, every two minutes, I would seize up, surging close to convulsing into tears.”

Those were my words. I wrote them in my initial post to this blog, a little over six months ago.

I was figuring that I’d work my way through the tears – and then I would move beyond the tears.

But I’ve found that every time I talk to someone about Carl and his Alzheimer’s Disease, I burst into tears. Sometimes, I just choke up – and I can’t talk. Sometimes, I plunge into wailing, choking, and sobbing into my arm.

When I talked to the lady in the Alzheimer’s Association office, I seized up over and over again. When I speak up at an Alzheimer’s Association caregiver support group meeting, more often than not, I choke up – I can’t say what I want to say, clearly and quickly. When I went to an all-day Family Caregiver Training Seminar, nearly every time I spoke up, I was unable to control my tears.

I mentioned my problem with the tears, at one of the support group meetings, and the moderator said, “It doesn’t go away. It’s part of the horror of this disease.”

So – the name of my blog is all wrong. There is no path beyond the tears. This lachrymose cataract will follow me – wherever I go – always – for the rest of my days. I can not escape it.

And yet, while I may not be able to struggle free from this horror, I can move forward. I can achieve at least a little more control over my crying. And it doesn’t plague me all the time.

When I’m not being blinded by the tears, I need to make progress. Progress for Carl – and for me.

I must enter that mythical forest where there is no way or path. There I will find no road for my tears to obscure, so they should not impede my progress.

And tears or no, I must move forward – as best I can.

And there is yet another name problem – the title of my blog – again – “Dementia: The Path Beyond the Tears.” It was set up after the psychologist diagnosed dementia – but before the neurologist diagnosed Alzheimer’s. So one more part of my blog name is all wrong. It seems I’m batting zero here.

But – dementia, as a term, does encompass, and it does include, Alzheimer’s disease. So while my reference isn’t precise, it is, in point of fact, accurate. So I’ll keep it. At least for the time being.

What has happened since then

During this six-month period – since I started this blog – we’ve covered a fair bit of ground.

After the initial “dementia” diagnosis by a psychologist, Carl was seen by a neurologist.

The doctor did an assessment – which included a lot of questions. I sat there, not answering for Carl – feeling like I was abandoning him to pain and abuse. But I was bright enough to realize that the doctor needed to feel Carl answer his questions – or the doctor would not discover what he needed to know.

He asked me several questions as well: when did something start – what did I see. I did feel a bit like a self-centered, unobservant idiot.

But I think that’s the reality of this sort of situation. You DON’T notice these things until it’s far to late to have any clear feel for when they started.

The doctor also ordered an MRI.

The doctor – the neurologist – diagnosed Alzheimer’s disease.

Carl is now on two medications – which work together to slow the progress of this disease process.

Beyond working with the doctor, I’ve gotten in touch with the local chapter of the Alzheimer’s Association. This organization is a huge resource – for information and for support – in person, on paper, and online.

I’ve also started to attend the monthly meetings of two Alzheimer’s Association caregiver support groups. These are stunning sources of information and support.

I attended a whole-day class called “Family Caregiver Training Seminar” – sponsored by the Alzheimer’s Association. Lots of information – some of it scary.

Then – beyond the groups and the classes – there’s another element of progress that I think it’s important for me to recognize here. I have journeyed from and through: ignorance, shock, fear, and who knows what else. It’s like Elisabeth Kübler-Ross’ “Five Stages of Grief.” Indeed, it may BE her “Five Stages of Grief.”

I’ve also learned a fair bit about adjusting our home life to accommodate Carl’s situation. And about adjusting my attitude and behavior. Of course, there’s much more to discover here.

What I’m planning to do

My plans for the future have evolved a bit over this half-year period of time.

I’m planning to attend any other classes I can fit into my schedule and my budget.

Someone might ask, “Why would you consider sitting through similar material more than once?” It’s a reasonable question.

But – I have learned that reading a book more than once will give me a clearer and deeper understanding of the material covered. If I’m reading a book from which I feel I could benefit greatly, then I will surely read it more than once – perhaps more than twice. And if I’m reading a book that’s difficult for me, but which I really want to understand better, then multiple passes through the material are always helpful.

The same is true for a video. Whether the video is documentary, comedy, or drama, if I watch it a second time, I see and appreciate points that I didn’t notice the first time through. The same holds true for a third viewing – and often for subsequent viewings.

The same will certainly be true for classes and seminars. Hearing the same information multiple times – and from different points of view – the knowledge will surely become clearer and more useful.

It’s entirely possible that something in one class won’t click for me – at that time. But later, with new experiences under my belt, it will click. That mental “bong!” That “ka-ching!”

And I can not think of any other subject where it’s more important – critical – essential – for me to know and to understand the absolute best I possibly can.

As a researcher, I’m planning to embark on a project – perhaps an ongoing and unending project – to learn everything I can about this disease: about it’s variations and it’s stages – about the diagnosis of the disease – about the risk of getting the disease – about the treatments – about the suggestions to slow the progress of the disease – about research – about resources – about how I can better help my friend – and about any other topic I can identify.

As a writer, I’m planning to write articles – and post them to my Dementia Path blog – and publish them anywhere I can – about any of these topics – and about any other related topics I get interested in.

So …

Since creating this blog, we’ve covered a fair bit of ground. And “The Road goes ever on and on, Down from the door where it began.”

It appears that “the path beyond the tears” is filled with tears. And will be filled with tears.

Now where did I put those gumboots? I’ve got work to do.