Part One: When You Need Me I’ll Be There

I feel it bad. Really bad. Physically and emotionally. We all do at different points in our lives. Pain and hurt.

For awhile there I was nursing some migraines that just wouldn’t go away (talk about pain). Now added to that I’m nursing a sore molar that I will have a root canal on next week (which turned into an extraction and bone graft). Most painful of all, I am nursing Paul.

He has been diagnosed with some sort of dementia. We just don’t know what kind. I could wait years for the doctor’s appointment that will tell us more and give us a treatment plan.

He took the cognitive written exam. Brain MRI. Had a physical evaluation by a neurologist we were lucky to get at Emory. Finally, a spinal tap. Now we wait.

Is this really happening to us?

Yes. I was in denial for awhile. Everyone forgets their Social Security number now and then. Who hasn’t lost their stream of thought after speaking just a few words? So what if you begin having trouble operating the TV remote?

Of all the things I thought I would never see coming down my path was this: No, I never thought that anyone other than Paul would ever be my ICE person.

It was this realization that made this nightmare real to me. Imperceptibly slipping away is my old Paul and slipping in is another in his place. There are no words to describe this pain. He’s too young. Paul v.2. – I don’t love him any less, only more, but I fell in love with v. 1 and I will miss the original.

Our changes

I should have known a few summers ago that something was amiss. He gradually stopped growing a garden. It even got to the point where he didn’t plant a single tomato plant. No tomatoes — not Paul.

I’ve read it takes some years for dementias to begin to show their ugly heads. I had noticed other things along the way that just weren’t quite right. You don’t trouble yourself with that, though I did — even back early on.

I would ask if something he said made sense to him. We would have discussions over who was right and who was wrong or who made sense or who didn’t. And maybe why or why not. Looking back, it’s amazing how many things could be the showing signs of dementia.

He has pretty much accepted his fate, but probably not really. In the best case scenario (if there truly is one) is to be diagnosed with Mild Cognitive Impairment (MCI), the least wicked of the dementias that steal your memory. If I’m not mistaken, MCI sometimes reverts. People can live pretty independent lives with MCI, but they still need to be checked in on every so often.

Several months ago Paul realized he had to stop driving. The roads were becoming too confusing to him. I miss this because now I do all the grocery shopping. Poor, pitiful me complaining about going to the grocery store, when 50% of the time he was going on his own. Dementia v. grocery — get real, Yvonne.

We alternated Wednesdays, starting back when Publix gave seniors a discount on Wednesdays. There are some women lucky enough that their husbands go to the grocery, too. My father-in-law did.

I’ll have to take care of selling his vehicles or getting them to a car heap someplace. I’ll have to find homes and places for all his numerous tools, woodworking machines, old handyman stuff, automotive this and that.

We’ve already stopped our expansive recycling center in the basement. He can no longer drive to the recycling center or the dump in either his van or his pick-up truck.

I make all medical appointments and calendar them all on my “What Cats Teach Us?” calendar. What’s up with medical facilities these days? They send 15 texts when, three would be more than plenty. Same for emails. Then you know you have finally hit the jackpot when you’re called on the phone three times in one day.

All this while being asked the same already available medical information over and over and over. Also, “May we please have your feedback on our short survey” with link attached. “LEAVE ME ALONE,” I want to say kindly.

You really have to pay attention to these medical offices and hospitals as far as locations go. I just happened to be reviewing Paul’s upcoming appointments on The Portal. To my great disbelief and relief, they had scheduled a couple of tests in Villa Rica. YIKES!

What Paul and I do these days

We do our usual morning routine, only it’s a little different now. We start out with a nice hug and big fat kiss — possibly giving each other back massages. That’s the best. Paul with his coffee, me with my Coke Zero.

The mornings seem hardest for Paul. It takes a little longer for his mind to awake from its jumbled subconsciousness maybe. Oddly, since his mind has changed on him, he’s more loving, kind, tender, and affectionate. Nary an angry word nor raised voice.

It is truly remarkable. I like it a lot. ❤️. But barely any laughter, all serious for the most part with the occasional laugh about something we did in our youth. That’s not completely true. There are times our eyes meet about something and smiles develop. He has said some beautiful and romantic things to me during this time. Soothing and calm. I’ll keep those between us.

He says he wants to cry but can’t. Today he says he wants to die. Who hasn’t thought of the ultimate at some point when you think you can’t bear your life one more second? I’m sure there are some who haven’t, but I have— nothing serious, just clouds floating in my lame brain.

Paul is a little lost and confused sometimes, but coherent and cognitive at the same time — if that’s possible. He’s bored and wants to do things but his mind won’t let him. We try to do a daily walk, not always consistently. The neurologist said the best thing Paul can do is walk.

An aside: After all my years dealing with mental illness and this crazy brain of mine, I have stumbled upon an observation. It is not that a mind with dementia is bad or even necessarily faulty. It’s just an aging mind. It’s where it is when you are there. Remember, no labels.

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We spend a lot of time talking with the TV turned off, frustratingly, letting the dogs in and out while at it. Who says the cat runs our house?

We’re starting to eat breakfast more together. I’ve tried to cut back on my mini donuts (not real successful). We’ve moved on to Fig Newtons.

Overflowing with shows of kindness and support

When this nasty monster made its presence well known in our lives and I shared with a few people, I just couldn’t believe how people “really are there” for Paul and me. We don’t know what lies ahead, but we are confident in the goodness and favor of others. May I be so bold as to say, “We’re counting on it.?”

Two young boys on the street are taking care of the lawn. Paul can no longer mow. I know he misses getting his hands in the dirt. He has tried; it’s just not there.

Pink, my art instructor, says she can stop by the house and still give drawing/art lessons.

A few of the women in the neighborhood have picked up things from the grocery for me. I think I made one list too long. She said she had two items too many to go through the express line. Love that! Lesson learned!

Lisa has been kind enough to agree to come to our gym basement so I won’t miss out on training. See if you can see the tiny gym below.

At least for now I want to be home as much as possible. I’m a homebody anyway. We had a recent 911 visit to the ER because Paul nearly passed out and became lightheaded just while sitting in a chair watching TV. I didn’t know what was going on. So I am glad I was here to witness that. It was scary.

In closing

So there you have it. The beginning of a new chapter for Paul and Yvonne. Of course, we would have preferred a less heavy duty one. However, I’m not seeing anyone out there who is picking the cards they’re dealt.

I first started reading up on dementia caregiving years ago. As you see, it has come back home to roost. The first article I read this time around said that the best thing a caregiver can do is learn all there is to know about dementia. My purpose found me, and it couldn’t be with a more sensitive, loving guy.

Written and published with express permission of Paul A. Smith, III.

This article was written several months ago. We have since learned and experienced what it’s like to live in the world of dementia.

Part Two will be my next article about how we’re doing. Publishing date TBD.

🙏 Namaste 🙏

Thank you so much my dear readers. I have missed you. Paul and I are doing fine. We will be fine. If you have any questions or comments, I hope you will share.

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