Don't Kick Me When I'm Down

When this disease pops up, each "new thing" is a fresh trauma. You don't know if it's a one-time thing, if it's going to happen repeatedly, or if it's going to get worse. You just know that, for you and your loved one, everything is now different. Maybe not dramatically so yet, but definitely traumatically so.

And if you've had a parent or other relative who's had Alzheimer's, and now your spouse has it, you can't help but remember and compare (though, to be fair, there is absolutely no comparison between caring for a parent and caring for a spouse). So, even though your spouse might just have some beginning symptoms, you relive the trauma you felt when your parent did the same thing, and you project your current situation down the road to its logical conclusion. It's a hard thing, because you know what's probably coming. You hope it won't be the same, but you know it definitely might. And the thought of it brings you to tears as you quake inside in desperation.

Those who are farther down the path or have seen it before might discount what you're going through presently; however, it's important for them to realize that, for you, this seemingly minor thing that's happening is confirmation that your life has changed. And not for the better. Your dreams have been deferred or extinguished, though you might not want to admit it yet. Your future is not what you'd imagined it would be. Is that dramatic? Sure. But this disease is a dramatic thing, a thief that laughs at you and kicks you when you're down.

If you're currently tempted to downplay the upheaval that's going on in a friend's life because it just doesn't seem that bad to you, please rethink your reaction. Your friend needs your understanding, not your bromides and platitudes. Maybe you know how hard it's going to be for your friend later. Please don't say something like, "Just you wait. You ain't seen nothing yet. My uncle used to (fill in the blank), and you can't even imagine what my aunt went through!" That is not helpful; it's demoralizing and insensitive. Your friend is hanging on by a thread and needs your encouragement. Your friend already knows, deep down inside, that it's going to be worse. Much worse. Pointing that out makes you part of the problem, not part of the solution.

When my mom learned that my husband had been diagnosed with Alzheimer's, I could see that her heart was breaking for me. My dad suffered from Alzheimer's and had passed away just a couple of years before. "Oh, darling," she said to me, "I am so sorry for you. At least with your father, I didn't know what was ahead of me."

There's something to be said for her reaction. She expressed caring and compassion, and she acknowledged that, for me, the journey might -- and probably would -- be more traumatic than it had been for her. She hadn't known what to expect. I did.

I still hope for a cure, a new medication, a miracle, a better outcome. Not in the cheerful, expectant way I once did, though. More in a quiet, reserved way.

You might wonder if my faith is still strong. As my friend Rob would say, "But...God!" And that is where my hope lies. God is kind and good. He is loving and a good Father. He is my refuge and my strength. When I am down, He lifts me up. He keeps me going and fills my heart. So, the answer to your question is, "Yes!"

I Wanna Play My Harmonica

Photo by Chris

Music is transcendent and therapeutic. It goes deep inside and stays with you. My husband has always loved it, though he hasn't played an instrument since he was a boy.

A number of years ago, I purchased a couple of harmonicas for him. He was still hunting then, and I thought he might enjoy learning to play some tunes by the campfire. It was probably more wishful thinking on my part than a desire in his heart, and the harmonicas and how-to-play books gathered dust, forgotten.

I found the harmonicas the other day and showed them to him. We both played with them a little, and I encouraged him in his gleeful efforts. "Wow! That sounds fantastic, honey!"

Much to my delight, he has been carrying the harmonicas with him everywhere, experimenting with making music (sometimes inappropriately, such as during a young lady's solo of the national anthem at a graduation ceremony). The tunes are nothing that anyone would recognize, of course, but it seems to bring him pleasure every time he "discovers" a harmonica in his pocket and starts to blow into it. I'm ecstatic about finding anything that elicits interest in him, no matter how fleeting.

On our drive home today, I was playing some "golden oldie" CDs in the car. He whipped out his harmonica and started "playing along" enthusiastically. The harmonica he was using was in the wrong key, and the "tune" he was playing bore no resemblance to the song on the CD. No matter. Anyone else in the car might have been driven insane by the dissonance, but it was beautiful music to me.

It delights me to see him happily enjoying something. Will this be an ongoing interest? We'll see. But today, it brought an hour or two of relief for his nervous energy. Kind of like a fidget spinner for the soul.

Happy Birthday!

"Today is your birthday. Happy birthday!" I've been wishing him a happy birthday all day today, and now it's evening. It is his seventh birthday post-diagnosis.

"It is?! I'll be darned," he exclaims happily.

"You didn't know?" I ask casually.

"I did not know," he responds with a smile.

"How old are you?"

"Harry," he replies confidently, "Why?"

"I was just wondering if you know how old you are now."

"I told you. It's Harry," he says. This has been his answer to "How old are you?" all day.

"Well, Harry, you are ___ years old!"

"I am?!"

"So, how old are you?"

"___ years old, just like it says here," he says as he proudly holds up the crayon he's been working with and shows me how long it is. It does not, of course, have any numbers on it.

"How old are you today?"

"Harry," he answers. Okay, then.