Saturday, June 3, 2017

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.


Saturday, May 13, 2017

Don't Judge

Today was a not-so-good day. I was reminded of something as I was having a heart-to-heart with God.

Years ago, my husband's Uncle Joe (who has since passed away after a few years of dementia) told me a heartbreaking story. He was quite a storyteller, Uncle Joe. He enjoyed regaling us with detailed accounts of submarine life in the South Seas during World War II, mostly, but he was always willing to entertain with other yarns of wisdom I'm sure were spun from whole cloth most of the time. But I digress. Again.

Uncle Joe once told me of an elderly couple he knew from the dances he and Aunt Helen went to once or twice a week at the Hall. The wife had been suffering from Alzheimer's for some time, and the husband was her full-time caregiver. They were in their 80's. Maybe he didn't have help, or perhaps he didn't have support from family (so often, children move away for work or whatever, and they just can't be there as they would like to). Anyhow, the husband and wife went for a drive one day. She loved going for drives and was often calmed by the once-familiar scenery in the beautiful countryside that is Northern California. Was it an accident? Was it on purpose? Their car ended up submerged in a pond, and they both drowned. Uncle Joe said he was sure the husband had come to the end of his rope, and this was the only way he could think of to end their suffering.

At the time, I thought this was a sad tale indeed, but I really couldn't understand how anyone could lose hope like that. How could I? I was younger and hadn't personally experienced the kind of hopelessness and despair that comes with the loneliness of trying to deal with this disease. I get it now. Even when surrounded by friends, it is lonely. Because, no matter how hard others might try, and no matter how sure they are that they understand, they can't. It's easy to judge others when you don't really understand what they're going through.

Today was a not-so-good day. That will happen sometimes (increasingly more often than not), and if you're going through this too, please take heart. Not every day (or every hour, as the case may be) is going to be like this. Please don't lose hope. I know it's sometimes hard, but hang in there. Please.

Wednesday, May 3, 2017

Sorry Peaches

This morning, I was doing some potting in the back yard and noticed that the oleander bush on the hillside was huge and had encroached on our small peach tree, which is close to it. So I decided to prune the oleander back a little.

I was working away, and my husband was keeping me company, "working" alongside me. Too late, I realized that he had removed several fruit-bearing branches from the peach tree. Happily, he didn't hurt himself; however, there will be very few peaches this year. (They are extremely juicy, sweet, and delicious peaches. This will be a privation difficult to bear.)

In the scheme of things, this is not a big deal; however, it's just one of a long string of daily occurrences that are a constant reminder to me that so much has been lost. Our life is a dim reflection of what it used to be. Our relationship roles have changed dramatically. Where, in true partnership, I once bore responsibility for some things and he for others, the onus is now all on me for every decision.

Seven years from diagnosis down the road, the weight of it all is sometimes difficult to bear. And there's a long way to go.

Sunday, April 9, 2017

Under the Weather, Part 2

I am still feeling under the weather, and a dear friend's amazing husband has taken The Old Man out for a couple hours so I can rest. When friends offer this kind of help, please don't turn them down as I did at first, embarrassed. Say "Oh, yes! Thank you so much!" Trust me on this one.

Three hours later, I hear the doorbell. My husband has asked our friend to bring him home, and his face brightens when I open the door.

We go to the kitchen. He sits at the table, looking at me tenderly, and I start to prepare yet another cup of green tea with lemon and raw, local honey and a tiny bit of cayenne pepper. He asks me a question. I attempt a response, but I start to cough uncontrollably and try to explain, between coughing fits, that I can't talk very much right now. His hands cover his face as he rests his elbows on the table, his expression sullen and dejected. Is he crying?

"Honey," I ask, concerned, "What's wrong?"

"I just like you so much."

He just likes me so much. It makes him sad that I am sick. I go to him and give him a hug. This is a moment to remember. Can you blame me for having tears in my eyes?


Saturday, April 8, 2017

Under the Weather

I've been under the weather for a few days. Okay, a week and half. I finally decided to go to the doctor yesterday. My husband was with me, of course, and I was half afraid they would want to admit me. What would I do then?

But they didn't, and I'm trying to breathe between coughing fits. I'm on the couch, trying to rest, trying to ignore his urgent requests to leave the house to go somewhere or do something. It is a losing battle. He paces.

"Please, would you get me another glass of water?" I ask, lifting my glass in his general direction. Maybe he needs something to do, to focus on, besides being stuck in the house with me.

"Okay," he responds, taking the glass from my hand and leaving the room. Some minutes later, he returns with an unpeeled lemon on a children's plate.

"Honey," I try to modulate my voice. "I asked you to bring me a glass of water."

Again, he leaves, returning some minutes later. With a peeled lemon on a plate. He means well and is trying to help, I know. I force myself to get up, take the peeled lemon back to the kitchen, put it in a baggie in the refrigerator, and get my own glass of water.

Because when you're the caregiver, that's how it is.

Wednesday, March 29, 2017

The Wallet

A couple of years ago, my husband started fixating on his wallet. More specifically, he started fixating on the items in it. The minute we sit down somewhere, out it comes. He takes everything out of the credit card slots, places each item carefully on the table, asks me about each one, and says, "Where's my money? I don't have any money!"

I show him that he does indeed have some money in the back of the wallet. He takes the bills out, looks at them, carefully replaces them. I coax him into putting his wallet back in his pocket so it doesn't get misplaced. Outwardly, I'm as calm as can be. Inside, I'm freaking out and hyperventilating. I wonder why this bothers me so much. It's traumatic. It triggers something in me.

And then I remember. My dad used to do the same thing. It would drive my mom bananas as she tried to cope with caring for her man, who was slowly going away just as my husband is. He used to have exactly $5 in his wallet, and he counted it over and over, much to her dismay. I used to wonder why this bothered her so much. I get it now, Mom. I'm sorry I didn't understand then, but I most definitely do now.