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.

Monday, March 27, 2017

I Get Off Work at 6

I just found this post that I never published. It's a little rough and from almost three years ago, when my husband was still driving (only in town) and was home alone while I was at the office (three days a week). We live less than a mile away:

He shows up at the office at 5 o'clock thinking I should be home by now. I explain that I don't get off at 5 o'clock. I have never gotten off at 5 since I started working at this job (25 years ago).

"Well, what time do you get off?" he asks impatiently.

"6 o'clock," I reply. (My hours are 9:30 a.m. - 6 p.m., with an hour for lunch.)

"6 o'clock? Who gets off at 6 o'clock?!" He leaves the building in a huff. As quickly as he arrived, he gets in his car and vanishes.

But he comes right back and parks in the parking lot, where I can see the vehicle. He comes in without saying anything, standing right inside the outer door, in my line of vision. He is obviously very impatient, shifting his weight from one foot to the other and back. He leaves without saying anything. It's a little creepy, to tell the truth.

I used to think this was passive-aggressive behavior. Maybe it is, but maybe he just misses me, wants me to be with him all the time, and doesn't understand why I'm not home at 5 like everybody else. Yes, I am aware that not everyone is home from work at 5. But, evidently, he doesn't remember that when he was working, it was a minor miracle if he was home before 7. I decide to leave work a few minutes early and arrive home at 6 p.m.

"What took you so long to get home?!" he demands, looking at his watch. [He still looks at his watch, but he could tell time back then.]

"I came home a few minutes early," I cheerfully respond.

"Early? It's 6 o'clock!"

"Yes. I get off at 6 o'clock. I left a few minutes early."

"Who gets off at 6 o'clock?!" he exclaims.

Reading that again, I marvel at how "normal" (comparatively speaking) our life was at the time, and how restricted it has become (more on that to follow). He never did remember my work hours, though, no matter how many times the conversation was repeated. Before I "retired," he wondered why I was still working, why I had to stay until the end of the work day, why we couldn't just go somewhere. Now that I'm retired, he wonders why I'm not at the office. I can't win.

Saturday, March 18, 2017

Experimenting with Meditation

As we walk on the bluffs above the straits on this beautiful, sunny day, I decide to try an experiment in meditation for my husband. Meditation, we've been told, might help with the agitation an Alzheimer's patient frequently feels in the late afternoon. My objective is to help him quiet his mind by focusing on hearing.

I find an isolated bench in a peaceful spot on a small wooden footbridge overlooking the water. We sit down, and I ask him to close his eyes. I close mine.

"What do you hear?" I ask him.

"You," he replies, facing me with his eyes wide open.

I decide to try a different tack.

"All right," I venture, "I have my eyes closed. Please close your eyes. Are your eyes closed?"

"Yes," he responds. But his eyes are open.

"Please close your eyes so you can concentrate on hearing. I hear the waves on the shore. I hear a car in the distance. I hear birds singing. What do you hear?"

"Like that thing there," he responds. His eyes are open, and he's pointing to a screw sticking out of a board.

I am getting the idea that hearing is not what we need to concentrate on today.

"Okay, let's do something else. I feel the sun on my skin. It is warm. Do you feel that?"


"Do you feel anything else?" I ask, the cool breeze blowing the hair away from my face.

His hand finds its way to my leg as he sits closer to me. This is not exactly what I had in mind, but it will certainly do.

Monday, March 13, 2017

Where's Your Husband?

I'm standing at the stove, cooking dinner. It's been a fun afternoon, followed by some really spectacular sundowning by him and an outstanding meltdown by me. Dealing with Dr. Jekyll and Mr. Hyde can really take it out of a person, especially the day after daylight savings time starts. Everybody's body clock is off kilter, and it's a full moon. Just being "real."

"Where's your husband?" he asks while spreading his puzzle pieces in random fashion all over the kitchen table.

"He's here," I respond.

"Really? Where?"

"You're my husband," I explain, perhaps a little bit more flatly than I intended.

"Oh. Okay," he says with as little enthusiasm as I've heard in a long time.

Golly. Thanks...

Time for a Shower

Just over a year ago, I noticed that his hair didn't seem very clean after he had taken his shower. I started reminding him to use shampoo. A while after that, I noticed he wasn't using soap, either. So I started reminding him to use soap and shampoo. And I stood on the other side of the glass shower door to make sure he was doing that.

But soon I noticed that I was having to remind him to take a shower. And that he was just standing under the water, wetting down one side and then the other and then the first again, until I handed him the soap and placed shampoo in his hand. The shampoo sometimes was used to wash places you don't usually clean with shampoo, if you know what I mean.

So I decided it would be more efficient to kill two birds with one stone, especially since I was starting to have trouble convincing him to take a shower at all, much less regularly. I started showering with him.

Sometimes he stands with his arms out so I can make quick work of it with the soft shower puff and a nice body wash. Sometimes he doesn't know what I mean when I ask him to lift them. Most times I have to explain several different ways that he needs to get his hair wet so I can shampoo it. Then I must remind him to rinse the shampoo out. I reach around the shower door to get his towel so I can hand it to him. He sometimes leaves the shower area before I can grab mine.

If I'm not quick about getting out and drying off, he will have donned the underwear I've placed at the ready for him before I can remind him to use deodorant. I've decided not to worry about it too much. He's clean; that's what matters. Right?

Saturday, February 11, 2017

Car People

It's a gloriously sunny day in our little town today, so we took advantage of the break in the weather to enjoy a morning stroll along the cliffs by the waterfront on the west side. I thought I would scope out some good sketching places. I've decided the time is right for me to "retire" at the end of the month, for a variety of reasons, and art therapy is supposed to be good. Perhaps both of us will benefit!

But I'm going off on a tangent, as I often do. Back to my main point, which is that you just never know what you're going to see or whom you're going to meet when you go on a walkabout in our small city.

My husband and I were standing on the sidewalk, admiring a house we've (well, to be fair, that should be "I've") always loved. It's a cream and green Tudorish place on a well-situated corner, just a block or so from the water. When we first moved here some 35 years ago, it was for sale but needed some work we weren't prepared to undertake, given that the price of the house was at the very tippy-top of our budget, it only had a one-car garage, and the yard was too small for even the tiniest garden. We bought elsewhere, but every time I walk by this place, I think of what could have been.

At any rate, the next-door neighbor happened by, and we got to talking about the house and how the garage would have been too small for my husband's collector cars (at the time, a '36 Cadillac and a '36 Buick). The gentleman brightened and insisted that we meet his son, who was in their shop working on his pride and joy, a '63 Chevy pickup. It turns out they're part of a car club we'd joined but then were really unable to participate in due to my husband's illness. Who knew? They want to come by to see my husband's projects. Thank you, Julian and Sean, for reminding me that just one small thing in common can bring out such good will in people. I hope you do drop by.

The sad thing, of course, is that my husband can no longer work on his projects. But car people are car people, and they love to kick tires. Even if they don't exactly remember why.

Tuesday, January 31, 2017

Are You Coming Downstairs?

I'm starting to cook dinner. He has finished his puzzle and looks up at me.

"So, do you want to go downstairs and watch television?" he asks.

"Sure, but I have to cook dinner first," I reply.

"Oh, okay. I'll go ahead and go down there."

He leaves the room but is only gone a few seconds before re-entering.

"So, do you want to go downstairs and watch television?" he asks.

"Yes, of course. But I'm cooking dinner first."

"Oh, okay. I'll go ahead and go down there."

He leaves the room again and almost immediately returns.

"So, do you want to go downstairs and watch television?' he asks.

You're rolling your eyeballs. You think I'm joking or exaggerating. I am not. I can't even tell you how many times this exchange was repeated in a period of five minutes or less. I have pasted a smile on my face, because any second now, it will be repeated again. I haven't finished cooking yet. And I don't hear the television.

Ah, there he is! "What are you doing? Are you coming downstairs?"