Wednesday, August 9, 2017

The Man in the Mirror

We have an antique armoire in our bedroom, and it has mirrored doors. During the day, the sunlight reflects through the window onto the mirrors and helps brighten the room. During the night on several occasions this past week, my husband has gotten out of bed suddenly to stand in front of those mirrors, staring at his reflection by the moonlight filtering through the window, not saying anything.

He seems curious about the man he sees there, leans over to look around to the side of the armoire, then looks at the front again, then the side again, then the front again. Side. Front. Side. Front. He doesn't seem agitated or threatened. I wonder what he's thinking. He still isn't saying anything. I ask him if something is wrong. He walks over to the window and looks out into the back yard, towards the neighbor's landscape lighting. Then he goes back to the armoire one more time and returns to bed.

"Who's that over there?" he asks, pointing somewhere between the armoire and the window. I don't know who that is.

In the past, he's asked me to look at the mirror in the hallway with him. He sees my reflection next to his, and I point out that we are the same two people who are in the framed photos just below it. Sometimes he accepts this explanation, and sometimes not.

This nighttime behavior of his with the armoire is new. I've read that Alzheimer's patients sometimes find it comforting to talk to their reflections. But sleep is at a premium at our place, so I'll probably have to cover the armoire mirrors at some point to avoid the distraction during sleep hours. Especially if he starts having conversations with himself.


Tuesday, August 8, 2017

Farewell, Glen Campbell

Glen Campbell died today. He was diagnosed with Alzheimer's 6 years ago, and he was 81 years old. Funny how hard I took it.

Mr. Campbell was a fixture of my youth, and his songs were part of its soundtrack. And so I felt a connection to him that was renewed when I heard of his illness. For the past couple of years, it seems he was always on my mind. I wondered when I would hear this news, as I'd read he wasn't doing well not that long ago. But you can't always rely on what you hear, so I took it with a grain of salt. And now this.

How can I not hear this news and compare it to our situation? Our families were seemingly on parallel paths, and now their battle is over. But ours goes on. I am not sure if I am relieved for his family, sad for them, grieving with them, or sad for us and dreading what's to come. Probably, it's all of the above.

My heart is heavy on so many levels, I don't even know where to start. But I know that someday, when we're all in Heaven, the pain will be over. There will be no more tears, no sorrow. Only joy in the presence of the King. So, maybe I'm also a bit jealous, Glen.

Please say hi to my Mom and Daddy, if you happen to see them. If you're pickin' and a grinnin' with your buddies who have gone before you, I'm sure my folks will be in the audience. Thank you for sharing your gift of music with us.

Tuesday, July 18, 2017

Picking Apples

Delicious apples from our garden!
Last year at this time, my dear husband brought buckets and buckets of apples into the house for me to process. Even the teeny, tiny, one-inch-wide ones. He saw them on the tree, they were (thankfully) ripe, so he picked them for me.

I was slightly aggravated that he thought I could take care of them all at once like that on top of my other duties, which, on that particular day, included my job (I was still working then). I had already picked the ones I planned to use for the first batch, and leaving some on the tree for a couple of days wasn't going to hurt anything.

Today, a Facebook post reminded me that the apples might be ready, so I went out to check on the tree. Sure enough, beautiful, juicy Gravensteins teased me from the upper limbs. I got a box and a short stepladder, and I started picking as my dear husband looked on distractedly or wandered around the garden. Up and down the ladder I went, depositing the apples in the box.

As I graduated to a taller ladder, he asked if he could help. Climbing up a shaky ladder is probably not the best idea for him (or for me, come to think of it), so I started handing the picked fruit down to him, asking him to place it in the box for me. This he mostly did, when he wasn't distracted or bringing apples back to me or putting them in his pockets or wandering off.

This is a small, not-very-significant thing, I know. But it's a demonstration of a couple of things: First, be thankful in all things. For instance, in retrospect, I should have been thankful last year when he picked apples on his own. Second, life can change dramatically in a very short time. In some cases, instantly. Live each day as it comes. See the first thing. Repeat.

Thursday, June 29, 2017

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!"

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, April 5, 2017

Puzzles for Brain Health

Isn't he charming?
My husband has always enjoyed working puzzles. For years, we subscribed to a so-so newspaper just because he enjoyed the New York Times crossword puzzle, which he usually completed in fifteen minutes or less. I enjoyed the comics and the letters to the editor, but that's a topic for another day.

Helping Papa
When my husband was diagnosed with this illness, puzzles were suggested as a possible therapy to keep his mind active. So I went out and bought puzzle books, the kind with the answers in the back in case you get stuck. But I noticed, once he started going to work with me every day so he wouldn't be home alone, that he was less and less interested in crosswords. I also noticed that he would "solve" one or two words incorrectly, get stuck (no matter how many times I suggested checking the answers in the back), and move on to another puzzle. I downloaded easier, children's crosswords to no avail. I tried mazes, which were more successful. But only for a while. And we switched to our old pal, jigsaw puzzles.

His favorite jigsaw puzzles had always been the really hard ones with lots of tiny pieces that look alike. Well, they all looked alike to me, with subtle color variations and barely any indication of skylines or lakefronts until the puzzle was coming together. It was a challenge. The pieces would be grouped together by color, shape, size. And naturally the border was always completed first, a kind of frame for corralling unruly pieces. I knew these puzzles would be out of the question.

A couple of years ago, he was interested in completing 500-piece puzzles (with quite a bit of help). A year ago, he worked 100-piece puzzles. I went to the dollar store and purchased dozens of 100-piece puzzles. Every time they had a new one I thought he'll like, it came home with us.

Today's puzzle.
Early this year, I started working the borders for him, and he worked the main body. Though he will sometimes surprise me by completing the rest of the puzzle entirely on his own, this is becoming a rarity even if he's worked the puzzle many times before. In fact, where he used to work at least one and sometimes two or even three of the 100-piece puzzles a day, he now seems to have lost interest. A puzzle can sit on the table for days, unfinished. He takes coins out of his pocket and organizes them with the puzzle pieces or even as part of the puzzle, as if they somehow belong there.

Has the task become too much for him to handle, or is he just bored? I suspect the former. There's lots about this illness that's evil and discouraging and depressing. This is just one of many things.

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?"

"Yes."

"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?"