Saturday, December 16, 2017

I'm Sorry for You

Twice this week,
During stressful times,
Angst-filled times,
Frustrating times
Full of your agitation and anger,
You stopped mid-rage.

The lights came on.
You breathed in sharply.
Your eyes cleared in comprehension.
You looked at me with compassion.
Just briefly.
And you said,
"I'm sorry for you."

Thank you.
I love you.
I care for you.
You are my world.
Strange how this disease
Has brought us closer,
Yet distanced us.
I'm sorry for you, too.
My heart breaks for us.

Christmas Pub Crawl

Image may contain: 2 people, people smiling, people sitting, hat and indoor
Last year's Crawl
Last night was the annual Christmas Crazy Hat Pub Crawl that's organized by a friend. I look forward to this fun evening from one year to the next. It's a chance to make merry, relax with friends, and renew acquaintances. There were six or seven places on the agenda, with the evening due to culminate at the Vet's Club for food, games, and camaraderie.

My dear husband had a bit of a rough late afternoon with sundowning, but I dolled myself up and we donned our party hats anyway. I prepared a plate of Christmas cookies, and off we went. I hoped rather than believed for the best, and he settled down while we drove downtown. I breathed a sigh of relief. Hope springs eternal.

I was so looking forward to the crawl! We went to the first stop and waited for the group to arrive. It was probably the first time in my life I've been early for something. We ordered beverages. I tried to explain the situation to the gentleman sitting next to my husband trying to make conversation, but he paid no mind and proceeded to tell us about his lonely and miserable existence. Okay, then. I'm used to this kind of thing, so I took it in stride. He was encouraged and feeling better by the time my husband abruptly stood up and said, "Let's go!"

I do understand that my husband thinks it's time to go if his beverage is gone, even if I haven't finished mine yet or even started it. Yes, this is irritating to me, but I'm getting used to it. Of course, just as I get used to something, it changes. Anyway, I didn't want a scene to ensue, so we wished everyone well and walked to the next stop, about a block up the street in the crisp December air.

I discerned that my husband had to use the restroom (I'm getting pretty good at reading his body language), so I stood outside the door in case I was needed. And here he came, highly irritated, unable to fasten his jeans because he was trying to tuck in his t-shirt, shirt, a winter sweater, and his sweatshirt. Good thing I was close by. There was nobody else in the restroom, and I was able to coax him right back through the door instead of into the dining area. Disaster averted. But naturally a gentleman walked in just as I was zipping up my husband's pants. I can't imagine what he must have thought, but we all had a good laugh, which is a good thing. I needed one.

We joined our friends in the dining room, but my husband just wasn't interested. "Come on! Let's go," he demanded as I tried to make small talk. He seemed impatient, edgy, fidgety, agitated, and disoriented. He wanted to go home. Rather than trying to make the best of things, carrying on with the crawl in the hope that things would get better, I decided to call it a night. Wisdom is the better part of valor, they say. Shortest pub crawl ever.

It's sad to realize that evenings out, though they have been very difficult for a long time, are now probably a thing of the past. Just like that. Another loss in an endless string of losses, another disappointment in an endless string of disappointments. I'm trying to think of something redemptive to say, but I can't think of anything, so...sigh.

Tuesday, December 5, 2017

Santa Claus

It's almost Christmas again, that time of year when memories of other holiday seasons pop up that are unexpected but not necessarily unwelcome.

Last year, we were doing some last-minute shopping at a crafts store. The lines were long, and so there was a certain amount of trepidation about how the experience was going to go. Would my dear husband decide it was time to leave, right now, just before our turn with the cashier? Would a candy bar magically appear in his pocket (Why do they have candy displays at checkout counters?!)? Would he make a rude remark to the woman in front of us in line? These might seem like small things to you, but believe me when I say they pile up like straw. When you get to the last one, well, it isn't pretty.

But none of those things happened. Instead, there was a somewhat fidgety little girl and her mom in line behind us. The child was looking up at my husband shyly. It occurred to me that she thought he looked like Santa. Which, to be honest, he did. Except not as, uh, robustly composed.

Unable to resist the temptation, I smiled knowingly, leaned close to her, and whispered, "Yes, it is! Shhh...don't tell anyone. You see? You never know where he'll be. He's checking to see which children are naughty and which are nice. I would say you're being very nice indeed!"

Her eyes sparkled and widened, and her smile, well, what's more beautiful than a huge smile on the face of a small child? She was so excited! Hardly able to contain herself and with obvious effort, she stopped fidgeting, took her mom's hand, and was quiet as a church mouse. Her mom, having caught the whole exchange (of course), was highly amused and mouthed a quick "Thank you" to me.

I wonder, this holiday season, how many parents are standing in line with their fidgety little ones, exasperated, stressed, and wishing the time away? Perhaps Santa is watching! You never know where he'll be...

Merry Christmas!

Saturday, December 2, 2017

Thor. Or Whatever.

We're driving home from the theater, where we've just seen "Thor." He wasn't very engaged in the film, even though there was plenty of action and lots of computer graphics. And Led Zeppelin tunes. He loves Led Zeppelin and was swaying to the music.

The theater was crowded, of course, so I spent quite a bit of time making sure he didn't disturb others with unwanted comments or attention, as he is wont to do. He kept trying to pick something up from the floor. It was a shadow. All in all, it went pretty well, but I did have to wonder why I'd spent the money. However, none of that is the subject of this post.

So, we're driving home. He looks at me and asks, "Where do you work?"

"Wow!" I think to myself, "An actual question that makes potential conversational sense!"

I respond, "I work at home." I pause and add, "How about you?" I'm hopeful that he'll say something about the company he worked for, or that he doesn't know where he works, or that he doesn't remember, or something...anything...that would indicate understanding and engagement. Silly me. He doesn't answer. I ask again. He points to the hill we're driving past, "There's people up there and walking around and taking you up there and all that stuff." Squirrel.

Okay. But there are no people up there, walking or otherwise. Maybe it's a loose connection from "Thor"? I go along with it, because there's no point in pointing out the obvious. My head is getting accustomed to these letdowns, but my heart feels the punch. Still.

Does this post seem disjointed? Welcome to my world.

Monday, October 30, 2017

The Toilet Seat

When I began writing this post back in March, it was going to start with, "Most wives are upset because their husbands forget to put the toilet seat down. Not me." Because, well, mine was having a problem putting it up. And so it was such a joy sitting on a wet toilet seat in the middle of the night. But I guess that's better than falling into the thing, right? Anyhow, I learned to first wipe it off before sitting. I'm a quick study.

A lot has changed since March. Sitting on wet seats now seems like such a small problem, one hardly worth mentioning except to get a laugh. What's more concerning is that toileting is taking place in all kinds of places. The shower stall and bathtub and bathroom floor are easy enough to clean up if I notice the stain before it dries, but I just hate waking from a deep sleep to the tell-tale sound that means I'll be shampooing the carpeting in the middle of the night. It's hard to get back to sleep after that.

It isn't that he can't make it to the bathroom; it's that he thinks he's there. It isn't that his aim is off; it's that he thinks he's urinating in the toilet when, in fact, he's urinating beside it. Or across from it. Or in the corner. Or in the closet. Or wherever. And I can stand right next to him, trying to redirect him. But he just looks at me uncomprehendingly. It's so hard to understand how this could possibly be, but there you have it. A bedside commode wouldn't solve the problem. Peeing in the shrubs is one thing. Peeing wherever is something else.

I'm sorry if this post offends your sensibilities, but things are "getting real" around here and have been for some time. I've been hesitant to post about these and other sensitive issues. It's not something people talk about in polite company. But it's something that happens. You expect your loved one to become incontinent at some point with this illness. You just don't expect incontinence to look like this. And worse.

By the way, if he ever makes it to Mexico or on a sailboat again, I don't have to worry about him trying to flush the toilet paper, thus clogging the system and causing a backup. The used paper ends up in the trash can (preferred) or in the magazine rack or behind the toilet or under the bath rug. Anywhere but the toilet. Hooray!

Be Sure to Take Care of Yourself

This is a very difficult post to write, but the fact that the subject comes up over and over again is maybe a hint to me that it's "time."

"Be sure to take care of yourself." "You're no good to him if you don't take care of yourself." "Who will take care of him if you don't take care of yourself?" But especially "Be sure to take care of yourself." I know you mean well, really I do. Maybe you can't think of anything else to say, and you're concerned about me. You see me running myself ragged, worried, exasperated, exhausted, and with a pasted smile on my face.

That smile appears every time someone says, "Be sure to take care of yourself." It protects me from saying, "Oh, shut up!"

"Why is that?" you ask.

I know you don't believe it, but I really am doing my very best to take care of myself. My spiritual self. My emotional self. My physical self. But it isn't as easy as you might think. I'm knocking on a lot of doors, hoping some will open.

Take, for instance, respite care. As I mentioned in a previous post, the Veteran's Administration generously offers two weeks of respite, twice a year. That is absolutely amazing, is it not? When I found out about it, I applied for my first two weeks. I can't even tell you how excited I was!
That was in May or June of last year. I got the call several months later, and my husband was all set for admission. The first week of December. Yep. Six months later. Six months during which his situation deteriorated further, his stage in the disease advanced, and his behavioral issues became more difficult to handle.

Almost as soon as I had dropped him off, I started getting phone calls. "How do you handle this behavior?" "How do you handle that behavior?" "What do you do when he does this? That?" Truly, it was a trying experience. I thought they were the experts, but apparently their expertise did not extend to my husband's stage of Alzheimer's. At any rate, four stress-and-phone-call-filled days later, more exhausted than I'd been when I dropped him off, I was asked to come get him. I was angry. I was disconsolate. There had been a ray of hope for me, and now it was gone.

Respite having gone so badly, it took me a couple of months to explore other options. Day care was suggested. I visited several places in various nearby cities and settled on one just about 20 minutes away. It would mean two round trips a day, each one including a bridge toll, but I was willing to give it a try. I applied in June of this year, and my husband was accepted pending a home visit by a social worker. I was hopeful. The young, attractive social worker arrived in August (yes, two months later), and my husband displayed (for the first time) a completely new behavior:  outrageous flirtation. She seemed nonplussed, however, and said we would schedule the in-office assessments the following week. At this, I went from hopeful to expectant to ecstatic! But then she called later that afternoon and said my husband was not a candidate for the program, after all. Wouldn't you think a place that specializes in memory care and dementia would be prepared to handle the inappropriate behaviors that are, after all, part of the deal? Another door slammed in my face.

But lest you think I have given up, allow me to assure you that I continue to knock on doors. For instance, I recently learned of a live-in Alzheimer's facility in a nearby town that offers 24-hour respite care from three days to a whole month. I am in the process of investigating that. Surely, surely there is something out there besides placement. Though I am not walking through this with blinders on, thinking placement will never be an issue, surely there is an intermediate step. Something that will give me some much-needed time off without permanently altering our life together.

I am so grateful for friends and family who have stepped up and offered to help in various ways. Movie outings. Shopping afternoons. Trips to the dog park. Overnight visits. Each one of these breaks, even for an hour, enables me to "take care of myself." To read a book. To write a post. To take a walk. To...go to the bathroom by myself. Thank you so, so much.

Saturday, October 7, 2017

The Art Supplies

Before I "retired" from my job last winter (read:  'stopped working outside the home'), I bought lots of art supplies for my husband and me. I was in a dream world, imagining that we would sit by the water that flows past our small town on the way out to sea, drawing or painting the scenes we beheld there. Sailboats catching the breeze, tankers and cargo ships on their way to or from port, birds congregating on the shore, a train traversing the far shore, that sort of thing. Call me crazy, but I hoped my presence and attention would encourage artistic endeavor and release. Needless to say, my romantic notions were quickly dashed on the rocks by an endless rainy season and quickly deteriorating situation.

Very briefly, my husband showed an interest in watercolor. By this I do not mean panoramas or even abstracts, but stick figures and things. This was fine but didn't last past a couple of sessions, by which time he was playing with getting the colors in the palette set overly wet and mixing them together into blobs, the way a preschooler might play with plasticine modeling clay (which gives me an idea!). It was clear that cleaning up would be my reward, but it was worth a try.

I also purchased an assortment of adult coloring books and good-quality pencils I thought he might enjoy, but it quickly became obvious that the designs were too complicated and confusing, so I bought Curious George, Despicable Me, and other children's activity books. I brought out the crayons. He enjoyed that for several months, but then either lost interest or forgot what he was supposed to be doing and how to do it. He began simply tearing the pages out of the books and "organizing" them instead of coloring them. The children's activities in the books, sorting and mazes and simple dot-to-dots, were a forgotten part of his skill set.

The crayon wrappers were torn off and the crayons broken in pieces. Crayon bits and pencils were placed in his glass, full of water, instead of in the container I had provided. One day, a repair person was in the kitchen, and my husband seized the opportunity to drop all of his coloring pencils in the fresh pitcher of ice water I had prepared.

These developments, as you can imagine, were difficult to accept. Here was a guy who had been a regional manager in a technical field, and he was unable to perform at kindergarten level. Or maybe it's preschool level. I'm a little out of touch with these things.

But color me undeterred. I'm going out to buy a few more coloring projects for him, and I'm going to try a different approach. He needs to fill his time with something other than staring out the window and investigating various noises, real or imagined. If he can, of course. We'll see.

Wednesday, October 4, 2017

Your Mother Dresses You Funny

The first time you notice a new, interesting behavior with this disease, you think it's a fluke. But it isn't. It's just the first time it's happened. Mark your calendar.

My husband is a U. S. Navy Veteran, and I discovered last year that the Veterans Administration offers respite care at a nearby clinic. More on that in a later post, but when I went to pick him up and take him home, here's what he was wearing:  two undershirts (t-shirts), pajama tops, a heavy shirt, and a light jacket; two pairs of underwear, pajama bottoms, jeans, two pairs of socks, and tennis shoes. How he managed this was a mystery to me, but of course I blamed it on lack of care or attention from the staff.

We didn't have a repeat performance right away, so naturally my thoughts about the VA remained the same. I fired off heated emails and made phone calls of complaint to his doctor and all that. I'm sure you might have done the same thing if you were in my shoes.

About February, even though he was already dressed and looking good, he would get another shirt out of the closet and put it on. Over the one he was already wearing. This started happening regularly. Or he would be dressed and ready to go, but while I was putting myself together, he would change his shirt three times or put his pajamas back on. And then when I handed him his clothing, he would try to put it on over his pajamas. He was going through more wardrobe changes than a model at a fashion show.

The logical order of things escaped him. He tried to put on his pajama top by putting his legs in the armholes. He came out of our room wearing pajamas, a t-shirt, a shirt, and a sweater; his pajama bottoms were under his jeans. He started putting on his boots first, then trying to pull his jeans on. That didn't work too well, and he would get stuck. Being stuck is upsetting. Being upset is not great for you or anyone around you when you have Alzheimer's.

It was clear that this was going to be an ongoing situation. Needless to say, it started taking us a lot longer to get ready for our day, and we're often fashionably late. Okay, we were often fashionably late even before, but it's worse now.

One of the questions we are asked by doctors, I assume as a measurement of progress, is "Does he dress appropriately for the season and/or the occasion?" Uh, no. I've secreted all of his heavy winter shirts away, out of sight. He likes them a lot and insisted on wearing them in 100-degree weather. The other day, he came into the kitchen wearing an undershirt, a shirt, a t-shirt over the shirt, pajama bottoms, shorts over the pajama bottoms, a sandal on one foot, and a boot on the other. And a ball cap to complete the look. So, no.

For the past couple of months, getting ready for bed has become a rather dramatic affair on a regular basis. He frequently resists me when I try to help him remove his street clothing, batting my hands away as if a total stranger were trying to take his clothes off. I suppose I should find this reassuring? I have decided to pick my battles. Who cares if he's wearing a shirt and walking shorts to bed? Come to think of it, it might actually be a good idea in case he wanders out of the house.

But I'm absolutely putting my foot down on wearing shoes, boots, or sandals to bed. For now. Socks are okay, I guess. As long as they aren't the same ones he's been wearing for three days.

Monday, October 2, 2017

The Home Helper

Since January, we've had a home helper come in for a couple of hours, two days a week. It's been quite an experience!

The first young lady was touted as being very experienced with Alzheimer's patients. However, this was a bit of a stretch in terms of handling unfiltered behaviors or keeping my husband engaged. And her lack of initiative was startling. She stayed for a month, then passed the baton back to the home office. She felt a man would be a better fit, and I agreed; however, the agency indicated it would be a bit difficult to find a man for the job.

But, lo and behold, they found one. He was also, miraculously, advertised as being very experienced with Alzheimer's patients. I was told his relative had Alzheimer's, and this young man was sharing the caregiving with other family members. But in casual conversation I discovered that while this relative was infirm, there was only a suspicion of possible dementia. I would not call that "experienced with Alzheimer's patients." Would you?

Anyway, my husband and this young man got along very well, but he was habitually late and then started skipping shifts regularly. Often, I would find him working a jigsaw puzzle alone while my husband was wandering around the house aimlessly. The young man ended up getting a permanent job elsewhere, and I hope he is doing well there. Frankly, at this point, I had pretty much decided that the situations with the home helpers was causing me even more stress instead of relieving some of it.

Which brings us to our current person, who is a very good egg and puts up with my husband's idiosyncrasies without batting an eye. She spent the first couple of months getting acquainted with my husband. She familiarized herself with his interests or lack thereof. She tried a variety of activities with him to determine his abilities. In short, she took the bull by the horns. She's been coming over long enough that I can trust her with my husband, and she takes him with her to "run errands" so I can get an occasional walk in. Huzzah! Unfortunately, she's experiencing some health issues of her own. I hope those are resolved quickly so we don't lose her.

At first, communication with the agency itself was an adventure, with lots of apologies about shortcomings (such as, for instance, failure to let me know the home helper had called in sick) and very little done to rectify them. But they've undergone a personnel upheaval from management down, and now things are much better, at least for the time being. Just in the nick of time, too, as I would have switched agencies if I didn't get along so well with the home helper.

All of that to say, at some point you might need a little help with your loved one. If the first person isn't working out, try, try again. Eventually, you'll find the right fit for you and for your loved one. And that's a very good thing.

Saturday, September 30, 2017

Did You See That?

People with advancing Alzheimer's often see or hear things that aren't there. We've had a few of those incidents here, with the latest one being this morning.

My husband was walking past the stairway that leads to the Man Cave area. He looked down the stairs and said, "Hey! What are you doing down there?!"

Instead of trying to reassure him that there was nobody but us around, as I have been known to do in the evening when he wants to check the darkened house for activity by others before, during, and after going to bed, I decided to "go with it" and asked, "Did you see someone, honey?"

"Yes, I did," he replied.

"I'll go down and check," I said, already on my way down the stairs. I looked around briefly, because you never know. There actually might have been someone down there, right? But of course there wasn't.

"They must have left," I explained on my way back up the stairs, and that seemed to satisfy him. Or maybe he had already forgotten all about it. You know what? It was much better than arguing about whether or not he had really seen anything. I am learning.

You Kiss Your Mother With That Mouth?

God is good. Always good. He does not send disease "to teach us lessons." He is not a passive-aggressive God; he is not an abusive Father; he is not a disinterested Friend; he does not abandon us in our time of need. We were created to have fellowship with Him. He is unjustly blamed for bad things that happen to us and others, things that would more fairly be attributed to the enemy of our souls, to the human condition, or to ourselves due to our bad decisions.

But, as far as we know, this disease has nothing to do with bad decisions. To me, there is no greater proof that Alzheimer's is a downright demonic disease than the theft of a person's reasoning ability and the Jekyll/Hyde switch from a really nice person to a verbal (and, I'm sure sometimes, physical) abuser and back in a split second.

Many of you know that my employer was absolutely fabulous in working around our situation, allowing me to work mostly from my virtual office at home for the last year or two of my employment and only expecting me to physically be in the actual office when absolutely necessary. Not only that, but it was no problem with my employer if my husband tagged along on those occasions, even "helping" me with some of my tasks and feeling useful. I'm very appreciative of the love and concern demonstrated to us, and this allowed me to keep on going until it just really wasn't possible any more.

So, about a month or so before I stopped my outside work altogether, my husband was with me at the office as usual. It had been a normal and customary day, but now it was sundowning time. We headed out to the parking lot, got in the car, and started home.

Suddenly, out of nowhere, in the middle of "conversation" (such as it was and is), out came the most flaming torrent of blue language you've ever heard in your life. Vile, foul stuff. Jawdropping, take-you-by-surprise, breathtaking stuff. Now, don't get me wrong. My husband would on occasion -- especially when angry, upset, or irritated -- utter an expletive here and there, like most guys (and a lot of women, too) do under the circumstances. But this was far beyond that.

I seem to have misplaced the note I had this particular diatribe and other indignities written on, thank goodness, so this is written to the best of my memory and sanitized pretty well:  'You (expletive deleted) female dog. You're a horrible (expletive deleted) person, you (expletive deleted) female dog. You're the worst (expletive deleted) person I've ever met. I'm going to (expletive deleted, expletive deleted) knock your (expletive deleted) head off...' Etc. Well, you get the picture. Need I go on?

The barrage of insults and profanities against me and everything associated with me (my looks, my personality, my work, etc.) lasted all the way home. Which, granted, was only about five minutes. Thankfully. And as soon as we pulled in to the driveway, the Jekyll/Hyde switch flipped. It was as if nothing untoward had happened (except for the residual pain in my heart, fury in my belly, and tears streaming down my face).

"We're home?"

"Yes, we are."

And we got out of the car like two perfectly normal people on a beautiful day.

I've read somewhere that people in late-stage Alzheimer's have difficulty with vocabulary and many increasingly use profanity to express themselves when they normally would have resisted this impulse in the past. So, there we are. Or, there we were seven months ago, anyway.

Friday, September 29, 2017

It Wears on You

These past few weeks, for the first time since we started this journey, I haven't been focused on where we are in the process, how long the dark tunnel ahead is, or how far away the light at the end of that tunnel is. Rather, I am starting to wonder how much longer I am going to be able to keep this up physically and emotionally.

At first blush, this seems like a rather selfish thought, but it isn't. I am beginning to realize that, though nobody can care for him as I do, the commitment to "love, honor, and cherish, for better or worse, in sickness and in health" might be better accomplished in partnership with professionals at some point down the road. This is a difficult thing to admit to your stubborn self, even when you've known all along that it was a probability.

Sometimes, as my friends and family remind me often, the hardest thing to do is to make the right decision for your loved one and for yourself. What good will I be to him if I am clinging to sanity and/or health by my fingernails? And when will I know if I'm reaching that point? I have some benchmarks penciled in for myself, but will I recognize them when they happen? Or will I be delusional and feeling perfectly safe? These are valid questions.

This has been a year of steep cognitive declines, personality changes, and care requirements. But I look at him across the kitchen table, focused for the last five minutes on building something unknowable with large Legos, then staring out the window and stroking his beard, then wiggling his eyebrows at me when he notices I'm looking at him.

My heart warms and I smile. And I put those thoughts away for one more day. Or at least for now.

Wednesday, September 27, 2017

I Get Emotional Sometimes

We were watching a little PBS this evening, and on came a Glen Campbell fundraiser special, "Good Times Again." The songs were, of course, a throwback to younger days. It's easy to look back with rose-colored glasses, but those times held plenty of heartache in them, too, just as all times do. Retrospect is a funny thing, though, and as long as a song or skit doesn't remind you of struggles in your life, it's a feel-good experience to take a walk down memory lane.

During the "call-in" portions of the program, much was made of Mr. Campbell's struggle with Alzheimer's, his "poignant and courageous" final tour, the video of the tour that's available as a thank-you gift, etc. It was put together in a very emotional, heart-tugging way that's designed to make you pick up the phone and call. Or maybe it just made me emotional and tugged at my heart.

Returning to the musical programming, there was Mr. Campbell, smiling, wittily telling a story about meeting his hero. Eloquent. Expressive. Playful. Ten years ago. I drew parallels without meaning to, instinctively.

Suddenly, seemingly out of nowhere, I completely lost it. Overwhelmed, I had to leave the room. I didn't want to upset my husband by bursting into tears in front of him. There I was, crying like a baby. Sobbing, even.

You see, even when you think you're holding it together pretty well when caring for a loved one with this disease, especially your most special someone, it doesn't take much to peel off the glossy veneer of self-control and reveal the raw desperation you sometimes feel when facing the uncertainty...or maybe it's the certainty...of the future. It's heartbreaking.

Thursday, September 14, 2017

Debbie Downer

In the three weeks since I posted "You're My Friend," a lot has unfortunately changed. You see, my good friend has had to place her dear husband. It's impossible for me to convey to you the feelings that this has stirred in me. Please don't misunderstand me. I completely support her decision. Only the person who has been providing care 24x7 for years can possibly know what it's like, and she realized that placement was best for both of them at this time. I mentioned in my previous post that her husband was not being his usual self, and things rapidly deteriorated.

I hear from you that you enjoy my posts, that they encourage you, uplift you, and give you some sense of what this journey is like. I sincerely hope you are reading between the lines and looking past my general cheerfulness. I'm optimistic and joyful and encouraging by nature and most of the time. But sometimes, believe me, it's all I can do to put one foot in front of the other. (And, yes, kind reader who felt it necessary to "warn" me years ago, I was and am perfectly aware that the future holds more surprises. Yay. And I forgive you for laughing at what you thought was my naivete at the time. This is not, however, my first rodeo.)

So, about my feelings. I'm sure you're probably aware that I don't post a lot of things I could be writing about right now. I will do so at some point, but it just doesn't feel helpful to discuss negative experiences such as sleeplessness, wandering, toileting, bathing (or lack of it), combativeness, aggression, and other wonderful stuff while I am feeling so beaten down and discouraged.

We and our friends have been a foursome for several years, meeting out and about, taking day trips and even cruises together, hanging out together, supporting each other. And now that has all changed. Just how it has all changed remains to be seen; but, naturally, plans have been cancelled and dates have been postponed. My friend's attention will be required elsewhere.

And so, even though I know it is not true, today I feel cut off and abandoned. Because I am so tired from days and weeks and months of stress and fractured sleep, I also feel suffocated, exhausted, demoralized. My mind is wandering to places that are dark and dreary. Places with no lights at the ends of tunnels. I wonder how long it will be before I'm forced to make the decision my friend has made. And that makes me cry out to the Lord in despair. I am desperate for the lies to be torn down so I can see past them to the truth and embrace it. I am just so, so tired. And I apologize to you for this "Debbie Downer" post.

Wednesday, September 13, 2017

It's Puzzling

My husband used to love puzzles. (Here's the link to a post about that and how we ended up doing piles of jigsaw puzzles.) Now he seems to have lost interest in jigsaws, other than to say "That's a pretty one" when he sees the picture on the box. Yesterday, I got out a puzzle with a photo of a horse on the front of the box, as he usually enjoys looking at horses and often chooses those puzzle subjects.

It was a 100-piece puzzle. I put the border together for him, because that's become impossible for him to do. I encouraged him to find pieces for me as I worked the puzzle "with" (read "for") him. He didn't. In fact, he started to break apart pieces that were already together. I continued to encourage him to help me, but he just sat there and watched me. Finally, there was just one piece left. Just one. And just one empty space for the piece.

"Go ahead and finish the puzzle," I suggested cheerfully.

"Okay," he responded as he sat there, looking at me without making a move.

"Honey, go ahead and finish the puzzle," I reminded him.

"How?" he asked.

"Well, there's one piece left, and one place for it to go," I said, pointing first to the piece and then to the empty space. I repeated this process several times.

But he didn't look where I was pointing as you might expect someone to do. He just stared at me uncomprehendingly. I tried again and again, but to no avail. He seemed confused and annoyed, still making no move to even attempt to pick up and place the puzzle piece.

Someone has suggested that I try easier puzzles, so I'll do that. But I don't hold out much hope. So much has been lost in the past few months, I hardly know where to start.

Tuesday, September 5, 2017

Who's that on TV?

It's been one of those mornings, but I'm trying to get a few things done outside anyway. Trimming and deadheading plants, emptying the remnants of ice chest contents from the weekend's "last" barbecue of summer (not really, I hope), that sort of thing. We've had a terrible heatwave, and the air is blissfully cool and breezy.

I come back inside, looking for my dear husband. He was just with me a minute ago, but now the house is strangely quiet. I check the bedroom. Perhaps he's taking a nap? Nope, not there. I know I haven't heard the front door alarm go off, and I've been right next to the back door. So I'm not really nervous; however, I'm wondering what he might be up to, if you know what I mean. If you have a toddler or you're on this journey at your place, too, you know just what I mean.

"Harry, where are you?" I say, loud enough to be heard.

"Watching down here," he responds, his voice wafting up the stairs from the Man Cave. That could mean pretty much anything.

I hurry down the stairs, as I've just a few minutes ago returned some things to the Man Cave that somehow had found their way to the bedroom. I don't really want to repeat that process right now and am hoping to circumvent further redecorating efforts.

I round the corner into the Man Cave. He is sitting on the couch, looking quite comfortable and pleased with himself as he sweeps his hands through the air in the direction of the television. Voila. The half-smile on his face says, "See? I'm watching television."

But the television is not on. He is seeing his reflection. Alrighty, then. Enjoy the show, my sweet.

Thursday, August 24, 2017

Hello? Is Anybody Here?

We're in the kitchen, sitting at the table. I'm on my laptop, trying to transact a little business online, and he's looking at a travel brochure. It would be inaccurate to say he's reading it. He's looking at the pictures of Alaska.

He gets up suddenly, leaves the room, and starts going down the hallway.

"Hello? Is anybody here?" he asks.

"I'm right here!" I respond, bewildered. I'm still sitting at the table. How can he turn around and forget that I'm right there?

But he doesn't hear me or doesn't comprehend what I've said. He is now farther down the hallway.

"Is anybody home?! Where did everybody go?" He sounds anxious now.

"I'm in the kitchen, honey," I reassure him. "I haven't gone anywhere," I add as I get up from the table and head for the hallway. But he is already making his way back to where I am. He seems relieved to see me. I notice that he has turned on all the lights. The outside lights, the hallway lights, the lights in all the bedrooms and bathrooms.

"Would you like me to turn on the television for you?" I suggest.

"Yes, please," he says. He heads downstairs to the Man Cave, where he likes to watch television. But only if I sit with him. He doesn't watch by himself anymore as he used to do not that long ago.

I go back upstairs for a moment to get my laptop and to turn off the lights. I come back to the Man Cave. He is watching Blue Bloods. Sort of. He has fallen asleep. But it will only be for a moment. He will doze on and off until bedtime. And then he will sleep for a little while, get up and wander around, come back to bed, sleep for a little while, get up and wander around. Eventually, I will fall asleep, too. But not for long.

Wednesday, August 23, 2017

You're My Friend

Yesterday, we joined another couple at a local coffee place, as has become our habit for social interaction and mutual support. You see, she's just been told that her husband is in Stage 6+ (out of 7 stages). He has frontotemporal dementia. She is a lovely person, so dedicated to making sure her husband is getting the best possible care and taking every opportunity to spend time with friends. He is such a nice guy, friendly and conversational until relatively recently. He still speaks with difficulty, but even his wife has trouble knowing what he's saying. Lately, he has seemed a little morose and detached.

Usually, my husband grumbles when we sit down at our table, turning his back to our friends irritably and nonsensically greeting everyone else who comes in, making unintelligible teasing comments and asking questions the meaning of which only he can be sure of. It seems rude and encroaches on everybody else's space, but the regulars at the coffee shop are so cool with it. Kind and understanding. Well, usually.

So yesterday, fresh from a trip to an animated film with another friend, my dear husband was in an unusual, happy mood as we sat at our table. My friend's husband was in a very confused, nervous, wandering mood. Not his usual scenario at all.

He wandered in and out of the coffee shop several times to check out something he thought was happening with their car (nothing was happening). Totally out of current character, my husband was concerned for him, following him to help him and bring him back to our table. This in itself was astonishing. Both men sat down opposite us ladies.

Suddenly, my husband turned to my friend's husband and said, "You're my friend." Receiving no acknowledgement other than a confused nod, he added, "You are! You're my friend. I like you. You can help me, and I can help you."

We ladies caught our breath and looked at each other in surprise. Our jaws drop to the floor. And then we quickly looked away, lest the tears flow freely. What a beautiful moment. For a moment.

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?"


"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?"