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.