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-on 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.