A Penny for Your Thoughts

Alrighty, then.

A friend asked me a question the other day. She was curious about what I thought might be going through my husband's mind. What might he be thinking? Believe me, I've asked that question  ("What were you THINKING?!") a number of times over the years! But let's not go there.

Seriously, though, what do I think goes through his mind? That is actually a great question, and I wish I could answer it. Can we know what someone is thinking without the benefit of input from that person? We watch what a person does or listen to what a person says, and then we make assumptions about thoughts based on those actions or words or our past experiences with the person.

Wearing his pj's under his
street clothes.
August 2017

What is going through a person's mind when he apparently thinks it's perfectly normal to wear a couple of ball caps over a wide-brimmed hat or a t-shirt shirt over a buttoned shirt or socks over boots or underwear over outerwear? (Also see:  Your Mother Dresses You Funny) How does one decide it would be a great idea to pour a cup of tea into the pencil holder or to try to eat crayons (or hearing aids or iPod ear buds) or to drop a handful of coins into the pitcher of ice water or to scribble on the computer screen? Or to pee in the corner? He couldn't explain these things to me when they happened months and months ago ("Honey, why are you doing that?!" received a vacant stare). He's less verbal now than he was then, so I've got to think that what goes through his mind is pretty basic. But who knows? It might actually be complicated.

He holds my hand tightly and smiles at me and gazes at me intently. But I wish he could talk to me. I would love to have a meaningful conversation with him. Is he in pain? Is he often frightened and confused, or is he now simply living in the moment without a clue of the past or a hint of the future? I don't know, but at least I don't have any reason to think he is living in a state of fear. I hope not, anyway.

He seems less anxious and more at peace these days, except when he is being bathed or changed (he must think he is being attacked and is trying to protect himself, then promptly seems to forget all about it when the ordeal is over). He is "at home" in a place where folks understand about Alzheimer's behavior and how to handle it. It's the next best thing to having him here with me. I did the best I could for as long as I could and probably longer than I should have, and I am starting to be able to accept that others can take better care of him now than I would be able to.

It makes me feel good to know that, so far, he seems to be in the right place for him. It also makes me very sad for both of us. This is not what retirement was supposed to look like.


This blog is about our journey, not anyone else's. If there's something you're wondering about as you read my entries, please do ask questions. Part of the reason I'm journaling our journey is to increase awareness and understanding of Alzheimer's. 

Music Therapy

As I mentioned in Music Is Magic a few days ago, my husband has always loved music. While he was still at home, we played music all the time. There's generally music playing at his place, but it's geared more towards folks who are a bit older than he is. He still responds to it, of course, but it isn't the music of his youth, his heart, his falling-in-love times. It isn't the soundtrack of his life. We enjoy the music our parents played, and it might even remind us of happy childhood times. But it isn't our music, it's theirs.

I've struggled with ways to play his music for him without disturbing the other residents. His sister suggested that I take his iPod to him and leave it with him. While that's a wonderful thought and would be terrific under different circumstances, he no longer knows how to operate it. To ask the already taxed staff to keep track of the thing, turn it on and off for him, keep him from breaking his teeth while attempting to eat the earbuds, keep it charged, and prevent it from being broken or lost would just be too much to ask. His glasses have been missing for over a month and are nowhere to be found, so I'm thinking the same thing would happen to the iPod.

At any rate, as I previously mentioned, his iPod is still loaded up with the eclectic musical choices he selected years ago. I landed on a brilliant plan for his music therapy:  I would see if I could purchase a splitter so that two sets of earbuds could be used at the same time, enabling both of us to share the music experience together without bothering everyone else and allowing me to hear what he hears so I can respond engagingly with clapping, dance steps, or just nodding my head or tapping my foot to the beat. Then I thought about the earbuds and how appetizing he seemed to think they were, so I decided to see if I could also find some regular, lightweight headphones for him to use instead. He has a lot more experience with headphones than earbuds, and so I thought he might not be tempted to see how they taste. I was thrilled to find just what I needed at the first place I stopped.

Responding to Led Zeppelin

Today was our first attempt at this method of sharing music, and it went very well indeed. The new headphones fit his head comfortably, and the earbuds didn't fall out of my ears too often. I was glad to learn which songs elicited the most response from him and was able to skip the songs that weren't appealing. I encouraged him to "dance" with me to some of our favorite tunes. He tapped his foot at times, or whistled, or hummed. And then the most fantastic thing happened. The first few notes of Led Zeppelin's "Whole Lotta Love" instantly brightened his face with a beautiful smile as he looked at me and said, "Yeah!" Clearly, this was not "rest home" music. But he responded to it, and that's what matters to me.

I want him to be able to get some enjoyment out of life if at all possible, and I'm thrilled that this experiment seems successful so far. Like so many of the things I've tried in the past, it might only work for a couple of weeks. But that's okay. It'll be a couple of weeks during which I can drive home from his place with a smile on my face and a song in my heart.

The Fear Factor

"Did he ever voice that he was scared after getting diagnosed?" inquired a friend. I had asked people to pepper me with questions and suggestions about what they'd like me to cover in this blog. Surprisingly, the answer to that question is no. When he was told by the doctor that there wasn't a cure, he did say he didn't want to die; but, he was reassured to know that it wouldn't happen any time soon (it hasn't) and seemed satisfied with that.

October 2010
Six months post-diagnosis

In a strange way, he actually appeared relieved to know that there was a physical reason and a name for what was happening to him. It was as though he did not grasp the severity of the situation. I was in shock, and he was smiling. Where most people might have wanted to keep this kind of diagnosis under wraps for a time, he went around telling folks about it. And so our friends and family have known all along, almost as long as we ourselves have known.

Even though my father had suffered from dementia, perhaps the reality of what we would be facing together escaped my husband in those early days. We lived quite a distance away from my parents, and a weekend trip every month or so didn't expose my husband fully to what my mom and dad were going through. My mom was forthcoming in phone calls to me, so I had a better idea. And so perhaps my husband was blissfully unaware of the ravages the disease would have and the toll it would take. After all, my dad had been an old man. You might expect an old man to become weak and frail and forgetful. My husband was still young and strong and otherwise healthy.

Yesterday
Responding to music

As time went on and the disease progressed, he did not appear to be aware of his diminishing capacity; rather, he was frustrated with others. Perhaps he thought he was just fine and everyone else had a problem. Over the years, he did restate his desire not to die on a number of occasions (but not lately). Of course I always reassured him and told him he was going to be around for years and years (and he has).

I'm sure I've been much more fearful and anxious than he has been. There are a lot of things to be scared and anxious about, none of which are on his radar now. I consider that to be a blessing for him. What they say about this disease appears to be true:  It's harder on the family than it is on the person who has it.

But perhaps that's the case for every terminal illness, long or short. It's very difficult to watch your loved one leaving you, no matter what the cause or how it's happening. It's painful. And frightening. I'm told I will probably feel relieved "when it's over." But I doubt it.


This blog is about our journey, not anyone else's. If there's something you're wondering about as you read my entries, please do ask questions. Part of the reason I'm journaling our journey is to increase awareness and understanding of Alzheimer's. 

Music Is Magic

Music has a way of reaching past the Alzheimer's and firing up, albeit briefly, a person's spirit. According to the Mayo Clinic, "Research suggests that listening to or singing songs can provide emotional and behavioral benefits for people with Alzheimer's disease and other types of dementia. Musical memories are often preserved in Alzheimer's disease because key brain areas linked to musical memory are relatively undamaged by the disease." I don't know about all that, necessarily, but someone told me to think of it as being like riding a bike. You never really forget how to ride. It's in your muscle memory.

Enjoying that tune. 

My husband has always loved music. Every genre except rap, that is. Classical, gospel, country, rock, blues, bluegrass, jazz, and soul are all happily and generously represented in his considerable collection. He could "name that tune" in three notes or less and loved seeing and hearing his favorite artists "live" in concert. He frequently watched televised performances or popped in DVD's of bands famous and obscure.

So when I heard there was going to be live entertainment at the facility this afternoon, I made it a point to enthusiastically encourage him to "go to the concert" with me. This was not going to be a typical afternoon visit with naps interspersed with "earbud" music from the iPod I bring with me that's loaded with tunes typical of his eclectic taste.

The singing duo was mildly reminiscent of SNL's Marty & Bobbi Culp, but that didn't matter. Their song selections were standards spanning the decades. The show tunes, classic rock, and jazzy numbers were familiar and pleasing. It took my husband a while, but his eyes brightened and he seemed to genuinely enjoy the music, nodding to the beat, clapping his hands (astounding!), even dancing  (swaying to the music) with me and smiling as he held me in his arms. Dear reader, you can imagine how this made my heart glad!

Groovin'...

This is why I say that music is magic. It's miraculous. It reaches down deep in your soul, pulling out memories and associated feelings that may have been long forgotten. It transports you to far-away places and long-ago times. It elicits a powerful and positive response from people whose emotions may generally manifest in a thousand inappropriate ways and whose treasured memories and pleasing personalities are buried under layers of increasing confusion and disorientation.

It is heartwarming. And heartbreaking.

And look! I captured a smile.

Caregiver Stress Syndrome

"Everything will be better after you place him," they said. But it isn't as though the stress and trauma and worry have abated. Not one bit. It isn't as though I put my head down on the pillow and fall asleep for 8 hours. It isn't as though I wake up refreshed and relaxed. Far from it. Everything is not, in fact, better. Not at all.

I live in dread of the phone ringing early in the morning as it did last Saturday, telling me my husband was ambulanced to the nearest emergency room because he couldn't breathe. I go to sleep and wake up two hours later, drenched in nervous perspiration, feeling my heart beating its way right out of my chest, having another panic attack. If I do happen to sleep a bit longer -- say, for four hours -- I have disturbing dreams that prevent me from dozing off again.

There are an embarrassing number of things on my to-do list that have been there for months. But I either feel too exhausted to think of doing any of them, or I just don't care. And then I become overwhelmed at the long list of items waiting for my attention. A simple phone call becomes an ordeal to be anguished over for days before the receiver is lifted and the number dialed. Any decision to be made, no matter how simple, might as well be a climb up Mt. Everest. Every challenge must be ruminated over for days, lest the wrong decision be reached. And so analysis paralysis sets in, preventing any decision's being made at all.

The irony of all this is that I am not a shrinking violet, I am not a person who can't face things head-on, and I am not a wimp. Usually. But the ongoing, unrelenting, daily trauma of this situation is wearing me down in spite of my best efforts to enlist support, talk out my feelings, deal with my emotions, and pray for guidance from the One Who can help me best. Sometimes, the skies are brass, the clouds are thick, and the rain pours down unabated.

You'd think that having once hit the wall, that would be that. I didn't realize I would be slammed against the wall again and again, over and over, a figurative punching bag for every emotion passing by. There's nothing "post" about this daily, ongoing, never-ending tension.

Caregivers, does this sound familiar? Please do yourself a favor. Talk to a professional. That's what I'm going to do tomorrow.*

*Update:  I did it. It was worth it. Do it. Do it sooner than I did.

Sleeping Beauty

Dearest,

Today, you slept in a recliner in the television watching area through my entire visit. I tried to coax you awake with soft words and kisses, but you only pushed me away and went back to sleep.

I guess you had been up all night having an adventure, and I'm so glad you are now in a place (unlike the other three places) where the staff understands that this is a normal behavior for you and others like you. And it's okay with them. So they let you sleep if you want to, and wake up when you want to, and wander around if you want to, and eat when you are ready to. I am so grateful, and they have been wonderful so far.

But I am still holding my breath, waiting for the other shoe to drop. I really, really hope it doesn't, for your sake as well as mine. Getting used to new surroundings is difficult, and I don't think I can take one more thing. Seriously. As each day goes by, I realize more and more just how worn out I have become. Just how much the stress and worry and sleeplessness have affected my body. And my mind.

So, after a long while sitting next to you and watching you snooze, I got the lap quilt you were given at the American Legion as a thank-you gift for serving your country. I wrapped it around you to keep you warm, because your skin felt very cool in the air conditioned room. I tucked you in gently, waited by the door until a caregiver could come by to open it for me, looked back one last time to see if you were still sleeping, and left.

Until our next visit, then, my darling. Whether you are awake or asleep, I'll be there.

Tender kisses,
Me

Me and My Shadow

Tenderly touching.

We walked in the courtyard slowly, as we often do, hand-in-hand. Tender touch. It made me happy, and he seemed to like it as well. This day, he had greeted me, almost, and danced a few cheerful steps with me. He was having a good day.

We turned down the path, the sun at our backs, and suddenly he looked down and came to a screeching halt. He pointed to the ground. I looked. It was my shadow. My shadow was freaking him out. Did he think it was a dark, featureless being rising from the bowels of the earth?

"It's my shadow, honey," I explained, demonstrating how it moved when I moved and pointing out that he had one, too. It was right next to mine, but the angle made mine rather tall and his much shorter. Just the opposite of how things really were. He shifted his weight tentatively, puzzled, observing the moving shapes on the smooth cement.

Satisfied, or having lost interest, or not remembering what we were looking at and why, he lifted his head and walked on with me at his side, hand-in-hand. Tenderly touching. I hoped, somehow, he felt happy, too.