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.

Tears on My Pillow

My Dearest,

Today when I greeted you with a big smile and a hug, you hugged me back. And then you chuckled as you wrapped your arm around me and pulled me tightly to your side. Did you know me? Were you responding to me, or were you simply responding to a friendly face and physical closeness?

When I leave, do you miss me? I hope not! I hope that by the time I walk out the door, you've forgotten all about me and moved on to whatever is next in your day. Because it tears me up to think there's even the possibility that you might wonder where I've gone off to and when I'll be back. Please don't do that.

I can't imagine what it's like inside your head, because you can't tell me what you're thinking or feeling. You were acting as though something might be causing you pain, but you couldn't tell me what or show me where. So I asked the Med Tech to keep an eye on you to see if he could figure out what might be bothering you, and he said he would. Did he? I hope so. I have to trust that he did, and it's gut-wrenching to have to trust others that way.

So tonight as I was praying for you and for those who take care of you, I cried. I cried because I can't help you. I cried because I can't take care of you myself the way you deserve to be taken care of. I cried because you aren't here with me, and I don't know how to be me without you.

I miss you. I miss you enough for both of us. Please don't be missing me, my love. I'll be back before you know it. I hope.

Desperate for you,
Me

Walk the Line

Part of the Courtyard

The courtyard at the care facility is large and meandering. There are plantings to see and railings to touch and murals to cipher. There are park benches and outdoor living rooms and tables with umbrellas to sit at. The walkway is wide and made of cement rather than stepping stones. I'm sure that prevents any number of trip and fall mishaps for the residents.

My husband and I were taking a little walk in the courtyard, and suddenly we came to an area where two sections of cement met with a metal seam. He stopped dead in his tracks, looking down, hesitating. Because people with Alzheimer's don't necessarily perceive these things the way most people would -- that it's just a seam in the cement and not a drop-off point posing a danger to life and limb -- I knew that he wasn't going to step over the line without encouragement.

"It's okay, honey. You'll be fine. Watch me," I said, holding his hand, stepping over the line and adding, "See? Come with me."

He seemed to ponder his options a moment or two, then raised his right leg high as he tentatively stepped up and over the perceived barrier. The left leg followed with a little encouragement, and off we went. Slowly.

It isn't the first time he's seen a cement seam or crack as a potential threat (at least, I think that's what is going on, since he doesn't verbalize his concern). He used to pause at cracks and seams for a split second sometimes when we were walking on the sidewalks downtown, in our previous life. He also stopped at the curbs when entering or exiting crosswalks, hesitantly stepping sideways either down or up, feeling the distance carefully to avoid casually stepping into a chasm or failing to lift his leg enough to clear the apparently very tall curbs.

In a strange way, it's similar to walking with a small child just beginning to explore the world, experiencing new things. 'Here we are at a crosswalk, darling. Stop and look both ways! Step off the curb carefully. It's very far, isn't it?' and at the other side, 'Up you go! That's right. Oops, you need to lift your foot very high, don't you?' Except that with the small child, it's a happy thing that means growth and development; whereas, with my husband, it's a melancholy thing that means exactly the opposite.