Ukulele Tunes

A while back, I happened to be at the facility when the music therapist arrived to sing and play for my husband. The young man who was originally assigned to him has now been replaced by a young woman, and she's just as sweet and kind as can be. She selected a few tunes from my husband's youth, and I sang harmony to her melody. It was fun.

The thing is, I noticed how my husband's eyes lit up as she played and we sang. It dawned on me that listening to recorded music is nice, but it isn't the same as live music. The interaction is on a different level entirely. While my husband certainly liked the iPod playlist, there was more opportunity to catch a moment of clarity and connection with live music. So, I decided I would pick up our guitar and learn a few chords.

There was only one problem with that. The instrument, a classical acoustic guitar, was just too big for me to lug around, and my unaccustomed, clumsy fingers couldn't manage the string and fret distances. I tried. I failed. Don't judge me; I may return to fight another day.

Enter the ukulele! It arrived a few days after I ordered it online, and I learned three or four chords right away. Did you know you can play and sing a bunch of songs with only three or four chords? A few days later, I arrived at the facility with five whole songs in my repertoire. I tried to stay in a quiet corner with my husband for his "concert," but other residents gathered around for the entertainment. My playing was awful; but, on the plus side, my singing left something to be desired. They loved it.

In the ensuing weeks, I've learned more chords and more songs. Unfortunately, my husband appears to be in a declining state of engagement that seems to have started around the first of the year. I feel as though I've been a day late and a dollar short. Last Friday, he was on his bed in his room when I got there. I was happy to be able to spend some "alone" time with him, just the two of us. He almost started to smile when I greeted him, but didn't or couldn't, and he just turned away, vacantly looking up at the ceiling and over at the wall as I sang and played some familiar songs. Perhaps he was wondering who I was.

He didn't react much at all until I softly played "Nothing But the Blood of Jesus," an old standard written by a Baptist minister named Robert Lowry in 1876. And then he tried to whistle. The faint sound barely escaped his lips, but it went straight to my heart. 

At the end of each visit, I say the Lord's Prayer while holding my husband's hand, and then I pray Psalm 23 over us; but, this time, I began to sing the Lord's Prayer instead. As I did so, I noticed that he was folding his hands as if in prayer. I continued to strum the ukulele and hummed quietly as he fell asleep and started softly snoring, his folded hands relaxing and dropping to his chest. What a beautiful, peaceful moment it was.

My husband's body may be failing him. His cognitive ability may have left him. He is completely helpless and at the mercy of others for every aspect of daily living. But there is nothing wrong with his spirit.

The Whistler

February 5, 2020

He whistled for the first hour and a half of my visit today. He's been whistling a lot lately. Whistling while pacing. Whistling while sitting. Whistling while lying in bed. Whistling to music. Whistling to no music. Whistling loudly, whistling softly. Whistling so much that one of the other residents tells him to be quiet. This request has no effect on him whatsoever, obviously.

It's interesting. I don't remember him being an avid whistler in the past, or even whistling enough for me to notice. He's actually a pretty good whistler, and that brings back memories of my father, who whistled and sang all the time. He could do lots of bird calls. When he whistled a tune, you recognized it. While these memories are pleasant, they also stab me in the heart. My dad had dementia, too, for years.

Even though each case is different, you can't help comparing one to the other. "How long had my dad been ill when he started doing this," I wonder to myself, or, "After this behavior started, how long did my dad live?" It's a morbid obsession, I suppose, but there it is.

One of the things people who are wired like I am want to know is what's coming up next. We want to know how long it's expected to last, and we want to be prepared for what's happening after that. We can handle whatever it is, so long as we know what it is. The path of this disease holds no such comforts. It holds no promises or timelines. For some, the disease runs its course with breathtaking speed. For others, not so much.

The estimate I was given when my husband was diagnosed* has come and gone, and so it feels as though we are in unchartered territory. Keep on whistling, my darling.

*He was diagnosed at the beginning of April, 2010. So, we're ten years "from diagnosis." He's had the disease longer than that, of course.

The ID Card

Written February 22, 2020


My husband's driver's license expired shortly after he'd already been placed in a facility. I had made a failed attempt to get him an official identification card at the time ("No, he can't come in himself. He's in a memory care facility. Can't you use his existing picture?!"). I had sent in the required paperwork, but it had been returned with numerous things to correct and a request to refile. He hadn't been driving for several years, and he still had a valid passport. So I let it slide.

Being heavily stressed at the time, I had put the resultant paperwork "somewhere," and I didn't feel any real urgency to try it again right away. I figured we could always use his passport, if need be. But with his passport now expiring soon, it just didn't feel right to not follow through with the card. A person should have valid identification, though I'm not sure why exactly. He'd always had a driver's license for his entire adult life, and I supposed a Senior Citizen Identification Card could come in handy at some point. Besides, the situation was adding to my general nervousness. I decided to check this item off my list of things to do.

Miraculously, a month ago, I found the manila envelope containing fresh forms along with the rejected ones. I carefully completed them, taking into account all the things I'd done wrong the first time, and then I went to the Department of Motor Vehicles to get the job done. With some amount of trepidation, I submitted the forms to a nice young man who said everything looked like it was in order, and the card should arrive in a month or so. While this should have been comforting, it wasn't. That's what they had said the first time!

I waited for the mail to arrive. Had I made a mistake in the paperwork again? Would it be returned for refiling again? I berated myself for not taking care of business immediately the first time. And I waited.

Today, there was an envelope from the DMV in the mail. It wasn't a giant manila envelope; it was a No. 10. It didn't weigh much, but there was a hard item in the middle. Holding my breath, hoping for the best and preparing for the worst, I opened it.

His official ID has arrived, complete with the same beautiful picture of my handsome husband that was on his driver's license. I'm so relieved.

Coronavirus Update

Greetings, all,

As the world battles COVID-19, many of you have asked how this pandemic affects my ability to see my husband. So, here's the scoop, which is subject to change daily, or even hourly.

Surrounding counties have issued shelter-in-place orders; however, our county (his facility is in the same county) has not done that. Yet. We are still social distancing or self-isolating, for now. Being in the high-risk age group myself and not wanting to carry infection to the facility, though I have no reason to believe I've been exposed, I have been largely self-isolating and keeping my distance for some time, anyway. Just in case.

Last week, when all this was seemingly coming down around our heads like a runaway freight train, the facility began new check-in procedures for all "essential" visitors that start with a trip to the main office for health screening. If the screening is passed, a special badge is issued so the care workers know to admit the visitor to the resident areas. Essential visitors include medical personnel and immediate family of residents in hospice care. Visitors are not allowed for residents not in hospice care.

Since my husband is in hospice care, I am "allowed" to visit him but have chosen not to do so until several more days of self-isolation have passed. Is it hard? Yes, it is. I just received a phone call from the hospice nurse, who assured me that he's stable, and there's no reason for concern at this time. I'll take it.

Thank you all for your care, concern, and prayers for us. I can't tell you how much it means to me to know that you are sharing our journey. I send you virtual hugs from a safe distance.

Blessings,
C

UPDATE:  And, within minutes of posting, the county has now issued a shelter-at-home order.

Happy Anniversary -- 50 Years!

Our 50th wedding anniversary was February 28. It would have been February 29, but we didn't want to wait two years. It's a long story.

It was a bittersweet day. Part of me felt so happy and blessed to have made it to this milestone, and part of me was supremely sad. It would have been wonderful to have a big reception in a rented hall with catered food and a band and flowers galore and dancing and merrymaking, followed by a week in a romantic location, perhaps a recreation of our honeymoon so many years ago that feels like yesterday.

But, for obvious reasons, I had to scale back my hopes and dreams. So I got some balloons and table decorations and a couple of floral arrangements and a cake and some sparkling cider (alcohol not allowed). I dressed up and put on some heels and did my hair and took care with my makeup and dabbed a little perfume behind my ears, and off I went to the facility to celebrate with my man.

Don't stab me with the knife,
honey! Cutting the cake.

Unbeknownst to me, the activities director had arranged for tablecloths on the tables. Residents had been brought in from the other cottages, ready for cake and ice cream and "bubbly." Music was playing on the boombox. There was a special "head table" just for the two of us. There were toasts, and I made a little speech thanking everyone for joining us on our special day, and we all sang "Happy Anniversary."

Honestly, I don't think I would have been able to hold it together for a big party without my husband being truly able to participate. That's why I didn't plan one. It would have been overwhelming and melancholy. You know what, though? He was more alert than I've seen him so far this year. He knew something special was being celebrated, he was in a good mood, he loved his two pieces of cake, and he drank over half a bottle of sparkling cider.

The afternoon wasn't what I'd thought it would be; it was better. It was just right.

The Assessment

Back in October, I requested an assessment from a different hospice company. I was thinking about switching for a variety of reasons. I didn't end up doing that, because his current hospice company nurse started talking about discharging ("graduating") him from hospice at the end of his term. He apparently wasn't "going downhill fast enough" to stay on hospice, or so she said. Yes, I know. Isn't that a fine way to put things to a person's spouse?

Anyway, I was standing in the living room, chatting with the assessing company's nurse and case manager when someone came up behind me and bumped into me, as if on purpose to get my attention. Of course, I figured it was one of the residents, so I turned around with a half-smile on my face, prepared to be pleasant. I know. Most people don't have to "prepare" to be pleasant. Bear with me.

It wasn't just some other resident, though. It was my man, and he me to notice him. He stood very close to me, looked deep into my eyes, flirted with me, held me, kissed me. He was present in the moment, and I wasn't going to miss that! He was, in his own way, asking me to spend time with him. It was like he was asking for a date, and I sure wasn't going to say no. He knew me, and he liked me, and he wanted to be with me. Oh!

So, ignoring the hospice folks, I allowed him to pull me away, dance with me slowly to the music that was playing, and then walk with me, hand in hand, across the room. Tears of joy were leaking out of my eyes, and the case manager handed me some Kleenex. She was crying, too, and so was every other cognizant person in the place.

It was a beautiful moment, one of those gifts I talk about every once in a while. But it was months ago. Months of being told he's about to graduate, only to have him still be on hospice. It isn't as though he's getting better! This week, again, I was informed that his discharge was imminent and to prepare to transfer him back to home health ("home health" does not mean "at home" in this case. It means a nurse visits him in the care facility). I took the bull by the horns, contacted the VA, completed the home health evaluation, arranged for a hospital bed (because the bed he's in belongs to the hospice company), and had all my ducks in a row.

Yesterday, I got a call from the hospice nurse. They've decided he still qualifies, after all, and will review his case again in two months. And so it goes.

Yes I Do

December 27, 2019

On Christmas Day, our son and I went to visit my husband. We brought a package for him to open, and he seemed to be enjoying the feel of the glossy paper rather than the contents of the box. The thought occurred to me that I should bring gift-wrapped boxes for him to handle more often.

I don't know if it was the extra company, or the box, or my smiles, but my husband was much more responsive than he usually is. He even spoke a word here and there ("yes," "no," etc). This pleased our son enormously, and he remarked that his dad looked so much better than he had looked the last time he visited.

Today, though, my husband didn't say anything and didn't look at me when I spoke to him. He didn't seem to want to walk around. He did hold my hand tightly, put his head on my shoulder, and fall asleep for a few minutes as I sang to him softly. That's all within the "normal" range of things, generally speaking.

As I was about to leave, I showered him with kisses and sweet nothings as I tend to do, and I said (as always), "I love you." He whispered, "Yes, I do," and gently leaned his forehead against mine.

Friends, I know he loves me. I know, deep down, he appreciates all I'm doing to ensure his welfare and comfort and peace. I know, somewhere in there, he's grateful I'm taking care of all his affairs, and he doesn't have to worry about a thing. But hearing him say "Yes, I do," an actual, three-word sentence conveying much more meaning than the three words involved, well, I can't even describe what that did for me emotionally. Nor can I tell you how encouraging it was.

You might think I'm reading too much into it, and maybe I am. It's possible I'm grasping at straws, but I don't think so. And even if I am, so what?


December 30 - I often sing "I Love You," by The Zombies, to him. In retrospect, it occurred to me today that perhaps he was completing the lyric (I love you, I love you, I love you, yes, I do), though he hasn't done that before. But whether or not that's the case, his meaning was clear to me. I'll take it!