Happy Birthday to You

Wednesday, just about a week after "The Close Call," we celebrated my husband's 72nd birthday. I brought special "soft" treats for him to enjoy (puddings and Jell-o), and I called the kids and his siblings so each could sing "Happy Birthday" to him on speaker phone. He opened his eyes and looked surprised for the singing, but I'm not sure if that was because he recognized voices or if it was because the volume was up all the way when I put the phone next to his ear. I'd like to think he recognized voices, so I'll go with that.

Because of COVID-19, we weren't able to gather the family together for a party as we did last year. That would have been too many people at once, and social distancing protocols would have been impossible. Our son who lives closest to the facility was able to stop by for a visit with his beautiful bride and their two little boys to sing to Papa in person. Our kids are and have been wonderful. As my friend Howard would say, they are all above average! I felt blessed, and it was a good day with happy memories.

Yesterday (Thursday), my husband ate 10% of his breakfast, none of his lunch, and had very little by way of liquid before I got there. When I arrived after lunch, the Comeback Kid surprised me by being awake and seeming relatively alert, comparatively speaking, for hours. He even smiled at me and spoke, very softly, on two occasions ("yes" and "pretty good," the most he's said to me in I don't know how long). He had some Jell-o, and I was able to "push" liquids (about four small glasses) during my stay. I was thrilled that he also ate his whole dinner. Though the pureed food looks decidedly unappetizing, it doesn't taste too bad. It's the same meal that's served to everyone else. The color and consistency are definitely unappealing, however.

Today (Friday), he again didn't have breakfast or lunch or liquids. This time, even with my very best coaxing efforts, I wasn't able to get him to drink much or eat more than a fraction of his dinner, though he did have one small pudding. He just didn't want to wake up, even when the caregiver was washing his face and applying moisturizer. Even when I was patting his cheeks and showering him with kisses and asking him to wake up for me. My poor darling. One day you're up, and the next day you're down, it seems.

Who knows what tomorrow may bring? But if he doesn't eat, and if he doesn't drink, well, that won't be a good sign, eh?

Sleeping like a baby.
Happy Birthday, my darling.

The Close Call

On Monday, it looked for all the world as though my husband was preparing to take his long journey, to make his transition to the other side. He had a fever. He was in discomfort, apparently semi-conscious. He didn't eat. He didn't drink. His eyes were rolling back. It was breathtaking. Fine one day, totally not fine the next.

The hospice nurse took me aside, looked me in the eye, and led me to understand that it was time to prepare for the worst. Maybe not that day, but maybe the next, or the day after.

"Should I 'call in' the kids?" I asked, my brain both in a fog and running frantically around in circles at the same time. The short answer:  "Yes."

"In your professional opinion, what are we looking at?" I managed to whisper as the room spun around and I tried frantically to catch my breath. I needed to hear her words again. More slowly this time.

"If he does not have a turnaround, a day or two. If he eats and drinks a little, then a bit longer. Days, not weeks. Or weeks, not months."

I felt so helpless as I sat by his side and held his hand, stroked his hair, kissed his cheek. So devastated. So heartbroken. So defeated. So unprepared. Then, overnight, he "rallied." No fever. Eating. Drinking. A respite. An extension. A sigh of relief. Even some engagement with our kids and with me. One more day.

Unfortunately, though, I had to deal with another communication breakdown. Happily, my head was clear enough to see that my husband was displaying signs of discomfort (I'm sure you remember that he is non-verbal and cannot say that he needs something), and I realized that no pain medication had been administered during my all-day visit. A brief consultation with the medical technician revealed that the medication had been delivered; however, no order had been received from the doctor. The medication cannot be administered without the doctor's order, even if it is right there in the med tech's office.

"Maybe they'll send it tomorrow or the next day." What?! I had a fit. Oh, no. This was not gonna happen. Not after the last fiasco. I grabbed my cell phone and called the hospice team coordinator myself, passing my cell phone around to all interested parties to make sure communication was clear to all. I was fit to be tied. This is not the time for hospice to drop the ball on my husband again!

Everyone delivered sincere, heartfelt, deep apologies over and over. "Great. Thank you for that, but what I want is for you to fix this. And I want it fixed right now! We are talking about an end-of-life situation, and I want my husband to be comfortable today. Do you understand?!"

In a matter of minutes, an end-around solution had been proposed and adopted, much to my relief and, I'm sure, everyone else's. I am not a squeaky-wheel-type person, but I can be. I don't like to blow up, either. But, apparently, I can do it. Like Vesuvius. A bedside nurse was assigned to stay with him overnight to make sure the medication was appropriate, effective, and being properly administered. I breathed a temporary sigh of relief.

Here we are, a couple of days later. My husband has started "squirreling" his food (pocketing it in his cheeks), indicating a further decline from his pre-Monday baseline. Since dinner yesterday, his food is being served as a puree, and his liquids are thickened. This theoretically helps to prevent aspiration, but I noticed at dinner tonight that it isn't completely effective. He is choking a little, and he's having some trouble clearing his passages with a cough. He's trying to blow his food and drink out instead of swallowing it, as though he can't remember how to swallow. Or perhaps he just doesn't want to. Where just a few days ago he was "eating 100%," that hasn't happened except on Tuesday.

There's no way to know how many more roller-coaster rides there will be on this journey. There may be other close calls before he takes his last breath here on earth and makes his transition to paradise. I thought I was prepared, but here's what I found out:  You might think you're ready, but you're not and never can be. Not really. When the end comes, it will be a sudden, crushing, and devastating loss. It always is, even if the process takes a while. And then there will be no more days together until eternity, when there will be endless glorious days in the presence of the Lord. And that will be...heavenly.

Communication Breakdown

My husband has been completely non-ambulatory for about two months now. What that means is that he can no longer locomote independently at all. There has been a definite slip since the first of the year and especially since his last big seizure at the beginning of March. Whereas just a few months ago he was still walking slowly by himself, sitting down gingerly by himself, and standing up cautiously by himself with perhaps just a little help and encouragement, now he is either on his bed or in his wheelchair.

If he is not eating, he is mostly sleeping. Sometimes, he doesn't even open his eyes while eating. He chews and swallows slowly. It can take more than half an hour to feed him his meal. Every once in a while, he reaches up for something that isn't there, and then he puts his arm back down. His legs seem stiff as he tries to move them to a more comfortable position. He is unable to move from his wheelchair to his bed, and he seems anxious and even frightened when his caregivers try to move him or reposition him to take care of his personal needs.

This lack of movement, combined with side effects from certain medications, has resulted in difficulty with bowel movements (BMs). Constipation is a constant problem in these situations, and he is on daily medications to ease that. If it has been three days since the last BM, he is to be given a dose of milk of magnesia (MOM) that evening. If there has been no progress, he is supposed to get another dose in the morning. If there is no progress that afternoon, a suppository is to be administered and hospice is to be notified (Day 4). If there is still no progress by the next morning, an enema is in order (Day 5). I'm sorry if this is too much information for you, but please bear with me.

Last Friday, I was notified by the hospice nurse that it had been five days since his last BM. MOM had been started that day (two days late), and a suppository would be administered by the medical technician the next day if there had been no movement. I was there the next day (Saturday, Day 6) to make sure the suppository was administered, which it was. Apparently there hadn't been any at the facility, and it had to be ordered. I requested a phone call to update me on the situation. I received no phone call, so I wrongly assumed that everything was fine. No news is good news, right? Wrong.

The next day (Sunday, Day 7), I called the facility twice. The caregivers were no doubt very busy. The COVID situation has created lots of extra work. So the phone rang and rang, then went to voicemail. I requested a call back but still thought everything must be okay, or they would have called me. I called again on Monday (Day 8) and was routed to the nurse. At this point, it became clear to everyone that the ball had been dropped somewhere and that an enema kit needed to be ordered immediately. Whatever! Just get my husband the relief he needs! I was beside myself.

The enema kit arrived on Tuesday (Day 9). It was administered by the hospice nurse, and finally my husband's bowel was cleared. What a relief! It was obvious he was feeling much more comfortable. Well, of course he was! Can you imagine?

I have spoken to the facility administrator in person and have called on the hospice team to see what can be done to clarify and reinforce the chain of command to prevent this from scenario from repeating itself in the future. This kind of communication breakdown cannot happen again, to us or to anyone else.

I try very hard to not be that person. You know, the one who complains all the time, is always on the phone making demands, and makes life miserable for people who are just trying to do their jobs to the best of their ability. The one who elicits knowing looks and rolling eyeballs. But it's been a long haul, my patience has worn thin, I am exhausted, and this is my husband we're talking about. We have traveled this road for over a decade. I refuse to let him fall through the cracks, especially now that he is completely helpless.

Perhaps, in relaying the facts of the situation to you, I've failed to sufficiently emphasize its potentially dire consequences. Here's the thing:  People die from complications of bowel obstructions and fecal impactions. It's important to know what's going on, and it's important to keep on top of situations so they don't get out of control.

What happens to people who have no advocate?

Our 50th wedding anniversary
February 28, 2020
Still able to locomote, sit in a regular chair,
drink from a glass without a straw.

Update:  As I've mentioned on several previous occasions, this facility is really good, and its employees are caring and compassionate. They want to do things right, and they want families to know their loved ones are in good hands. It looks as though my concerns have been addressed, there's a plan in place, and so far I'm being kept informed. I am grateful.

Dark Shadows

At least I can see him!

Being pretty much stuck in the house due to the COVID-19 shelter-in-place orders leaves lots of time for thinking. Perhaps too much. As my husband's condition has continued to deteriorate in what seems to me to be an accelerated manner as he slips away from me inexorably, I find that I am spending an unhealthy amount of time in morose thought, self-flagellating over rocks I must have left unturned. Things I wish I'd done differently or not done at all. Things I've said that should have been left unsaid. Things I've not said that I now find myself repeating to him over and over again, hoping to make up for all those lost opportunities. Sometimes, I do get the impression that my words and actions are finding their target in his heart. I certainly hope so, anyway.

One of the thoughts that torments me to the point of sobbing is wondering just how aware he might be of his situation, with no way of escaping or expressing his thoughts and fears. Is he content? Is he at peace? Or is he struggling to be understood, living a nightmare in the prison that is his failing mind and body? Is it torture for him the way it is for me? I really hope not. I really hope his thoughts are fleeting and forgotten before they can be confusing. And I really hope he isn't in pain. Pain on top of all this would be adding insult to injury in a way I might not be able to handle emotionally.

The end of March and beginning of April saw four not-so-great anniversaries come and go for us, all in just over a week. Four anniversaries of loss and heartache and bitter pills, including my husband's diagnosis, his placement, and my mother's death. No wonder the past few weeks have been especially difficult. No wonder I felt as though I had been thrown against a wall and could barely breath under the crushing heaviness of it all.

It occurs to me that those same four painful anniversaries will revisit us every year for the rest of our days. They'll revisit me, anyway. Heaven help me.

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.