Stage 8

Stage 7 is considered the "final stage" of Alzheimer's; and, for the person suffering from the illness, it is. The completion of Stage 7 is the end of the marathon for the patient, the passing through the veil that separates mortality from eternal life in the presence of the Lord. For my husband, the years of unkind and relentless suffering have come to an end. He is himself again, only better. Healed. Whole. But the suffering is not over for me. I'm in what's known as "Stage 8" of Alzheimer's, the grief and limbo that follows the death of the loved one. 

When we were united in marriage, we started becoming "one," two halves of a whole. It was a process. As time went on, we became more and more "one" rather than two wholes living life together. We learned to understand, or at least tolerate, each other's needs and wants and quirks. We were never joined at the hip, and we gave each other space to pursue interests. He did his things. I did my things. We did our things together. We had hit our stride (even though, to be fair, we still drove each other crazy at times) and were looking forward to retiring in a few years, traveling, growing old together. Life had taken on a golden glow. It was satisfying.

I remember driving down the freeway on a beautiful, sunny day, alone with my thoughts, admiring the scenery. I breathed in deeply, smiled, and said to myself, "Life is so good!" Immediately, I felt a sense of foreboding. It was strange. I should have thrown a little salt over my shoulder or something. But I digress, as I have a tendency to do.

Then the horror of Alzheimer's struck, a slap in the face out of nowhere. It was a difficult, painful, arduous trial by fire for both of us. And yet, through it all, we somehow became closer than we had ever been. Our bond was tighter. Our connection was stronger. My love for him was powerfully focused in a whole new way. I willed for him to be well, to live, with all my being, all the while knowing he might not. And he didn't. It's been almost six months since he left me. My heart yearns for him. It's so hard to let him go.

I am alone with my thoughts. They wander. I stare out the kitchen window at my neglected garden. I ponder the electronic display that cycles through our pictures, giving me glimpses of happier times (and also sad times) when my Beloved was here, alive, smiling at me. I wonder what I am going to do with whatever time I have left before I join him on the other side. Who am I now, in this up-and-down, roller-coaster-ride called grief? Sometimes I care about these things very much, and other times I really don't care at all. I am in a state of suspended animation, in limbo. It's a day-by-day, moment-by-moment journey into the unfathomable unknown.

I'm not the same person I was when we started down this Alzheimer's journey. How can I be? Half of me has been painfully, inexorably ripped away in one of the most torturous and cruel ways possible. There's a gaping, bleeding wound where my other half used to be that is slowly, slowly, perhaps a bit too optimistically, trying to start healing. 

It takes a while for gaping wounds to heal, though. Sometimes, it takes a long while. A scab tries to form but is ripped off repeatedly by painful memories, what ifs, and I wonders. The scar that will eventually replace the scab will, I'm told, be stronger than the surrounding area. It will be a reminder that there has been a wound but will be a sign of healing, renewed strength, and survival. It will be a sign that I am going to make it through and that a light will appear at the end of the tunnel. 

Here we are, at the end of this terrible annus horribilis. As we turn the page and start a new chapter, I do wish all of you a very happy new year, full of blessings. Good health, much love, and a prosperous life to you in 2021!

This Is Real

Our son and I went to decorate my husband's grave with a Christmas wreath today as part of the Wreath Project at the Sacramento Valley National Cemetery. The graves will all receive this honor next week, but families are invited to participate early; and, for obvious reasons, we wanted to be the ones to decorate this particular grave.

If you have never been to a national cemetery, driving through the gate, down the flag-lined lane, past rows and rows of identical headstones meticulously placed just so, the thick grass kept very green and manicured with military precision, is a breathtaking experience. Here, each grave is maintained beautifully as a matter of honor. It makes an impression.

It is a privilege to visit my husband's grave, knowing there won't be weeds covering his grave marker as there so heartbreakingly often are at the cemetery where my parents are buried, where the barest decent minimum is done. But I digress again.

As our son and I stepped out of our vehicle, walked across the grass to my husband's grave, and placed our wreath, I was again overwhelmed by the enormity of the great chasm of separation that exists between my husband and me now. Or maybe it's just a thin veil. Either way, he's gone, and I'm not. Not yet, anyhow. 

It slapped me in the face once more, as it always does when I'm there looking at his headstone, that this is real. Really real. Even though I still half expect him to be watching television downstairs when I go down there, or almost hear him coming through the door announcing his presence with an, "I'm home!" Even though I can nearly sense his presence sometimes, or maybe that's just me wishing I could.

I guess I still can't believe he's gone. It hits me like a ton of bricks every time. My heart breaks. Again. And I cry. Again. Still. How I miss him and wish things were different. But they aren't, and perhaps I'll learn to accept that. Someday.

If you would like to help honor the veterans who are buried at this National Cemetery, donations are accepted year-round for this "home grown" project. There are over 40,000 veterans buried in this cemetery, which was opened in 2006. Donation instructions here.

The Ultimate Promotion

There hasn't been much but sadness in my blog in the lead-up to and wake of my husband's passing, and understandably so. My heart is often heavy, my eyes well with tears, I stare at the digital display of pictures of him, of us together, that's always going. So when something good and uplifting happens, it's important to share that, too, along with less-happy moments. Here's why I woke up with a big smile on my face the other day.

I dreamed about my husband, but it wasn't one of the stress- or grief-laden dreams I've been having at all; it was a good dream. A great dream, even. It was a dream of normal things during ordinary times, when we were in our prime.

He had come home from work looking excited and happy, a twinkle in his eye as he approached the desk where I was editing a news article submitted by one of his friends. With a somewhat shy little grin on his much-too-handsome face, he handed me a letter to read. It was a very long letter, on professional stationery, from his boss. As I began reading, my beloved was virtually bursting with pride, anticipating my reaction.

In the letter, he was being heartily congratulated on the quality of his work, his leadership abilities, his contribution to the team that was so fond of him and respected him and his ethic so highly. His potential was being recognized, and he was being promoted and receiving an increase in salary (always a good thing). And then there was a bit about how it was hoped that he would enjoy his new sedan.

"What new sedan? They gave you a car?" I couldn't believe it. This was superb news, indeed!

"Well, it's actually a car bonus," he replied modestly. He was so happy and proud. His beautiful, vibrant, blue eyes were filled with excitement, with a hint of hesitation and doubt, as they had a tendency to be. It was as if he couldn't believe his great good luck. I knew he richly deserved this promotion and all that came with it.

So I asked him what car he was thinking of purchasing, and he replied that he wanted a Ford. A Ford Thunderbird SC. Convertible. Those of you who know all about cars are probably looking up that make and model right now. Sure enough, we were in our prime when the last one was made.

As my mind is wont to do, it immediately started calculating the payment; which, for dream purposes, was $450 a month. Go ahead and laugh now. Yes, indeed, this was excellent news. Well, there was a tiny bit of doubt about the tax consequences, but not a word escaped my lips that wasn't full of pride and congratulation on his achievement. I was simply thrilled for him. Apparently, in my dreams, I have learned something valuable about thinking before speaking. 

Friends, what a richly symbolic dream! My husband has received the Ultimate Promotion. He who began a good work in him has been faithful to complete it and greeted him with the words, "Well done, good and faithful servant." In the presence of the Lord, my beloved is more alive than he has ever been. This is my confidence, my joy, my happiness, and my comfort on this beautiful, sunny Sunday afternoon in our little town by the water, where we raised our family and hoped to grow old together. It is well with my soul.

Dreams

Dear readers,

I'm sure you'll be surprised to know that I've had very few dreams of my late husband. To be fair, I've had very few dreams that I remember at all, so maybe I've had more dreams of him than I realize. 

I wish very much that I would dream of earlier, healthier days, or even later days but healthy, or perhaps have visions of him enjoying life in Heaven; however, that just hasn't been the case so far. Perhaps that is because the disease process took a long time and stole such a large chunk of our lives.

Early this morning, I dreamed that he was still at home, and I was caregiving. Our daughter was here with us, helping me care for him as she did regularly, God bless her! I was being patient, understanding, gentle, kind. But he was angry, confused, agitated, mean, sundowning. Because this was a dream, I was able to see the situation through the eyes of retrospect and remained calm; whereas, in real life, the situation would have been very upsetting to me. 

He turned and raged at our daughter, and I could see how incredibly hurt she was as she turned away from him and muttered, "Go to h*ll." Those words felt like an icy knife to my heart. I know that she would never, ever say such a thing in reality, but I can completely understand why she might have wanted to sometimes. It was a very difficult thing for the children to go through, too, and they each had to deal with it in their own way.

Needless to say, I awoke in tears. Obviously, the stress and trauma of the caregiving years is still being processed in my subconscious, and I am working out the stages of grief. I go back and forth with those, as most people do, one moment accepting, the next moment disbelieving, or angry, then accepting again, then regretting something, missing him, crying. It's one thing to know he's gone; it's another to really believe it. One day, I will have a beautiful dream of camping with my beloved beside a quiet lake in the mountains, gazing at the night sky full of stars together.

But, apparently, not yet.

- Me

The Fog

It's now been a month since my husband crossed the Great Divide between the land of the living and the arms of God. I knew it was coming, I thought I was prepared, I expected it at any moment, and all that. But still, when it happened, it was a complete surprise. My knees buckled as the nurse met me at the door to give me the news. I thought I was going to faint. It was like being caught in the middle of a breath. Time stopped. The Earth stood still. Everything seemed far away. Something escaped my lips. A wail? It felt like a bad dream, but it was real. Too real. Devastatingly real. 

Though I knew that in the blink of an eye he had transitioned from this life to the Next, the weight of a ton of bricks landed on me, crushing me. I had been praying for his healing and restoration, and now he was completely healed, but not in the way I'd hoped. He was gone. Gone gone. He wasn't coming back. And I was left behind. A woeful, overwhelmingly bereaved, blubbering mess. I could almost feel myself shrinking. The shock to my system was wholly unexpected. 

I had come prepared to stay, not expecting that he would leave so quickly. I had a cot, a pillow, my overnight bag, the ukulele. I had planned to encourage him, to pray with him, to play and sing for him. And so, our son standing next to me, I took out my music, pulled up a chair, took a deep breath, and selected a few of my husband's favorite tunes. My singing and playing were worse than usual, but I'm sure nobody minded.

The fog that settled over me that day, deepening daily, was all enveloping, saturating. I could not think. It was an effort to breathe. I wasn't even sure I wanted to. My heart hurt so much, I thought it would surely stop beating. I sort of hoped it would. I had already lost my father, then my mother. But those losses didn't even come close to comparing to this whole new level of excruciating pain. Of guilt. Of anger. Of confusion. Had there been a funeral pyre, I might have thrown myself on it. All I could see ahead of me was a yawning chasm of emptiness. Family and friends surrounded me in the most loving way, for which I am grateful. I'm not sure how I could have made arrangements without their help and prayers.

Because of COVID restrictions, we were allowed only a very private graveside service. It took place two weeks after his death. Though it was small, it was very beautiful and personal and comforting. When the children and I returned to the cemetery the next day to place flowers on the grave, I felt oddly at peace, knowing my beloved was at rest. I know I will see him again, but that doesn't take away the terrible sadness, the horrible feeling that half of me is gone, the gaping wound in the core of my being. I will have to walk through the crippling grief, and I'm told there will eventually be more good days than bad days. 

In the meantime, I have begun the necessary work that follows a death:  contacting various agencies and financial institutions, filing paperwork, making sure nothing falls through the cracks. The first two are routine. The third, well, I'm hoping for the best through the fog. I thought it was starting to lift last week, but now I realize I was wrong about that.

Thank you, dear readers, for your words of encouragement and support over the years, and especially for your prayers both during my husband's illness and continuing through the painful days ahead. Some of you have asked that I continue this diary through what you're calling my "healing process." I'm assuming that I will, at some point, heal. At least, that's my hope, because that's what people do. I just can't really envision that right now.

The Last Note

July 14, 2020

I got "the call" this morning. You know the one. The one you keep expecting but hope never arrives. I was to come right away, if possible. I rushed to my car and sped down the road (apologies to the highway patrol. Thank you for not pulling me over). I wanted to be there to hold his hand, to whisper sweet nothings in his ear, to comfort him. But he decided to go quickly, before I could get there. Yes, that was devastating, especially since I'd had a camp cot, pillow, and weekender in the trunk of my car for over a month, expecting (obviously) to be with him for however long it took, at the drop of a hat.

But here's the cool thing:  The music therapist was having a video call with him (you'll remember how he loved music therapy) and was playing and singing Paul Simon's The 59th Street Bridge Song:

Slow down, you move too fast
You got to make the morning last
Just kicking down the cobblestones
Looking for fun and feelin' groovy
Ba da-da da-da da-da, feelin' groovy...

And here's the other cool thing:  As she was singing "feelin' groovy," he and Jesus decided it was time for him to go Home. He passed from this life to the next,  just like that. He fell asleep here, and he woke up there (or, for those who believe a bit differently, he will wake up there). And now he's healed. He's whole. He's...feelin' groovy.

Rest in perfect Peace, my love. There can never be another you. I'll miss you until I see you again. The time may seem long for me, but it will be short, really. And then we will be together in the presence of the Lord, and time will be infinite. Eternal.

The Lord, the Psalmist’s Shepherd.
A Psalm of David.
(New International Version)

23 The Lord is my shepherd,
I [a]shall not want.
2 He makes me lie down in green pastures;
He leads me beside [b]quiet waters.
3 He restores my soul;
He guides me in the [c]paths of righteousness
For His name’s sake.
4 Even though I walk through the [d]valley of the shadow of death,
I fear no [e]evil, for You are with me;
Your rod and Your staff, they comfort me.
5 You prepare a table before me in the presence of my enemies;
You [f]have anointed my head with oil;
My cup overflows.
6 [g]Surely goodness and lovingkindness will follow me all the days of my life,
And I will [h]dwell in the house of the Lord [i]forever.

Footnotes
Psalm 23:1 Or do
Psalm 23:2 Lit waters of rest
Psalm 23:3 Lit tracks
Psalm 23:4 Or valley of deep darkness
Psalm 23:4 Or harm
Psalm 23:5 Or anoint
Psalm 23:6 Or Only
Psalm 23:6 Another reading is return to
Psalm 23:6 Lit for length of days

From Puree to Liquid

July 13, 2020

It's been about a month and a half since my husband's regular diet was replaced with pureed foods and thickened beverages. He's been drinking Ensure nutritional supplement, also, since his dramatic weight loss began.

The past couple of weeks, he's been having more and more trouble swallowing even the pureed foods. He seems to hold the spoonful in his mouth for a long time, finally chews it, and eventually either swallows it, spits it out, or chokes on it. For the past week, he has been eating and drinking very little and even "refusing" to eat at all, meaning he doesn't open his mouth or doesn't swallow the first spoonful.

Yesterday, one of the caregivers experimented with thickening the Ensure with just enough of the pureed food to make it the same consistency as the thickened beverage he usually consumes, eventually. He was successful in patiently spoon feeding a glassful of this concoction to my husband for lunch and dinner. He is attempting to do the same today.

I know that my husband will eventually forget how to swallow (or will not want to. Who knows if it's forgetting or refusing?). It looks as though that may be sooner rather than later. In the meantime, I've contacted the hospice nurse to see about changing his food "order" from a pureed diet to a liquified diet. It's worth a try.

Play a Song for Me

June 29, 2020

I've been trying to catch my husband awake, going to the facility to see him at all different times of day. Today, I decided to go later in the afternoon. He woke up for me! Yay! I gave him a facial, massaged his feet, fed him his dinner, played music for him. 

Our son happened to call me while I was there, so I put him on speaker phone right next to my husband's ear. The Hubster seemed to respond to that for about five seconds and even sort of smiled. It was very heartwarming, another memory to tuck away. 

After dinner, the caregivers came in and repositioned my husband, as I had mentioned that he seemed rather uncomfortable. When they left the room, I grabbed my ukulele and sat in the chair next to his bed. He went right to sleep as I played some soft, slow chords for him. He generally falls asleep after eating, so I don't think it was entirely to escape my playing.

As I was leaving, one of the caregivers thanked me for the beautiful music. What? I thought I was playing and singing super softly; but, apparently, I could be heard in the dining area, and a couple of the residents were really enjoying it. Golly. It made me feel so good to think I might have brought them a little joy. 

I'm reminded that the other day, the wife of one of the residents was visiting him through the window, and she saw me arrive with my music case. She gave me a big smile, telling me her husband had told her about me and looked forward to listening to my playing. She asked me to make sure he could hear me. I took her request with a grain of salt and assumed she was confusing me with the music therapist. But I guess she must have known what she was talking about, since it turns out he's one of the ones who was in the dining area listening to the tunes today. Who knew?!

End of Life

June 30, 2020

I have noticed that when the hospice nurse calls me with a report these days, she chats with me for a while and manages to inject "end of life" into the conversation somewhere. "When patients near the end of life..." "As the end of life approaches..." "This can be expected at end of life..." You'd almost think she was trying to tell me something.

A month ago, we were sure he was about to cross over to the other side. But he surprised us all and is still here with us, instead of there with Him. It would appear that it isn't yet his time, though each day brings us inexorably closer to the temporary separation that will feel so permanent, but isn't.

I think the nurse is trying to prepare me for that day, to caution me that it is probably coming sooner rather than later, to make sure I understand that it's an upcoming reality. Whether I like it or not, and whether I'm ready or not, in case I've been ignoring the signs or am in denial. I'm not and haven't been in denial (as you well know). Not lately, anyway.

At least, I don't think so. We shall see, when the time comes.

Sorry, Not Sorry

July 1, 2020

About a month ago, I ordered a bunch of hospital gowns for my husband. He was in bed all the time, t-shirts bunched up under his arms and up his back, and it seemed logical to get him something practical to wear in a hospital bed. So I did. Residents who are still up and about are encouraged to wear "regular clothing," but I didn't see the point in making him more uncomfortable than he already was. His clothes were hanging in the closet and hadn't been touched since the gowns arrived.

His right hand, in various degrees of swollenness since the end of April (when it was bright purple for no explicable reason), has been very painful and curled up since the fungal infection I mentioned at the beginning of June. Moving it at all, even to gently insert a rolled-up washcloth to absorb the moisture, causes him to wince and moan, and moving his arm hurts him even more.

Today, inexpicably, he was wearing a pull-over shirt when I arrived. There must have been a new staff member on duty who didn't understand the situation. Knowing the pain it causes him when I gently slide the half-sleeve of the hospital gown up his arm, I could only imagine the agony of having his arm pulled up to get that shirt on. I was appalled and paled at the thought.

I checked his closet, and there were half a dozen hospital gowns in there, waiting to be used. I went to the first available caregiver and asked why my husband wasn't wearing one of them. She had just come on duty and was horrified. She and another caregiver did what they could to carefully remove the shirt, but my husband let out a loud wail. He was in excruciating pain, the look of anguish on his face exactly what you might expect to see on a victim of torture.

Oh, dear reader. I couldn't bear it. My heart broke into a million jagged pieces, and I thought I might faint. Instead, I cried in front of everybody. Sorry, not sorry. I never expected that the end stage of this horrible, vicious disease would result in this level of pain in spite of medication.

Immediately after the carers left the room, I marched to his closet and removed his clothing, hangers and all, and packed everything up in his spare laundry basket to take home. If he needs it, I'll be happy to take it back. But, in the meantime, there's no way I'm letting that happen to him again. Not if I can help it.

No, it did not occur to me to take his clothes home before. Yes, I talked to hospice regarding his pain management. And, yes, I did march straight to the office to chat with the facility manager. And I cried again. Sorry, not sorry.

I'm Scared

Imagine yourself on your back in a hospital bed, the foot and head of the bed raised a bit to encourage proper circulation, unable to change position, unable to lift your head up, unable to hold onto the side rails. Your beloved is sitting next to you, and you're holding your beloved's hand, unable to squeeze it hard like you used to, unable to express yourself, unable to even keep your eyes open.

Suddenly, two people in uniforms enter your room, saying it's time to change you. Your beloved moves to the side of the room as these two people roll your bed away from the wall, flanking it, raising it up higher, lowering the feet and head. It feels as though you are being jerked around, even though they are being gentle and friendly. You hold onto your blanket desperately as they try to uncover you, to change you. What is happening? You are anxious. Using your bed pad, they turn you to one side, then the other, as they efficiently remove your soiled, disposable briefs and fasten the tabs on clean ones. You are indignant and complain the only way you can, by wailing.

Now, they say they are going to move you up in your bed. You are tall, and your feet are touching the footboard. They need to reposition you. They are standing over you, very close. They take hold of your bed pad and count one, two, three. You feel helpless as you are suddenly projected backwards, your head landing just short of the headboard. You whispered something towards the ceiling in mid-motion, your voice small, weak, raspy:  "I'm scared."

Your beloved hears this again as the carer repeats it. It's devastating, demoralizing. A punch in the heart. These are words you have never, ever voiced out loud, probably, to anyone. And for you to say them now, when you cannot really speak, makes them doubly tragic. Especially heartbreaking.

But of course you are scared, my darling. Anyone would be afraid in such a helpless position. When the carers come in, you don't know what they're going to do to you. When they turn you to the side, you don't know that you aren't going to keep going over the edge. When they move you up in your bed, it feels as though you are flying through the air backwards, and you have no way to break the fall you're expecting. You're completely at their mercy.

They leave the room, and I sit next to you again to calm you, holding your hand, stroking your cheek, your hair, whispering in your ear, "Don't be afraid, my darling. You are safe. I love you. God loves you. There is nothing to fear. Everything is going to be all right."

And it will. But not yet.

The Pack Rat

Here's one of the unpublished posts I found. It's dated February 23, 2020.
It's springtime in California. For the first time in years, I have a powerful dose of spring cleaning urge. And so, like a maniac, I started trying to organize the garage today instead of beginning with something easy. Along with the "man cave," one of the other rooms, several of the closets, and a storage unit, the garage (together with the crawl space storage under the house) is one of the husband-only domains in our home. It's a daunting task, but I won't be able to organize the rest of the house without somewhere to stage and sort all the things he's collected over the years.

Mind you, I'm not planning to plow through "his stuff" with abandon. That just doesn't seem right, somehow. Not yet, anyhow. It just feels as though it might be time to start thinking about culling the herd, so to speak. But I've discovered that it's going to be a monumental undertaking. It turns out there's a lot. A whole lot.

I knew about the hoarding of CDs, DVDs, and sports cards. Those were collections, a hobby, I told myself. He spent hours organizing and filing and cataloging his collections. And yet they are in total disarray, some here, some there, and I'm still finding more. Even in the garage. And under the house.

He has tool chests, yet there are tools absolutely everywhere. Decaying, rusting bits and bobs. Tiny containers of something or other having to do with nuts and bolts and nails and screws and things. There are car parts, but are they old parts that are broken and have been replaced with new ones, or are they new ones? Am I meant to figure that out somehow, or should they just be discarded? He seems to have purchased new cleaners and waxes and motor oils and things instead of using up the ones he already had. And they're everywhere. Every shelf (and there are many) is a fresh challenge for which I am wearing leather utility gloves, just in case.

Who knows, really, how long this disease has been attacking my husband? Was he unable to find what he was looking for, or had he forgotten what he had and where he had placed things? It must have been so incredibly frustrating for him, poor man. Imagine using an item and not remembering where it belongs or even that you have it. Imagine coming home with a new container of something or other you've run out of and need for a project, only to find there are already half a dozen half-empty ones. Imagine never throwing anything away for fear of having thrown away the only one you would ever have. Imagine not letting anyone help you, because you don't want them to know how bad things are.

Imagine having six copies of something at your office, but not being able to find a single one, even though they're right there in front of you. This is what I discovered when I went to his workplace to help him with a project years ago, before he lost his job, when he was so exhausted and working incredibly long hours just to keep his head above water.The year I became his unofficial administrative assistant, I thought he was burning out (as they say) from his high-stress job. He couldn't seem to get his act together. It makes me weep to realize that, at the time, I didn't understand what was happening to him.

What a nightmare this disease is, not only for the ones who have it, but also for those closest to them. It is relentless. It is cruel. But all disease is, to some degree or other. It's just that this is the one we're dealing with at the moment, and it ain't pretty. Someday, I hope I'll be able to look back and realize I did the best I could for the one I love. But right now, I am thinking I may have embarked on this project a bit too soon.

What a Difference a Day Makes

June 12

I finally got some sleep last night, so I was in a pretty good mood when I walked into my awake husband's room and stood at the foot of the bed, greeting him with a big smile. Of course, it occurred to me by the look in his eyes that he was surely wondering who was behind the mask!

Just then, the caregiver came in with his lunch. After first closing his mouth firmly and turning his head away (more interaction and communication, albeit silent, than has been usual of late), he deigned to try a spoonful of whatever the beige pureed matter was. He must have liked it, because he soon swallowed and opened his mouth for another spoonful. And another.

The atmosphere in the room was upbeat as I chatted with the caregiver, we laughed about something or other, we made teasing remarks to my husband, and he continued eating without falling asleep between bites. Most unusual.

By then, being social distanced from the caregiver, I had lowered my mask for my husband so he could see my face grinning at him. He responded with a real smile and a widening of his eyes and a pursing of his lips. And then he reached towards me, hand extended to hold mine. Well, dear reader! Was I a happy camper? Yes, indeed! He fell asleep soon after finishing his meal, my hand firmly clasped in his as I sat on the edge of his bed.

And so, you see, even now God has apparently decided to surprise me with precious moments, unexpected gifts, of joy and hope. He knows just what I need. He has been, is, and will be so good, always good.

The Comeback Kid

Weird things are happening with my husband's body now that he's been completely bedridden for a while. His legs and feet are stiff. He can bend his knees, but not on request. He can't really use his hands much, and the fingers of his right hand are swollen, tight together, curled under, and unable to be straightened without causing him obvious pain in spite of the routine administering of pain medication. His hands and forearms, uncovered, are sweaty and hot. Meanwhile, his feet, covered with a sheet and light blanket, are ice cold.

The hospital bed is adjusted to just the right angles so his legs and head are elevated. He is turned regularly and ever so carefully to avoid bed sores. Pillows are placed here and there to relieve pressure between his bony knees, under his legs, along his side. He is changed regularly so he will be clean and dry and as comfortable as possible. The hospital gowns I purchased for him are being put to good use.

In spite of the attentive care he is receiving, a foul-smelling fungal infection has developed between the fingers and on the palm of his strictured right hand. Medicinal powders are being applied religiously to clear that up, and a dry washcloth is rolled up and delicately inserted in the curve of his fingers and palm to absorb moisture. He neither holds it nor releases it. It's just there, unless he pulls at it with his left hand. He sometimes raises his left arm as if reaching for something, but not his right arm.

The hospice nurse visits more regularly, twice a week instead of once. But, increasingly, the on-call nurse is summoned to the facility to address something or other that has popped up. He's been eating most of his meals for the past couple of days, and drinking. He was awake for a while today. When his eyes turned in my direction, it was like he wasn't seeing me except once or twice, when he seemed to be wondering who I was.

Seeing him like this daily is very difficult physically and emotionally. The nurse gave me a flyer yesterday. It's about what to expect as the end of life approaches. Nobody is encouraging me to think this final process will be lengthy, but it's possible. Anything is possible. But that doesn't mean it's likely. My consolation is that my husband is more than likely unaware. He is slumbering, being looked after, and showered with love. And when this is over, he will be healed and whole and in the presence of the Lord. Soon, possibly. But not yet. He's still the Comeback Kid.

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.

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.