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!

Merry Christmas

12/22/19

This will be the second Christmas without my husband at home, and so far it's harder than the first one. I had to force myself to even bake a few cookies, and I'm very grateful to our son and daughter-in-law, who will be hosting Christmas dinner at their house. I won't have to cook, which is a good thing. Because I don't feel like cooking.

I don't feel like cooking.
I don't feel like cleaning.
I don't feel like wrapping gifts.
I don't feel like decorating.

I don't even feel like attending Christmas Eve service, which is usually something I really look forward to. But I'll do it anyhow, because I promised a friend I would take her with me.

I have a Big Birthday coming up next month, and I don't feel like celebrating. Our 50th wedding anniversary is coming up the month after that. It was supposed to have been a big reception at the Vet's Hall with all our friends and family, followed by a special trip with my One and Only. But I guess now it'll just be a visit where I bring a steak dinner, some balloons, and a cake to share with the other residents at the facility.

Yes, I'm having a pity party. It's my pity party, and I'll sulk and pout and complain if I want to. Cause that, my friends, is what I do feel like doing.

Merry Christmas to you and yours.

The SNAFU

December 22, 2019

It seems as though every time I try to go out of town for a few days of rest and recuperation, something stress-inducing happens at my husband's facility. Here's the latest one. Keep in mind, this is a terrific place; however, stuff happens. It happens everywhere. It just happens less there than in other places we've tried.

Prior to leaving, I dutifully sent an email to the administrator to let her know, officially, the dates I would not be available. I also included the name and number of my other contact person (our son) for this particular period of time. I told the director. I told the office manager. I told the activities director. I told the med tech who was on duty, and I saw her writing down the contact information and placing it in the med tech office. I told the caregivers.

Upon returning, there were a whole lot of messages from the facility on my land-line answering machine (curiously, none at all on my cell phone). I called back to see what the problem was, and I was told that I needed to pick up an emergency supply of a particular medication right away. It had been reordered; however, the med tech who did the ordering didn't realize that the prescription had no refills remaining. That takes longer to resolve, as we all know, and the doctor hadn't yet renewed the prescription.

I am not proud of my reaction, which was basically "Hello?! It says '0 refills' right on the bottle!" But in my defense, I had just walked in the door after a very long, delayed, stressful, and bumpy flight. I was exhausted, and my injured foot (long story) was killing me. (Who knew walking ten miles to your gate at the airport could be so excruciating? I apologize for every uncharitable thought I've ever had about anyone slowing me down. I feel your pain.) Once again, my vacation buzz was shot down within minutes of returning home.

The main reason I was upset, though, was that my "person to contact in case of problem" had not been contacted when I didn't respond. At all. Not once. This, I did not understand. And then the med tech I was speaking to told me he had no idea I'd been gone and was wondering why I hadn't returned all those phone calls. So why didn't they call my son, whose information is right there in their normal paperwork? This was a small-potatoes type of event, but what if it had been something terrible? What if something had happened to me, and that's why I wasn't responding? Would they just have left a bunch of messages on my answering machine, or would they have called my next-in-line?

Clearly, I am not having a very good day today. Tomorrow, I think I'd better go have a small chat with the administrator.* Perhaps next time there's an issue (and there will be a next time, even in the best circumstances), the dominoes won't all fall down. And while I'm at it, I think I'd better apologize to the med tech for my unfortunate, over-the-top reaction.

I saw this posted on Facebook today. It perfectly describes my current mood! It's available from a place called "A Beautiful Sign." I think I'll order one.

*Update:  Everything worked out, of course. An emergency supply of medication was expedited, careful notes were taken about my concerns, and the next staff meeting will include instruction to ensure this particular scenario isn't repeated for us or for any of the other residents.

Fun With Alzheimers

November 18, 2019

I opened the door leading from my husband's residence to the courtyard, in case that was the direction he wanted to go as we wandered down the hallway slowly. But he didn't want to head outside, apparently. He stopped in his tracks, pulled me back towards him, and "air punched" me in the side with a grunt, pulling his "punch."

"Hey," I joked, gently poking him back.

"Fun!" he grinned.

Every time something like that happens, it takes my breath away. How is it that, somewhere in his mind, he can still have a sense of humor sometimes? Can still pull up a word or two on occasion? One of the caregivers told me that the day before, he'd been following her around and "sneaked up" behind her as she was taking care of another resident. She knew he was back there, of course, but she pretended to jump when she turned around and "saw" him.

"Are you trying to scare me?" she joked.

"Arrrrr...you gonna die!" he teased mischievously and grinned, and they both had a chuckle.

How is it that he can still occasionally be a big tease, a rascal? How is it that his personality still shines through engagingly, even though his ability to chat is gone? How is it that he can be affectionate one moment, and lost in space the next? This disease is so infuriating! If only he could talk to me, explain it to me, tell me what he's thinking and feeling.

It's such a heartbreaking thing to think of this intelligent man imprisoned somewhere in his mind, a captive of misfiring synapses and degenerating brain cells. What if he's locked up, trying to get out, and can't? What if he's trying to communicate, but the words won't come? These are the kinds of thoughts that aren't helpful, I know, but they insist on insinuating themselves into my consciousness, unbidden and unwelcome and horrible. They are the stuff nightmares are made of.

Time Is on Our Side

I haven't been writing very much lately. This is partly because my husband's situation seems stable right now, so there's not much to report. But it's also because I've been in another deep blue funk part of my grieving process.

Yes, I know there have been several of those. But that's how grief is. One day, you think you've got a handle on things and are "doing better." The next, you feel like you've been hit by a truck and don't even want to get out of bed. But you do. You put one foot in front of the other, and you keep going. This long goodbye is difficult and overwhelming and heartbreaking and tearful.

But, the other day, I was holding my husband's hand and looking into his eyes* and stroking his cheek and listening to tunes with him. I thought about last year, when he had sepsis and almost left me to go to his Forever Home with Jesus. And I thought about the amount of time that has passed since then, and all the kisses and hugs and tender moments that we wouldn't have had the opportunity to share if he'd succumbed to that infection.

I realized what a blessing it is to have been given this extra time to be together, to enjoy each other's company, to say with our eyes (and with words, in my case) the things that a lot of people don't have the opportunity to share, when death comes without warning. A lot of healing and forgiveness and understanding has taken place in my heart and, I hope and believe, in his. What a gift!

If you still have your special someone with you, I hope you won't take each other for granted or allow the busyness of life or demands of others to cause you to put each other on the back burner. "Later" may never come. Treasure every minute together, every adventure experienced, every memory made. They're a gift to you.

*It isn't always the easiest thing to establish meaningful eye contact with him at this point. I move my head around to try to get him to look at me, but he has a tendency to look away, mostly. This "failure to make eye contact" is a progression of the disease. So when I say I look into his eyes, I mean that literally, and it doesn't mean he's actively looking back. But sometimes he does, and I see tenderness there. That, my friends, is an emotional moment for me!

The Gross Banana

Lately, unless there's a trauma of some kind, it seems as though one day blends into the next, and time passes by almost imperceptibly. Has it been a week since a notable event? A month? It's a blur. You think you're going to remember milestones in the disease's progress, but sometimes you don't notice they've occurred until later. If a milestone happens suddenly, you take note. But it doesn't always happen that way. Sometimes, abilities disappear slowly over time. Then they're gone, and you wonder how and when they left.
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For instance, now that my husband is basically non-verbal, I've been trying to remember when it was, exactly, that he stopped talking. A year? A year and a half? He still says a word or two now and then, but many of our hours-long visits end without his uttering a single syllable, let alone a string of them together.

2 years ago this week
First day of our last cruise together.
Yes, I was certifiable.

This morning, a post that seemed humorous at the time appeared in my "Facebook memories." It was from two years ago today, October 10, 2017. The post reads like this:

"Yuck, this banana tastes gross!" [him] "That's because it's plantain..." [me]

He had seen the "banana" on the counter, peeled it, and taken a bite. If you've ever taken a bite of raw plantain, I'm sure you'll agree that it isn't the sweetest "banana" you've ever tasted. It's more like a raw potato. But once it's made into tostones, it's delicious! I digress.

When I posted that, it was meant to demonstrate a hilarious, "fun with Alzheimer's," part of daily living with him. In retrospect, though, it's a poignant reminder that, just two years ago, he was wandering around our home, peeling his own "bananas," and able to verbalize a complaint in a complete sentence. He was feeding himself, using the restroom, dressing himself (sometimes comically, but still), going places with me, and doing things.

You may have noticed that I seem a little melancholy these days. That's because I am. My emotions, normally packaged rather neatly in a nice box with a beautiful ribbon, are causing an itchy turmoil just under the surface. And sometimes, when I sing to him or chat with him or read to him or simply think about him and of days gone by, I suddenly notice that my feelings have managed to escape and are overflowing out of my eyes and down my cheeks. I think that's okay. It has to be, because there's really nothing I can do about it.

2 years ago this week
Leaving San Francisco on our last cruise together.

How Are You Doing?

The question most often posed to me, next to "How's your husband?" ("Doing as well as can be expected under the circumstances"), is "How are you doing?" I appreciate each and every demonstration of care and concern, and I receive them all as being sincerely meant from the heart, even if they are in passing. I mean it. Thank you so much!

Commonly, in response, I plaster a big smile on my face and say, "Hanging in there!" Yes, I really am hanging in there. By my fingernails. I am not whining about that, nor am I complaining about my lot in life. I am simply worn out. I am worn out physically. I am worn out emotionally. I am weary of this long, stressful, depressing battle. Especially in the past few months, I am realizing that navigating through difficult times is completely exhausting, an exhaustion I am beginning to think might be permanent.

I worry about my husband and wonder how much longer he will have to suffer, though I continue to hope and pray for healing and restoration. It is despiriting to visit him in a facility instead of being able to care for him at home as I had hoped to do. It is so hard to watch him disappearing before my very eyes, his dignity stripped from him, his ability to communicate meaningfully long gone. Poor man! I wonder how many more pieces of my heart there are left to shatter.

But, really, how many times can you hint at these things without discouraging and burdening others, even close friends? People have their own trials to deal with, some of which are so much more exacting, exhausting, debilitating, and demoralizing. I know this, and so I don't tend to dwell on my troubles "in public." Well, not usually. But you did ask, so it's all your fault!

We "do life" better in community, where we can bear one another's burdens. We can pray for, encourage, and care for each other. We can offer words of comfort and shoulders to cry on, even if they are figurative shoulders from miles or continents away. So, again, thank you for holding us up in prayer all these years. Thank you for being there, for asking how we're doing, for thinking about us, and for being concerned for our welfare. I hope you know I'm here for you, too. And if my husband were to miraculously be his real self again, so would he be. Because there is nothing he wouldn't do for a friend.

They Can't Be Everywhere

The other day, there was an incident in the courtyard at my husband's facility. I didn't realize how much it had affected me until just now, when I decided to write about it. Rerunning it in my mind, my heart rate increased. My breathing shallowed and sped up. Trauma. I think I might have a case of PTSD with the accumulation of stress. But back to my story.

It was a glorious fall day, sunny but not too warm, the golden sunshine peeking through the leaves that rustled softly in the gentle breeze. The Hubster and I were walking slowly, so very slowly, hand-in-hand, down the walkway to the main courtyard area.

Looking around, I noticed one of the new residents walking across the way towards the patio chairs that were in the sun next to the railing. I thought nothing of it. He picked up one of the chairs as if to move it to a shaded area closeby. I thought nothing of that, either, as it happens all the time. But then I saw that he wasn't stopping. He was going faster and faster and faster, a panicked look on his face. Realizing he was unable to slow down or stop, I started to run towards him. One of the caregivers also saw what was happening and was running from the opposite direction. Too late! As if in slow motion, I helplessly watched him trip before I or the caregiver could reach him. The chair flew from his hands, and over it he rolled. Slowly, so slowly, but also so, so quickly.

Before he could right himself to sit up, the caregiver and I had both arrived, comforting him as best we could and preventing him from trying to stand in case anything was broken. The nurse was called to assess his injuries; which, thankfully, turned out to be minor scrapes by bruises. He hadn't hit his head, but it had been a close call.

The staff at the facility is wonderful. The caregivers are compassionate and well trained. But they can't be everywhere, and they don't have eyes in the backs of their heads. It only takes an instant for something like this to happen. It can happen even if you're standing right next to a person. It's the downside of allowing the residents the freedom to wander, but the alternative would be absolute confinement and restriction.

It's bad enough to be locked in a prison inside your mind, as these folks are, without also being forced to stay in a wheelchair or in bed, in restraints, while they are still capable of moving about. That would be absolutely horrible. These residents are living the best lives they can under the circumstances. That's what I want for my husband, and that's what their loved ones want for them, too.

The Car Show

A couple of weeks ago, there was a car show at my husband's place (I like to call it that. Don't you think it sounds better than "facility"?). Now, if there was anything in the world my husband enjoyed as much as swap meets, it was car shows. We have belonged to several car clubs over the years. Some  memberships were formal, some not so much; but, all were fun, entered into with gusto, and included not-to-be-missed special events.

My husband dragged me and our reluctant children to early-morning swap meets to look up one aisle and down the next for that one elusive car part or other. There was much moaning, complaining, and begging to be left sleeping at home in warm beds, to no avail. These car swaps were a hobby shared with his brother, so it was a family affair.

We went to car shows, rallies, show 'n shines, and even a couple of "national tours" with CHVA (Contemporary Historical Vehicle Association), one of which our Mt. Shasta Region club organized. We drove our 1936 Cadillac Fleetwood to Reno, where the tour started after the Reno Swap Meet during Hot August Nights. Our caravan of fabulous chariots wound up through some lovely backroad areas in the Sierras, dropped down into the Sacramento Valley, through Redding, over to Eureka, and down the coast to the Bay Area, where the Redwood Region club had organized their annual classic car show. My husband served as a judge there. He knew his automobiles. I tell you all this because I want to make sure you understand my husband's passion for all things automobile.

Sweet Ride!

The Saturday morning of the recent car show, I drove to my husband's place in eager anticipation. I knew he would be thrilled to see the shiny hot rods and classic cars in the parking lot. As I walked beside him from his place, down the sidewalk, and around the corner to the show, I chatted happily about the vehicles we would see, the people we could talk to about their cars, the beautiful weather, and all sorts of happy things. I could hardly wait to see the big smile on his face and the gleam in his eyes. But while he reacted positively to the '50s and '60s music that was playing through the loudspeakers, he didn't even notice the cars at all. Even when I pointed out this feature or that feature, he barely glanced over.

I was crushed and saddened. I could hardly keep from crying and was grateful for sunglasses and fake smiles. What a letdown! I began to wish I hadn't attended the event, because now all of our past excellent memories related to this hobby would be forever marred by the overriding remembrance of this, possibly last together, car show.

Returning to his place, I could see that he was exhausted from the effort. The caregivers were anxious for good news about his reactions, but I had none to deliver. And then one of them suggested taking him out in his wheelchair and trying it again. What a great idea. Why didn't I think of that? So off we went, at a much faster clip this time and with race car noises coming from me (don't judge me).

Friends, what a difference it made. I won't say that he suddenly rose from the chair, named off the makes and models, examined what was under the hoods, and kicked the tires. Because he didn't. But he most certainly seemed to be enjoying the ride, at least. And seeing a fleeting smile on his face now and then made it all worthwhile. Instead of a bummer being the icing on this cake, it was topped off with an attitude of gratitude. And isn't that so much better?

1 Thessalonians 5:18

Musings About Life

I saw a post from a friend on Facebook today. It showed two children playing under a young tree, then the two young people holding hands as the tree grows, then the husband and wife embracing as the tree reaches maturity, then the elderly couple with canes standing next to each other under the same tree, then the husband sitting next to the wife's grave under the tree which is beginning to die, and then both graves under the dead tree. Food for thought.

The Two of Us

The post reminded me that several of the trees on our property have completed their cycle and have died or are in the process of dying. I suppose they are a metaphor for our life. There is no cure for my husband's illness. It's been attacking him, little by little to devastating effect, for over a decade. But there's also no guarantee that I won't go first.

Life. It's so simple when you're a child, so full of possibility and excitement when you're young and anticipating your future. You find comfort in each other as you mature as a couple, assuming you've been blessed with a loving partner. You expect to take care of each other through your "golden years." And when life ends, it generally ends in the usual way:  First one of you leaves the other, and then -- lonely and brokenhearted -- the one who stays behind waits until it's time to go, too.

It sounds a bit depressing, doesn't it? But it isn't, really. It's life. It begins, it unfolds, it ends. Look at a flower, for instance. The seed is placed in the ground. Pretty soon, the plant starts to grow. Exciting! And then there's a bud where a flower waits to make it's appearance. The anticipation! Seemingly from one day to the next, the flower has bloomed. It's so beautiful. It smells fantastic. The color is brilliant, captivating. And then it fades and dries up. Its seed falls to the ground.

But that isn't the end of the story! The seed lies dormant until the rains come, the sun shines, and it's time for it to germinate. Then -- impossibly, magically -- a new plant springs up. Exciting! Rebirth. Hope.

Death isn't the end of our story, either. Our Hope is in the Lord. Our Future is with Him in the place He has prepared for us. On that day, He will welcome us to our forever home. There will be no sickness, no death, no tears, no sorrow. And so, no matter how beaten down and sad and worn out I might feel at times during our present hardship, I have a Friend. I know I am not alone. There's always Another with me, standing next to me, holding me up, and urging me on. I have a Hope, and I have a Future.

There's nothing so lost He can't find it. There's nothing so broken He can't mend it. There's nothing so dead He can't breathe life into it. His love never fails.

Psalm 136:1

Sing a Song for Me

In spite of all the negative experiences this disease affords, every once in a while, there's still a ray of sunshine.

My husband was taking a nap on his bed when I arrived today, which isn't all that unusual. I checked his closet for misplaced or missing items, then sat by him as he slept peacefully. When he awoke, I greeted him with my usual smile and kiss(es). He seemed in no hurry to get up, so I prattled away about this and that, sang a few tunes, and was checking more song lyrics online when who should appear? The music therapist! Perfect timing.

I wish you could have seen how my husband responded to the singing and guitar strumming today. It no doubt would have warmed your heart as it did mine, and you might even have been a bit teary-eyed, too.

He was all smiles and even "sang along" with a "word" and even an understandable word here and there, moving his shoulders, occasionally closing his eyes tightly and pursing his lips as he used to do when "feeling" a tune, obviously and undeniably enjoying what can only be described as a joyous, lighthearted, captivating experience for him. It was uplifting and gratifying for me (and for the therapist), as well.

I can't begin to tell you how much I appreciate this music therapist. Not only is he a talented musician and vocalist, but he goes out of his way to learn the songs that will be pleasing to a man of my husband's generation and situation.

I've said this before, and it certainly appears to be true time and again so far:  Music is transcendent. It's magic. It's miraculous. It reaches back to long-forgotten times and places and emotions, and -- at least for a moment -- fires up the imagination to connect with the spirit. If you have a loved one in hospice care, be sure to request music therapy. In a world where I don't imagine there are very many pleasures remaining, this one is not to be missed.

I didn't manage to capture the beatific smiles and engaging eye contact,
but believe me when I tell you he was having a good time!

Another Trip to the ER

It was a fine Monday afternoon. I was in my ruby red car ("Petunia"), on the highway, on my way to see my beloved, listening with satisfaction to the audio version of Pride and Prejudice, when my dash display indicated an incoming call from a number I didn't recognize. Because the hospice folks call from their cell phones, I do my best to answer now, just in case. I always hope it's a spam call, though, because calls from hospice or the facility always throw me into panic mode. There has simply been so much stress, so many not-so-good-news calls, and so many fight-or-flight reactions that my heart automatically skips a beat. Breathe in. Breathe out slowly. Breathe in. Breathe out slowly. Stay calm.

I pressed the answer button on my steering wheel. It was the facility, and the voice of the medical technician came through the speakers. My husband had suffered a major seizure as he was walking; hit his head while falling, unconscious, to the floor; and been unresponsive long enough to cause alarm before "coming to." Hospice had been called, and the hospice doctor deemed it best to send my husband to the emergency room for a CT scan to rule out a brain bleed. If so, it would be an important thing to know.

Somehow, I managed to maintain my composure behind the wheel, arriving at the facility just as his  ambulance was leaving. I followed, and within minutes he'd been transferred to the emergency room, where I tried to keep him calm and comfortable while we waited. His blood pressure, heart rate, pulse, oxygenation, and temperature were all normal.  I was happy that it wasn't necessary to draw blood, do an IV, or try to get a urine sample. Sticking him with needles would have caused him such distress, and he was trying to pull off the monitoring gadgets that were fastened to him as it was.

Ultimately, the CT scan results were also okay, though that experience was good for a chuckle:  "Ma'am, we need your husband to lay flat on his back and keep his head very still for this," said the technician. My response? "Good luck with that!" But they somehow managed, my husband was discharged and returned to the facility, and that was that.

I stayed with him for several hours, watching over him so he wouldn't be alone. Just in case. It wasn't exactly the kind of visit I had hoped to have with him, but all's well that ends well.

By the way, in case you're wondering about his weight, it had to be checked twice again this month. When I asked if he'd been weighed and his chart was checked, the weight shown seemed too high. I asked that he be weighed again, and he seems to weigh the same as last month. But who knows? It would be fantastic to have confidence in that number.

The Stars Aligned

Look! Our hair color matches!

What a roller-coaster ride this disease is. One day your world is crashing in around you, and the next day everything is coming up roses. Well, sort of. Comparatively speaking.

Every once in a while, everything is about as perfect as it can be. What a great visit we had today!

When I arrived this afternoon, it was obvious he'd had a shower and a shave. The color of his shirt brightened his skin. His hair -- clean and fluffy -- looked great. I'd given him a  haircut and trimmed his mustache a couple of days ago, and I couldn't help but admire my work (it wasn't an easy task). Not only that, but the caregiver had taken special pains to include some after shave. He smelled amazing. No, they didn't know I was coming.

He isn't making as much eye contact lately, but he did look at me today. He responded to tender touch and sat still for a chair massage. And he even leaned in for some kisses, rested his head on my shoulder, took my hand, and sort of smiled at me occasionally. In short, it's entirely possible that he knew me, even though he didn't speak. In any case, he liked being with me. And that's almost as good.

A day like today makes up for a lot of not-so-good days, even if it's the only day like today for a while. My heart is full!

The Wheelchair

I don't usually drive out to see my husband in the late afternoon/early evening, but today I did that for some reason. He had just eaten dinner and was relaxing on one of the television area recliners with his eyes closed. He didn't respond at all when I said hello. I thought it was going to be one of "those" visits, the ones where he doesn't seem to care whether or not I'm there.

But not so.

He eventually reacted to my caresses and kisses, and we started a "walk" outside. A very slow walk. We only made it about thirty feet before he seemed to want to turn back. We wandered to the outdoor living room area (each residence has one), where he sat in one of the comfortable, wicker chairs and again closed his eyes. I asked him to stay there while I quickly went to get his iPod from his room. Normally, he would have gotten up and wandered off before I returned, but not this time.

He didn't resist the headphones and seemed to particularly enjoy the Rod Stewart cuts when they came up on "shuffle." He even had a "guitar face" on once or twice, which I found heartwarming and endearing. He hasn't been nearly as responsive to the music lately as he was a few months ago, though.

As it was time for the residents to get ready for bed, I gently tried several times to get him to stand up and walk back into the house. He allowed me to help him get to his feet, but he just stood there for a second or two before sitting right back down without taking a step. This behavior was quite unusual. In fact, I don't remember it happening before. Not repeatedly or in this manner.

I went inside and explained to the caregivers (there was a full crew on duty, which I didn't expect in the evening and was pleased to see) that I was unable to get my husband back into the house. They responded immediately. Usually when they help him to stand, he rigidly leans back. But instead he leaned forward from the waist as he stood and would have "taken a header" if they hadn't been holding him. And then he sat back down without taking a step. This process was repeated several times, and finally I offered to get the wheelchair that, although provided months ago, had just been taking up space in his room. Until today. Getting him into it was a bit of an undertaking, but he made no effort to resist the ride to his room. He surprised everyone by uttering an expletive as they unloaded him and tucked him in. I was happy to hear him say a word, actually, and thankful it was the "s" word and not the other one!

The medical technician is going to talk with the resident nurse tomorrow to discuss the incident, and probably hospice will be called. She explained that in combination with his apparent weight loss since last month (see my last post) and his bowel movements seeming to require increased intervention these past few weeks, today's event might be signaling progression to the next phase of the illness.

Or maybe he was just tired.

Pins and Needles, Part 4

Weigh-in happens the first week of every month, as I'm sure I've mentioned before. And here we are in a new month already. How can the year already be half over? Time seems to fly whether or not you're having fun.

When I entered the facility today after lunch, I couldn't help noticing the weigh-in chair. That's because it was in the middle of the open area. Surmising that it had been used and had not yet been put away, I asked a caregiver if my husband had been weighed. She checked his chart for me efficiently.

"Oh, yes," she said brightly as her finger found the correct line, "We weighed everyone this morning after breakfast. Let's see...172 pounds. 10 pounds more than last month!"

Giving her the most pleasant sideways look I could muster, I opined, "There's no way that guy has gained 10 pounds, and certainly not in one month." Neither did he seem to have lost a lot of weight to me, but it's hard to tell when you see a person all the time.

"Would you like him re-weighed?" she offered helpfully.

"Well, yes, actually. I would," I responded with what I hope was a grateful smile.

Let me explain about this weigh-in chair:  The average resident is seated in the chair, places his or her arms on the arm rests, then his or her feet are placed on the foot rest. The person sits still while the caregiver balances the scales. But my husband is not the average resident, I suppose. He squirms and moves about and leans forward and places his feet on the floor and tries to stand up while someone tries to hold him down, all at the same time. I understand why it's difficult to weigh him accurately.

After a bit of cajoling and bribery, and with the help of two caregivers, we finally managed to get him into the chair. Miracle of miracles, he actually sat back properly, with his feet up on the foot rest. His arms were calmly placed on the arm rests. What a moment! I dashed around to the back of the chair and helped the caregiver balance the scale quickly, before he could move. 154 pounds. This was in the middle of the afternoon, after lunch, having just completed a 12-ounce chocolate shake I'd brought from In-N-Out Burger, and needing a "change."

So, dear readers, he has not gained weight but has perhaps lost a few pounds. I say "perhaps" because there's really no way to know if his previous weigh-ins have been accurate. There's a huge difference between 172 pounds and 154 pounds. Wouldn't you agree?

The Elephant in the Room

Some subjects are more uncomfortable to broach than others. This is one of those:

The other day, something seemed different at the facility. Subdued, perhaps. I noticed that the decorations on the door of one of the residents -- let's call her Bea -- had been taken down. Not wanting to assume anything, I steered my husband in that general direction as we paced together. Sure enough, Bea's name had been removed from the little slot on the door that labeled it "her" room.

My heart skipped a beat. Oh, no. Not another one gone! I just barely managed to keep myself from crying. Bea has suffered for a long time, and so I wasn't entirely surprised to think that she had left us, but it's always still a shock anyway. Just to be sure, when a caregiver went by, I asked about Bea.

"Oh, yes," she responded, "She's left us."

The stricken look on my face betrayed my thoughts and emotions, and she quickly added, "Not like that! Her family moved her to another place. They were running out of money."

Now, it may or may not have been appropriate for her to say this to me, but there it was: The elephant in the room. The thing everyone dreads. These facilities are not what you would call "affordable" for a sustainable period of time. One year might be okay. Two years might be just about manageable. Three years? Four years? Five years? The thing is, you don't know how many years it's going to be. If you have insurance, it could run out (or not even cover this type of care at all). If you have savings, they are probably not bottomless. If you have neither, your monthly income probably won't cover it (certainly not if you're also running a household). And when the money runs out? Well, when the money runs out, you can't stay.

It's the kind of thing that you hope against hope doesn't happen. The thought of it happening is the stuff nightmares and panic attacks are made of. It's always there, right in the back of your head, waiting to pounce on you in the middle of the night. And you can't help but wonder how much longer it's going to be and whether there will be enough funds to cover the cost and whether there will be anything left for your subsequent life, if any. It shouldn't be that way, but it is. As my husband used to say, "It is what it is." Yep. It is.

On a more positive note, today is my husband's move-in anniversary at this excellent facility. It's been a year. It's gone by very quickly, in retrospect. Time is like that. Maybe that should be a whole other post! 

And he said my name again this week. I burst into tears, of course. It's been four months since that happened last; and, once again, he was somewhat irritated with me. Perhaps I should try to irritate him more often so I can hear, "ChrI-i-I-ssss" more regularly? Okay, perhaps not!

The Other Woman

Yesterday, there had been a minor incident at the facility, so I went to check on my husband's situation and to make sure all was well. After a consultation with the weekend hospice nurse, I spent some time walking with my husband and listening to music hand in hand, as is our habit. I fed him his dinner and, as bedtime for him was fast approaching, went to collect my belongings in preparation for leaving.

When I came back, I found that one of the female residents (I'll call her Sheila) had taken him by the hand and was leading him outside for a stroll in the courtyard. I followed close behind in case of mishap. Sheila was smiling up at him tenderly, possessively, more like a mother with her child than like a woman with a man. It was really very sweet. He was more concerned with hanging on to the handrail for steadiness and didn't seem to notice that I wasn't the one holding his hand. He seemed completely oblivious as he stared down at the path, straight ahead.

A caregiver arrived and tried to pry Sheila's hands off my husband, but she was having none of it. There was no way Sheila was going to let go and allow the caregiver to guide my husband back to the house. He was hers! The caregiver seemed a bit flustered as Sheila batted her away angrily. She was probably thinking the situation was upsetting me, but it wasn't. I was amused. I suggested to the caregiver that perhaps she could hold my husband's other hand and guide both of them back. Simple solution.

Many people feel hurt and jealous when their loved ones form relationships or even affections in care facilities, but it's completely natural to feel close to those you share a home with. People need community and touch and affection. Sheila has had a soft spot for my husband since the day he moved in. But, then, she has a soft spot for every new male resident.

It's important to remember that these residents are there for a reason and can behave in ways that would be unseemly under different circumstances; for instance, taking someone else's husband by the hand possessively and leading him away from his wife for a little tête-à-tête. I do admit to wondering what Sheila might have been like before, in her previous life as a high-powered executive.

Mysterious Disappearance

Sometimes, your loved one's belongings disappear in the facility. The staff blames this phenomenon on the "shoppers," dementia patients who roam the premises stealthily, looking for items to take back to their rooms and squirrel away. Do these items remind them, perhaps, of something they used to own? Or are they plain-old kleptomaniacs looking for loot? Who knows? Either way, your loved one's things might wander off, and they certainly won't do so on their own.

One of the things you must do, of course, is clearly label all of your loved one's clothing and every single personal item so belongings can be easily identified and returned. In the beginning, I used lovely little laundry tags, discreetly affixed. As time has gone on, I've started doing what everyone else seems to do, and which I once found horrid:  LOVED ONE'S NAME in LARGE letters using PERMANENT MARKER directly on the fabric. Even then, it washes out in the laundry and must be redone on occasion, assuming you can find the item, so carry your laundry marker with you when you visit. The detergent used is heavy duty. It has to be in order to disinfect soiled items. You might not recognize things, yourself, after they've gone through the laundry.

(PRO HINT:  Navy blue sweats become a lovely shade of rust. My husband now owns four or five terribly attractive pairs of rust-colored pants.)

And speaking of laundry, it's interesting that even clearly labeled items can often end up in limbo, never to be seen again. For instance, all of my husband's towels and washcloths have vanished into thin air. They are not in the laundry room. They are not in the closets or dressers or under the mattresses of others. They are just gone without a trace. Poof. That happens. I'll replace them, naturally, and this time I'll mark them up with even BIGGER letters. I hope that'll do the trick.

All of that to say this:  If there's any real value to an item, monetary or sentimental, it's probably best to leave it at home. But if it provides comfort to your loved one -- perhaps a favorite stuffed animal or blanket or shirt -- remember the shoppers. If your loved one adores an item, so will at least one of the shoppers. Label everything with large letters that can be easily seen by the caregivers and laundry workers; because, though they certainly do their best, they can't be expected to remember what belongs to which resident.

You're a Good Kid

April 26, 2019


There was a party going on this afternoon when I arrived for a visit with my husband. Cheerful people were smiling and laughing and chatting and enjoying music. There was sparkling cider and a marvelous cake with whipped cream and fresh strawberries. It isn't every day someone turns 85! The resident being celebrated is married to a lovely, vivacious, much younger woman who comes to see him several times a week. It's good to know that most of the residents do have frequent visitors. It isn't the kind of place where you drop off Gramps, walk away, and never come back. So, there's that.

My husband was in his room, on his bed, staring at the wall. I sat next to him, and he allowed me to give him a little rubdown. I told him there was a party going on and asked him if he'd like to go there with me. It took some coaxing, but he did let me take his hand and lead him out to the common area, finally. He was all smiles, too, which is a bit unusual.

He smiled at me, he smiled at the other residents, he smiled at the hospice people who were there, he smiled at the caregivers. I was happy to see him in such an apparent good mood and took advantage of the situation to "dance" around with him a bit, holding his hands and beaming up at him like a schoolgirl. And just when I thought all his attention was on me, he reached out and patted the derriere of a guest who was bending over a table. She seemed rather flattered, thank goodness. Pro tip:  Don't bend over tables around people who have lost all their social filters!

We continued intermittently "dancing" and resting. He hadn't said anything at all, but that isn't unusual anymore. At one point, as I was giving him one of many special hugs, he reciprocated, tried to lick me, grinned, looked me right in the eye, and said, "You're a...You're a good kid."

It's stunning how such a small thing can mean so much.

Death Comes to Journey House

April 29, 2019


Two more residents have passed away, one yesterday and one today. That makes a total of six since my husband moved in last June. I can't say either one of these two was a surprise, exactly, except that death always is surprising, even when it's expected.

It is very hard on the caregivers, who do such a fine job of nursing and changing and feeding and showing affection to each and every one. To be the ones responsible for each resident's best possible life, at the very end of life, must be both a privilege and a curse. As each person declines little by little, or sometimes quite rapidly, how difficult it must be to maintain a cheerful and encouraging demeanor.

Even as a visitor, as I am, you develop a fondness for the residents, an understanding of their quirks, a camaraderie and community with their friends and relatives. And then, suddenly, they're gone. Gone gone. He won't be grabbing my hand and holding it tight as I walk by anymore. She won't be returning my greeting with a sweet smile. It's sad from our angle. But from their point of view, I'm sure it's glorious to be free!

As my husband and I walked and swayed to the music coming through our headphones today, I held him more closely. I gave him extra smiles and plenty of kisses. I stroked his cheek gently and gazed tenderly into his eyes. I showered him with words of love and admiration. I savored every moment.

Would that we all could remember that life is a gift, a fleeting vapor. Some things really matter. And some things really don't.

Hospice Renewal

April 22, 2019

It's hard to believe, but it's been just a couple of days shy of six months since my husband was placed in hospice care. Time flies, whether or not you're having a good time.

I've been very pleased with the care and services my husband is receiving through hospice. For those of you who don't know, a hospice contract must be renewed every six months. Sometimes a person "graduates" from hospice back into regular care and then back into hospice again, over and over. That is a disquieting scenario, so even the possibility is nerve-making in the extreme.

Knowing the contract was about to expire, I was a little apprehensive over the past couple of weeks. Of course I shouldn't have been. It isn't as though my husband's condition is dramatically improving or expected to. And if an absolute creative miracle is going to happen, this would be a good time for it to do so.

When I came back home after our visit today, there was a message on the answering machine from the home health coordinator. She wanted to let me know right away that the request for renewal of hospice has been approved.

That's a relief. But it's also an indication.

It's a Good Friday

April 19, 2019

Today is Good Friday. Lord, I am grateful for your willingness to come be among us, showing us how to live. Especially since You knew this day would come. And it wouldn't be pretty, but it would make a way for us to be reconciled to the Father. Thank you! Hallelujah, what a Savior!

It's hard to explain how or why, but my husband and I had an excellent visit today. When I arrived, he was doing battle royale with the caregivers who were trying to usher him into the bathroom for a change of everything and a shower. Bless them! They are so patient and kind, and they do a great job. But I thought, "Oh, boy. This is gonna be wonderful..."

When he walked back out, he was all cleaned up, smelled good, and looked handsome with his hair combed and tamed. He was still confused and agitated, so I greeted him with a big smile and my very best "calm and soothing" voice. He responded with a big smile and -- I thought -- recognition. He was smiling at ME, not just at some woman saying hello. He took my hand, looked into my eyes, smiled again, and gave me a kiss. Wow! My heart was so filled with joy.

After several hours of relative wonderfulness, he decided to lie down on his bed. I pulled up his covers as he gazed at me. I took his hand and asked him if he wanted to pray. He nodded his head and folded his hands, and I said the Lord's Prayer. Then I asked if he wanted to pray for our children. Again, he nodded his head. I took his hand, and I prayed. I felt as though he was praying with me, though of course he didn't utter a syllable. It has been a very long time since we have had such a cognitive connection.

So, on this Easter weekend, I thought it would be good to share this miraculous day -- this Resurrection story -- with you. Our prayers don't have to be loud to be heard. The Lord knows our hearts, and He knows how much today meant to me in so many ways. What a gift!

Speaking of Resurrection, Sunday's coming! All around the globe, Christians will proclaim, "The Lord is Risen! He is Risen indeed!" Happy Easter to you all.

Pins and Needles, Part 3

April 5, 2019

The first week of each month rolls around, and I anxiously await the weigh-in. Will it be higher? Lower? The same? The hospice nurse is at the facility when I arrive. I look at her; she looks at me. We both know there's "A Question" hanging in the air.

Frankly, he doesn't appear to have lost weight to me. But he doesn't appear to have gained any, either. And that's probably not a big deal. The caregivers continue to feed him double portions plus Ensure. I would be packing on the pounds, but he is restless and only sits, exhausted, for a minute or two before resuming his endless pacing. This reportedly goes on all day, but he is often sitting briefly somewhere or other when I arrive, rather than wandering around. He's apparently burning a lot of calories, though that's hard to imagine, especially given the snail's pace at which he walks.

The nurse opens her binder and smiles at me. That's my cue to approach her. She looks at his chart. She compares his weight to previous entries. He seems to have lost half a pound. It could be a minor blip, or last month's weight might have been off a bit, or the weigh-in wasn't exactly accurate. She looks up at me reassuringly. Nothing to worry about, no need to be concerned.

I should be breathing a sigh of relief, but I'm not. I'm not even sure I remember what that's like, exactly. We'll see what Pins and Needles, Part 4, brings.

The Best Years of Our Lives

In follow-up to "Decennium Atrocius," I was thinking about something the other day that I probably should share. I'm just not sure how to do that without having a pity party, but I'll try:

Alzheimer's is an "awful, terrible, no good, very bad" disease (hat tip to Judith Viorst's excellent Alexander and the Terrible, Horrible, No Good, Very Bad Day). I think most everyone would agree with that statement. Most people who get Alzheimer's are elderly. But not all. My husband is in the second category.

As I look back on the past decade (plus), it occurs to me that probably the very best years of our lives have been stolen by this enemy. Our kids are out of school, planning and developing their careers, and establishing their own families. We worked hard and were looking forward to saving hard for the retirement we'd be enjoying in a few short years.

We'd thought about perhaps taking six months to travel from town to town and state to state (we live in the United States), renewing friendships with old friends who have moved away, seeing the beautiful sights along the way, enjoying each other's company, relaxing together, perhaps seeing again the places we'd particularly loved over the years. It was going to be wonderful, and I had even bigger dreams for us. Dreams where we walked along the coast in Ireland and visited ancestral villages in England and sat, hand-in-hand, at a little cafe in Paris while contemplating a trip to New Zealand or Bora Bora or other exotic locations. Just the two of us.

But, as you well know, our retirement doesn't look like that at all. In fact, it is "a perfect graveyard of buried hopes" (Anne Shirley in Anne of Green Gables, by Lucy Maude Montgomery). I haven't spent a lot of time feeling sorry for myself during this trial by fire. Truly. Life is not fair, so why should it be fairer to me -- to us -- than to the next person? Every once in a while -- let's be real -- it does hit me like a ton of bricks. Even if, at some point, I were to be able to travel to every fantastic place in the world, do all sorts of phenomenal things, take thousands of photos, and write hundreds of blog posts, it just wouldn't be the same without my beloved.

And so my dreams have gotten smaller. They consist of hoping he will smile at me and recognize me when I enter the room. Perhaps he will even say something to me. I dream of being able to bring him home to care for him, but that is currently completely out of the question. I dream that I will walk into his room, and he will say, having packed all his things, "There you are! I feel so much better now. Where would you like to go? What would you like to do? Let's go home first, though, okay?"

It would be such a small thing for my God, Who created the universe by speaking it into being, to perform this miracle. But it would be such a big thing for me. It would be the biggest thing ever.

Decennium Atrocius

We're approaching the ninth anniversary of my husband's "official diagnosis," but testing began in March, ten years ago. To say it's been a decennium atrocius would be an understatement.

The initial onset began even earlier, of course, but is only recognizable in hindsight, as so many things in life are. Little things happen with increasing frequency, but you either don't really notice them or you shake them off as being inconsequential. This is what it was like. I should say, this is what it was like for us, because everybody's story is the same in a way. But everybody's story is different:

A person repeats a story. Who hasn't done that? A person searches for the right word. Who hasn't done that? A person misses a deadline. Well, who can blame him? There's too much work to do for one person. The distractions are constant. There are negative personality changes, but they aren't really "changes." They're more like enhancements. You understand. He's has been working too hard and needs more rest. Fuses get short at work and at home. Again, you think your loved one just needs some time off.

You go to his office to go out to dinner with him after your own work day, but you end up assisting with his paperwork instead. You find piles of documents everywhere. Six copies of everything. You start to go through them, to organize them, to throw some of them away or shred them as needed. He panics.

"No! I need that!"

"But, honey. You have six copies of it. Do you really need six copies of it?"

"Don't throw anything away!"

Okay, you think to yourself. He's definitely stressed out, and he's concerned that you'll throw out an important contract or something. You just reorganize the piles so things will be easier to find. You put all six copies of each thing together. You ask if he'd like you to go get some take-out, since he's on a deadline. You don't want him to miss another deadline. Or another meal.

This goes on for several months or maybe it was a couple of years, incrementally more and more, until you're actually helping with spreadsheets and reports that he isn't "able to get to" because of "the work load." And still this doesn't ring any bells with you, because it's become normal. He's putting in longer and longer hours in an effort to get things done and keep his job. Out he goes at 6 in the morning. Back he comes at 8. Then 9. Then 10. Then 11. Then 12. You start to wonder if there's someone else.

Finally, he blows up at his boss's boss during an important business meeting. He's placed on a performance improvement plan (PIP) at his next review. As you are both well aware, nobody "survives" those. But you kick in the afterburners to make sure all the t's are crossed and all the i's are dotted after your own day of work. You wonder why he doesn't seem to be able to get this stuff done and keeps calling you at work with Excel questions, but still you haven't figured out that there's a real problem. Socially, he's getting by just fine. Or at least that's how it appears. Nobody knows something is very, very wrong. Not even you.

He survives the PIP! Nobody can believe how he's brought his performance up. But you can, for obvious reasons. You breathe a sigh of relief, but not for long; because, he might have survived the PIP, but the next person RIF'd (reduction in force) will probably be him. It usually is after a PIP. And...it is.

Because of the economic downturn -- and probably his age -- it would be another full year before he would have an opportunity to work even a temporary job (read about that here) and before his sisters, concerned, would take me aside to ask if I had a physical scheduled for him. Others close to him were starting to notice that something was wrong, but I was in denial. But since his temp job manager had noticed, too, I made the call. The rest, as they say, is history.

First Anniversary

March 27, 2019

It's been one year since I drove my husband to a care facility in Napa for a one-month respite stay. I was scheduled to go on a short trip, and I really needed a period of rest. I had fully intended to take him home and hang in there at least a few months longer, much to the distress of my family and friends.

Little did I know how this respite stay would result in a precipitous downturn in his condition and permanent (so far) placement. Or perhaps that was about to happen anyway, and it's even possible that I just didn't recognize how much things had gone downhill. Sometimes, it's hard to see the forest for the trees. Or maybe it's more accurate to say you don't notice the temperature of the water in the pot going up bit by bit until it starts boiling.

Looking back, as breathtaking as the whole situation was at the time, I realize now it was the best decision for him and for me. It has taken a year for me to start getting any semblance of sleep pattern back, though sleep is still sketchy at times. I finally, just a couple of months ago and at the insistence of my children, started physical therapy for the injury to my arm that was exacerbated by repeated twists and pulls and yanks and pushes and grabs. This is apparently not an unusual injury for caregivers, especially those caring for dementia patients.

And so, though I miss him every day, even on the days when I spend hours and hours with him, I know I did the right thing.

But I still cry myself to sleep nearly every night.

Dock of the Bay

Because my husband responds to music, "official" music therapy has been added by the hospice provider. The young man visits various residents, strumming his guitar and singing the tunes of their era. He has a strong, clear voice, and his playing is very good, too. All the residents enjoy listening to him and singing along, so it benefits everyone, really.

Yesterday, I happened to be present when the musician came to sing and play for my husband. Previous sessions hadn't gone too well, which is surprising, so I was glad to be there to observe and make suggestions. My husband likes to get up suddenly and wander a bit, which made the therapist think he wasn't interested in the music. That's not true, of course, so I just suggested that when that happens, he could just be a troubadour and follow my husband around. It worked perfectly. The little egg-shaped shaker things, though, not so much. My husband secreted his away in his pocket, but I'm just as sneaky as he is and was able to retrieve it without conflict. Whew.

At one point, my husband had decided to sit down on the couch for a bit. I sat next to him, and the therapist began playing "Dock of the Bay." My husband was nodding his head and tapping his foot, making warbling attempts at singing along to this long-time favorite. Then came the last part of the song.

"Here comes the whistling part," I whispered in his ear, smiling.

And guess what happened next? As the therapist began whistling, my husband whistled along, too! He even trilled some of the "notes." This was so wholly unexpected, so delightful. Everyone in the room started clapping and cheering, "Way to go!"

I just cried. I think that's okay.

A Pat on the Back

The other day, one of the newer residents (I'll call him "Joe") at my husband's place was having a very difficult time. He was extremely agitated, wanting his wife to come get him, wanting to go home, threatening to take his own life, break things, steal booze and drink himself to death. Loudly. Desperately. It broke my heart.

Joe is usually a sweet, sweet man, though he's been known to toss his cane across the room in a moment of frustration. Sometimes, when he's disoriented, he sees me across the room, points at me, and says, "I know you!" He's conversational (obviously) and always greets me with a smile and a cheerful "Hello!" He can be found playing dominos and chatting away at a table with some of the more abled residents.

But he's having a time of it adjusting to being away from home, when he remembers he isn't home. And, of course, he desperately wants to be with his wife, at home, during those moments. He asks where she is, when she'll be back, gets tears in his eyes. Not everyone is as crazy as I am; most people place their loved one in a care facility at the start of aggressive agitation. I don't blame them, because it can be pretty scary. And dangerous.

Anyhow, Joe, my husband, and I were all in the "quiet" living room. Since I have a pretty good relationship with Joe and was feeling deep compassion, I went over to him as my husband sat on a nearby couch and softly "chatted him down from the ledge," as it were, with my hand gently on his shoulder the way I always do when speaking with him. As Joe began to calm down, my husband (who had by all appearances been slouching on the couch taking a nap in oblivion) suddenly stood up and walked slowly in our direction. He looked me right in the eye, gave me a half smile, and patted me on the shoulder encouragingly as he passed by.

Now, you can think whatever you like about the situation. Maybe he does this all the time with the caregivers. Maybe he didn't know who I was at all, but I do know it was an "atta girl." He was offering me support and telling me I was doing well. It was a gift, another precious moment.

His body and his mind might be failing him, but there is nothing wrong with his spirit.

Pins and Needles, Part Deux

Sometimes, an answer isn't an answer. It feels more like a question. My husband was weighed, and he appears to have lost a pound or two. On the face of it, according to what I've been told in the past, that's not-so-good news; however, the hospice nurse advised me to not be overly concerned. After all, she explained, the weigh-in method at the facility is something less than scientific, apparently.

In order to really track weight accurately, it should be checked at the same time of day, wearing the same clothing, having eaten the same amount of food and consumed the same amount of liquid, and having toileted. And sitting very still on the chair scale with your feet firmly on the footrests. There's really no way to do all of that consistently at a memory care facility.

He weighs about the same as he did at the January weigh-in, assuming that was accurate. Perhaps February's number showing a slight gain was off. Perhaps it wasn't. Maybe he has lost some, maybe not. So now we wait for next month's figure.

And then it'll be pins and needles, part three.

The Wanderer

I just found this post that I wrote on March 4, 2018, and apparently never uploaded to the blog. So, this is where we were a year ago, and this is his photo a year ago. He looked so healthy, didn't he? You can't tell a book by looking at its cover.

As you read this "poem," I'm sure you will get a sense of just how frazzled my nerves had become from the daily, hourly, minute-to-minute stress of caregiving alone. Perhaps I didn't post it for that very reason, but now my hope is that it might help someone else to realize the time has come to place a loved one in professional care:

Restless,
Pacing.
Up,
Down.
In,
Out.
Door is open!
Heat is on!
ARGH!

All afternoon,
Lunchtime
to
Dinnertime.
In,
Out.
In,
Out.

He's out the door!
Gate is open!
Oh, no!
In front yard,
Pacing.
Looking.
Pacing.
Looking up the hill,
Looking down the hill...

No!
Don't cross the street!
Come in,
It's cold!
Okay.
Come in,
It's cold!
Okay.

Nothing.

PLEASE come in;
PLEASE close the door.
PLEASE sit here
While I cook dinner.
PLEASE!
PLEASE!

Evening.
After dinner
until
Sleepy time.
Up,
Down.
Up,
Down.
Up,
Down.
Up,
Down.
Up,
Down.
Pacing.
Pacing.
Please, sit down.
PLEASE! My God!
Please help me...

Do you detect the exhaustion and desperation I was experiencing? I didn't remember the last time I hadn't slept with one eye open, if at all. I was badly in need of respite and had scheduled it. Little did I know that we were just weeks away from what turned out to be his permanent placement. It was time. Some might even say it was past time.

Pins and Needles

March 6, 2019

I've been on pins and needles for about a week, since the last visit with the hospice nurse. As I'm sure I've mentioned in previous posts, my husband has been receiving double meal portions for several months in an attempt to stabilize his weight. How he is even able to ingest that much food without being ill is a mystery. But the big question is:  Is he digesting it? The hospice nurse thinks perhaps not.

He did gain a few pounds back, but the facility nurse doesn't think that's continuing, either. If so, that would mean we have moved to yet another phase of this horrible disease. If a person can't keep weight on in spite of all the calories, that means the body isn't able to process the food completely. In one end, out the other. And that latter part now seems to be requiring medication to keep it going.

So. "Weighing in" takes place the first week of every month. This week. That will tell us where we are right now. And that's why I'm on pins and needles.

Stay tuned.

Baby, Baby

March 2, 2019


You were sleeping when I came to see you today. I waited. And waited. It was a sleepy kind of day, and you weren't the only resident snoozing. Finally, after an hour and a half, you opened your eyes and sat up. You didn't seem inclined to get up and out of bed, so I quickly put your headphones on and started the music before you could lie down again.

I sat next to you and waited and smiled and nodded my head to the beat. You finally started to do the same. I stood up in front of you, offering you my hands to help you get to your feet, but you resisted. So we went through the process again and again until, finally, success!

You stared past me as we walked, hand in hand, all over the facility to the different tunes on your iPod. You were mostly expressionless, with an occasional sort-of-smile. Not the one you use when you are in a good mood and having fun. The other one. The one that's a half-hearted or confused return of someone else's encouraging smile. The one that's an obligation, an automatic reaction, rather than a pleasure. That's okay. I know you aren't always going to recognize me or be thrilled to see me. I guess you are more familiar with the caregivers than with me now. After all, they are there all the time. I'm not.

You didn't say anything for hours. Nothing at all. Until Rod Stewart's "Baby Jane" was playing. You lit up, looked over at me, scrunched up your face, and sang, "Baby, baby, baby, baby..." And that was all it took to warm my heart today. I've always been a "low-maintenance" kind of girl, eh?

You kept wanting to sit down. Sometimes you headed for a couch or chair in the common area, and sometimes you headed to your room to sit on your bed. You seemed tired. I guess it was a tired kind of day. I was tired, too. Pretty soon, you got up from the couch where we were sitting and just walked away. I waited. You came back by and walked right past me without noticing that I was there at all.

I gathered my things and stepped in front of you, smiling, to give you a kiss goodbye. You stopped and looked at me, but you didn't see me. I kissed you, but you were somewhere else. That's how it is sometimes, and so it goes.

Happy Anniversary to Us

March 1, 2019

The two of us, 49 years ago.

Yesterday was our wedding anniversary. It's been 49 years since we nervously said, "I do!" It was a dark and stormy night, and a number of our guests were simply unable to make it to the church through the rain and the wind. The next morning was all beautiful sunshine, and you'd never have known about the previous evening's tempest. It's crazy how quickly all those years have gone by. What an adventure it has been for a couple of kids who had no idea what they were getting into but stuck it out anyhow through the good times and the bad times of life, the happy times and sad times. The healthy times and the not-so-healthy times. The sunshine and the storms.

Everyone at the facility and online wished us a happy anniversary. And it was. We listened to music and ate the cheesecake I had brought to share. We sat close together and held hands. I talked to him and smiled at him and gave him a kiss or two. Or three. He looked at me with puppy dog eyes of possible recognition once or twice. I tried to get a good picture of the two of us, but I haven't looked at them yet. For some reason, that's hard to do today.

Later, I met a couple of friends for Thursday Tacos. This has been my support group for years now, almost every Thursday night. We don't usually have tacos. But the name stuck, so we use it. They are ladies who understand love and loss and grief and survival. Sometimes there are more of us and sometimes fewer, but the comfort of knowing we are there for each other is extremely important to all of us. Life is a community thing, an outward thing. It isn't meant to be lived in solitude, inward. Not for me, anyway.

If you are a caregiver, I hope you have found a group for support. It doesn't have to be a big group, and they don't have to already be your friends. But they will become your friends as you share your journey together. It's a tie that binds hearts together. That's how it works.

Happy anniversary to us, my darling. You are still my prince, my favorite, my one true love, the only man for me. I love you to distraction and back.

More Seizures

February 12, 2019

A week ago today, my husband had two seizures in less than 12 hours. It was the first time, as far as we know, that he experienced more than one seizure in one day. Or even in one week. His medications were adjusted once again. There has been quite a bit of that, as everything is experimental at this point. The combination that's successful today might not be effective tomorrow.

The next day, he was somewhat lethargic and recovering from the event. He had bitten his tongue and cheek rather badly, so eating was uncomfortable. But he did eat and drink, so that's good.

The day after that, in the morning, I received a phone call from the hospice nurse. Usually when I receive a call from either the facility or the nurse in the morning, it isn't a good thing. So when I heard her voice, I was instantly -- and understandably -- apprehensive. But she wasn't calling to give me bad news. She was calling because she wanted me to know how surprisingly alert he was, how he had sat down next to her and smiled pleasantly, how responsive he was to her questions. She hoped he could "talk" to me on the phone, but he was unable to figure out how to navigate that. I heard him cheerfully say one or two words to her in the background, and it made me happy to hear his voice.

The previous time he had a seizure, in early January, he was also more alert once he had recovered from the event. For a day or two, anyhow. It's odd, and I have no explanation for it; but, I thought I'd mention it in case one of you dear readers can offer any insight.

So far, he seems to be supporting the change in medications very well. On another positive note, and there's no way to tell if it's because of the medications or if it's the progression of the disease, the staff members told me he isn't putting up as much of a fuss when it comes to personal care. We don't know if that's a passing thing or if it's the "new normal," but we'll take it!

He Said My Name

Paleo fudge brownies, paleo raspberry-
filled sugar cookies, shortbread

February 14, 2019

I took some special goodies I'd baked to the care facility today, along with a beautiful card I had chosen for my husband. Usually, I have to settle for a card that isn't too awful. I'm sure you know how it is! This one, though, perfectly expressed my feelings about our life together and our love for each other in spite of the uncertainty of our future. I couldn't  have written it better myself. But this post isn't about the card or the cookies.

He was lying down on his bed when I got there, staring at the wall and not responding to me at all. I sat next to him and read the card out loud, and he almost smiled once or twice. I fed him a brownie and a raspberry-filled sandwich cookie (okay, maybe this post is about the card and the cookies, sort of), and then the music playing through his headphones began to perk him up. It always does, because music is magic.

The hospice chaplain had arranged to meet me there in order to share communion again, the three of us. By the time he arrived, my husband and I had "danced" into the common area, eaten some pretty fabulous chocolate-covered strawberries prepared by the staff, and were sitting in the dining room. I'm not always sure whether or not he knows who I am, but he's usually happy to hang out with me. Today, he seemed to really know me. He held my hand tightly, leaning towards me for kiss after kiss on the cheek. It was very touching and tender and heartwarming. And bittersweet.

As the chaplain came over to our table, I leaned in to my husband, saying his name to focus his attention on our guest. Staring straight ahead, he responded with my name. His name; my name. Just like that. It's the only word he spoke during the more than three hours I was there today. What a gift it was, though!

Happy Valentine's Day to me!

You're My Girl

January 14, 2019

It's normal to feel a mixture of emotions when visiting a loved one in a care facility. You might experience guilt or grief or inadequacy. You might feel like a failure because you totally intended to keep your loved one at home until the bitter end, but then you discovered the truth in what others had been telling you for months or years. You can't do this part by yourself. This, my friends, is not an easy thing to accept.

As time goes on, you see that your loved one is comfortable in his or her new surroundings. You see that the caregivers are professional and know what to do in difficult circumstances. You see that they really do care, and they can accept your loved one as he or she now is without being tormented or burdened by memories of who he or she once was. And you see that you can spend time with your loved one that is "quality" even though there's very little about it that would seem like "quality" to other people.

When he's having a good day, hours with my husband seem like minutes. Sitting next to him, holding his hand, rubbing his back, running my fingers gently through his hair, smiling up at him, touching his cheek, and encouraging him as we listen to music together...the hands on the clock continue to move, but time stands still. Just for those moments, we are the only two people in the room.

Yesterday, we were enjoying one of those good days together. He slipped his arm around me comfortably as we sat together. Physical touch has always been important to us, as it is for most couples. It was the most natural thing in the world, really.

"You're my girl," he said so softly I almost didn't hear it.

It was a moment to cherish, a gift. There have been quite a few moments to cherish, it seems, and I am so grateful for the comfort and healing they bring to my heart. They are treasures that keep us bound together as tightly as we've ever been, even though we're apart.

God Is Good

January 13, 2019

It goes without saying, doesn't it? But I will go ahead and declare it for those of you who might be wondering:  Yes, I continue to ask God for my husband's healing and complete restoration. No, this does not mean I am "bargaining" or "in denial." It means I believe in the power of prayer. I believe in miracles. I believe that God is good, always good.

Do I believe that God is good, no matter what? Do I believe that even if my husband's healing doesn't come this side of Heaven and that God's answer is "no," God is still good? God still cares about us? Yes. A thousand times, yes!

Many of you have told me you are also praying for my husband (and for me). Don't stop! You have no idea how much this knowledge encourages me and strengthens me and holds me up.

This has been and continues to be a long, arduous journey. Your journeys are also long and arduous, though. So I hope you aren't refraining from sharing your concerns with me because you think I already have enough on my plate. We are supposed to be holding each other up. It isn't a one-way street. You have been there for me. For years. I want you to know that I'm here for you, too.

Blessings!

The Will to Live

January 13, 2019

There are some things that are just basic instinct. For instance, a baby will latch onto anything near his or her mouth and start sucking with all the power of a shop vac. Just ask any new mom whose little one has latched onto the wrong spot! Opening your mouth when being fed, taking a bite, chewing, swallowing. Basic things that will eventually be forgotten should the disease follow its natural progression. But let's not go there right now. Here's what happened:

A couple of days ago, my husband came down with a high fever. Since he's basically non-verbal at this point, trying to determine the cause was an exercise in futility. At this stage, what you go for is comfort. Is the person eating, drinking, resting? Displaying any signs of pain such as facial grimacing, grunting, groaning, or perhaps placing his or her hand on a body part while displaying non-verbal signs of pain?

A nurse was dispatched from hospice to sit with my husband for an 8-hour shift. She (in this case) was charged with encouraging me and ensuring his comfort, monitoring his temperature and blood pressure, communicating with the hospice doctor regarding any needed medications, and taking care of any personal needs that might arise, such as changing his incontinence briefs. Since, on this particular day, he was bedridden due to illness, this involved encouraging him to turn onto his side so the briefs and bed pad could be removed and replaced, then his other side so the pad could be smoothed and the briefs secured. One of the facility's caregivers was called in to help.

Though the bed has railings, my husband was having none of this being rolled onto his side, close to the edge stuff. It was a battle royal as his fear-of-falling instinct took over. The nurse's calming words of reassurance had no effect. He flailed, pushed, and resisted rigidly for all he was worth, and his fear manifested in a remarkable spoken phrase. It surprised all of us: "I'm going to die!" There you have it. Perfect, momentary clarity. Even at this late stage of the disease, it wasn't just the possibility of falling that was giving him the strength to fight. It was the probability of being seriously injured in that fall. It was basic self-preservation. It was the amazing, instinctive, God-given will to live.

The fever has gone, and all is well. This time. I know the day is coming, months or years from now,  when the outcome will be different. In the meantime, though, allow me to marvel once again at his strength and resilience and ability to make a come-back. My man is such a warrior!

Seizures

January 2, 2019 (Happy New Year to you, dear reader!)

My husband had another seizure this morning. They seem to be happening with increased frequency and intensity, with the last two being December 22 and January 2 (this morning). These are not minor little "blank out seizures." They are more like grand mal, with foaming at the mouth and biting of the tongue. They seem to occur in the early morning generally, so far. I haven't witnessed one, but the description by the caregiver is quite dramatic. Since my husband and I have had no first-hand experience with seizures before, this is another learning curve for me. And of course it's also another source of stress. I find that my worry journal is very effective at helping me sort stress out these days!

The hospice nurse is called when my husband has a health event, and he or she visits in person to do an assessment, reports his or her findings to the doctor, and the doctor decides what to do about treatment, if any. Everything is handled direct with the facility, and I get a phone call from the facility to report the incident to me, then a phone call from the nurse to report observations, possible medication changes, and so on. When a stressful phone call wakes you out of a deep sleep and someone starts rattling off medication names and doses, it isn't always easy to grasp the conversation through the thick fog and the adrenaline. I've decided that whenever this happens, I will ask the medical technician at the facility for a new printout of medication orders for my file. I hope this will help me stay on top of things that have a tendency to spiral out of control at the drop of a hat.

When I went to see my husband today, he was rather lethargic, seemed to have a headache (He is unable to say, "I have a headache," but he did cup his hand on his head, exclaiming, "Ouch!"), and mostly wanted to curl up on his bed. All of that is apparently normal following a seizure. In spite of all that, he did eat all of his meal, which was served in his room. His appetite continues to be very good. And speaking of his appetite, I think I may have mentioned his substantial weight loss (from almost 200 lbs. down to 154 lbs.) and the fact that hospice has requested that he be given double portions if he will tolerate them. This is to ascertain whether his body is not processing nutrients or whether he isn't getting enough calories for weight maintenance.

The good news is that he tolerates the additional food and has gained five pounds! Anyone else would have gained 20 with the size helpings they put on his plate and the Ensure nutritional supplement, but I'll take the five. Apparently, his continuous pacing (though at a snail's pace) is causing his body to burn through the fuel provided. He can still absorb nutrition. Or at least if he isn't able to soak up everything, he's still able to absorb quite a bit.

I'd say this weight gain is an addendum to our Christmas miracle. Wouldn't you?