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.
.
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.