Saturday, February 29, 2020

Happy Anniversary -- 50 Years!

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

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

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

Don't stab me with the knife,
honey! Cutting the cake.
Unbeknownst to me, the activities director had arranged for tablecloths on the tables. Residents had been brought in from the other cottages, ready for cake and ice cream and "bubbly." Music was playing on the boombox. There was a special "head table" just for the two of us. There were toasts, and I made a little speech thanking everyone for joining us on our special day, and we all sang "Happy Anniversary."

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

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

Saturday, February 1, 2020

The Assessment


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

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

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

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

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

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


Friday, December 27, 2019

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.

Sunday, December 22, 2019

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.

No photo description available.

*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.

Thursday, December 5, 2019

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.

Tuesday, November 12, 2019

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!