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!