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?