Sunblock in the Nursing Home

Romeo's nurse asked me whether he ever joked with people. The answer is...well, no, not really. He'll make a joke, he'll laugh at a joke, but since I've known him, he's never teased anyone or pulled anyone's leg. Then I asked her why she wanted to know.

"He asked for sunblock today."

"Oh, did he want to sit outside on the sun deck?" It was, after all, a gorgeous day.

"No." She hesitated and then said, "He said he was packing to go to the Bahamas and needed to take some sun block."

"Oh my."

"We thought maybe you were going to the Bahamas and he thought he was going, too."

"No, I'm not going anywhere right now." I had, however, planned a trip to India but decided to put it off due to various developments with Romeo and in other areas of my life. But certainly no trip to the Bahamas.

I said to her, "Well, at least it's a happy delusion."

She agreed.

Romeo hasn't told me about his upcoming "trip" to the Bahamas, and I never asked him about it, nor do I plan to. He may not remember, and my guess is that he probably doesn't since he hasn't brought it up. If I brought it up, he would immediately suspect strongly that there was yet another lapse in his memory, and that would worry him, cause anxiety. Sometimes in Dementiaville, it's best to let things be.

A Caregiver in the Middle

It's 10:00 a.m. and the phone rings. It's Romeo's nurse.

"Have you talked to Romeo today yet?"

"No, why?"

"Let me tell you what happened last night."

Dear lord, now what, I think. The story unfolds. From his bed, Romeo was banging on the walls, as usual, and yelled and screamed until someone came to help him. Of course he mistakenly thought his call light had been on for 30 minutes and that no one had answered it. When someone came, he let loose with his now usual round of name-calling and anger and frustration. And it took some time to calm him down, again like usual.

He insisted that he had been left in the shower and couldn't get anyone's attention to help him get out. He claimed he was abandoned in the shower -- all the time while he was actually tucked into his own bed.

Not really believing it, I asked Romeo's nurse, "Someone was giving him a shower at 3:00 a.m.?"

"Not that I know of," she said. "We don't do that in the middle of the night. But I'm going to investigate it just to be sure. If someone did leave him in the shower, they're in big trouble. I just wanted to let you know in case he tells you about this."

Fair enough. I cherish open, two-way communication.

A few minutes later, the phone rings. It's Romeo. He had told his nurse that he wanted to speak with me, so she dialed my number for him. The purpose of Romeo's call was to tell me about his shower ordeal the night before. It was the same story his nurse had told me minutes ago. I agreed with Romeo that yes, it was horrible that he was abandoned in the shower, that I would talk with his nurse about it.

Then Romeo complained again about how no one answers his call button during the night. For all the times Romeo has voiced the unanswered call button complaint to me, he has never once told me why he summoned help.

"Romeo, when you press your call button during the night, what do you need? What do you need help with?"

"Pain," he says.

"Pain? What kind of pain, where?"

"In my ankles."

This is the fist I'd heard from him of pain during the night.

"How bad was the pain and how long does it last?"

"Pretty bad. It goes on for hours."

"Does this happen every night, pain in your ankles?"

"Yes," he says.

"Okay. When we're through talking, I'm going to call your nurse and see if she thinks it would be a good idea if they gave you something for the pain before you go to bed. That way it won't wake you up in the night."

"Oh, that would be good," he replies with a smile in his voice.

We hang up, and I call back to speak with Romeo's nurse. I tell her the latest about the ankle pain. It's news to her as well. She agrees to give him ibuprofen at bedtime.

I ask, "Do you think that the ankle pain is due to Romeo's dementia, or might there be an actual physical reason for it?"

She refers it to Romeo's doctor, who will check it out.

It seems to take the two of us to squeeze a story out of Romeo, to find out what's bothering him. She has a fact or two, and I glean an additional clue or two from him. Then we talk and figure out the best thing to do for Romeo in that case.

As far as Romeo being abandoned in the shower . . . well, of course it did not happen. But what I told Romeo was very different from the truth. I told him I was as frustrated and angry as he is that this happened. I told him I was at a loss as to what to do about it. And then I "thought" of a solution. I offered to take the matter up with one of my spiritual advisers, and Romeo thought this was a splendid idea. I agreed to do it, hoping all along that Romeo would forget about it, that it would drop off of his radar, never to be mentioned again. So far, so good.

Delusions in Dementiaville

Romeo is now having frequent, almost daily, delusions. New behaviors for him begin slowly, an occurrence here, one there, sometimes weeks apart, then increasing in frequency to perhaps three or four times a week, sometimes becoming permanent.

Early on in Romeo's journey with dementia, I could quickly attribute his delusions to minor forgetfulness or misconceptions. That was when he would "confuse" a minor fact or two, a mere fact or two.

Things have changed, and big time. Romeo's recall has now expanded to him "remembering" entire incidents that occurred nowhere else but in his world, in his fractured memory. Some of his remembrances are pleasant, some not.

For example, during one of my recent visits that extended to Romeo's bedtime, he complained (and insisted) that his roommate was having a party and had the TV on loudly and that it was disturbing him. In reality, no such thing was happening. What was really taking place is: yes, the TV was on, but it was quite soft; yes, there were people in the room -- one nursing assistant helping Romeo's roommate to bed. That's it. Nothing more.

So how did I handle this situation with Romeo when he complained to me about it? I agreed with him. Yes, there was a party going on. And I assured him that it would be over in a few minutes. It did the trick. It settled him. Can't help but wonder, however, how he would have reacted if instead I had told him what a friend had suggested. She wondered what he would have said if I had told him, "It's a pity they didn't invite you." Would he have been angry that he hadn't been invited? Would he have laughed? Would it have been so outside of his thought that he would have forgotten about it?

On a more refreshing note, one of Romeo's pleasant delusions involved him taking a ride to the mountains with friends and stopped for lunch, then for tea. This is something Romeo and I did often -- driving into the mountains, having lunch and/or dinner, taking a hike or walk, having tea. On this day, however, there was no such trip. It simply did not occur.

As Romeo told me the story of this most recent "trip," however, there was a twinkle in his eyes and fresh delight in his voice. So of course I went along with whatever he said, enjoying a somewhat normal conversation with him, even if it was about an outing that happened only in his mind.

It did not matter what Romeo said. What was important is what he felt. His emotions, his happiness -- these feed into his quality of life, which can always use some help. This boost of joy and delight, his perceived trip to the mountains, made his day and several days afterward. He buzzed with excitement, and it touched me deeply. My Romeo man-child in near ecstasy.