Respite
Six months ago, I applied for a two-week respite stay for Bill at Yucalta Lodge. Respite stays at Yucalta have to be booked by Case Managers six months in advance because there are just three respite beds for the entire North Island. Only one in the locked ward in the facility, which is where Bill has to be because he remains determined to go for walks by himself. I think that no matter how often he gets lost, he still believes he can go for a walk and find his way home again. Or maybe he does it because he needs to prove to himself that he can. Either way, it’s a problem. He often leaves his wallet behind, so I had a pendant made that has his name and Alzheimer’s on one side and my name and our phone number on the other side and he wears it, but under his shirt, so if he’s lost he has to remember to pull it out to show it to someone.
Though I’m in desperate need of some proper rest, I’m unsure about the whole residential respite thing. Chimes that warn me when he decides to go out are not the same thing as him being locked in. I need to stop worrying though, because two days after I drop him off at the lodge, I’m heading to Las Vegas with Stephanie. It’s a short holiday she arranged for before she begins her new job, and time away for me. Lily will be looked after by her godparents, who are super-active people she loves spending time with. Stephanie and I will have four days and three nights on the Strip, also packed with activity because she also booked us tickets for shows each of our three nights. I’m really looking forward to the trip. So I keep telling myself to stop worrying. Bill will be okay.
*****
It’s 7:30 a.m. on my daughter’s and my second day in Las Vegas. I answer the phone. It’s an RN who is in charge of Bill’s unit at Yucalta. She identifies herself, then says, “He’s violent. He threatened to hit a staff member who was in the bathroom with him. What should we do?”
and before I can speak adds, “he’s been walking the halls endlessly, day and night, and he told me he saw his wife’s car just outside, and he was going to get the key and go.”
I want to say, You’re the professionals and I’m on the only holiday I’ve had in years. Figure it out. Instead, I ask to speak to him.
When he comes on the line I ask, “What’s going on? The nurse says you aren’t co-operating with them.”
“It hurts,” he replies. “It just hurts so much!”
“What hurts?”
“My butt.”
In a pre-respite interview, I’d told the administrator and an RN from that unit Bill gets sciatica. I also told them he can easily become constipated, and that when he does it’s a major problem for him. “I’ll tell the nurse to give you some pills for pain,” I say to him. “They’re there to help you, honey. They’re trying their best to take care of you. Will you help them do that?”
“Yes,” he says, and I ask to speak to the nurse again.
“He’s in pain,” I tell her. “He might have sciatica, or he could be constipated. Is he constipated?”
Time passes. I envision her flipping through his chart.
“He hasn’t had a BM in the five days he’s been here and we didn’t catch it,” she says.
Good god! I think. Out loud I say, “What meds are you giving him?”
“Atavan and Haldol.”
“What? He doesn’t take those at home.”
“Just a tiny dose,” she says.
“He doesn’t react well to that kind of medication,” I tell her. “Our doctor prescribed Atavan when Bill wasn’t able to sleep, and instead of settling him it made him more restless and anxious than ever. Risperidone did the same thing. What you’re giving him likely makes him more confused, and he hates that. It’s likely why he’s walking the halls continually. Can you please just give him some proper pain medication instead, and a laxative?”
She says they will.
When I hang up, I’m angry. I rant to my daughter. “If they can’t even handle him for a few days, how’s he going to last for two weeks? As soon as I get home, I’m taking him home.”
She’s quick to reply, “You don’t want to do that, Mom.”
“Yes I do. But while we’re here, I’m going to enjoy it.” And I do.
We walk the strip and oogle dozens of interesting characters, and tour some interesting exhibits. Each evening we go out to a show. The shows are great and the repartee of the taxi drivers who pick us up and drop us off is hilarious.
On our final day, Stephanie insists we need to gamble. It doesn’t take much to convince me. Maybe I’ll be one of those miracle stories where first-timers go home rich. I’ve never gambled before and when we sit down at the roulette table we’re the only two there. The guy in charge is happy to explain how it works. Very soon we’re up by $200. Then, Stephanie decides to put it all on one number. Poof! Gone! We both go through $20.00 at the one-arm-bandit machines in less than five minutes, and when we walk away from the Black Jack table, we’re up by a whopping 60¢. Okay, maybe not rich but I’ve loved every minute of it. When we hand the girl at the cash-out wicket our 60¢ stub we’re still laughing and she laughs with us.
*****
When we get home, I’m refreshed. But at 9:00 a.m. the next day I get another phone call from Yucalta. I’m told Bill has fallen and has a shiner. They found him on his knees in the bathroom at 5:50 a.m. No one knows how long he was down. I ask if it’s drugs that made him fall. “No,” I’m told.
When I get to the facility, I see that besides the shiner he hasn’t been showered or shaved for the entire week he’s been there. I shower and shave him. He revels in the hot water flowing over him.
I tell staff I’m taking him home for the day, and take him to our doctor to check out the eye. He says it’s okay, he doesn’t think there’s a concussion. It will heal. I know it will heal, but in my book it’s far from ‘okay’. Bill has never been unsteady on his feet.
A few days later, I notice his ankles and feet are badly swollen, and mention it to staff. “Likely because he’s on his feet so much,” I’m told.
I go every day for the rest of his time in respite; take him for walks and treats and hours at home. The swelling in his feet doesn’t improve and I mention it again. No one seems concerned.
Maybe spending time with him every day isn’t everyone’s idea of respite, but he willingly returns to the facility at night and I get a lot more sleep than I’ve been getting at night for so long I’d forgotten when I last slept for more than two or three hours at a time was. The six or seven uninterrupted hours I’m getting now is real respite for me.
On discharge day, the nurse who’s helping me get his things together says, “We don’t know how you do it. We’ll see you again soon.”
She is kind and it’s meant kindly, but it takes me aback. When she hands me a bubble-pack of meds to take home with me I’m downright dismayed. There were thirty-two doses of Atavan in the pack, and they’d used all but four. It seems the RN I spoke to when I was in Las Vegas hadn’t believed me.
When I’d brought Bill home during the day, he’d frequently complained of pain. But when I asked him what kind of pain he was having, and where, he’d pointed to several different places on his body and couldn’t explain. When he’d complained, I’d given him Advil or Tylenol and it helped.
Because his complaints seemed so random, a few days ago I’d researched Atavan/Lorazepam and Haldol and learned the side effects are numerous. For Atavan they include: aggression, agitation, abdominal or stomach pain, blurred vision, chills, confusion, difficulty with speaking, discouragement, dizziness, dry mouth, feeling sad or empty, headache, irritability, loss of memory, lower back or side pain, muscle pain or cramps, muscle trembling, jerking or stiffness, painful or difficult urination, and swelling of the face, hands or feet. Haldol is worse. No one had told me he was continuing to get those drugs.
Now, getting ready to bring him home at the end of his respite stay, I wonder how many of the ugly side effects of the drugs they gave him he’s had besides swollen feet and the dizziness that must have caused his fall. And why hadn’t the staff clued in to the fact that no matter how much Atavan and Haldol they gave him he’d become increasingly anxious here? Apparently, the only time he was calm was when I was with him.
So when the nurse who’s with us says she’ll see us again soon, as kind as her tone and as well-meaning as she is, I’m thinking, Nope. I don’t plan on bringing him back here. Ever.