What hallucinations mean for people nearing death

Published 8:39 am Friday, April 2, 2010

Lynne McCalley of Dowagiac is a nurse with Hospice Care of Southwest Michigan’s Paw Paw office, which she joined in 2001. (The Daily News/John Eby)

Lynne McCalley of Dowagiac is a nurse with Hospice Care of Southwest Michigan’s Paw Paw office, which she joined in 2001. (The Daily News/John Eby)

By JOHN EBY
Dowagiac Daily News

Even people near death have goals.

As a hospice nurse, Lynne McCalley of Dowagiac helps their families translate hallucinations or cryptic comments and lower their anxiety levels.

McCalley helped April 1 Dowagiac Rotary Club program chair Marilu Franks, whose mother suffers from pancreatic cancer and dementia.

She gave Franks a “wonderful book,” Final Gifts, to read.

Franks said the confusion of her mom, who came to live with her and her husband, Mike, in November 2008, can be “a bother,” yet “funny at times.”

Franks also recalled Thursday noon at Elks Lodge 889 how her father, before he passed away, “stared off into space. I asked him what he was looking at. He said, ‘Mark,’ who was our son-in-law who died. Then he shut right up and wouldn’t say any more. I asked Lynne to come and speak a little about some of the things we should be aware of so we know that people are not just hallucinating or being silly, but that this happens across the spectrum with all people.”

McCalley has been a specialized hospice nurse since 1992. Non-profit Hospice Care of Southwest Michigan, formerly located in Decatur, which she joined in 2001, is her third hospice.

“Symptom management” helps understand end-of-life actions, of which hallucinations are a common manifestation.

“Most every person coming to the end of their life may experience this,” McCalley said. “In my experience, my guess of how often this happens is probably close to the high 90 percentile. This unusual behavior can easily be misunderstood by the families and can create a high level of anxiety for caregivers and that person themself.

“Sometimes the things they say can be funny, but they can also be disturbing. It’s helpful to have a hospice nurse explain to the family what they might be experiencing. These unusual behaviors can include picking at the bed covers. They might be holding up their hands or staring.”

What they say may constitute cryptic requests, but McCalley said hallucinations can be conjuring enjoyable memories which help them feel safe or comfortable.

“They don’t want you to do anything,” she said.

Hospice nurses’ role is to help the family understand what’s happening and what approach to employ.

The book Final Gifts focuses on two things in particular – near-death awareness, including seeing people no one else can see and conversing with them.

“They may or may not know them. They could be children or animals. The other thing the book talks about is symbolic language. They might be asking for something and you’re not understanding.”

For example, from her own experience, McCalley recalled a dying man who knew his progressive disease was cutting his time short.

His daughter met Lynne at the door with, “Dad’s got visitors.”

Nothing odd about that because they lived on a lake and always had company.

“Not that kind of visitors,” the daughter insisted.

Her father kept bringing up three nicely-dressed women who needed a ride.
“I don’t know where to take them,” he fretted.

When McCalley brought up his visitors at the end of her visit, he glared at his daughter.
“You told on me!”

But he was also relieved to hear it was a common occurrence because “I thought I was going nuts.”

“Let’s not worry about where you need to take them,” she reassured him, adding, “‘When the time comes to take them, that’s when they’re going to tell you.’ He could deal with that.”

As his condition deteriorated, McCalley squeezed his hand and said, “They’re going to tell you where they need to go and it’s okay to take them. Dad slipped away very quietly later that night. It was helpful to that family to know he had company who weren’t frightening to him. He didn’t need any medication to make him comfortable. The easement of his mind, knowing it was a common event, was comforting enough.”

“Metaphoric language” can be more problematic to unravel, such as travel references accompanied by unusual requests.

“I got this frantic call one day from a son,” McCalley said. ” ‘Mom insists I go to the bank, even though she hasn’t been to the bank in years because I’ve done it all.’ I recognized she was trying to tell him something. You go to a bank why? To do a transaction. I told the son to try this: ‘Everything was taken care of at the bank and all’s ready.’ They had tried to give her anxiety medication, but it wasn’t working. After she had her answer she didn’t need her medicine. I got a call a couple days later that Mom wanted to go to Decatur, she had to go home. ‘I keep trying to tell Mom she’s already home.’ I had a long association with this family and I knew this lady was a widow.”
Turned out her father was buried in Decatur. “The house is ready. You can go home any time you want,” they told her.

“A couple of days later she slipped away,” McCalley said. “This makes a big difference when somebody is left behind to grieve. We can’t stop death, but I feel strongly that we can certainly make a difference in how it happens and relieve the family’s anxiety. It’s really important that the person who is dying be heard. They make plans on how they die. I was taking care of a man whose son thought if he did not allow Dad to dehydrate, he could not die. I got a frantic phone call in the morning that I had to come right now. The son sat at Dad’s bedside and fed him drops of water all night. Unfortunately, Dad’s condition had advanced to the point that he couldn’t process this water. He was literally drowning in his own fluid. I spent a lot of time with this family. It was a Saturday and the family had been called in. He not only made it through Saturday, but Sunday. I was puzzled how he kept going. At the end of the day, I told the son, ‘Your dad’s waiting for something that’s really important. I’m not sure what it is.’ The next morning when I made my visit, the son told me, ‘He’s waiting for tomorrow.’

“This man was waiting for four nines in the date. He had been born  9-19-1929. He was waiting for Jan. 19, 1999. He always considered nine to be lucky for him,” McCalley said.

“I said, ‘The 19th starts at midnight. You’re going to tell him at 10 o’clock.’ They did exactly that and he died at 3:45 a.m. They have some control to reach goals. The stories are endless.”