For Glen Campbell, an Unfamiliar Tune

Late-stage Alzheimer's silences an American country and pop legend

by Deirdre Reilly | Updated 10 Mar 2016 at 2:35 PM

Country and pop singer Glen Campbell, battling Alzheimer’s disease for about five years now, has lost the ability to speak, his wife, Kim, announced this week. Campbell has been in a full-time care facility in Nashville since November, after briefly leaving that facility to return to his family’s care.

“He’s healthy, he’s content,” Kim Campbell told WTSP News on Wednesday in Tampa Bay, Florida. “He’s lost most of his ability to communicate verbally. He has severe aphasia (communication disorder), but he still understands the language of smiles and kisses, and he enjoys food.”

Larry Minnix, director of the I’ll Be Me Alzheimer’s Fund, said of the versatile entertainer, “As a teenager, I didn’t have my own record player. My parents scrounged up enough money to get me one, and the very first album I got was Glen Campbell’s ‘Gentle on My Mind.’ I have been a true fan since that day. He is the first entertainer, I believe, to cross musical genres the way he did.”

The new non-profit, named after a 2014 documentary about Campbell, seeks to educate the public about the disease, fund research, and implement programs on Alzheimer’s. Kim Campbell is also involved with the non-profit.

For caregivers, the focus changes in the final stages of Alzheimer’s. While the patient’s physical needs are greater than ever, another goal during this stage is preserving the patient’s dignity and quality of life.

"This is such a difficult stage, and families struggle with the decision," Yolanda Douglass, a director of the Memory Care Neighborhood at the Residence at Pearl Street in Reading, Massachusetts, told LifeZette. The Memory Care Neighborhood is currently caring for 22 dementia patients, all at various stages of the disease. "Families feel like, ‘Mom took care of me, so I should be taking care of her.’ We tell them, ‘We struggle too, and we swap out with another team every eight hours.’ They should never feel bad. It’s a hard decision to make."

The most pressing concerns during the late stages are getting the patient to eat and drink enough, establishing a personal care routine, and keeping up skin and body health.

"I cared for my mother in my home for years, and there were times I was so exhausted I would just sit in my bedroom and cry," a California woman in her 80s told LifeZette. "Something little like not having bananas for her to eat would fill me with despair — that was the exhaustion speaking. And you are losing your loved one so slowly, day by day."

There are several different stages of Alzheimer's, with symptoms worsening over time. On average, a person lives four to eight years after diagnosis.

Caregivers must monitor the patient’s weight and encourage eating and drinking, adapting the menu to the patient’s capabilities. The sense of thirst may disappear in the late stages, so patients need to be reminded to drink fluids.

End-stage Alzheimer's:
  • Loses ability to communicate
  • Can no longer walk
  • Can no longer hold head up
  • Has at least 1 dementia-related medical complication such as weight loss, pneumonia
Source: http://www.Mayoclinic.org

A late-stage Alzheimer’s patient also needs to be moved every few hours to improve circulation and prevent bedsores, and the skin should be kept clean and dry. The teeth and mouth need to be kept clean, and cuts and scrapes should be treated immediately to prevent infection. Extra care needs to be taken to avoid pneumonia, and patients should receive appropriate vaccines.

Limbs should be moved, so they don’t "freeze" into position, which causes discomfort.

Finally, evidence of any pain — wincing, grunting, crying out — should be assessed immediately. Caregivers need to actively look for signs of distress, aggression, or pain.

"Aggression in the dementia patient is really an expression of fear," said Douglass. "They don’t mean to lash out, but oftentimes they are now living in another era entirely in their mind, and perhaps their caregiver looks like someone they feared or disliked (years earlier)."

"The most important thing to remember with end-stage Alzheimer’s is that the senses take over," said Douglass. "In the brain of the patient, while everything else is dying, the amygdala — the emotional center of the brain — is growing. So touch, sight, hearing, taste, feel — all are ways to communicate with the end-stage patient in such meaningful and loving ways."

Sometimes, sadly, the family lives far away during the end stages of the patient’s journey with the disease.

"We never leave a patient alone when the end is near," said Douglass. "It is very hard for our staff to lose a patient; they become like family to them. They want to be there at the end, so you will find them sitting quietly next to their patient, lending support."

There is much sadness in the Alzheimer’s journey, but there are moments of lightheartedness, too.

"The toughest part of the dementia progression we call ‘The Hump,’" said Douglass. "This is when the patient is aware of all they are losing — their friends, their sense of self, and their memories, too. After The Hump, patients turn into happy-go-lucky individuals who are making new friends here, taking new residents under their wings."

The Campbell family is drawing on its faith as they love and care for their famous father, husband, and friend.

"We just trust that God has a purpose for everything that we face in our lives, and we just love each other through whatever we are going through," said Kim Campbell. "Alzheimer’s is a disease that affects the whole family."

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