Make us your home page
Instagram

Today’s top headlines delivered to you daily.

(View our Privacy Policy)

Glen Campbell's wife Kim discusses challenges, guilt caregivers of Alzheimer's patients, others face

If there's one thing Kim Campbell would change about caregiving for Alzheimer's patients, it's the attitude so many of us have toward transferring a loved one from home to a long-term care facility. According to Campbell, it's often the most kind, loving decision you can make. It's not a sign of failure, but one of acceptance that you need help. It shouldn't be a source of guilt.

Kim is the wife of country music legend Glen Campbell. They've been married almost 35 years and have three children together, all of whom performed with their father's band. In 2011, the couple revealed that Glen has Alzheimer's disease. "Glen did so much to remove the stigma, to open a national conversation when he went public with his diagnosis," said Kim, 58, in a recent phone interview from her Nashville home.

As the disease progressed, Kim tried to provide all of her husband's care at home, but she soon found it was too much for her to handle, even with the help of family members. "Glen became combative, too difficult to care for at home. We realized he also need 24/7 supervision," she said. She said that phase of the illness, when it was clear she wouldn't be able to keep him at home, was a real turning point. "I was in crisis," she said, "and the doctor suggested, persuaded me really, to look into long-term care."

Kim Campbell was in Clearwater recently to share with the families of Alzheimer's patients her journey as a caregiver and how she has coped with her husband's illness and the many challenges all caregivers face. But her primary goal was to help alleviate the guilt that so often haunts caregivers: guilt for needing a break, guilt for accepting help, guilt for taking time for themselves, guilt for even considering a nursing home.

"They struggle with the loved one who always said, 'Don't ever put me in a home,' " said Kim, who understands how that can weigh heavily on family members. She thinks that these fears are based on some commonly held perceptions that care facilities are dark, dismal institutions, which isn't always the case.

Today you'll find memory care centers that specialize in caring for residents with Alzheimer's and other forms of dementia. "These are engaging, vibrant communities offering music and art programs, pet therapy, book clubs, social events and support for caregivers and family members," Kim said.

She tells people that she didn't place Glen in a home or facility, but rather, "our family joined a memory care community. It's my community, too," she said. At home, patients are more likely to be isolated with only the television for diversion. In a memory care home there is much-needed social interaction, opportunities for exercise and therapeutic activities that may help slow progression of the disease and give families more quality time together.

Glen, who is now 81, has been in a memory care community in Nashville for about three years. Kim says he's in the later stages of Alzheimer's. While he isn't able to carry on conversations, she still sees glimmers of his spirit and personality. "It's a strange predicament to be in," she said. "When someone you love has Alzheimer's disease, the body is still there and their spirit is still there, but their minds are slowly slipping away." She's grateful for the support of other caregivers at Glen's memory care community and the ones she has met on the road. "I started connecting with these people here at home and around the country. I've made friends in a lot of different states. It's been a lifeline to me," she said.

Her faith has been a lifeline, too. Kim said she prays every day, asking to be a blessing to someone. A former professional dancer, she also exercises regularly, which she says helps with the depression that many caregivers experience. "I take ballet three times a week, I take Zumba, I go to the Y, I try to take care of myself."

She also got involved with Alzheimer's advocacy and launched careliving.org, a website where she shares experiences and family news but also gives pointers on how to pick a good home-away-from-home for a loved one. "We showcase amazing, cheerful, state-of-the-art memory care facilities across the country," she said, "to educate caregivers on what to look for when considering long-term care options."

And, Kim travels the country speaking at senior centers and memory care homes, sharing her Alzheimer's caregiving story. She talks a lot about why it's important for caregivers to let go of guilt. She encourages them to accept offers of help, to take breaks, to enjoy life, to remain positive, to care for themselves so they can be there for their loved one. Most of all, she tells them it's okay to investigate long-term care. "I tell them, never feel guilty about doing what's best for your loved one, what's best for yourself and your family."

To learn more about the Campbells' Alzheimer's journey, watch the documentary, Glen Campbell: I'll Be Me. It chronicles how he and his family adjusted to his diagnosis while on the road for his Goodbye Tour.

Glen Campbell released his final studio album, Adios, this month. It was recorded between 2012 and 2017.

Contact Irene Maher at imaher@earthlink.net.

Make your wishes known

Empath Choices for Care, one of the organizations that co-sponsored Kim Campbell's late-May visit to Empath Health in Clearwater, has launched something new to help people plan for their care should they develop dementia. It's a document that was designed to be an extension of a completed living will. "Living wills are great, but they only apply during a small window of time at the end of life, when there's little or no hope for recovery," said Tracy Christner, executive director of Empath Choices for Care. "When someone has dementia, there are many care decisions to make before the end of life. Dementia can last for many, many years. That's why it's important to document your wishes early, before the stress of managing a terminal illness affects you and your family."

Empath Choices for Care calls the document a dementia living will extension and describes it as a communication tool that will outline your wishes for care should you develop moderate or severe dementia and are unable to make health care decisions for yourself. Christner said it is a detailed document that deals with many complex, often difficult issues encountered in all phases of dementia. The language is direct so that your wishes will be clear. It covers such things as your choices for receiving food and fluids and how you would envision your quality of life in the event of a diagnosis of dementia. "We don't dance around the subject," she said. "You need to express these things openly and honestly and this document will help you do that."

Christner said the time to think about dementia care is before there's a crisis and the whole family descends with their own version of what Mom or Dad would have wanted. With a dementia living will extension a person's wishes are clearly stated so that the health care surrogate can honor those wishes instead of making uninformed decisions on their own. "It takes much of the decisionmaking, stress and anxiety out of dementia caregiving," she said.

To see the document and read more about how it works, go to empathchoicesforcare.org.

Caregiving tips

The Florida Gulf Coast Chapter of the Alzheimer's Association offers this advice to enhance communication with a person who has dementia:

• Always approach the person from the front.

• Identify yourself and address the person by name.

• Show that you are listening and trying to understand what is being said.

• Maintain eye contact.

• Encourage the person to continue to express thoughts even if he or she is having difficulty or you don't understand.

• Avoid criticizing, correcting and arguing.

• Be calm and supportive.

• Avoid using negative statements and quizzing (e.g., "You know who that is, don't you?").

• Use short, simple and familiar words.

• Avoid talking about the person as if he or she weren't there.

People who have dementia can take advantage of available treatments and may be eligible for clinical trials. Visit trialmatch.alz.org to learn more about clinical trials.

Caregivers and their loved ones can benefit from local resources and support services such as education, support groups and referrals to community resources. For more information, visit alz.org or call the 24/7 Helpline toll-free at 1-800-272-3900.

Glen Campbell's wife Kim discusses challenges, guilt caregivers of Alzheimer's patients, others face 06/23/17 [Last modified: Friday, June 23, 2017 6:38pm]
Photo reprints | Article reprints

© 2017 Tampa Bay Times

    

Join the discussion: Click to view comments, add yours

Loading...
  1. Study: Tampa Bay a top market for homebuyers on the move

    Real Estate

    The Tampa Bay area is among the top markets for homebuyers who are likely to move in the next few months, ATTOM Data Solutions says.

    The Tampa Bay area is among the top markets for homebuyers who are likely to move in the next few months, a survey found.
[Associated Press file photo]
  2. Tampa lawyer Fred Ridley to be new chairman of Augusta National, Masters' home (w/ video)

    Golf

    AUGUSTA, Ga. — Fred Ridley first came to Augusta National to compete in the 1976 Masters as the U.S. Amateur champion, and he played the opening round in the traditional pairing with the defending champion, Jack Nicklaus.

  3. Rays send down Chase Whitley, Andrew Kittredge; add Chih-Wei Hu, activate Alex Cobb

    Blogs

    After having to cover more than five innings following a short start by Austin Pruitt, the Rays shuffled their bullpen following Wednesday's game, sending down RHPs Chase Whitley and Andrew Kittredge,

    The Kittredge move was expected, as he was summoned to add depth to the pen Wednesday in advance of RHP Alex …

  4. MLB commissioner Rob Manfred moves closer to wanting a decision on Rays stadium

    The Heater

    ST. PETERSBURG — Major League Baseball commissioner Rob Manfred called Wednesday for urgency from Tampa Bay area government leaders to prioritize and move quicker on plans for a new Rays stadium.

    MLB Commissioner Rob Manfred talks with reporters at Tropicana Field in St. Petersburg, Fla. on Wednesday, Aug. 23, 2017.
  5. Six home runs doom Rays in loss to Blue Jays (w/video)

    The Heater

    ST. PETERSBURG — A curve that didn't bounce was the difference Wednesday as the Rays lost 7-6 to the Blue Jays in front of 8,264, the smallest Tropicana field crowd since Sept. 5, 2006.

    Tampa Bay Rays shortstop Adeiny Hechavarria (11) greets center fielder Kevin Kiermaier (39) at the plate after his two run home run in the third inning of the game between the Toronto Blue Jays and the Tampa Bay Rays at Tropicana Field in St. Petersburg, Fla. on Wednesday, Aug. 23, 2017.