Caring for the Caregivers: Those caring for loved ones with dementia can reach out to each other

September 7, 2019 10:03:49 PM

Jan Swoope - jswoope@cdispatch.com

 

Sheila Avery misses her best friend. Dementia is stealing her away. It began about a year ago, when Avery's mother began displaying signs of a decline in mental ability that interfered with daily life. 

 

"It started not too bad, but I would say in the last six months, even in the last three months, she's gotten where she can't do much for herself," said Avery, who lives in the New Hope community. She and her brother care for their mother at home.  

 

"It's hard to see your loved one go down ... she was my best friend, and I no longer have my best friend," Avery said. "We always did everything together, and that is no longer there. I think that's what's been the hardest on me, not having that."  

 

Bonita Smith and her sister, Aurelia Smith, care for their mother at home as well. Bonita sold her house in Huntsville, Alabama, to return to Columbus, where the siblings are back in the house they grew up in with their mom.  

 

"We watch over Mama; that is what we do," said Bonita Smith. "When we were young she watched over us, so now we watch over her." 

 

Sheila, Bonita, Aurelia -- they are just a few of more than an estimated 43 million adults in America providing unpaid care for loved ones. Many are caring for a family member with dementia or Alzheimer's disease that can affect an individual's memory, reasoning, judgment, communication and the ability to focus or pay attention. As the conditions progress, challenges become more acute. For caregivers, they can include emotional and physical stress, lack of privacy, financial or marital strain, exhaustion, isolation, even depression. All are among the reasons two caregiver support groups have recently formed in Columbus. One meets at 11:30 a.m. the last Thursday of each month at First United Methodist Church in downtown Columbus. The other, for caregivers of those with dementia and other chronic illnesses, meets at Baptist Memorial Hospital-Golden Triangle at 6 p.m. the fourth Tuesday of every month. Both groups offer lifelines of support. 

 

"I think connection is the most important word," said Melanie Tubbs, who in June started the evening group which meets at the hospital. She is a licensed master social worker with Fresenius Medical Care, an affiliate of Baptist Hospital. "A group helps you feel like you're not alone in the journey that you're on." 

 

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Lillajo Ford of Columbus felt compelled to start up the midday group several months ago, after caring for her own husband at home as long as possible. He now resides at a professional care facility, where she visits often.  

 

"This has just been on my heart. God has put it on my heart," Ford said. "I just wanted to offer it to families. ... I want to know that I did everything I could." 

 

Anyone interested is invited to bring a lunch to the casual meetings at the church. The small group has begun reading the book "No Act of Love is Ever Wasted: The Spirituality of Caring for Persons with Dementia," by Richard L. Morgan and Jane Marie Thibault.  

 

"It's a wonderful book," said Bonita Smith who, with her sister, attends on last Thursdays. "And the group functions as a support system and an information-gathering occasion." 

 

The most significant challenge in caring for someone you love who has dementia, the siblings agree, is accepting that that person is no longer the same person you knew. 

 

"And they can't help that," stressed Bonita. "They're very innocent in this whole circumstance." 

 

"There's a lot of grief and loss that goes along with that," Tubbs said. "That can happen not just when someone passes away, but when there's been a change in a relationship or role in the home. A lot of times you might have a child caregiving for a parent, and they don't have that support of the parent they used to have. Or it may be a wife who's taking care of things the husband used to do in the household." 

 

Support groups offer a chance to talk, listen and share.  

 

Avery is part of the group meeting at the hospital. "I got to the point that I really needed somebody to talk to that had been going through the same thing -- or they may not be at the same stage; they may be farther along in it, or I may be able to tell someone else what's coming," she said. 

 

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Self-care is important, Tubbs said. Those consumed with helping loved ones can succumb to poor health or burnout. Mindfulness helps, learning to recognize, understand and talk about the emotions that come with the responsibilities. Exercise is another form of self-care, as is finding activities that might make a caregiver feel more rejuvenated. It could be going shopping, a trip to the grocery store alone, or anything enjoyable one took part in before the caregiving began, Tubbs explained. 

 

"It's important to stay connected with people in their community, or people in their churches, or people that have been there for them in the past -- and not just stay connected, but to openly communicate what their needs are." 

 

That may be a meal, or needing someone to take the garbage to the curb or mow a yard.  

 

"Identify your needs and allow others to help fulfill them," Tubbs urged. "Most people are very giving; give them the opportunity." 

 

Both group leaders encourage caregivers to reach out for support. 

 

Ford said, "I just think it helps to know that you're not the only person that's going through this. I think people need to talk to somebody, and that's what we're here for." 

 

Editor's note: For more information about the caregiver support group meeting at midday one Thursday a month, contact Ford at 662-329-4012. For information about the evening group meeting one Tuesday each month, call 662-328-4440. 

 

 

 

A Prayer for Caregivers 

 

(excerpt) 

 

Lord, help me remember I am doing your work. 

 

Help me to clothe myself with compassion, kindness, humility, gentleness, patience, forgiveness and love. 

 

Help me to live out and embody the fruit of the Spirit showing love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. 

 

Enable me to see them through your eyes. 

 

Help me to have compassion as you did and to follow your example. 

 

Ease my burden and provide times of rest and refreshment. 

 

Give me the energy necessary to fulfill my tasks. 

 

Grant me the strength and extra grace to be able to handle things I might not normally be able to handle. 

 

Help me not to lose my joy and give me moments of laughter. 

 

In moments of frustration help me to be slow to anger and to refrain from letting any anger or frustration give a foothold to the devil or lead to any sin. 

 

Comfort me as I mourn what I have lost. 

 

... Thank you for trusting me with this role of caring for another. 

 

Source: via Lillajo Ford, from happyhealthyandproperous.com

Jan Swoope is the Lifestyles Editor for The Commercial Dispatch.