Precious moments: Caring for mom with Alzheimer's tests emotions

News-DemocratMay 11, 2014 

Virginia Manring was perkier than usual on a recent Tuesday morning. She sat up in her wheelchair, fiddled with a baby's teething ring and mumbled about whatever was going through her 85-year-old mind.

Then in what seemed like a moment of complete clarity, Virginia looked over at a young woman's dress and said, "I like that!" before going back to her own little world.

Those three words brought a smile to the face of Virginia's daughter, Carolyn Mers, who was sitting next to her, holding her hand. Such snippets are all she has left of the loving mother who once made clothes for her four children, prepared hearty meals on a shoestring budget and even reupholstered furniture.

Virginia is in the final stages of Alzheimer's disease. She lives at Liberty Village of Maryville.

"Some days, she's totally out of it," said Carolyn, 62, of Belleville. "Other days, she'll light up when I walk into the room and say, 'Hi! What are you doing here?' She might even say, 'Good to see you!' Then five minutes later, she's lost again."

Mother's Day isn't what it used to be for Carolyn, but she has learned to live with Virginia's illness and even reached out to help other caregivers.

Carolyn self-published a book, "The Alzheimer's Roller Coaster: The Story of Our Ride," adapted from her daily journal. She writes a blog and speaks about her experiences to clubs and organizations.

Last month, one of Carolyn's pieces appeared in "Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias." Thousands of writers had competed for 101 slots.

"It was quite an honor to be selected," said Darrell Coons, Illinois outreach coordinator for the Alzheimer's Association chapter in St. Louis. "(Carolyn is) getting some type of royalty, and it's all being donated."

The piece, "We are a Family," focuses on the close bond Carolyn has developed with nursing-home staff, other patients and loved ones. They understand the challenges of dealing with mood swings, confusion, anger and helplessness.

Carolyn also meets monthly with an Alzheimer's support group at her church, St. Augustine of Canterbury.

"This is a difficult journey, and Carolyn has walked with her mother all the way," said the Rev. Bill McGhee, pastor. "I think some people would tend to have a pity party and stand back, whereas she has gone a whole different route.

"She has really taken the suffering and turned it into something life-giving, not only for her mother but other people looking for hope. I just really admire that."

Carolyn is a mother of three and grandmother of two. She and husband Dan run Comanche Ceramics out of their home. He's also a consultant on computerized payroll systems.

Dan used to travel extensively with his job and felt guilty leaving Carolyn behind with the caregiving burden.

"It can be really frustrating," he said. "But you can't blame (the Alzheimer's patients) for anything. They didn't want to get the disease, and they don't even really know they have it."

Darrell got acquainted with Carolyn through the annual Walk to End Alzheimer's fundraiser at Southern Illinois University Edwardsville.

He later helped edit her book and recruited her for the Alzheimer's Association speaker series.

Darrell admires Carolyn's ability to speak candidly about personal matters that many people would consider too sad or embarrassing to share.

Before Virginia moved out of assisted living, she told people that former St. Louis Cardinals manager Whitey Herzog lived across the street and chatted with her while out mowing his lawn. He didn't.

"(Carolyn) doesn't mince any words," Darrell said. "Alzheimer's is a hard disease, and she has struggled with the debilitating effect on her mother."

Virginia moved to Cahokia from Chicago in 1950 with her husband, the late Claude Manring. She worked as a homemaker and made gowns for Bridal Originals.

Her dementia began more than 10 years ago with simple forgetfulness. She left her purse at restaurants and couldn't remember family recipes.

Then came stories of imaginary visits from an old boyfriend. Virginia neglected to mail checks for utility bills and fell so far behind on her house payments, the bank foreclosed.

"The real clincher was when she rear-ended a city bus in Fairview Heights," Carolyn said. "She was OK, but she totaled her new car. She didn't even tell me about it."

In recent months, Virginia has gone from holding baby dolls to chewing on teething rings for comfort. She no longer walks or feeds herself.

Carolyn drives to Maryville at least twice a week to check on her mom. She wheels her outside in nice weather or reads from Little Golden Books.

"Sometimes you have to laugh to keep from crying, and I've done my share of crying," Carolyn said. "I never expected to be an author or a blogger and definitely not a speaker.

"But I also feel like I have been put on a mission to tell my story so other people realize they are not alone. I tell them, 'Yes, it's scary, but there are precious moments to be found, too.'"

Excerpt from "The Alzheimer's Roller Coaster:"

"There were the numerous times that (Mom) had told me that Whitey Herzog lived across the street, and how she always went over and talked to him whenever she saw him outside mowing his grass. Did she really go across the street and talk to some man cutting his grass? Did he look like Whitey Herzog? Or did she just simply watch someone from her window and imagine that she had talked to him? I knew that the time had really come ... for Mom to move on to a secure Alzheimer's unit. Her days of living in an assisted-living facility were over."

Carolyn's tips for caregivers

1. Take care of yourself first or you won't be able to take care of anyone else.

2. Keep lines of communication open -- with your loved one, other family members, doctors and facility staff.

3. Be aware that memory loss is not always dementia. Rule out other health problems first.

4. Know that you are not alone. Seek out others on the same path, including support groups.

5. Look for and cherish happy moments with your loved one. They are there.

6. Be flexible with expectations when visiting your loved one in an assisted-living facility or nursing home.

7. Go into your loved one's world, even if it seems childlike. He or she can't relate to your world.

8. Make new memories for yourself. One day, my mother laughed and laughed at a curtain fluttering in the wind.

9. Maintain a journal as both a record-keeping tool and a form of therapy.

10. Breathe! And give yourself a break. It's OK if you can't go to the nursing home every day.

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