Caring for a stranger: A husband struggles with wife’s dementia

Published on Friday, 22 September 2017 10:31 - Written by JACQUE HILBURN-SIMMONS, jasimmons@tylerpaper.com

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A picture snapped on the day William Ricketts married his sweetheart and best friend, Sarah, seems to be among his most cherished possessions.

To outsiders, their wedding portrait from 25 years ago appears unremarkable at first glance - it depicts younger versions of the business professionals, smiling and jubilant, in tailored dress suits.

He was a certified public accountant at the time, she was a business manager - they were a powerhouse couple with dreams and the ability to chase them.

Today, a framed version of those long-ago nuptials sits on the mantle of the couple’s Tyler home, a symbol of happier times Sarah no longer remembers.

“There are days when she doesn’t know who I am,” Ricketts, 70, said. “She doesn’t know my name or that I’m even her husband.”

About the only thing Sarah, 72, can recall about that special day was her footwear - satiny, pointy toe pumps in a lovely shade of blue.

“She used to love shoes… at one time she had 165 pairs,” Ricketts said. “When I showed her the wedding picture, she didn’t recognize me … she said, ‘Oh yeah, I remember those shoes.’”

CARING FOR A STRANGER

Dementia is stealing the memories of Ricketts’ beloved wife and the future they planned to carve out together.

Experts say the disease is a secretive stalker, attacking the brain at the cellular level.

It presents in a variety of forms, Alzheimer’s being among the most recognizable, and usually progresses silently and undetected until symptoms start to appear.

There is, as yet, no cure, but there are hopes that science will once day produce a remedy for an affliction that’s affecting millions of Americans and their families.

Ricketts agreed to discuss his situation so caregivers in similar situations can know they are not alone in the journey and resources are available.

He credits the Alzheimer’s Alliance of Smith County with helping him cope with the unfolding, crushing loss of his life partner.

“Sarah was such a capable person,” he said, voice cracking with emotion. “That’s why this is so hard … it’s like a switch turned on and she started going down. Her memory started going. When I sit there talking to her now, she doesn’t know who I am.”

Social worker LuAnne Harms works with the Alzheimer’s Alliance and helps connect families to resources.

The nonprofit aids both patients and families by helping them find specialized services, such as caregiver respite and comfort items.

Her official title is client services director, but Ms. Harms seems to wear many hats, from educator to sounding board.

She said caregiving is a complicated endeavor and there are no “one size fits all” solutions because every situation is different.

It’s a confusing time for everyone, especially caregivers who can face a range of emotions, from guilt and resentment to lonely and depressed.

“Most of the time, they (caregivers) feel as though they are flying blind,” Ms. Harms said. “It’s unchartered waters, they don’t know what to do.”

And there’s always something new to figure out.

“Personalities change with the disease. As the disease progresses, their age regresses,” she said. “Caregiving is very isolating.”

Families caring for affected loved ones find themselves in a constant stage of adjustment, from ensuring personal safety to selecting clothing that’s easy to slip on and off.

Compounding the journey is the fact that everyday life chores don’t necessarily slow down for the caregiver, who must juggle family schedules, household duties and sometimes career responsibilities.

The Alliance can assist with myriad issues, from helping with support groups to providing education. There are also grants and services available to aid patients and caregivers, courtesy of generous donors, Ms. Harms said, also crediting former First Lady Nancy Reagan with highlighting the challenges of caregiving.

Mrs. Reagan is recalled for her frank talk about her husband, former President Ronald Reagan’s journey with Alzheimer’s.

“It’s the longest goodbye,” Ms. Harms said. “That’s the way Mrs. Reagan described it … I think that’s very true.”

THE LONG GOODBYE

The Ricketts, formerly of Shreveport, were enjoying the novelties of retirement when Sarah’s symptoms first appeared.

They stepped away from high stress careers about 16 years ago for different reasons - her company was downsizing its workforce. His retirement was voluntary, to start a new chapter with his wife.

They swapped a brick and mortar home for an RV, seizing flexibility to travel, golf, socialize and spend time with family.

Sarah, a social go-getter and avid golfer, made friends easily and enjoyed civic involvement and projects, including assisting one year in Colorado’s popular Mike the Headless Chicken Festival.

About five years ago, the couple was still exploring new adventures when Sarah started forgetting things and misplacing her belongings.

When doctors figured out the reason for the absent-mindedness, the couple decided to head toward home.

They liked Tyler so they purchased a house a couple of years ago, but it’s been difficult settling in.

As Sarah’s abilities began to deteriorate rapidly after the move, her husband stepped in to unpack and position their belongings - furniture, accessories, household items and keepsakes.

To his dismay, she offered little resistance in giving up items once coveted - her high heels, clothing and furniture.

Today, moments of clarity are becoming increasingly rare, he said, noting the last six months included dramatic changes in her personality, comprehension and mobility.

During a recent visit, Sarah perked at the sight of visitors. She smiled at compliments about her teapot collection and footwear - summer sandals with flat soles.

She spoke in short sentences and mostly stared outside at the shady backyard as conversations unfolded around her.

“They gradually disappear on you,” Ricketts said, taking care to speak out of earshot. “My wife doesn’t exist anymore.”

Although Sarah does not always recognize her husband, she does remember her adult children, including a son who lives with them and helps out with her needs.

Ricketts said most hours of every day revolve around tending to Sarah’s needs.

She is afraid of separation and wants to sit close, holding hands.

They watch limited television because Sarah believes what’s happening on the screen is real life and becomes panicked.

She’s unable to tend to her needs and requires assistance with everything from mobility to personal hygiene.

Bedtime comes early, normally about 8 p.m. and baby monitors help Ricketts keep an eye on her until he retires for the evening, lest she fall trying to climb out of bed.  

When Ricketts recently decided to swap out their king size bed for a hospital model with rails, he found it was difficult to make a selection because his wife always did the decorating.

“In our marriage, we didn’t spend a lot of money without consulting with the other,” he said. “It’s hard for me to do anything because I’m used to talking with her about it.”

The Alzheimer’s Alliance helped connect the family to people who can help on occasion with household chores, such as cooking and cleaning.

“It was such a relief,” he said. “I just needed some help. Sarah was a wonderful cook. I don’t know how to do any of it.”

Ricketts, emotionally spent and physically exhausted, said he worries about the future and how his own health is holding up.

At the urging of others, he recently started taking breaks to get out of the house. For his birthday several months ago, he decided to dust off his golf bag and try out an area course.

In a fluke, he hit a hole in one. In spite of the excitement, it was an empty victory.

“I’d never done that before, that was my first time,” he said. “But there was no one to tell. I can’t talk to her anymore because she’s not there.”

TWITTER @ TMT _ Jacque