Reclaiming life after caregiving

SocialTwist Tell-a-Friend
Pamela Bieri

Roswitha Smale, who spent 20 years as a caregiver for relatives with Alzheimer’s, loves to travel, including a visit with the Herero Tribe in Namibia. She and other women who are widowed after their husbands died of Alzheimer’s disease are now part of a group called Just Friends, which is focused on moving on to the next phase of their lives.
Photo courtesy of Roswitha Smale

Just Friends is a group of some 18 women from across the Coachella Valley — now all widows — who continue to meet and support each other in reclaiming their lives after their husbands died from Alzheimer’s disease or dementia.

The group is an organic outgrowth for these women, who met through the Alzheimer’s Association’s Wednesday morning caregiver support group. They made deep connections and developed trust while sharing some of their worst life experiences: their husbands’ mental and physical decline and death.

Just Friends, or the “widows group,” is unofficial and the first of its kind in the Coachella Valley, according to Anne Gimbel, Coachella Valley Regional Director for the Association.

“In fact, I don’t think anything like this has happened anywhere else,” she said. “These women are getting back to their own lives; some of them are very well educated and doing some very interesting things.”

Just Friends members have all lost their spouses over the past few years.

Anne O’Keefe’s husband, Edward Brewer, was officially diagnosed with Alzheimer’s in April 2009. She joined the support group that year and continued until he died in January 2011. Others we interviewed are Roswitha Smale, Ph.D., and Rita Gershon and Joan Suter, both of whose husbands, Phillip Gershon and Lyle Suter, died in 2011.

Focused on moving on

Newly widowed, they began meeting informally at Smale’s house.

“Let’s have one rule: We will not talk about our husbands; we will talk about ourselves,” said Gershon.

And so began a new, healthy step reaffirming their own identities and lives in a circle of friends they already trusted. All had worked through their initial grieving stages.

“Everyone wants to get into our group,” said Gershon. “But they couldn’t handle it unless they are already a widow. We’re not grieving; we are getting on with our lives. No sorrowful stories here.”

People in the Just Friends group “really care about you, really become your friends,” said Suter. “After going through that crazy business, there is a rapport between us.”

Suter clearly remembers the day her husband, Lyle, a portrait artist and former art department chairman at Beverly Hills High School, told her on the phone, “Joan, I’m shutting down,” when Alzheimer’s first became apparent to him. He was diagnosed with the disease in 2006; Joan Suter joined the support two years later.

Similarly, Gershon recalled when an associate in her husband’s steel brokering business asked him a question, and his reply had nothing to do with the associate’s question.

“The fellow said, ‘Are you OK?’” said Gershon. “Then I noticed that Phillip was losing everything, his keys, money, watch, and he began accusing me of hiding it from him. It became progressively worse — slow in the beginning, but then it came much faster.”

Constant caregiving

Smale was a healthcare communications consultant prior to her 20 years as a caregiver for her mother, in-laws, and then husband, Gordon. He had been diagnosed with mild cognitive impairment in 1998, and later tested with a double dose of the Alzheimer’s APOE type 3 gene from both parents.

It was about that time that Smale contacted the Alzheimer’s Association for help. She first joined the support group and later led it; her husband died in 2012.

Now traveling the globe, “I had a lot of catching up to do after 20 years of caregiving,” said Smale.

“Less than a year after all three of our parents died, my husband was diagnosed with Alzheimer disease followed by a 15-year odyssey caring for him.

“I was very grateful for my previous experience. It helped me enormously to deal with the challenges along the way with love and compassion and a good dose of humor. It also helped me see what really matters in life: That we are here to care for one another.

“I have a small window in time now to do the things that I enjoy. I love to travel to remote places and meet with people that are not yet contaminated by Western materialism. I am having a wonderful time and am grateful for all that life has offered up.”

Finding new interests

 “Like many widows, after Ed died I found myself tending to health issues of my own that I had neglected,” said O’Keefe. “Also, I did a lot of travel — a month to Rome and Malta and roughly a month each year back East to see family and friends.”

She is active in her church; with local food bank FISH, the Alzheimer’s Leadership Council, Palm Springs Chapter of National Active and Retired Federal Employees (NARFE), and as an alumna of Harvard Business School.

“While caring for my husband, I started practicing yoga and then started teaching it,” said Smale, who was at a yoga workshop in Estonia this summer. “It kept me very centered and it was the one thing I did for myself.”

“One of the women in our group shared that she was a portrait artist. I was interested, because my husband was also an artist,” said Suter. “She was rearranging her studio and invited us to her house to see her paintings. She was indeed an accomplished artist. Guess what her topic was? Nudes! Every color, every shape, every size. She was quite avant-garde.”

Suter is involved with a memoir writing group and endeavoring to publish a book of her husband’s cartoons he created as featured cartoonist for the Paris edition of the WWII Stars and Stripes newspaper.

“I have a bound copy of all 11 editions filled with delightful cartoons,” she said.

She also is an advisor to a children’s music program for the Los Angeles Unified School District and a member of the Alzheimer’s Association’s Leadership Council, along with O’Keefe.

Some have even found new romance. In addition to doing a little matchmaking within the group, Gershon herself has found a new beau.

“Our Just Friends group was a natural outgrowth for all of us,” said Gershon. ”We can talk about anything — having been through that nightmare — and be understood. You just hear, ‘I’m happy for you!’”

Just Friends members still occasionally attend the Alzheimer’s Association support group in Rancho Mirage sharing their experiences and knowledge with others facing the agonies of Alzheimer’s.

“And stressing, by example, there’s ‘Life after Alzheimer’s’ or ‘Surviving Alzheimer’s’ … Thoughts so desperately needed in the group,” said O’Keefe.