Spouses’ dementia unites those in unofficial support group

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From left, Marjorie and Wes Tuma, Jim Pettis, Ed and J. P. Krona and Donna Larson spend time in the common room after lunch at the Immanuel Lutheran Home Wednesday afternoon.  Lunch is a special gathering time for spouses at the Bratsberg Dementia Unit.

Laughter and conversation mix with the smells of freshly cooked breakfast as sunshine pours through the windows of the dining room of the Bratsberg Dementia Unit at Immanuel Lutheran Home in Kalispell.

At a special table near the entrance, a group of spouses and children of residents and former residents begins to gather.

They come nearly every day to help their loved ones as well as other patients cope with dementia.

After years of seeing each other at Immanuel Lutheran, friendships blossomed and then linked into an unofficial support group.

“We found we could relate to one another’s issues quite well,” Pete Larson said. “Most of us visit once a day. We try to make it at meal time because it’s helpful to the staff and because you get a little interaction with your loved one.”

Donna, his wife of 34 years, was diagnosed with Alzheimer’s when she was 63. Pete cared for her for five years before her safety became an issue and he placed her in Immanuel Lutheran about three years ago.

On this Wednesday morning, Pete sat down next to his wife, who sat in her chair asleep. He demonstrates the “wake up” procedure of putting sustenance to her mouth, triggering her lips to part and her eyes to flutter open.

Pete tries to arrive for the 11 a.m. meal time five days a week. Donna hasn’t spoken for about two years but shows awareness in subtle ways.

“Even my coaxing and when she opens her mouth — that’s a communication,” he said.

Ed Krona helps Marjorie “Marge” Tuma push her husband, Wes, up to the table, then goes to sit by his wife, JP, slumbering in her chair. With his hand on her shoulder, Ed speaks softly in JP’s ear as he arranges the food protector around her neck.

He took training on feeding dementia patients, learning how to give food and fluid so they don’t aspirate it into their lungs.

“I go up and help feed JP twice a day when I can,” he said. “The gals that work at the Bratsberg are just beautiful people. They help you so much.”

Wes breaks into song, holding hands with Marge as he waits for delivery of his tray of food specially prepared for his stage of dementia.

Across the room, group members Lillian Hammer and Jim Pettis assist other dementia patients. Lillian’s husband, Jerry, a reserved person, prefers to sit alone at another table.

Jim’s mother, Hildur Pettis, died in the last year as have Diane Leighty’s husband, Dan, and Barbara Geha’s mother, Esther Becker. Jim, Diane and Barbara still enjoy meeting with the friends who help them cope with the slow, incremental loss of the person they loved.

At their January lunch at Famous Dave’s restaurant, Diane said her first Christmas without Dan was difficult. He died a few months ago at 68 from a complication of Parkinson’s disease called Lewy body dementia.

Although she misses him, the staff and group, she also was grateful for his passing.

“I had a lot of peace because I knew where he was going,” she said. “I’m really thanking the Lord for where Dan is.”

At the urging of others at the lunch, Pete, also chairman of Northwest Healthcare’s Board of Directors, takes up the mantle of spokesman for their group. He said they share much in common since their loved ones live in the home and have advanced to later stages of dementia.

Over time, they became friends and developed compassion for one another’s spouses.

 “So when they have a victory, we have a victory. When they have a setback, we have a setback,” he said. “That’s a little different from a standard support group.”

Other groups have a wider spectrum, including people still taking care of a dementia patient at home. Pete said those people have more difficult situations so those with fewer caretaking responsibilities usually yield to them.

“We find we all have a similar walk because of where we are and the time we spend together,” he said. “So we can be supportive to one another.”

Pete said they started meeting for lunches about a year ago. He said some people such as Barb and her sister Alvina Hix had been coming to Immanuel Lutheran for several years. 

“We watched as she started slowly slipping away over the course of a few months,” he said. “When Diane’s husband was dying, he was in a wheelchair and always in a bit of an awkward-looking pose. You develop a compassion for that. When Diane would come, we would all wonder how is Dan going to be today? Is he going to smile, show a little response to her presence or is he going to be in a zone? Then he passed on and Barb’s mother passed on.”

Barb’s mother followed a typical course of losing speech, the ability to feed herself and then the ability to swallow and process food.

Death follows in a few weeks.

“So they just lay there and kind of starve to death. That’s very hard but the group helped,” Barb said. “Ed came in every day to check on her. She lingered about 20 days. She was 93 but was one tough little lady. The staff was wonderful. They came in every day to give her hugs and kisses.”

Jim’s mother died in September. He said she was in Immanuel Lutheran Home for a little more than three years.

Retired from more than 40 years with the railroad, he visited his mother nearly daily and continues to volunteer in the Bratsberg Unit.

“I became so attached to the people there, and these folks, that I felt like taking the feeding class,” he said. “I’m back there feeding one or more a day and that’s good. It gives me something to do.”

Lillian also took the feeding course along with Diane. Her husband, Jerry, a resident of more than two years, still speaks and feeds himself.

“My husband doesn’t need help so I feed a table of probably three to four most nights,” she said. “They all get along fine. I get them to laugh.”

Pete said that Ed’s wife, JP, and his own wife, Donna, are quite similar. They feed their wives at the same table.

On some days, their wives respond to them and smile. On other days, they give little communication other than maybe a passing look.

“If Ed sees my wife give me a look, he comments on it,” Pete said. “We interact that way.”

He said that Marge’s husband, Wes, was a farmer east of the mountains where they raised seven children. He described Wes as still communicating but almost always confused.

Marge said her husband has been at Immanuel Lutheran for about a year but has suffered from Alzheimer’s for about seven years.

Pete added that Wes and Marge and the whole Tuma family often sing together. He recalled how after the Immanuel Lutheran Christmas dinner they all went back to the Bratsberg wing.

“Marge and her husband started singing Christmas carols and pretty soon the rest of us joined in,” he said. “Pretty soon the entire staff and the rest of the patients had migrated in there and we sang Christmas carols spontaneously for an hour and had just a warm, fun time.”

Marge said the group has supported her in other areas of her life.

“I had a medical problem in October and the first ones to come up to the intensive care to see me were Pete and Ed from our group,” she said. “I thought I was losing a husband but what I gained was a lot of new friends.”

Lillian said the group members get together and laugh and talk and solve problems. She said their situations remain hard but everybody knows what everybody else is going through.

Pete agreed.

He remembered one very difficult day when he dropped by in the evening and found Donna curled in the fetal position, just babbling nonsense. He said he totally lost it and had a hard time getting out because the nurses wanted to hug him and “fix him.”

He said he finally made it out and started processing the meltdown.

“But when I really got it processed was when I got there the next day and started talking to Ed about it,” Pete said. “He can relate and I know he can relate. Most people say the right things but it doesn’t find a resting place in your heart because you know they don’t really understand. I know Ed understands.”

Reporter Candace Chase may be reached at 758-4436 or by email at cchase@dailyinterlake.com. 

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