Broda hopes to start young Alzheimer’s support network

by Dennis Dalman

editor@thenewsleaders.com

One day recently, Tim Broda went to visit his wife, Jane, and she was thrilled.

“Tim, you’re home!” she shouted, her face brightening with a great big smile.

But just seconds later, the smile disappeared. Her bright face faded and a look of confusion took over, as if a heavy curtain had been lowered.

“Where’s Tim?” she asked, crying, frantic, nervous. “Where’s Tim? Where did he go?”

Tim held his wife’s tearful face, turning it toward his, closely, and he said, “Look at me, Jane. I’m here. I’m right here, right in front of you.”

But it was like speaking into an echoing well of darkness.

Jane kept wondering where Tim was, where he went, why wasn’t he there?

Tim sagged in his chair, feeling helpless as he watched his wife once again slip into a strange place, a faraway state of mind, that he could not reach.

That sad scene happened at an Alzheimer’s care unit in Staples.

Broda, a 1980 Sartell High School graduate, is the investigator for the Sartell Police Department whose wife was diagnosed with Alzheimer’s disease about four years ago. Jane, now 51, graduated from Sauk Rapids-Rice High School and worked for 20 years in the St. Cloud Hospital’s emergency unit.

Tim and Jane met for a blind date arranged by a mutual friend who worked with Jane in the emergency ward. The two hit it off right away. She was an avid runner; he was a martial-arts enthusiast. They both loved the outdoors – camping, hiking, fishing. They decided to get married, and they set up house with their blended family – two daughters from Tim’s previous marriage; two sons and daughter from Jane’s former marriage. Tim and Jane have been together for 13 years.

Need for support

Broda decided to share his and Jane’s story with the Newsleader newspapers because he wants everyone in the area to know he is trying to start a support network for the families of loved ones suffering from Alzheimer’s disease.

What is really needed, Broda said, is a support group focused on younger victims of the disease. Most Alzheimer’s patients are in their 60s, and even more of them are now in their 70s, 80s or beyond. There are some support groups for families of patients in those upper-age groups.

Jane, his wife, was diagnosed when she was only 47; some people are diagnosed at even younger ages.

“There is a big need for a group for loved ones of younger patients and mid-range patients,” Broda said.

What’s needed are people who can listen, who can understand, who can maybe offer coping strategies.

“I’m not looking for advice,” Tim said. “I’ve had plenty of advice. I just need someone who knows how to listen because they understand and know what it’s like.”

Many times, well-meaning and sympathetic people – friends and acquaintances – will ask Broda how it’s going, how’s his wife? But when Broda mentions any changes in his wife’s illness, the listeners often glaze over and go blank. It’s not that they mean to be rude, but in most cases it’s hard for them to process such sad and deeply sad news and – feeling awkward, tongue-tied – they don’t know how to respond other than with tongue-clucks of sympathy. Or with words that sound like tired clichés: “Oh, I’m so sorry to heart that. Oh, what a shame.”

Broda doesn’t become offended.

“They don’t understand,” he said. “They can’t understand.”

Those who are coping with loved ones with the disease can and do understand, sometimes wordlessly. Anyone interested in forming a support network should call Newsleaders Editor Dennis Dalman at 320-393-7410, and then a list of names and numbers will be forwarded to Broda.

Early signs

One day about five years ago, Broda noticed that, while setting a table for dinner, Jane placed down two knives instead of a knife and fork. He barely noticed it, thought nothing of it, didn’t say anything.

Later, Jane would leave the blower on constantly on the thermostat for the furnace even though the two of them had agreed, often, to keep the blower on another setting.

When Broda’s birthday rolled around, he was surprised when his wife didn’t remember it; she always had remembered in previous years. Later, she forgot about her daughter’s birthday, too.

Then Broda began to notice some bills were not being paid, unusual for his wife who was usually so impeccable about such necessities.

At times, Jane would become irritable for no apparent reason or because of minor things.

Through all of those “lapses,” Broda was a bit perplexed, thinking his wife was getting to be a bit absent-minded.

Dread and terror

Jane’s at-home lapses, those moments of odd forgetfulness, suddenly turned deeply serious when one day she returned home early from her emergency-unit job at the hospital. She was standing there in the house still wearing her hospital “scrubs.”

Usually, Jane worked 12-hour shifts.

“How come you’re home?” Broda asked her.

She told him something about finishing work early.

Less than a week later, Broda learned with a sense of gathering terror that his wife had not been at her job for four days. It’s then he knew something was wrong – very wrong. She had left the house on those four days but had not shown up at the hospital.

It was a period of smiles to tears. One minute Jane would be happy and smiling; the next minute she would dissolve into tears for apparently no reason, Broda recalled.

After her hospital crises, Broda began to ponder the recent past and to connect the dots. Suddenly, all the minor lapses of previous months took on another meaning.

“Suddenly, it all made sense,” he recalled.

What is so sad for Broda is he is sure she knew something was not right, something was going wrong in her mind, and she was courageously trying to keep the coming darkness at bay.

Broda later learned one day at the hospital, Jane had made a series of mistakes, and a fellow worker, not meaning to be mean, had asked: “Gee, what’s your problem? You have Alzheimer’s or something?”

Jane’s fears and denial must have been excruciating because of the giant frightening fact that her mother died of Alzheimer’s in her late 50s; her sister died of it in her 50s; and a brother, also in his 50s, is now being treated for the disease.

After all kinds of discussions and efforts by the hospital, it became impossible for Jane to get her job back.

“She knew what was going on, and it made her so miserable,” Broda said. “Knowing what was happening made her stress and anxiety – and ours – so much worse.”

What followed were long, frustrating consultations with doctors and caregivers, always with big questions looming: How to take care of Jane in her home setting when Broda was working many hours? How to keep her safe? How to keep her as happy as possible?

One solution, at least for awhile, was to take many trips with Jane and the kids. They’d always loved traveling in the great outdoors. Broda was determined to enjoy as many trips together as possible before the disease became progressively worse. Tim and Jane took trips to Yosemite and Sequoia national parks, to a couple of national parks in Utah, to the Grand Canyon and elsewhere. It was difficult because Jane needed constant vigilance and care, but they had good times together.

Care-giving

For about the first two years following her diagnosis, Jane was able to stay in her home. Aide workers would stop at the house to check on her. Her daughter got a job as a home-health aide and she helped supervise, too. Later, a friend of a neighbor who knew Jane as a child also came to help.

Broda, of course, too, did all he could, helping her shower and get dressed as the disease progressed from bad to worse.

Another big help were Jane’s days spent at Opportunity Manor in Sartell, where Jane would spend time in recreational-therapy activities. She began to think she was an employee there and was so happy with her sense of accomplishment, helping the other clients during her days there.

“They were so good to Jane there,” Broda said. “She really liked spending part of the day there.”

One day, Jane managed to find herself in St. Cloud but could not remember where she was or how she got there. A panic set in because Broda and others did not know where Jane was, what had happened to her. A bulletin was broadcast over police stations. After several hours, Broda, hugely relieved, received a call from Jane’s daughter, an employee of Sauk Rapids Coborn’s store. She told him her mother was there, that somehow she had found a ride from St. Cloud to the Coborn’s store.

A sad day of reckoning came when it was determined Jane would have to be placed in a full-care unit somewhere. She was placed at a care facility in Dassel, then Little Falls and most recently in Staples where her medications had to be adjusted over a period of time. Broda and Jane’s other loved ones are hoping she can soon find care in a facility closer to home.

Shifting sands

Most people, Broda said, think Alzheimer’s disease is nothing but a massive memory loss, but it’s much more complex than that, he said.

Those who get the disease, like Jane, experience a whole range of personality changes; they have trouble concentrating; they start reacting to people (even loved ones) in peculiar ways; they begin to withdraw from people.

“Some changes are little things, barely perceptible,” he said. “Memory loss is only one part of the disease.”

Living with a loved one who has the disease, Broda said, is like standing on shifting sands.

“You’re always looking for a firm fitting on solid ground, something solid to hold onto, but you realize you’re always on shifting sands,” he said.

About two weeks ago, Jane was moved from the place in Staples back to the care facility in Little Falls, closer to Broda’s Sartell home. During visits, she recognizes her husband for a couple minutes at a time, but then retreats back into a faraway region again.

Caring Bridge

Broda often updates his and Jane’s struggle with Alzheimer’s disease on her caringbridge.org website. But, more importantly, Broda’s entries on the website celebrate the happiest of times he and Jane shared for so many years. The following are excerpts from some of his entries:

• On Nov. 13, 2003 (the first date) I picked her up at her house that night. Jane and I went out to a local restaurant. We talked and talked and were interrupted by the waitress who came over to take our order, then back to chatting. Our food arrived and we barely noticed as we continued to chat. We barely ate our food before it became cold. A couple hours passed and we asked for to-go containers. As we got up to leave, the waitress asked how long we had been married. We responded it was our first date. She said she had been watching us and couldn’t believe how much we seemed to enjoy our time together. She told us, “You are very good together.” We both smiled at each other and thanked her.

• A problem with caregiving for someone with Alzheimer’s is after four years since her diagnosis I have found it increasingly difficult to remember how she was before the disease. Her personality was so incredibly vibrant. Although writing this has been extremely hard emotionally, it has helped me remember what Jane was like during our more carefree years.

• Occasionally, I will still see the personality I have loved come to the surface, but it only stays for a minute here and there. She relives the painful thoughts of not feeling a sense of purpose and loss over and over again. This disease is a constant and prolonged torture for both the person with the disease and those close to the person. It tears your heart out over and over daily to see her so miserable.

• This disease is not about memory loss as many believe. It’s about taking away the person’s personality, which is the essence of who we are.

• When you know someone truly loves you, it’s easy to spend life together. Jane and I became best friends and enjoyed doing anything as long as we were together. Because of the last four years we became even closer than we had been. Caring for a person’s every need tends to do this. I can say the past four years have been the “worst of times but also the best of times,” as quoted from Charles Dickens.