News 8 Investigates - The Long Goodbye

Finding help for families dealing with Dementia

LA CROSSE, Wis. (WKBT) - Most couples look forward to retirement, spending their golden years together while indulging themselves in their favorite hobbies.  

But for some couples the reality is much different.

Tommy and Elaine Wuest were married for more than 50 years in La Crosse had their retirement dreams crumble when dementia changed their lives forever.

Married for 51 years Tommy and Elaine Wuest of La Crosse enjoyed their two children and three grandchildren together.

But a trip to Hawaii in 2012 to visit their son...sparked the beginning of a long and difficult diagnosis.   

Tommy says, "I noticed she was struggling... I couldn't leave her alone".

Tommy has worked at Gundersen Health System's mailroom for a dozen years.

But even working this closely to doctors and nurses every day he had a hard time finding the right care and diagnosis for Elaine.

Gundersen Health System Internal Medicine Physician Michael Dolan saw the problem, "Especially for Tommy and his wife there were lots of visits to the emergency room, but really not getting them into the system where they could get some help". 

Tommy clearly frustrated, "They have a plan for heart people. They have a plan for knees.They have a plan for everything, except for dementia".

Dr. Dolan knows that the early signs of dementia can go unnoticed, "I can tell you there have been many instances over my career where someone came in and I had no idea that there was any cognitive decline at home until family said, "Boy you know what, we've noticed a few things can you check that out?" "

In fact, according to the Alzheimer's and Dementia Alliance of Wisconsin an estimated 5.4 million Americans are currently affected by Alzheimer's disease.

With such an increase in the number of people needing memory care, early diagnosis is important.
Family members can be the key in a patient being diagnosed sooner.

Dr. Dolan stresses, "One of the most important things is that family members need to communicate with their loved one's primary clinician. So if there is a concern, you know what send a letter, call ahead of time."

But Tommy's efforts to get Elaine help were failing, "Dementia is considered a mental health issue, so when you take them into the emergency room if they can't find anything medically wrong they send them home".

Tommy wrote letters to the hospital's administration to let them know that people like Elaine were falling through the cracks.

His efforts have helped to bring change here in La Crosse. Including, health care providers using a simple, one minute test to help detect memory loss.

Dr. Dolan explains, "Our geriatricians and our memory disorder specialists, they really have kind of said use some screening test. We don't care which one you use but use something to identify who is at risk and where there is a suspicion. So one of the things we've done, we've gone to the mini-cog".

The mini-cog is a simple memory test of words followed by asking a patient to draw a clock face. The result can be very telling.

Dr. Dolan had this experience, "I had one person do the numbers straight up and down, one through 12. And circle 2, 4 and 5 as the time, that's how bizarre sometimes it is".

But even after a patient has a diagnosis of one of the many forms of dementia, the wait in La Crosse for memory care can be two to three months.
For Tommy, keeping Elaine at home was more than just difficult, it was becoming dangerous.

On multiple occasions Tommy says he was abused, " She would hit me and kick me and bite me.It was totally out of context with her. And when people were around she was fine, but the minute people left it turned into a disaster! "

Eventually, Elaine ended up at Eagle Crest South in la Crosse, which Tommy would tell you was a blessing. However, it isn't cheap. The price for memory care is about 5-thousand-dollars per month, which meant Tommy needed to sell the family home and keep working to pay the bills.

But Alzheimer's disease took its toll on a lot more than his retirement funds.

According to Tommy, "After 50 years of marriage the only way I could get my wife help was for her to do something either to harm herself or somebody else. She got upset with me, she took at swing at me, she kicked me so I had no choice but to call 9-1-1. What an ugly thing. After 50 years of marriage to have to call the police to get your lovely wife help".    

On June 27th , Elaine's struggle with dementia came to an end, although Tommy feels like she's been gone a lot longer.

Tommy sadly admits, "There were times it was hard to love someone who was so unlovable. But the person I didn't love was not my Elaine, it was the other Elaine".

And even though Tommy has to move on without her, he has faith they'll see each other again.    

He's hopeful she'll remember him, "She's not going to remember me as a husband, she's going to remember me as a great friend and we're going to be able to walk together. "

Since Elaine passed away in June, Tommy has become an advocate for caregivers and patients with Dementia so they know how to get help.  
And Tommy just recently talked to his kids about getting a different apartment, one that allows cats.
He'd like a new kitten for some company and plans to call it "Lainey" after his late wife. 

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