“He’s not the same man I knew.”

It’s a heart-breaking phrase families say of loved ones affected by Alzheimer’s or other dementias every day.

Jean Neal, of the Baxter Springs area, will be the honorary chair for the upcoming Walk to End Alzheimer's set for Aug. 24 at Gorilla Village, Pittsburg. The event is hosted by the Alzheimer’s Association - Heart of America Chapter.

“It’s an honor, I think it’s really great,” she said. “I want to educate people and let them know it affects everybody. They don’t know where to go for help. It took me a long time to find this group.

“It’s important to get connected and find other people to talk to because it is so isolating,” Jean said adding families are dealing with mental, physical and financial stress because of the disease. “That’s why it’s so important to have this walk and to raise money for the research.”

For over a decade, Neal has served as both a wife and caretaker for her husband Darrell, who is 69 years old. Approximately 12 years ago the Neals didn’t have the answer as to why Darrell Neal had changed.

It took several years of testing, until one day someone she met told Jean that Darrell’s symptoms or behavior sounded familiar to her husband's condition, which is called Pick’s Disease.

Originally blamed on Post Traumatic Stress Disorder from his service in the Vietnam War, they now had an answer after a few years traveling two to three times a month to visit a neurologist in Kansas City.

According to WebMD, Pick's disease is a kind of dementia similar to Alzheimer's but far less common. It affects parts of the brain that control emotions, behavior, personality and language. It's also a type of disorder known as frontotemporal dementia or frontotemporal lobar degeneration. The cause is unknown and there is no cure.

Common behavioral changes include: apathy (indifference) or withdrawal; severe depression in a person who has never been depressed before; blunting or dullness of emotions; Loss of inhibition; impulsive behavior in a usually cautious person; bad manners; rudeness; saying or doing inappropriate things in public; impatience; becoming extroverted; very talkative; inappropriate joking; aggressiveness; restlessness or agitation; poor judgment; paranoia; selfishness; difficulty coping with changes from routine; development of obsessive routines; childlike behavior, changes in sexual behavior.

The change

Darrell and Jean Neal met on Dec. 5, 2006 at a 4-State Christian Singles meeting.

“He said he knew [he loved me] since that,” Jean said.

According to his wife, Darrell was a man who loved to wear blue jeans, “fancy” cowboy shirts and hats. At home, he took care of paying bills, meticulously going all the finances in a neat and orderly fashion. He was also a farmer and he always put the animals first, his wife said.

“He was also ornery,” Jean said with a chuckle.

Over time — and sometimes over night — her husband started to change.

He wore more tattered, old outfits and he took more time paying the bills. Darrell still put the animals on his farm first, though at an extreme, saying he was on “farmer’s time,” Jean said. This was worrisome to his wife because it would come dinner time and he would want to care for the animals.

As time went on Darrell would experience night terrors, which woke both of them up. He became paranoid. For example, one day he worried about a receipt on the side of a busy highway. Concerned that it could be his, his wife said he intended to pick it up and he did. There was no reason for any receipt of his to be there.

He also worried that someone was breaking into their home, that there were people in their room. There was no one there, but Darrell got up to take care of it anyway.

These are just a few of the symptoms her husband experienced.

Becoming a caretaker

Jean became her husband’s caretaker. At one point she closed her photography business to care for him full time. It was not an easy feat, she said, and had to keep herself on edge as many of the behavioral changes made their day-to-day life a bit difficult.

“It’s like going back to having a newborn, it’s 24/7,” she said.

At times, support meetings could be difficult to attend because she didn’t want to leave her husband home alone.

“The support group became my life line, they would do research and find the information,” Jean said.

Going to events like family Christmas functions had become hard for Darrell because he would get confused when trying to make his own plate.

“He’s embarrassed and is confused,” his wife said. “He can’t put together that this disease is causing me to not be able to do this.”

Darrell, now in an assisted living home, sometimes can’t remember who exactly his wife is but still gives her a smile, she said.

“Sometimes I’m the wife, sometimes I’m the girlfriend, sometimes I’m the peach lady,” she said. “Does he call me by my name all of the time, no, but does he smile when I come in, yes.”

When they celebrated anniversaries together she came to realize that it was not the same for him anymore. Now they celebrate with the entire assisted living home, sharing their love with everyone. Jean provides music for the evening through a local band.

Her care continues after being placed in assisted living, although it’s not quite the same. She brings him clothing, she’s on call and visits him often.

Grief

Even though Darrell is still living, Jean grieves.

“Even though my husband is alive, I’ve lost him,” she said. “I still grieve the different losses. People don’t always understand that, but the person that you’ve married and loved is gone.

“They are not there.”

Some with dementia or Alzheimer’s are non vocal and Jean witnessed other families going through these changes.

“For six years [another gentleman who is a caregiver’s] wife was in a facility,” Jean said. “The last three she never spoke, the last two never opened her eyes and he would go every day and feed her lunch and dinner.

“That’s love.”

Many people with Pick's or a type of dementia often die of pneumonia, Jean said.

“They forget how to eat, and you think, how can you forget how to eat?” she said. “How to eat and how to swallow and yes, how to breathe.”

He is not going to get better Jean said, which people often ask.

“There’s nothing you can do,” she said. “I know it’s going to kill him, it’s terminal, right before your eyes.”

Faith has been a big part of dealing with her grief.

“I don’t know how people do this without faith, that’s the bottom line,” she said. “I know God put us together for a reason, God knew I could handle this.”

Jean also teaches a grief class, where she helps other people grieve over their many losses.

“It’s difficult, sometimes I do feel resentful,” she said. “We had great plans for retiring, were were going to travel to do and see.”

Advice Jean gives to other patients, families or caretakers, “is to stay strong with your faith, get connected with your support groups and another big issue is self care … we are devoting everything to them and not taking care of ourselves.”

The wear and tear on your body and the stress leave people in tatters, Jean said, which she too said she had found herself at one point.

Jean does this all out of love, she said, adding she knows it was meant to be.

“God knew I could handle it,” she said.

Jean is involved with activities at the assisted living home, she makes fudge for everyone and because she’s a Red Hatter she hosts red hat shows and other costume shows there.

“In his own way, I know he is proud of what I’m doing,” she said.

About Alzheimer’s Association and upcoming event

People can register for the Walk to End Alzheimer’s at alzwalkseks.org

Registration will be at 8a.m., the ceremony will begin at 9a.m. and the walk will begin at 9:15 a.m. at Gorilla Village on Aug. 24.

For more information about the Alzheimer’s Association, people can check out the local chapter of the Alzheimer’s Association at www.alz.org/kansascity.

People can also contact the 24/7 information and support line to talk to get connected to trained and licensed social workers at 800-272-3900. There are a variety of social engagement groups and support groups for caregivers which people can get connected to.