Stolen memories

CELINA - Twenty-five years ago this month, President Ronald Reagan told Americans he had been diagnosed with Alzheimer's disease.

"I now begin the journey that will lead me into the sunset of my life," Reagan wrote in a letter addressed to "Fellow Americans" dated Nov. 5, 1994. He died of the disease a decade later.

Reagan in 1983 designated November as Alzheimer's Awareness Month to promote awareness of the impact the disease has not only on the individual but also for the heavy burden shouldered by the those who love and care for the patient.

Minster native Amy Kronenberger and Mercer County Council on Aging Director Sharron Green said being caregivers for their loved ones changed their lives.

Kronenberger was just finishing college when her mom was in her earliest stages. She said she felt called to step up as a primary caregiver. Her mother started exhibiting signs of early onset Alzheimer's in the late 1990s, when she was only 56-57 years old and Kronenberger was still in her teens. After completing school in 2001, she moved back into her parents' Minster home and worked side-by-side with her dad to care for her mom.

"I had no idea how much it would change my life and make me who I am today," she said.

In the early stages, Green said patients often forget things they normally would remember. Her mother-in-law, for example, couldn't find the right word or remember her phone number.

Patients also begin showing changes in personality, such as becoming more reclusive and no longer engaging in activities they previously had enjoyed, Kronenberger said.

Forgetting simple things such as an address can make patients want to isolate themselves so they don't feel embarrassed, Green pointed out. Alzheimer's also can generate intense anxiety and fear as the patient's surroundings start to become increasingly unfamiliar, Kronenberger added.

Kronenberger said her mom also became less inhibited, saying things that were inappropriate that she never would have said before, which could embarrass those around her.

Growing anxiety and reclusiveness can really take a toll on the caregiver. If the caregiver is stuck at home all day with his or her loved one, Green said it can also cause him or her to feel isolated.

"As the disease progresses, it's very difficult to leave someone at home alone. So you become isolated and a prisoner in what's going on," she added.

Interacting with the patient becomes increasingly difficult and can be frustrating, both women said.

"Communicating with her early on was annoying because she would repeat herself over and over again," Kronenberger recalled. "I couldn't get angry because it's not her fault. You just have to act like you're hearing it for the first time."

To try to communicate with their loved ones, Green and Kronenberger said they often spoke in short sentences like they would to a toddler.

Accomplishing everyday tasks becomes increasingly difficult for those with Alzheimer's, Kronenberger said. So caregivers must try not to get frustrated and try not to correct them or explain anything.

"You can't say, 'No, don't do that' and expect them to learn from that the way a child would," she explained. "They lose their ability to learn, to reason. So you just have to help them through tasks, to nudge them and guide them, baby step by baby step, as gently as possible. And then be ready to do it all over again the next day, only you're giving even more help until one day you're doing everything for them. It's like the opposite of raising a child."

Because the disease is so terrible, it's important to try to turn frustrating situations into something to laugh about, Kronenberger said. But sometimes all a caregiver can do is stop and walk away from the situation. She admitted to often escaping to a quiet room just to sit and cry. Then after a bit she would regain composure and be ready to return with renewed patience.

Taking care of a loved one with Alzheimer's can become overwhelming, they said. No matter how hard it gets to see a loved one deal with the disease, Green and Kronenberger said caregivers must not take it personally.

"They are not doing this to you," Green said. "They are not doing this on purpose."

Alzheimer's can make a patient develop a fear of water, Green pointed out. Kronenberger said her mom became violent when she tried to get her to take a shower.

"She would hit me, kick me, bite me, anything, and all I could do was bite my lip because I knew this wasn't my mother doing this," she said. "After she got into the shower, she always stopped fighting and said, 'I hate you,' and I would reply 'well, I love you, and you can fight me all you want, but I'm not going to leave you. I'm here for you no matter what.' That would calm her down, and I would seize the opportunity to do or say something silly to make her laugh."

Watching the patient become a shadow of his or her former self is a grieving process all of its own, Green said.

"My mother-in-law is so dead in the eyes. This is a woman who has a master's degree, was a voracious reader and traveled the world. It makes it very sad because I know if she knew what was going to happen to her, she probably would have begged us to do something so she wouldn't get to this point in the fight for her dignity to the very end because everyone deserves that."

Kronenberger recalled "it felt like a knife to the heart" the first time her mom referred to her as "that lady."

She said she mourned the loss of her mother not when she died but when she ceased to be the woman she had been.

"It was difficult to process then, and it's really difficult to explain now, but I would look at this woman and know this is my mom, and I love her dearly and always will, but at the same time, this shell of a person is the disease, not her," she said.

The disease took her mom's life in May 2016, when she was 76 years old, 20 years after she started showing signs. By that time, Kronenberger said she felt relieved because her mom "was free from this prison," and her funeral was more of a celebration than a time for mourning.

Kronenberger said caregivers must always remember they are not alone and help is available. The Northwest Ohio Chapter of the Alzheimer's Association in Lima offers services and resources for caregivers. People can find help at alz.org/crf or by calling the organization's helpline at 800-272-3900.