Alzheimer’s caregiver shares tips for the road ahead

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OKLAHOMA CITY - For most couples, there comes a day when the kids are grown, and our own youth has faded. But the love that brought them together in the first place changes and evolves. We grow old together. However, it is not always in sync. Sometimes the mind goes far before anything else.

"It's very difficult, because you're watching them decline and their frustration,” Carol Goodwin said. “In the beginning they have so many frustrations, because they know something's not right . So it's really difficult for both. Eventually it just becomes difficult for the caregiver."

Carol's come face to face with Alzheimer's three times. She's seen in it in the faces of first her mother, her mother in law and then her husband. A battle that's never won but hard fought. Carol's husband was diagnosed with early onset Alzheimer's, but he showed signs of it long before.

"He was diagnosed at 62, but that is only because he would not go to the doctor sooner,” she said.

Carol soon found herself the sole breadwinner of the family - a full time job. And before long a full time job at home, too, caring for her husband.

"And then gradually the exhaustion just takes over and you go I can't keep working and then come home and work and be up all night and then go back to work,” Goodwin said.

She retired early but an earlier diagnosis may have helped alleviate some of that stress. Getting a diagnosis isn't always because of the patients denial that something's wrong. Sometimes it can be the doctor.

"They would really rather say that this is anything but." "And why is that?" "Alzheimer’s and dementia have a very...they have a stigma,”advocate Meg Busteed said. "It's a death sentence. There is no cure."

After a five year battle, Carol's husband passed away just two and a half months ago.

"There are a lot of decisions that people need to make that are very hard and a lot of the time that they don't even consider these decisions until they're in the thick of this disease,” Busteed said.

Meg Busteed is an advocate for the Alzheimer's association. She meets with family members and caregivers, because she was once one herself. Her stepfather lived with it for more than two decades. He was a college professor. It's hard watching even the most brilliant minds crippled by the grips of Alzheimer's. Like many struggling with early symptoms, Meg's stepfather would hide what was happening. Hindsight reveals that now.

"Try to join their reality, because they're having a really hard time joining ours,” Busteed said.

To join his, Meg would play Johnny Cash and they'd drive all over the countryside, and he somehow remembered every word. What this disease takes or leaves is anyone's guess. Research will hopefully one day figure that out. Until then, it's a reality we all could one day face, and how we choose to join it....Could make all the difference.

One of the first things to do is get power of attorney to legally make life decisions for your loved one. It is also important to ask for help and to receive help that is offered. For more information on free 24-7 counseling, information and more visit https://www.alz.org/oklahoma.

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