Devastating disease takes toll on patients, caregivers

Devastating disease takes toll on patients, caregivers

EDITORS’ NOTE:  After this story on Alzheimer’s was finished but before it was posted online, one of the people in the story died. Joe Peterman’s wife, Hildred, was consulted, and she felt strongly the story should still appear so that others would understand more about this devastating disease and the challenges caregivers face.

When Hildred and Joe Peterman married in 1947, Hildred never imagined that 63 years later she would wake up every morning to care for a husband who often forgets who she is. The Petermans are not alone in this daily struggle. Currently, more than five million Americans are living with Alzheimer’s.

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month, but those who have loved ones with the disease work every day of the year to give comfort and to find some normalcy in their lives.

Alzheimer’s is a disease that affects the functioning of the brain. Very little is known about the disease or its cause, and no cure currently exists. Scientists do believe a combination of genetic, lifestyle and environmental factors triggers symptoms. It’s also very clear that Alzheimer’s damages and kills brain cells, proving it is a physical disease, not just a mental disease. There are three stages to Alzheimer’s: mild, moderate and severe. The farther a person develops into each stage, the more difficult it becomes to function.

‘Where is my wife?’

Joe suffers from macular degeneration (an age-related blurring of vision), arthritis and the late stages of Alzheimer’s. His wife helps him with countless tasks every day, including bathing, feeding and walking. She has caretakers and nurses come in daily to help her with lifting and bathing Joe, and their son and daughter often stop by to visit and help when they can. Other than that, though, Hildred Peterman takes sole responsibility for Joe 24 hours a day.

According to the Alzheimer’s Association, people with late-stage Alzheimer’s, such as Joe, need intensive, around-the-clock assistance. However, sometimes the stress of taking care of Joe takes a toll on Hildred and she needs to get away. “Once I week, I take the fun cart around the retirement home where we live and hand out ice cream. I leave Joe with a caretaker and try to get away for a little while,” she said. “I have to get time away and revitalize.”

When a person with Alzheimer’s forgets simple things such as the date or how to use the remote control, it can be stressful. But when the person starts to forget loved ones, it can be absolutely devastating. “The hardest part is when Joe doesn’t remember our kids or when he looks at me and says, ‘Where is my wife?’” Hildred said.

Contrary to what many people believe, Alzheimer’s is not a part of normal aging. It is normal to forget some things as people age, but Alzheimer’s is a much more serious disease that not only can affect the way a person functions, but can also lead to death by malnutrition and infection. So far, only two medications have been approved the Food and Drug Administration, and they only slow the effects that Alzheimer’s might have on the brain.

‘I want to go home’

Kettering resident April Mullins was a stay-at-home mom when her father developed Alzheimer’s, and she decided to take care of him full-time. Mullins often found herself stressed with the responsibilities of taking care of her sick father, who also had a brain tumor, and raising her little boy.

She recalls the day she made this huge commitment and brought her father home from the hospital. “The hardest part was bringing him to the home he lived in for 40 years and he looks at you and says, ‘I want to go home,’” she said. “So what we would do take him outside, walk around for a little while, then come back inside, and that would pacify things for a bit.”

Mullins’ father, Harry Michael Jr. (also known as “Shorty”), suffered from Alzheimer’s for five years before passing away in 1997.

Mullins says her father often asked about his wife, who had already passed; he had forgotten she was dead. However, she said Shorty never forgot his grandson, Brad, even in his later stages of the disease. Experts say this is typical in Alzheimer’s patients; often one thing or person sticks in the patient’s mind and stays with him when everything else disappears. 

‘You can’t do it alone’

Mullins and Hildred Peterman have much in common. They agree that caretakers have to get away and leave time for themselves. “You can’t do it alone,” Mullins said. “You have to reach out and get help because it’s difficult for the whole family. It’s also good to have a laugh if all else fails.”

Another difficulty both Mullins and Hildred Peterman have faced is lack of sleep. “You have to watch them all the time,” Mullins said, referring to Alzheimer’s patients. “Even if they’re asleep and you think it’s safe for you to go to sleep, too … no, you can’t. They could wake up after being asleep only an hour and think they have slept a full eight or ten.”

Hildred Peterman agrees that night time brings little relief. “Sometimes I sleep hardly at all during the night … just keeping an eye on Joe,” she said.

Job gives writer insight on Alzheimer’s

Working at The Grand Court Retirement Home where Joe and Hildred live, I understand what both April and Hildred have experienced. I’m far from an expert on the subject of Alzheimer’s, but I witness the effects of this terrible disease on a daily basis. That’s why doing this story hit so close to home.

I see many Alzheimer’s patients get their days and nights confused and come down at dinner time asking for breakfast because they think it’s morning. I also see how their faces light up when a family member comes to visit and how sad they can be when the family leaves. It can be just as hard for the families as well because I can tell by the look on their faces that their hearts break when the patient doesn’t remember them.

Another very difficult part of my job is getting close to residents and having them pass away. This was the case in my experience with Joe and Hildred because soon after conducting my interview, Joe passed away.

The most common thing I experience with Alzheimer’s patients is their repetition of questions. I have had people ask me the date every time I walk by, or ask for another cup of coffee when they have a fresh one sitting right in front of them.

Experts say that if you’re dealing with someone suffering from Alzheimer’s, it’s critical that you remember to be patient. Alzheimer’s patients can easily become frustrated, but if you stay calm, it will help them to stay calm. Some other tips are to be as understanding as possible and give the person unconditional love.

And caregivers should not be ashamed to reach out for help from hotlines or the Alzheimer’s Association. Alzheimer’s can’t be fought by one person alone; it requires a whole support system.

For more information

By Mail: Alzheimer’s Association Miami Valley Chapter, 3797 Summit Glen Dr, Ste G100, Dayton, Ohio, 45449 or Alzheimer’s Association National Office, 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601

By Phone: Dayton: 937-291-3332 Toll Free: 24 Hour Assistance-800-272-3900

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