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Home for the holidays
Seventy percent of Alzheimer’s patients live at home
They call it “The Long Goodbye.”Anyone who has ever had a friend or loved one with Alzheimer’s disease understands why. From the earliest stages to the final farewell, it slowly and stealthily affects the brain, stealing away memory bit by bit. At first, its victims become forgetful. Later, the person is still there, but in body only. It is a painful way to say goodbye.
This is the journey of Wilbur Cammauf.
Cammauf, 89, and his late wife Betty are well-known in the Rothsville and Warwick Township area. He ran a painting and wallpapering business for many years. Betty continued a tradition started by her mother, Pauline Houser, presenting the tiara and roses to the Halloween Queen at the Rothsville Halloween Parade for as long as anyone can remember.
In 2011, Wilbur was beginning to become forgetful and Betty was fighting cancer. She lost her battle in May 2011.
They lived at their Disston View Drive home most of their marriage. Betty had even named the road because it overlooked the one-time village of Disston.
When Betty died, the family knew that Wilbur could not be alone. Initially, the family thought a retirement home might be best. Ultimately, their son Rick and his wife Carol decided to care for him at their home. Rick had taken over the family painting business, and he spent a lot of time with his father hunting in the mountains and staying at their Potter County cabin.
“I wanted to do this for Dad,” says Rick. Carol agreed.
Carol is in the healthcare field, working in MRI for Lancaster General. She says that may have influenced her commitment to caring for her father-in-law at home. She is used to hospitals, healthcare and guiding patients through medical testing.
“You have to be a very patient person to care for a loved one at home,” says Carol. “We didn’t have children, and now we kind of do with Dad.”
The Cammaufs scheduled a medical evaluation for Wilbur. As they suspected, his family doctor diagnosed him with Alzheimer’s through a series of memory tests.
The early stages are difficult to pinpoint, says Carol. Her father-in-law needs to be reminded to brush his teeth, take a shower, put on clean clothes and eat. He still reads the newspaper every day and comments on the news. He also plays word puzzles that seem to help his memory. The doctor prescribed Aricept, a medication that keeps him at a plateau.
“He hasn’t gotten any worse; seems to be staying about the same,” says Carol.
She noticed that he seemed very lost and lonely after Betty died. His wife did all the cooking, as is often the case with older couples. They took care of each other. As a result, Wilbur never learned even the basics of cooking an egg or making a sandwich.
“In many ways, I am filling the role that Betty did, guiding him through his daily routine, making sure he gets good meals and does simple things like brushing his teeth,” she explained.
When Carol and Rick are at work, they feel more comfortable having in-home care for Dad. Caregivers from Home Instead Senior Care stay with him, to gently nudge him to keep active and involved. They also make sure he eats, showers and that he is safe.
“An estimated 70 percent of people with Alzheimer’s live at home,” says John Gibbel, co-owner of Home Instead Senior Care, “and the responsibility of caring for them usually falls on their families, who must face the unexpected and unknown.”
As he points out, according to experts, Alzheimer’s either is or may someday be a reality for about one-third of the families in our community.
The Cammaufs try to keep their father’s life as normal as possible, taking him on vacations to his beloved Potter County and going to church on Sundays at their long-time Salem United Methodist Church.
“He is doing well, for now,” says Carol. “We are grateful that he knows who we are and hasn’t declined since he was first diagnosed. But we realize that Alzheimer’s can change all that and we don’t know what the future will bring.”
Stories like this are becoming more familiar. On a personal note, I watched my own wonderful grandfather-in-law “disappear” slowly many years ago. Although he was not definitively diagnosed with Alzheimer’s, he had Alzheimer’s-like symptoms that began with a minor traffic accident when he pulled out in front of another car. The family felt helpless as a once-vital and lively man became forgetful and unpredictable.
I remember “watching” Grandpa while Grandma had a doctor’s appointment or just needed to go out with her daughter to get groceries. I had a toddler myself then – a great-granddaughter he had adored and even babysat from time to time before his illness. One day when I was watching Grandpa, I fixed him a cup of coffee. A few moments later, he walked to the closet, opened the door and started to pour the coffee into the closet.
I followed him all around his home, as he flushed toilets for no reason, turned on the dishwasher and wandered about. It was obvious he could never be left alone. It was more challenging to watch an 80-year-old man than an 18-month-old child. In time, he became more agitated, even paranoid. It was too much for Grandma, and he spent his last years at Pleasant View Retirement Home, then Lancashire Hall. In the end, he didn’t know who we were. He sat slumped in a chair until he could no longer remember how to eat, or even to breathe.
It was indeed a long goodbye to a man who will always be dearly missed.
In the earlier stages of Alzheimer’s, families may be able to care for their loved ones at home. But they usually need help, from organizations like Home Instead Senior Care or Senior Helpers, an Ephrata company that offers companion and personal care services. They are also able to help families determine the stages of Alzheimer’s, and how to best care for loved ones at home in the early stages.
According to the Alzheimer’s Association, Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys memory and thinking skills, and eventually even the ability to carry out the simplest tasks. It is not a normal part of aging, although the majority of people with Alzheimer’s are 65 and older. Some may develop Alzheimer’s as young as in their 40s or 50s. Estimates vary, but as many as 5.1 million Americans may have Alzheimer’s disease.
Alzheimer’s disease is named after Dr. Alois Alzheimer. Back in 1906, he was the first to notice changes in the brain tissue of a woman who had died from a mental illness that caused memory loss, language problems and unpredictable behavior. He discovered abnormal clumps and tangles in the brain.
Since then, studies have shown that Alzheimer’s progresses through mild stages of forgetfulness to more serious memory loss and confusion. Eventually, the brain shuts down, along with basic body functions. It may be four years or as long as 20 years for Alzheimer’s to take its inevitable course.
Anyone who has ever lost a loved one to Alzheimer’s knows how painful that long goodbye can be.
November is National Alzheimer’s Month, and while the month may be coming to an end, the associated challenges will continue into the holidays and beyond.
For more information on Alzheimer’s, contact the Alzheimer’s Association at alz.org. For home care and other resources, contact Home Instead Senior Care at helpforalzheimersfamilies.com or call the local office 207-0755. Information and care is also available at Senior Helpers at seniorhelpers.com/lancastercounty, or by calling 738-0588. Area retirement communities, such as Moravian Manor, can also provide resources, information and care for Alzheimer’s patients.