What's it like for the family of an Alzheimer's patient
May 31st 2011 22:43
Family shares what living with Alzheimer's is really like
MARIETTA - Mildred Rutherford, 93, grew up in Austell as the eldest of five children, and as an adult, worked as a Sears, Roebuck and Co. statistician for more than 40-years before retiring in the early 1980s. Single with no children, she spent years traveling around the world.
Her small apartment in WellStar's Atherton Place, an assisted living community in Marietta, is filled with keepsakes dating back generations and 25 photo albums, which signify her place as her family's historian. But much like those items, the cherished memories she's collected over nine decades are gradually fading.
Rutherford developed Alzheimer's disease roughly three years ago. Before that, she lived independently. Then her family began to notice she had problems remembering things. After her 90th birthday, she got lost for nearly 24 hours while driving and ended up in south Georgia, said her niece, Barbara LoRusso of Marietta.
It was LoRusso, Rutherford's closest relative, who decided in April 2008 to place Rutherford at Atherton Place on Tower Road.
After some episodes involving wandering around and forgetting to take her medication, Rutherford was moved into Atherton's memory care unit, which opened in August 2009. The staff has been trained by the Alzheimer's Association and the supervisor leads a monthly support group for families.
Across the United States, between 2.4 million and 5.1 million Americans have Alzheimer's, according to the National Institute on Aging.
Because the risk of Alzheimer's increases with age, the number of people with the disease is expected to increase significantly as the country's population of people age 65 and older increases.
Marietta neurologist Marat Reyzelman said he's always seeing new patients.
"Since baby boomers are reaching their 70s and 80s, more of them will develop dementia," he said.
Alzheimer's is the most common form of dementia and causes problems with memory, thinking and behavior, according to the Alzheimer's Association. As a progressive disease, symptoms such as memory loss, disorientation and difficulty speaking, swallowing and walking worsen with time.
Though medications can slow down symptoms, there is no known cure. The Alzheimer's Association estimates that more than 200,000 Georgians suffer from the disease, not including nearly 500,000 others who act as caregivers.
For relatives of Alzheimer's patients, the emotional and financial tolls can be great.
Five years ago, LoRusso's own mother, Alline Gore, died as a result of Alzheimer's. LoRusso said she regrets note spending more time with her mother, a mistake she doesn't want to repeat with her aunt.
So after 17 years a corporate manager, LoRusso quit her job to care for Rutherford and other relatives. Both her father, Harold Gore, and father-in-law, Joseph LoRusso, are independent residents at Atherton. LoRosso and her husband, Lance, an attorney, spend a great deal of time with their family. They have no children.
"Safety is one of my biggest concerns," LoRusso, 45, said of her aunt.
"With dementia you lose your loved one slowly over many years before they pass away. I feel like I did not really have a mom for five or more years before she passed. Many times their body is strong for their age, but their minds betray them. It is a helpless feeling and you are always worried about them."
Regarding living with Alzheimer's, Rutherford said, "I guess I remember enough."
She was born in September 1917, the first child in a family that would ultimately have three girls and two boys. Rutherford's father moved the family to Austell from Douglasville, when he developed emphysema and could no longer farm, according to the family. In Austell, he ran an ice house and later a Texaco station. Her youngest brother, and only remaining sibling, lives in Toccoa.
Finding a job, particularly as a woman, during the Great Depression was a blessing for Rutherford, who said that although she never married, she enjoyed many dates. Her travels took her across the U.S., Europe, Asia and the Caribbean.
Caregivers described Rutherford's level of functioning with Alzheimer's as about average. She is in relative good health, being able to walk on her own and play the piano sometimes. But her short-term memory is a problem.
"She can't remember that she just told you a story a few minutes ago, but she remembers the story well," said LoRusso said. "We can go to church and lunch, but when we return, she will not remember where we have been. It requires a lot of patience because of the repetition and the need to provide lots of reminders."
For many families, the cost of caring for someone with Alzheimer's is an additional burden, considering visits to doctors, medications and caregivers. Fortunately for LoRusso, both of her parents bought long-term care insurance and her aunt saved money before her retirement.
Facilities like Atherton Place's memory-care unit help to relieve some other burdens.
The unit has a capacity of 16 patients who are supervised around the clock by a staff of 15. Regular activities are designed to work as therapy and involve talking about the past, word games, music, cooking and even Bingo, which require cognitive ability, said Amy Saye, the unit coordinator.
Families of Alzheimer's patients often show a gamut of emotions, she said.
"It is sad because they are losing the people they love very slowly. But it is happy because we're able to relieve some of that caregiver burden that is so stressful," Saye said. "And once that caregiver burden is lessened, the caregiver is still involved."
In April, the journal Alzheimer's & Dementia identified new guidelines by the Alzheimer's Association and National Institutes of Health that describe three stages of the Alzheimer's spectrum, in an effort to detect the disease earlier.
The stages include a preclinical phase solely for research purposes, mild cognitive impairment in which a person shows small changes in memory, and then full-blown Alzheimer's that prevents the patient from carrying out basic daily tasks.
An official diagnosis of Alzheimer's is not possible until a brain biopsy after death. However, detecting early signs such as trouble with memory or mood changes, are key in seeking help for people suspected of having Alzheimer's, said Reyzelman, the Marietta neurologist.
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