Life lessons drive man with mild cognitive impairment to help others
While everyone hopes for a scientific breakthrough that will cure Alzheimer’s disease, a cure will never come into existence without help from the average citizen. Scientists will never know whether Alzheimer’s drugs serve their purpose without people who volunteer to become subjects in clinical trials. Elizabeth Landau, a health writer and producer for CNN, authored a piece that centers on a volunteer, who suffers from mild cognitive impairment (MCI). The article also delivers some information about participating in clinical trials. It is hard for Phil Kreitner, age 71, to get the life lessons drummed into him by his father out of his head. His father died from complications of Alzheimer’s, but during the elder Kreitner’s 12-year battle with the disease, only once did he acknowledge that he was suffering from memory loss. Phil Kreitner vows he will never end up in a nursing home, but he admits that he does suffer from memory problems. His father taught him that each person has a responsibility to the collective and that no man is an island, Landau wrote. It is that attitude that compelled Kreitner to participate in a clinical trial that investigates a drug for patients with MCI. Landau uses her subject to provide some details about clinical trials. Not many people are game to enroll in a trial, and if they do, they want assurances that they will receive the experimental drug. That is not how researchers test their medicines and the typical standard for scientifically valid medical analyses are “double-blind” studies. In double-blind studies, no one, including the researchers, knows who is getting the actual drug. That actuality is fine for Kreitner, he just wants to do his part and help others. For patients suffering from MCI, it is not certain whether they will develop Alzheimer’s disease. Kreitner is not sure what the future holds for him, but he set a goal to write a book, or at least a 1,500-word article, on his views of the world that will get his “fellow humans to start thinking like a species.”
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Caregivers should recognize the fine line between independence and safety
Caregivers assisting patients with Alzheimer’s disease not only help them with the activities associated with daily living, they also have to keep their loved ones safe from harm. A few years after a diagnosis of Alzheimer’s disease, it may be fine to leave a loved one in the car or on a bench while the primary caregiver runs into a store to shop. However, as the disease advances and affects more of a person’s cognition, the situation may call for some adjustments. Dotty St. Amand, a columnist and the executive director of the Alvin A. Dubin Alzheimer’s Resource Center in Fort Myers, Fla., writes that it is important to acknowledge changes in a love one’s judgment as memory impairment progresses. To ensure safety, we must make appropriate accommodations, she said. Since many caregivers are spouses or other family members, they want to allow their loved one to have as much freedom and independence as possible, but safety should always be a concern. As Alzheimer’s progresses along its course, caregivers need to note how the progression affects their loved one. While it may be fine on most days to leave the loved one on the bench, there is always the risk that the next time will not be such a good day for your loved one in terms of orientation, judgment, and short-term memory, Amand wrote. This presents a suitable time for caregivers to initiate adjustments that mirror the changes occurring in the patient with Alzheimer’s disease. As Alzheimer’s marches on in its progression, patients may need more cuing and increased supervision to perform or participate in routine tasks, Amand wrote. To facilitate these changes, caregivers should be aware of their loved one’s condition, strategize to eliminate some issues, and adjust their expectations. While treating their loved one with respect and dignity is a primary concern, keeping them safe should always be a top priority.
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In spite of Alzheimer’s, daughter still sees her mother’s light
Alzheimer’s disease is a progressive condition that gradually erodes an individual’s cognitive function, but also changes the way others, including family members, see the loved one with the disease. Columnist Donna Douglas writes that Alzheimer’s starts slowly for some patients, while for other patients its starts suddenly and progresses quickly, forcing its presence onto previously bright people. Douglas, who provides a variety of services as a business consultant to a broad spectrum of clients, says Alzheimer’s has not dimmed her mother’s light. Her mother is living with Alzheimer’s, but the condition has changed things a bit. Looking back, Douglas says she cannot remember when her mother stopped calling her on the telephone. But it happened. For nine years, Douglas’ sister served as the primary caregiver. At first, their mother lived in a lower level apartment on the first floor, right under the sister and her husband. Family members set up a complete workshop with tools and a workbench. Douglas was happy with the reports from her sister that told of hearing the radio and a sander in full operation at the same time. Over time, sounds from the sander ceased, leaving Douglas to wonder when her mother last built something. Douglas’ sister moved their mother into a single room next to her and her husband’s. At the start of the column, Douglas, her first husband, and her sister were taking their mother to a long-term care home. Near the end of the drive, a tear settled on her mother’s left cheek. Their mother asked: Do I have to live there? Douglas held her composure and answered: This has to work for all of us. To lessen the stress of the move, Douglas and her family members brought many of her mother’s things to her new home. In her room, they set up her stuff in the exact same way she left it in the room next to her daughter’s. Their efforts produced a joyful expression in their mother. It was as if she had always lived there, Douglas wrote. It seemed as if Douglas saw her mother’s light once again.
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Announcements of AD diagnoses may empower others to continue their employment
The announcements by Pat Summitt and Glenn Campbell that acknowledged their diagnosis of Alzheimer’s disease was a tough thing to do for someone in the spotlight. While they acknowledged the condition is having some effects, both said they would carry on with their duties. Andrea Kay, a career consultant and author, tells us that the decision to continue their careers is a good thing. When people stop being productive in some fashion, it is hard on them, and it is probably not good for what happens in the disease, said Susan Gilster, the executive director of The Alois Alzheimer Center in Cincinnati. As a coach, Summitt may have a few more people helping her, while Campbell might add a few more cue cards around the stage. The way they used to work will change; their roles may be somewhat limited or morph into something very new. However, is it OK for anyone diagnosed with Alzheimer’s to continue working at his or her job? Kay also wonders if it is even wise to tell your employer that you have been diagnosed with Alzheimer’s. Much like two individuals, no two jobs are the same. If you hold a job that involves making decisions that affect other people’s lives, you should probably step down, Gilster said. The symptoms of mild cognitive impairment and Alzheimer’s occur slowly over time, so they probably would not be that noticeable at first. Gilster said she has seen some people maintain their ability to do their jobs well into the disease. After a while, little mistakes are noticed, but some colleagues may pitch in to make sure things are proceeding smoothly. If an employee decides to announce his diagnosis, others will have to allow for behavioral changes, such as taking longer to accomplish a task, Kay wrote. As the disease progresses, the employee will have to ask him or herself whether they can still do the job. With role models like Campbell and Summitt, the path forward contains the footprints of some worthy trailblazers.
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If it eases the process, it is OK for a caregiver to lie
Our parents always taught us to be honest. You have lived that lesson throughout your life, but now it may be time to set that lesson aside. That is the gist of the latest post by Bob DeMarco on his Alzheimer’s Reading Room Web site. In order to get their loved ones with Alzheimer’s disease to do something, DeMarco told his readers it was OK to lie. One of his regular readers, Jocelyn, wrote that she could lie to him, but she could not bring herself to do that. Jocelyn was trying everything to get her loved one, Paul, to take a shower. She thought of lying, telling Paul that they were going to Wellington, a place he apparently loves, as a way to get him to shower. Maybe her resistance to lying stems from guilt or the fact that she knows they are not going to Wellington. It is not known why people with Alzheimer’s dislike taking showers, but DeMarco says it is probably because of the changes that the disease causes in their brains. Once the disease advances, it is not wise to try to force the person with Alzheimer’s to think as if they were of sound mind, he wrote. DeMarco says that living with dementia requires a new way of thinking and that the caregiver is now a resident of “Alzheimer’s World.” In “Alzheimer’s World” it is OK to lie, he wrote. In that world the key is doing what is best for the person living with Alzheimer’s, he wrote. With additional advice, DeMarco said doing what is in the best interest of a person living with Alzheimer’s always trumps the means we use to get them to do it. Jocelyn knows that Paul will probably forget all about Wellington by the time he finishes his shower. DeMarco said you could reward your loved one with a big kiss after the shower and a bowl of ice cream, if you do not keep your, uh, “promise.”
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Experiences as a caregiver developed into maxims for others
Most family caregivers do not seek the role and many of them probably have no idea about the breadth of responsibility the duty calls for. When her mother needed her, Mynga Futrell, a family caregiver and a former professor who taught science at Sacramento State, moved herself and her husband from California to Kentucky to answer the plea. Reporter Rachael Riggs, in a piece for the Times-Standard, uses a presentation by Futrell to narrate the caregiver’s experiences and highlight what she learned as maxims for other caregivers. “Caregiving is a life interrupted” is how Futrell describes her experience. Alzheimer’s is a downhill trip for your loved one; you cannot let it take you down, too, Futrell said. From acquiring more information about Alzheimer’s and referring to her mother’s life experiences, Futrell learned how to manage the challenges that caring for someone with Alzheimer’s faces, Riggs wrote. Some of what she learned required Futrell to change herself, so she went from being her mother’s daughter to her mother’s friend. She eventually started calling her mother by her first name, Hazel. From her training and the experience she gained, Futrell shared nine maxims during her presentation. To summarize a few of them, Futrell says a caregiver’s work is never done; when truth and kindness conflict, choose kindness; cleanliness is next to “__________”; what is good for the goose is good for the gander; and do not sweat the small stuff. Actions speak louder than words, is one of her first maxims. Before caregivers approach their loved one, take a moment to do a quick examination to see how they present themselves, Futrell said. Her third maxim reminds us that compassion starts at home. Although being a caregiver can be exhausting, try to always hold compassion in your heart for your loved one, she said. In another truism, Futrell asks, “Is honesty the best policy?” No she says, creativity and inventiveness are. Another maxim advises us: Do not put off until tomorrow what you can do [better] today. Here Futrell wants us to consider asking for outside help before it is too late. Riggs adds a few more maxims that should help caregivers manage their responsibilities.
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