Caregiver shares her wisdom with others, even though her duties have ended
Diane Sperow took on the role of caregiver like many others; she had no formal training and was not adequately prepared for the responsibility. As she noticed signs of forgetfulness in her father, Harold Christman, she assumed it was just a part of normal aging. She and her husband moved next door to her dad to help him out around the house. As time passed, she realized it was more than just occasional forgetfulness, even Christman noticed something was wrong, reporter Sue Wilson wrote for a piece in the Reading Eagle. Sperow said dealing with Alzheimer’s disease was like a roller coaster ride. She compared the experience of caring for her father to dealing with a child, except that her father lived alone in his own house. Sperow watched as the disease changed her father from an independent, hardworking person to someone who relied on her to do everything for him. She credits her husband for helping her through the journey, noting that without his help, she had no idea what she would have done. After her dad required round-the-clock care, they opted to put him in an adult daycare facility. A few years later, they obtained in-home care when he started having health issues. One day Sperow read an advertisement in a local paper about an Alzheimer’s disease seminar that was being held at the daycare facility her father attended. She and her husband found the seminar so helpful that she started attending monthly meetings. During one of the meetings, she met an associate director of a local chapter of the Alzheimer’s Association who helped her get some funding to pay for her father’s in-home care. Sperow found the support so uplifting that she is still involved with the Alzheimer’s support group, even though her father died at age 86 in February 1998, Wilson wrote. Sperow participates in the annual “Walk to End Alzheimer’s” every year with her daughter. Now, instead of being an attendee at the support group meetings, she helps answer questions from the audience. So, years after her father died from complications of Alzheimer’s disease, Sperow is taking the lessons she learned and imparting her wisdom to others who are looking for answers –– just like she was when she sat in their seats years ago.
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After diagnosis: “Life is good” for patient with early onset Alzheimer’s disease
Speaking out about the affects of Alzheimer’s disease is noteworthy, but first you have to admit to yourself that you have the condition. Jim Mann knew the symptoms of memory loss because his mother suffered from dementia when she was in her 70s. He did not want to admit to the facts, so he got creative and used techniques to help him along the way, wrote Elaine O’Connor, a reporter for The Province. While he used various methods to help him at work and with the activities of daily living, he knew he had to do something after he repeatedly got lost while driving. He wrote down his problems and gave them to his doctor. After conducting tests, the doctor diagnosed Mann with early onset Alzheimer’s; Mann was 58 years old. He referred to his diagnosis as a relief. When you get the label, you think OK, at least now there is a reason, he said. O’Connor wrote that you probably would not guess Mann has Alzheimer’s disease, but she contributes that to his former profession as a government lobbyist with Canadian Airlines. He experiences lapses, but he says you have to write everything down to counter them. With his practiced techniques to offset his failing memory, Mann uses his public relations skills to advocate for the needs of people with dementia, O’Connor wrote. Being an advocate is something he enjoys and he credits his work with the Alzheimer Society of British Columbia and the national society, as key to his sense of purpose. With my mother having dementia and then myself, I have seen the need for advocacy, especially looking at issues of good dementia care, Mann said. He also attends Alzheimer’s conferences and meetings, writes letters to the editor, and speaks to groups about the issues he faces after his diagnosis. Unless you break the stereotype, attitudes will not change, Mann said. After admitting he suffers from Alzheimer’s disease, Mann has given up some things, but his upbeat personality is still evident. Life is good, he said. There is life after diagnosis, he added.
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NAPA listening events allow Alzheimer’s caregivers to voice their concerns
Across the nation, patients with Alzheimer’s disease and caregivers crowd into town hall meetings to voice their concerns in a bid to help shape the National Alzheimer’s Project Act (or NAPA). NAPA is the first endeavor by the United States government to establish a national strategic plan for Alzheimer’s disease. Mark Hare, who writes a column for the Democrat and Chronicle, based in Rochester, N.Y., wrote that many caregivers, at the listening event he attended, told wrenching stories of their fight to care for their loved one. The caregivers come to show their faces, share their stories, and tell government officials that they need assistance to help their loved ones battle Alzheimer’s disease. Government officials are holding the town hall meetings to collect data and personal stories as the U.S. begins to develop a national plan to address the pending Alzheimer’s disease epidemic. During the event held at Nazareth College, aging spouses, who serve as primary caregivers, told of their struggles to keep a wife or husband with Alzheimer’s at home, Hare wrote. Other caregivers related tales of trying to get assistance, but were told their loved ones were not old enough to take advantage of the services available in their communities. While the government officials may not have heard some of their stories, family members have first-hand experience at trying to find affordable care and knowledgeable facilities for patients with Alzheimer’s. At the town hall meetings, these caregivers are expressing their frustration at being turned away, not meeting all the requirements or lacking the monies to pay for expenses to provide a comfortable life for their loved one. An estimated 5.4 million patients are living with Alzheimer’s disease, according to a report by the Alzheimer’s Association. By 2050, most health care experts predict that nearly 16 million Americans will suffer from the condition. The objective of the NAPA project is to create a government entity that coordinates the country’s approach to research, treatment, and caregiving. One of the overall goals of the act is to speed up the development process of treatments designed to prevent, stop or reverse the course of Alzheimer’s disease.
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Teaching healthcare providers how to interact with Alzheimer’s patients
As a teenager, you may remember going to the doctor’s office and noted that the doctor never said a word to you. Your doctor may have greeted you, but after that slight interaction, everything was directed to your parents. Some patients with Alzheimer’s feel the same way, and that upsets them. In a piece for The Alzheimer’s Reading Room, Cindy Keith writes that some healthcare professionals may need some practical education. Keith, an author and nationally renowned speaker, believes that caregivers should provide some education to healthcare providers who do not freely interact with patients with Alzheimer’s. Even though patients in the latter stages of the disease may not be able to form intelligible sentences, they still know when they are being treated like a child, the author wrote. As a reminder to caregivers, Keith says it is always good to give patients with Alzheimer’s the illusion of control. The illusion gives patients a sense of purpose and a concrete example that you are still conscious of their concerns and needs. The writer offers some suggestions on how to mange a situation where the healthcare professional does not seem to know how to interact with patients with Alzheimer’s. The caregiver should don a new hat that says, “Teacher,” and remain pleasant at all times when interacting with healthcare providers. First, the caregiver should gently tell the doctor or nurse to speak directly to your loved one if they are ignoring them and addressing all comments and questions to you. Since the caregiver is generally there with the patient and doctor, the caregiver can always request a private meeting with the doctor to discuss sensitive issues. Like many people with an ailment, patients with Alzheimer’s do not need to be reminded of that fact during each visit. Make sure you reiterate this to the staff and suggest some alternative words that are more appealing to your loved one. Other suggestions include injecting some humor into the visit, reminding the healthcare provider to always tell your loved one something positive, and giving the patient the illusion of control over some decisions. For receptive healthcare staff, thank them when they get it right, Keith wrote. To have a more productive appointment, Keith says you can prepare the office for your loved one’s visit by letting them know in advance a few things about your patient with Alzheimer’s. If your attempts at making the visit more beneficial to the loved one has no effect, Keith says caregivers should let the office know exactly why you are choosing to seek care elsewhere. The whole goal of these suggestions is to improve the relationship among healthcare staff, the family, and the patient. When the patient with Alzheimer’s leaves the office, they should feel calm and somewhat relaxed, not angry and upset.
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Transitions from nursing homes to hospitals often ‘burdensome’ for Alzheimer’s patients
Once a person with Alzheimer’s reaches the end stages of the disease, keeping them on some sort of routine is one of the best things to do. However, with the disease and advanced age, some patients with Alzheimer’s may need some type of hospitalization, which could interrupt any schedule. A study by a team of researchers, from Brown University’s Warren Alpert Medical School, found that one-in-five patients with advanced Alzheimer’s, or other forms of severe dementia, will be shuttled from a nursing home to a hospital during the last few months of life. The study, lead by Dr. Joan Teno, a professor of health services, policy and practice, examined Medicare data from 2000 through 2007, reporter Serena Gordon wrote for HealthDay. The review looked at the records of nearly 475,000 patients with advanced mental and functional impairments who were in a nursing home at least 120 days before their deaths, Gordon wrote. If the hospitalization occurred in the last three days of life, if patients were sent to a different nursing home after hospitalization or if there were multiple hospitalizations during the last 90 days of life, the researchers classified these types of transitions as “burdensome.” These were people who had really advanced cognitive impairment and really impaired functional living; they could not perform normal tasks of daily living, Teno said. The study also found that the poorest areas of the country had higher rates of burdensome transitions and higher rates of poorer outcomes. Teno said she could achieve better outcomes by treating patients in the nursing home instead of providing treatment in a hospital. She tied the burdensome transitions, and poorer outcomes, to patients that are distressed due to a break in their routines. Payment from Medicare and Medicaid to nursing homes and hospitals contribute to burdensome transitions by offering additional incentives for patients who have been hospitalized, the study found. Dr. Joseph Ouslander, a professor and senior associate dean for geriatric programs at the Charles E. Schmidt College of Medicine at Florida Atlantic University, feels that patients and family members should be aware of the substantial risks of hospitalization. He believes the only way to combat the payment system is to reform the current laws on the books. But Teno offers a more simplified way. She said families could request a “Do not hospitalize” order, which prevents nursing homes from automatically sending a patient to the hospital without consulting with the family.
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Compensating the caregiver: What’s a caregiver worth?
Not everyone is willing to take on the role of caregiver, but anyone should be able to recognize the work and worth of a caregiver. A reader of Annie’s Mailbox, the syndicated advice column written by the editors of the “Ask Ann Landers” column, believes her family members do not value the job accomplished by a primary caregiver. The reader’s mother is a 93-year-old with Alzheimer’s disease. The reader’s son is the primary caregiver for his grandmother. The reader is at odds with her two sisters, believing the sister that controls their mother’s checkbox should compensate the grandson with a monthly wage. Caregiving is a full-time job, so the grandson does not have the time to work outside the house. Without a source of income, the grandson is one of thousands of unpaid caregivers who take on the responsibility out of love and commitment. The sister handling the money decided on a wage of $250 a month. That sent the reader’s blood boiling and she told her sister he needed a raise. The sister reluctantly agreed to give the grandson $500 a month. The reader also stated that her sisters have never spent a night in their mother’s house, so they have no idea of how the grandson cares for his grandmother. The whole mess is a source of friction among the sisters. The reader wrote to seek advice from the writers of Annie’s Mailbox, Kathy Mitchell and Marcy Sugar. The authors commended the reader’s son, but reminder her that grudges and resentfulness solves nothing. They suggested she contact a few companies in her Mom’s area to find out the average wage of a paid caregiver. Then, after gaining this information, she should present it to her sisters so they have a better understanding of the value of the job. Whether they decide to pay more money or not, the authors said her sisters can make it up to him by being more appreciative of his contributions.
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