Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

My Voice: Bring awareness, help for Huntington's Disease

Excerpt from: Argus Leader (click for full article)

 

May is “Huntington’s Disease (H.D.) Awareness Month,” and appropriate long-term care and housing options are needed now for South Dakota and surrounding states.The lack of appropriate long-term care and housing is not exclusively a local problem. Because our Sioux Valley chapter of HDSA is the only H.D. support group in South Dakota, we regularly support and counsel H.D. families throughout eastern South Dakota, southwestern Minnesota and northwestern Iowa. The next closest H.D. support groups are in Minneapolis, Iowa City, Fargo, Grand Forks, Denver and soon Omaha. While not every H.D. family attends support meetings, of those we serve, many probably will seek long-term care and housing options as their loved one’s H.D. advances.

Expense and Emotions in Preparing for Long-Term Care

Excerpt from: New York Times (click for full article)

 

Long term care policies pay for help with daily activities and care, like dressing, bathing and feeding, either at home or in an assisted-living facility or a nursing home. Without the coverage provided by the policy, Mr. Shapiro said, his father would be living in a nursing home — something Mr. Shapiro, who lives in Woodstock, N.Y., dreads. “I can’t imagine living in a nursing home,” he said in a phone interview. “The thought of it disturbs me.”

So this year, he conferred with an insurance broker and applied for coverage. He is waiting to hear back from two companies, but expects a policy for himself and his wife to cost several thousand dollars a year.

The emotional impact of witnessing the decline of a family member or helping to care for one is often the reason people seek coverage for long-term care, people who work in the aging field say.

“Anything relating to long-term care triggers a lot of emotions, because most of us want to believe we’ll never need it,” said Nora Dowd Eisenhower, economic security director at the National Council on Aging. Many people who consider the policies have firsthand experience caring for an aging parent, she said, and most of them want coverage that will pay for care in their homes.

Antibiotic-resistant ‘superbugs’ alarm health care industry

Excerpt from: Washington Times (click for full article)

 

Health officials are warning of the rise of the “superbugs” — bacteria and other pathogens that cannot be killed by modern medicine.

But many pharmaceutical companies are resisting the call to develop effective antibiotics and instead are shifting their resources to other products.

Exhibit A is AstraZeneca, one of the major companies still working on developing antibiotics.

Its new chief executive, Pascal Soriot, said Monday the drug giant was restructuring its workforce and will focus on three therapy areas: cancer, cardiovascular and metabolism disorders, and respiratory and inflammatory diseases. This means “reduced spending on anti-infectives,” according to Reuters.

Researcher: Cancer doctors need to recognize patients’ exhaustion

Excerpt from: The Oakland Press (click for full article)

 

A Wayne State University researcher said cancer doctors need to recognize the “sudden exhaustion syndrome” of patients undergoing cancer treatments and help them deal with it.

Horng-Shiuann Wu, Ph.D., assistant professor of nursing in the College of Nursing, is researching why some patients suffer from the exhaustion more than others.

 This type of exhaustion “goes far beyond just being tired,” said Wu, of Troy. “It’s more draining, more intense, lasts longer than typical fatigue and is often unexpected.

“Patients can suddenly become so exhausted they cannot move at all,” Wu said. One participant experienced an onset while being surveyed, causing her eyelids to droop and rendering her unable to form words.

Prevention Needed as CRE on the Rise in Hospitals, Long-Term Healthcare Facilities

Excerpt from: Infection Control Today (click for full article)

 

As the superbugs known as carbapenem-resistant Enterobacteriaceae (CRE) have continued to spread over the last decade with cases in at least 42 states, the Society for Healthcare Epidemiology of America (SHEA) urges healthcare professionals, facilities, patients and stakeholders to work together in an effort to prevent the bacteria from becoming a widespread epidemic.

“We can’t afford to wait until a large-scale outbreak occurs to fight these dangerous bacteria,” says Dr. Sara Cosgrove, who serves as a board member of SHEA. “To effectively combat bugs like CRE, we need to confront the problem at hand that has allowed them to thrive – the overuse of antibiotics in healthcare. We know that one-third of antibiotics prescribed to patients in hospitals are unnecessary. Excessive antibiotic use combined with failure of healthcare workers to wash hands before and after caring for patients allows these bugs to develop and spread and negatively impacts patients, hospitals, and our entire healthcare system.”

CDC’s Vital Signs report found that since some CRE is resistant to most available antibiotics, this makes the bacteria difficult to treat and can result in death in 50 percent of patients who become infected. Those most at risk include patients with complex medical issues or receive long-term care.

Common Causes of Caregiver Stress

Excerpt from: About.com (click for full article)

 

If you’ve been taking care of a chronically ill spouse or elderly parent, you may be feeling the effects of caregiver stress. If you’re feeling frustrated or overwhelmed, or are experiencing increased stress symptoms, you’re not alone. Providing this type of care can place a great deal of pressure on a person, and caregivers are often surprised by the amount of stress they feel. The link above lists just some of the pressures that many caregivers face.

Caring for a Disabled Parent

Excerpt from: About.com (click for full article)

 

Caring for a disabled parent can be a trying experience for the inexperienced. When a child goes from being an independent adult to perhaps suddenly caring for an aging parent, the dynamics of their relationship is flipped. To make things more difficult, the parent may be an unwilling participant, resisting help and saying things that may cause hurt feelings. If you have found yourself in this predicament, take heart. It is possible to continue to be a thoughtful caregiver without being beat up, figuratively or literally, in the process.

Good Health Habits and Food Safety

Excerpt from: Bella Online (click for full article)

 

Practicing appropriate cleanliness and disinfection habits, and being aware of food safety rules is important for all children, but even more for those with disabilities, chronic health conditions or reduced immune response. School staff, extended family and other caregivers may be unaware of health and safety issues unless there is a food allergy or sensitivity, diabetes or other health condition in the family. Studies have shown that having children in childcare, preschool and primary grades regularly wash their hands reduces the incidence of absence due to illness by 30% to 67%. The use of alcohol-based or alcohol-free hand sanitizers has shown similar effectiveness in high schools and colleges.

Public health officials promote hand washing and flu shots for the general population to reduce the risk and severity of year flu epidemics. They have found that there is a greater risk of death from flu among individuals with developmental disabilities or chronic health conditions. My son has Down syndrome and Type One Diabetes, so it is very important to me that those in our community wash their hands and get flu shots to reduce the risk to him.

I also support food safety education for parents. Babies and vulnerable children are at greater risk of serious illness from food borne illness or spoiled food. Families who rely on childcare and school with no one at home to care for a sick child may feel they have no choice but to send their son or daughter to daycare or school while they are ill. This can have a devastating effect on other children.

Death or Disability? The 'Carmentis Machine' and Decision-Making for Critically Ill Children

Excerpt from: Medical Futility Blog (click for full article)

 

In ancient Rome parents would consult the priestess Carmentis shortly after birth to obtain prophecies of the future of their newborn infant. Today, parents and doctors of critically ill children consult a different oracle. Neuroimaging provides a vision of the child's future, particularly of the nature and severity of any disability.  Based on the results of brain scans and other tests doctors and parents face heart-breaking decisions about whether or not to continue intensive treatment or to allow the child to die. 

In this new book from Oxford University Press, paediatrician and ethicist Dominic Wilkinson looks at the profound and contentious ethical issues facing those who work in intensive care caring for critically ill children and infants.  When should infants or children be allowed to die?  How accurate are predictions of future quality of life?  How much say should parents have in these decisions?  How should they deal with uncertainty about the future?  He combines philosophy, medicine and science to shed light on current and future dilemmas.

Nursing home study finds high rate of community-associated MRSA

Excerpt from: McKnight's (click for full article)

Patti's comment: This is so scary… I had 8 broken bones when I got MRSA at a local Michigan Hospital, and it was miserable! I was in so much pain it was unreal. Be careful out there folks!!

 

Community-associated methicillin-resistant Staphylococcus Aureus (CA-MRSA) was discovered in nearly 91% of nursing homes tested in a recent study.

University of California-Irvine researchers acquired samples from more than 2,200 nursing home residents in Orange County, CA. They detected CA-MRSA in 20 of 22 nursing homes where testing occurred between 2008-2011.

Most infection control measures related to CA-MRSA have been undertaken by hospitals, but this study shows nursing homes should also pursue interventions to prevent the spread of the drug-resistant bacteria, the researchers said.

"We believe these at-risk facilities could benefit from further infection control interventions, such as enhanced environmental cleaning or skin decolonization," said lead researcher Courtney R. Murphy, Ph.D.