Caregivers Unite

An Explanation of the Rights of Nursing Facility Residents

It is the goal of Alabama’s nursing facilities to promote and protect the rights of each of their residents. According to the Older American’s Act, a federal law which was initially passed in 1965, each nursing facility resident has a right to a dignified existence, self-determination, and communications with and/or access to persons and services both inside and outside of the nursing home. Also included is the right to the individual’s freedom of choice, the right to privacy and the right to voice grievances. Some of these resident rights include:

• the right to be treated with dignity, privacy, respect, and to live in a safe, clean, comfortable, and homelike environment
• the right to exercise their rights as citizens of the United States and of the State of Alabama, including the right to vote
• the right to be fully informed in writing of all facility services and charges for those services
• the right to be informed of their health status and the right to participate in the planning of their own care and treatment, the right to refuse medical treatment, including experimental research, and the right to formulate an advance directive
• the right to have their money and property protected
• the right to manage their financial affairs
• the right to know if they are eligible for Medicaid or Medicare and how to apply for coverage
• the right of freedom of choice to make their own decisions
• the right to privacy including accommodations, medical treatment, written and telephone communications, personal care, and meetings of family and resident groups, but this does not require the facility to provide a private room
• the right to retain and use personal possessions, as space permits
• the right to privacy and confidentiality of their medical and clinical records
• the right to an accessible grievance procedure that is easy to use
• the right to refuse to perform services for the facility unless they desire to do so and it is documented in the plan of care
• the right to choose the groups and activities in which they wish to participate
• the right to have guests visit and other personal communications
• the right to basic procedural safeguards on admission, transfer and discharge
• the right to get advance notice about a change in room or roommate, and to be told why such a change is needed
• the right to be informed in writing of the bed-hold policy for temporary absences from the facility
• the right to be free from physical restraints or psychoactive drugs administered for discipline or convenience, or not required to treat their medical symptoms
• the right to be free of verbal, mental, sexual, or physical abuse and involuntary seclusion
• the right to refuse a transfer to another room within the facility under certain circumstances
• the right to self-administer drugs if the interdisciplinary team has determined that this practice is safe
• the right to examine the results of the most recent Federal or State survey of the facility
• the right to be free of interference, coercion, discrimination, or reprisal from the facility in exercising these rights
• the right to be informed both orally and in writing of their rights and all the rules and regulations governing their conduct and responsibilities during their stay in the facility
• If you feel your rights are being violated, give your local Ombudsman a call.  In Mobile, Escambia, and Baldwin Counties, call Ivy Walker at 251-433-6541 or 1-800-243-5463.

Caregiversunite.org has it’s own Facebook page.  Visit us on Facebook for an easy conversation and the latest news.

BETH REINERT – GUEST OPINION

Advocate seeks to change perception of dementia

Have you ever been asked the question, “Who would you most want to have dinner with?” My answer is Teepa Snow, an award-winning occupational therapist who has made it her mission to help family and professional caregivers do a better job of caring for people with dementia.

Snow is a mentor and voice of confidence for the millions living with the disease. I have learned from her teachings to better understand how to help my mom live with dementia.

I caught up with Snow recently in Mobile while she was there for a speaking engagement. We chatted for several hours about our shared focus: advocating for men and women who have dementia.

Dementia is an umbrella term that covers 70 to 80 conditions of brain failure. A dementia diagnosis is lifealtering for not only the person living with the disease, but also for the person’s family.

More than 50 percent of diagnosed types of dementia are Alzheimer’s cases, but often a secondary dementia emerges as the disease progresses.

Alzheimer’s disease is the sixth-leading cause of death in the U.S. No pill will take this problem away, so the key to a positive outcome is how caregivers manage our actions, words and reactions.

Snow has a message not only for families and care professionals, but also for all of society. “Policemen, firefighters, emergency room workers, postal service and bank employees all need to be familiar with the signs of dementia.” she said.

“We as a society must have a basic awareness of dementia and embrace people living with dementia instead of labeling them as demented people.”

Snow wants to change the perception of how dementia is viewed, take away the negative terminology and create the right setting and care for men and women with dementia.

At risk herself

Snow’s popularity took off in the late ‘90s after she presented a staff training model at the International Alzheimer Meeting in Washington, D.C. Her DVD, “Accepting the Challenge,” has been widely distributed. She is the most prominent educator for training on all aspects of Alzheimer’s disease care. That is why her calendar is booked through 2015.

Snow also has a history of dementia on both her mother’s side and father’s side of the family.

She knows she is at risk for developing the disease, so she is living life carefully by making good choices. She keeps physically fit, manages stress with yoga and deep breathing, and eats well.

Snow’s website, teepasnow. com, is full of information that both professional and family caregivers should see.

Free webinars can be accessed from her Dementia Care Academy, and DVDs are available for purchase. Not everyone can attend her workshops, but anyone with Internet access can learn from her teachings.

With the coming tide of senior baby boomers on the horizon, everyone needs to know about dementia. We should all get to know what Snow has to say about it.

Beth Reinert advocates for people living with Alzheimer’s disease. She authors the blog Caregiversunite.org, which includes general news and advice for families coping with the disease, along with event listings for the south Alabama area.

Printed in AL.com, Press-Register, September 18, 2013, page 10A

Announcing a tracking device that helps locate a person who has wandered away.  Aetrex has a new line of shoes called GPS Smart Shoes for men and women that contain a GPS tracking device to enable locating the individual wearing the shoes.  For more information and videos about this product, go to gpsshoe.com

My family did a cell phone intervention with me two years ago. I had held on to my original cell phone plan for many years and resisted any changes.  So when they transferred my number to a smart phone and a new company, I knew I was beat. I tried to keep an open mind. According to my family, now I would be able to text with them and do all the other things they could do—whatever that was.

My family was right. Once I mastered texting and using the phone, I began to explore apps.  First I followed recommended apps from my husband and son but then began to branch out and find what interested me. Since I am a caregiver for my mom who has Alzheimer’s disease, I soon found that my cell phone was my constant companion and record keeper. For example, I store information I need for doctor visits under Notes, as well as document what we discussed at the appointment. I set up Reminders for myself such as pay the private duty sitter and other bills or get medication and supplies. I have a Pill Finder app that helps me identify pills I find on the floor that Momma didn’t take and threw away. I can look up medications and their side effects if she is having some unexplainable symptoms. When we do her laundry, I can set the Timer to alert us to when the washer and dryer cycle is finished.

My phone has replaced the camera I once carried around. Just like everyone else with a smart phone, I am constantly taking photos of all the people in my family’s life. Once Momma moved to assisted living, we used photographs to help us remember faces and names of all the people that helped care for her. We set up a poster-sized frame in her room with pictures of all the employees, their job titles, and names. To boost visibility, it hung on the wall just inside her door, which encouraged many impromptu visits and comments. I was surprised to find how willing doctors are to have their photo taken with their patients. These photos would come in handy when we were about to have an appointment with the doctor and I could show Momma who we were going in to see. The pictures serve as our memory, and we can look at them over and over again.

The phone is also a resource for activities. We enjoy listening to Pandora’s easy listening music while accomplishing activities like brushing her teeth, painting her nails, or playing cards. I attach speakers to the phone to provide vintage music while leading a group exercise class for the other residents, and I can take requests without any prior preparation. Sometimes I look up words to old songs we can sing together because we’ve forgotten some of the words. Poems and even nursery rhymes are just a touch away with Internet service as part of the phone plan.

One app allows me to scan important documents and even send them by email with FasterScan, which expedites duties like filling out paperwork for moving into skilled care. I no longer have to be home to receive phone calls, send emails, or handle bank business. I can manage these responsibilities and still be with my mom. I finally have learned to complete as much information as I have on a phone contact to save time for future communication. I can text messages with Momma’s private sitters and receive an immediate response when needed. For my peace of mind, they have sent me photos of Momma while she is in their care just to let me know what they are doing. When I’m with her, I can send a text and photo to one of my children and share a response on the spot.

Even though cell phones are relatively new, Momma has embraced the little rectangular box we carry around that emits music and provides amusement in so many ways. I usually hand it to her to hold when I am pushing her in the wheelchair when we have the music playing. Because of her failing eyesight, the bigger screen of a computer or iPad is a better choice if I want her to see specific pictures clearly. However, for daily use and ease of transporting, my cell phone is all we need.

Della Sanchez, LGSW
Alabama Cares, Respite Program

Alabama Cares provides services to help caregivers continue their caregiving efforts which allows care-recipients to remain in the community for a longer period of time.

Services provided are:

• Information about services
• Assistance in obtaining services
• Counseling to help with coping
• Respite to provide a break
• Supplemental Services to fill in the gaps in services

These services are available to caregivers providing care for individuals age 60 +.  For more information, contact Della Sanchez at the Area Agency on Aging in Mobile, AL by calling 251-706-4650 or email at dellasanchez@sarpc.org.  Funded in part by the Alabama Department of Senior Services and Title 111 of the Older Americans Act.

Mobile Infirmary’s E.A. Roberts Alzheimer’s Center is managed by Laura Harrington.  She is a Board Certified Gerontolgical Nurse.  Aside from her very capable credentials, she is one of the nicest people I know.  She has a knack for making people feel valued and cared for.  I always feel better just being in her presence.  I have seen her show such care and concern for the weary caregiver.  If you have a loved one with Alzheimer’s Disease, you may want to visit the E.A.Roberts Alzheimer’s Center, see the facility and learn about their Adult Day Care program.  Who knows, you may get to meet Laura.  You and your loved one will be glad you did.

You are a purple angel, Laura, for all the years and care you’ve given to helping those with Alzheimer’s Disease and their loved ones.

I’m not biased toward Gentiva Hospice.  In fact, I’m sure there are other good hospice providers in our area.  However, I have used their services (previously named Odyssey) on three separate occasions and have found them to be helpful and a reliable safety net for my mother’s care.  Not only have they recently changed their name, but they have also become the first hospice provider that I know of that is offering a specialty program for managing Alzheimer’s and Dementia.  Their brochure addresses issues like Sundowning Syndrome, Fall Safety Assessments, State of the Art Adult Briefs, and offer a printed guide for information designed to help families better support their loved one, and deal with the stresses and emotions of caregiving.

If you could use help caring for your loved one, you may qualify for hospice. For more information, contact www.gentiva.com.

James Roberson is a medicare counselor and community educator.  He is the coordinator of the Alabama State Health Insurance Assistance Program (SHIP) and is the go to guy for information that can help you make informed choices about your health insurance.  SHIP is a service provided through the Area Agency on Aging.  SHIP can help you understand your Medicare benefits.  They can help you determine which Medicare Prescription Drug Plan best fits your needs.  They can answer questions about Medigap, long-term care insurance policies and other health insurance programs for seniors.  They can assist Medicare beneficiaries in specific areas such as home health benefits, Medicare claims and appeals and other similar issues.  This is a free service.  SHIP will not try to sell you any insurance.  They only provide education and counseling.

Medicare Open Enrollment starts October 15 this year.  If you need help in choosing your Medicare Part B coverage, give James a call at 251-433-6541.  The SHIP office is located in the GM&O Building in downtown Mobile, AL.

MedicAlert + Alzheimer’s Association Safe Return is a 24 hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency.  24-hour assistance is provided, no matter when or where the person is reported missing.

Go to medicalert.org/safereturn for information on cost, ID jewelry, and how to join.