I remember my grandfather as a smart, proud, spunky bald-headed Italian man who prided himself in neatness, proper manners, reading, and cherished time with his family. As one of the architectural draftsman who worked on the George Washington Bridge back in 1957, he loved teaching my brother and me how to draw. I remember his “Italian temper” would flare a bit if we did not strive for perfection as much as he did when we were “strong-armed” into routine drawing lessons. We had to completely erase every noticeable pencil mark and not wrinkle the paper as we did so. In summary, he was neat, organized, strong-willed, smart, and proper.
What a stark contrast to how he died. Towards the end of his life, he was unable to care for himself and relied on the staff of the nursing home to change his adult-sized diaper and feed him with a spoon that could have easily been mistaken for a baby spoon. I choose to forget these memories, as they do not begin to represent the person he was. Alzheimer’s Disease slowly stole his ability to speak, write, and care for himself over several years. Towards the end of his life in late 2000, we grappled with meeting his basic needs while trying to maintain whatever dignity he had left. That was a formidable task!
As a relatively new RN and the only medical professional in my family, I took on the overwhelming task of translating medical jargon into terms that my family could understand as he moved in and out of the hospital with complications from Alzheimer’s (aspirating, falling, etc). I felt somewhat relieved when doctors simply doled out next steps in his care and we obediently followed. I was grateful (back then) that we were not asked what HE would want (I had no idea, and neither did my grandmother). Papa Louis ended up in a nursing home for the last several months of his life, after being transferred out of an acute-care hospital following a bout of pneumonia. The pneumonia had left him weakened and unable to walk, so being discharged home was not an option. As his body began to “shut down”, he starting eating and drinking less and his “awake hours” became few and far-between. I remember a doctor telling me and my family that the institution could not support patients “not eating” and he would be forced to have a nasogastric (feeding tube) placed. I was horrified! Even back then, I knew that this was an improper intervention for this man who was clearly dying, and placing such a tube would rob him of whatever dignity he had left. Unfortunately, the tube was placed despite my family’s plea to not intervene in this manner. And the tube was forcefully and barbarically replaced every time he pulled it out. His screams could be heard down the hall. Ultimately, his hands were restrained so that even his movement was restricted. He developed pressure ulcers from the lack of movement and was medicated so he would not try to wiggle his way out of the restraints. Horrible!
As a geriatric Nurse Practitioner, even now (15 years later), I reflect on that experience with a heavy heart. I wish I had the knowledge, the empowerment, and courage to have done something…anything… other than what we did. We were captured in the claws of a health care system designed to meet the mandates of doctors and the institutions that employed them and not the wishes of their patients. In order to understand where we are, we need to reflect on where we came from. We have come a long way, but there is more work still to be done. The concept of the patient and their family being a critical part of the health care team would have been swiftly dismissed two decades ago. Thankfully, patient-centered care has replaced physician-centered care. This paradigm shift has supported improved clinical outcomes, enhanced patient and caregiver satisfaction, as well as decreased health care associated costs. As patient advocates in any capacity, we need to continuously and tirelessly support models of care that embrace patient and caregiver-centered approaches. Yes, we have come a long way, but it’s not yet time to sit! We have to continue on the path towards providing care that integrates the needs and interests of our patients across all health care systems.
I truly wish I could have done more to make his final days more dignified.
Dr. Maryanne Giuliante, DNP, RN, GNP, ANP-C
Have you ever forgotten the name of something or someone and it is at the tip of your tongue? Seconds or maybe minutes later, you remember it. Well, for individuals diagnosed with Alzheimer’s disease, often that forgotten word is never remembered and forgetting the name of something becomes more and more frequent as the disease progresses.
Alzheimer’s disease is said to be one of the most frustrating and heartbreaking nightmares an individual and his or her family will live through. My family is currently living this nightmare. This past year, my aunt, who I refer to as Zia Maria, was diagnosed with Alzheimer’s disease. Week after week when we visit her, she appears to be slowly disappearing before our eyes. The once cheerful, loud Italian woman, who would cook homemade pizza for us every Sunday in her outdoor brick oven, is now quiet and unable to recognize many of her family members. The memories we all once shared remain with us, but are becoming lost to her. The blank stare we often encounter when we go visit her in the nursing home leaves our hearts heavy with sadness.
Trying to look on the bright side of things is often difficult with this debilitating disease. While there are treatments to slow this disease, there is no cure for Alzheimer’s. This is when I began to get involved with the Alzheimer’s Association and learned about the Longest Day, which will be held this year on June 21st, 2015. The Longest Day is a team event to raise funds and awareness for the Alzheimer’s Association. Each year it is held on the summer solstice, the period of time from sunrise-to-sunset, symbolizing the challenging journey of individuals living with Alzheimer’s disease and their caregivers. Teams are encouraged to generate their own experience as they raise money and participate in an activity they truly enjoy to honor someone facing the disease. This year my family will be participating in a brick oven pizza party with all of our friends and family to honor my Zia Maria. We may not be able to cure my Zia from this debilitating disease, but we can do our part by raising money and awareness to provide future generations with a cure. Please do your part.
For more about the Longest Day and how you can get involved, click here.
Alyssa Coppa is a nursing student in the third sequence of the accelerated baccalaureate program at NYU College of Nursing. She is a member of the Hartford Institute Geriatric Undergraduate Scholars Program and the Geriatric Student Interest Group. Her first degree is in Biology with a minor in Psychology. She plans on becoming an Adult Acute Care Nurse Practitioner specializing in geriatrics.
Today is World Elder Abuse Awareness Day. We should pause and consider how many older people are subject to abuse and what really constitutes abuse. The IOM in 2014 reported that as many as 1 in 10 older adults and 47% of persons with dementia living at home experience some form of mistreatment (IOM 2014).1 This number is simply an estimate because so much of elder abuse is unrecognized and unreported. Elder abuse or neglect is defined as intentional actions that cause harm or create a serious risk of harm (whether or not harm is intended) to a vulnerable older person by a caregiver or other person who stands in a trust relationship to that person. This includes failure by a caregiver/family member to satisfy the older adult’s basic needs or to protect that person from harm.2
If someone has bruises, abrasions, or burns anywhere on the body including the breast or genitalia, we can see the signs of abuse. It is the unseen signs of abuse, which are as harmful as physical and sexual abuse, that cause depression, physical ailments and overall sadness in older adults and are often not detected by health care professionals or caring family members. Abuse can be self-neglect in which the older person cannot perform essential self-care and that failure threatens his/her own safety or health. Neglect is when those responsible to provide food, shelter, health care or protection fail to do so. Abandonment occurs when someone who has assumed the responsibility for a person, deserts them. Emotional abuse is through verbal or nonverbal acts that are humiliating, threatening or intimidating. And finally exploitation is the stealing, misuse or concealment of one’s property such as money, property or assets.
I remember sitting behind an older couple in a concert one night and the woman kept falling asleep. Every time her head nodded downward, her spouse jammed her as hard as he could with his elbow to wake her up. This is elder abuse and perhaps just a sign of a bigger problem. Any behavior such as belittling, threatening and other uses of power and control by spouses or caretakers are signs of emotional and verbal abuse. Strained or tense relationships with frequent arguments between an older person and an adult child or a caretaker are also a sign of elder abuse.
Be aware – so many of our older adults suffer in silence. They do not want to make trouble and they are afraid of what might happen if they say anything. This is our vulnerable population – our older adults who are dependent on others to meet their basic needs. We need to be vigilant and alert. If you notice changed in an older adult’s personality – depression, sadness, and decrease in verbal communication – ask questions and watch interactions with the caregiver or family member. Remember you may not see physical signs of abuse, but there may be tremendous internal pain. This is why World Elder Abuse Awareness Day should remind us that elder abuse is a bigger problem than we think and that more than 1 in 10 of our older citizens are abused every day. Be alert and alert others if you think abuse is occurring. We need to work together to keep our aging population safe.
1IOM (2014). Forum on global violence prevention: Elder abuse and Its prevention, pp. 1-1 and 2-8. Washington, DC: National Research Council.
2Bonnie, R, & Wallace, R (Eds.). (2003). Elder mistreatment: Abuse, neglect and exploitation in an aging America. Washington, DC: National Academies Press.
We all expect to feel safe in our homes and among those who care for us, but what happens when those we depend on come to misuse our trust? This is an alarming reality for nearly one in ten Americans over age sixty who have experienced intentional abuse and neglect at the hands of their caregivers. Elder abuse may take many forms, including physical injury, verbal attacks, unwanted sexual contact, financial exploitation, and abandonment. While all seniors are at risk, females, patients over eighty-five, and patients with dementia may be particularly vulnerable to mistreatment by those closest to them. This Monday, June 15, 2015, the National Center on Elder Abuse (NCEA) will be partnering with organizations across the country to promote World Elder Abuse Awareness Day (WEAAD). The goal of this campaign is to generate awareness for an under-recognized issue that is responsible for nearly six million reported cases of abuse against older adults each year. Here at the Hartford Institute for Geriatric Nursing, we will be counting down to June 15th on social media with facts, quizzes, and resources to bring awareness to this silent epidemic.
Fittingly, a recent brief titled “Elder Justice: Preventing and Intervening in Elder Mistreatment” (Boltz, M., Buckwalter, K., Cortes, T., Evans, L., & Fulmer, T.) offers a set of recommendations for nurses and other healthcare professionals to aid in recognizing and reporting elder abuse, supporting those who have been victimized, and preventing the occurrence of elder mistreatment altogether.
For more information on NCEA and what is being done to address elder abuse in the United States, check out their website.
Also, be sure to follow us on Facebook and Twitter to stay up-to-date as we count down to June 15th!
Christine McCue is a nursing student in the third sequence of the accelerated baccalaureate program at NYU College of Nursing. She is a member of the Hartford Institute Geriatric Undergraduate Scholars Program and the Geriatric Student Interest Group. Her first degree is in psychology and Spanish language.
The Home Health Care Planning Improvement Act of 2015 (S. 578, H.R. 1342) would amend Title XVIII of the Social Security Act to have more timely access to home health services for Medicare beneficiaries under the Medicare program. Legislation is needed to allow APRNs to sign home health plans of care and certify Medicare patients for the home health benefit. This bill would address these problems by specifically allowing nurse practitioners, clinical nurse specialists, certified nurse midwives and physician assistants to certify home health services. With more and more of our older population needing to be kept safely at home and avoid rehospitalization and ED use, it is increasingly important that APRNs have the ability to write orders for home health care and to change/adjust/write orders when they see a patient in the home setting. Allowing APRNs to practice to the full scope of their license will assure more consistent , coordinated quality care across the continuum. They are a vital link in our healthcare system. Websites are showing that this bill has a very small chance of passing. This must be because our Congressional leaders do not have it on their radar. Raise your voices and educate our legislators. This bill is essential to keep their loved ones, or themselves, safe at home with quality care and out of hospitals and nursing homes.
Learn more about this Act on the Eldercare Workforce Alliance website
Support the act on the American Nurses Association Website.
- One out of three older adults (those aged 65 or older) falls each year1 but less than half talk to their healthcare providers about it. 2
- Among older adults, falls are the leading cause of both fatal and nonfatal injuries. 3
- In 2012, 2.4 million nonfatal falls among older adults were treated in emergency departments and more than 722,000 of these patients were hospitalized. 3
- In 2012, the direct medical costs of falls, adjusted for inflation, were $30 billion. 4
2.Stevens JA, Ballesteros MF, Mack KA, Rudd RA, DeCaro E, Adler G. Gender differences in seeking care for falls in the aged Medicare Population. American Journal of Preventive Medicine 2012;43:59–62.
3.Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. Web–based Injury Statistics Query and Reporting System (WISQARS) [online]. Accessed August 15, 2013.
4. Stevens JA, Corso PS, Finkelstein EA, Miller TR. The costs of fatal and nonfatal falls among older adults. Injury Prevention 2006a;12:290–5.
-from the Centers for Disease Control and Prevention; http://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html
Katie Hafner from the New York Times writes an interesting and eye opening article in yesterday’s New York Time entitled “Bracing for the Falls of an Aging Nation”.
“As the population ages and people live longer in bad shape, the number of older Americans who fall and suffer serious, even fatal, injuries is soaring. So the retirement communities, assisted living facilities and nursing homes where millions of Americans live are trying to balance safety and their residents’ desire to live as they choose.” Read more…
Sometimes, caregiving for family members becomes even more difficult when members are living in different countries or even different continents. Read this New York Times Article on a problem more and more people are facing with the increase of globalization. Read Here.