by Tara Cortes, PhD, RN, FAAN, Executive Director, Hartford Institute for Geriatric Nursing
What do we think of when we hear the word dementia? It usually creates a profound image associated with stigma. Often we associate it with fear and loss. Usually we associate with getting old. People who are young might perceive dementia differently that people who are in their 60s and 70s. Those who live with or have loved ones who suffer with dementia might have yet another perception of what it means. Different societies perceive aging and memory loss differently. In some cultures aging people are revered regardless of their cognitive or physical abilities. In other cultures aging people who become confused or forgetful are shuttered and often isolated.
Recently I spoke at the International Dementia Conference in Birmingham, England and heard short remarks delivered by Baroness Sally Greengross OBE, Chief Executive/ President of the International Longevity Centre in UK. She spoke about dementia as a journey. It helped me to reflect on dementia as another road in life that some people take. This reminded me of Robert Frost’s A Road Not Taken:
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same…
It struck me how much more gentle it was to look at dementia through the lens of a journey than the lens of a disease. It is a road now traveled by more and more people and there are signposts and detours along the way. There are other people that join a person who is on that road. Some ride along for a little while and some longer. Most important, are the signposts and rest stops on that road that provide direction and respite to the journeymen. These signposts provide support, understanding and wisdom that make the journey meaningful and enrichening. These respite stops provide the comfort and the peace to the person on the journey and his or her companions. The road has many bumps that may require one to slow down. But there is an end. The goal is to embrace the journey while it lasts and seek ways to find new experiences along the way.
By Alyssa Coppa
Cancer is a word I began to hear and fear at a young age. I first heard this word when I was 3 years old and my grandmother, who I refer to as Nonna, was diagnosed with Stage 4 breast cancer. We immediately booked a flight to Italy to see her. It was the first and last time I was able to see my Nonna. A few years later, my grandfather, Nonno Antonio, was diagnosed with stomach cancer. A short week later he passed away during surgery. During this time, my cousin, who was only three years older than me age was battling a rare type of brain tumor. After two years of fighting hard, she passed away as well. All of the pain cancer was causing the various members of my family was heartbreaking. It felt as if cancer was taking away all of the people I loved. I contribute all of these losses I experienced at a young age as motivators to enter the field of oncology and help in the fight against the many types of cancer.
In nursing school, oncology is briefly touched upon. The more common types of cancer are taught along with the most frequent treatments including chemotherapy and radiation therapy. During the month of September, I was given the opportunity to shadow Dr. Giuliante, a Head and Neck/Melanoma/Sarcoma (HMS) Nurse Practitioner at Memorial Sloan Kettering (MSK) and vital member of the Hartford Institute of Geriatric Nursing family. This was the perfect opportunity to explore the oncology field in more depth and actually see if this is a field I can see myself entering when I become a registered nurse.
The experience was incredible! From the moment I arrived at MSK, to when I left, I was overcome with various emotions. Sadness filled me when some clients were told that their current treatment plan was not working or producing the results the health care team had hoped. Some of these individuals had young children that they would not be able to see graduate high school or college. However, despite these distressing moments, the strength and courage I encountered with many of the patients that were seen by the HMS team was inspiring. It makes the common things we stress about in life seem miniscule. In addition, the MSK staff including the nurses, nurse practitioners, and medical oncologists, were all incredible. The care they provided was some of the best care I have ever seen thus far in my career.
During my first day shadowing Dr. Giuliante at MSK, each client we encountered was extremely complex. I often associated cancer with only one part of the body. For instance, I once thought lung cancer affected only the client’s lungs and colon cancer only affected the colon. How wrong I was! Cancer often affects multiple parts of one’s body whether it is directly or indirectly. When assessing and addressing the various problems a patient is enduring, often solving one problem leads to another problem developing or becoming more apparent. The patience and intelligence the health care team at MSK had was fascinating. In addition, every member of the team worked very effectively with each other. The collaboration seen among the team was something I have read as “the future of health care”, but is already being practiced at MSK!
This opportunity confirmed for me that working in oncology is the right path for me. I want to help in the fight against cancer by providing comfort and care to those as an oncology nurse and one day nurse practitioner. After this experience, I no longer associate the word fear when I hear the word cancer. Instead, I associate strength, determination and courage with cancer. These are all the traits portrayed by the clients I encountered at MSK.
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.
It is well known that exercising is good for all of us, but this article in today’s NY Times reveals that exercising is not just healthy for our physical being. It may also prevent cognitive deterioration, such as Alzheimer’s Diseases. As a Geriatric Nurse Practitioner, I am often asked what one can do to stave off these type of dreaded diseases, which rob patients of their cognitive abilities. This article suggests that there IS something. And the best part? It benefits not just the brain, but the body too! For patients to reap the benefit of this relatively easy intervention, the amount of exercise suggested is “briskly walking for 20 or 25 minutes several times a week”. We can all do that, right?
What are the challenges that you can anticipate in trying to integrate this intervention into your daily routine? Of course, any alteration in our day-to-day activities is somewhat difficult to first adopt, but often comes easier over time. Can you find a way to break these barriers down, in the name of better health?
Before beginning a new exercise routine, we should first check with our health care provider to ensure that it is done in the safest way possible.
RV’ing appears to be the new “in thing.” As adults grow older, their need to be tied to their traditional home decreases. Along with this new-found freedom come creative ideas to spend time and money. Many older adults are being found at campgrounds throughout the United States. Offering a sense of freedom while still maintaining many of the comforts of home, an RV (recreational vehicle) is becoming more popular among older adults.
Several years ago, my parents (who are in their late 60’s) decided to buy an RV. They even named it!! The name of their RV is a combination of all of their grandkids names: Joseph, Gabriella, Daniella, Ariana, and Sophia were combined to create “Jogada Arso,” a name which they proudly display on the side of their RV. They have traveled all over the country and have met so many wonderful friends this way. My mom, who cannot stand the thought of dirt, unsanitary conditions, and other people’s messes, has wholeheartedly embraced the idea of creating a kind of “home on wheels.” They can pack it up and roam without a destination in mind. How lovely to have this freedom!
As older adults are living longer, RV’ing provides a method of becoming mobile while still recognizing that many (like my parents) are set in their ways!
– Dr. Maryanne Giuliante, DNP, RN, GNP, ANP-C
- Changing clinical training environments into integrated geriatrics and primary care delivery systems.
- Training providers who can assess and address the needs of older adults and their families or caregivers at the individual, community, and population levels.
- Delivering community-based programs that will provide patients, families, and caregivers with the knowledge and skills to improve health outcomes and the quality of care for older adults.
Thank you to NursingSchoolHub.com for this wonderful infographic that underscores the indispensable value of nurses in caring for a rapidly aging America.
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