It’s WORLD ALZHEIMER’S DAY and I MISS MY DAD…He Battled Alzheimer’s Disease…Let’s Raise Awareness & Find a Cure for the disease that cannot be prevented, slowed or cured💜💜💜
FOR IMMEDIATE RELEASE
Alzheimer’s and Dementia Friendly Cruise and Conference to Alaska Inspires and Empowers Caregivers and Family Members
NEW YORK, N.Y., September 18, 2017 — A new cruise specially designed for caregivers and their loved ones living with early-stage Alzheimer’s disease and dementia is set to sail to Alaska next September.
“The theme “Connecting Circles of Care and Building Bridges of Hope” is our goal for this unique conference and cruise that will inspire and empower caregivers and their family members on many levels,” said Lisa Marie Chirico, conference co-host and CEO and founder of Nursinghomeology, where she serves as a Nursing Home Navigator Coach for her clients who are experiencing long-term care.
As a former caregiver for her Father who battled Alzheimer’s disease, Chirico knows first-hand the multiple challenges that families and their loved ones face, both at home and in a skilled nursing environment. She is passionate about working with Alzheimer’s and dementia caregivers to inspire and support them.
“Like others of my generation, I left the workforce to become a full-time caregiver, and experienced a lot of challenges during those five years. Now, I am focused on helping family caregivers discover their journey in a whole new way. During this conference, we give everyone the opportunity to do just that,” said Chirico. “Attendees will also meet others who share many of the same joys and sorrows as they do, so there is the chance to build new friendships as well,” she added.
At this time, Alzheimer’s disease cannot be prevented, slowed or cured. In the U.S., it is estimated that 5.5 million people are living with Alzheimer’s disease, and every three seconds, someone in the world develops dementia. Approximately 15.7 million adult family caregivers in the U.S. care for someone who has Alzheimer’s disease or other dementia.
Joining Chirico as co-host of this conference and cruise is Kathy Shoaf, RN, BSN, ATP and owner of Elite Cruises and Vacations. “This cruise is an opportunity to benefit from a wide range of programming created for the complex and stressful daily lives of Alzheimer’s caregivers and their family members,” said Shoaf. “In addition, Alaska is a top travel bucket list destination, so it is a perfect pairing. We are also happy to connect families with special needs with trained support staff so that everyone can enjoy this trip with peace of mind,” she added. Shoaf, an accessibility travel specialist with an adaptive technology professional (ATP) certification, is also a geriatric neurology specialist, with 25 years in senior care management.
Attendees will experience diverse programming during the cruise that includes: healing pain and grief through sharing their stories; adapting homes for dementia; creating care partnerships; nutritional care for caregivers; and much more.
A distinguished panel of senior care practitioners and professionals joins Chirico and Shoaf for this conference. They include:
- Keynote Speaker: Brian Kursonis, Founder and President of Faith2Care and a strong voice for Alzheimer’s advocacy at With Alz My Heart
- Sue Frederick, Bestselling Author, Speaker, Intuitive Coach at Sue Frederick
- Martha S. Pascucci, RD and Certified Specialist in Geriatrics (CSG) at Medical Weight Loss of New York and Loretto
- Mike Good, Dementia Care Educator and Founder of Together In This
- Sister Patricia Markey, FNP at St. Patrick’s Manor
- Ellen W. Potts, MBA, Executive Director, Habitat for Humanity of Tuscaloosa, co-author of “A Pocket Guide for the Alzheimer’s Caregiver,” and President of Dementia Dynamics
- Daniel C. Potts, MD FAAN, Attending Neurologist, Tuscaloosa VA Medical Center, co-author of “A Pocket Guide for the Alzheimer’s Caregiver,” Founder and President of Cognitive Dynamics and Foundation Medical Director of Dementia Dynamics
The “Connecting Circles of Care and Bridging Bridges of Hope” conference and cruise also features an opportunity for attendees to find inspiration aboard from stories about the journeys of global caregivers through a brand new Book Circle sponsored by featured writers at the Alz Authors group. In addition, a screening of the film “Do You Know Me Now?” will take place, along with a discussion facilitated by Dr. Daniel C. Potts and his wife Ellen W. Potts during the cruise. “Do You Know Me Now?” is the winner of a Silver Remi Award from the Worldfest Houston International Film Festival.
Suitable for senior care practitioners and advocates who focus on Alzheimer’s and dementia as well caregivers and their family members with early-stage Alzheimer’s and dementia, this seven-day cruise sails to Alaska on Holland America’s ms Eurodam and departs from Seattle, Wash. on September 15th, 2018 and visits Juneau, Glacier Bay, Sitka, Ketchikan, and Victoria, Canada. Prices start at $1,510 per person, based on double occupancy, for an inside cabin. Airfare, insurance, and gratuities are extra. All cruise reservations are required to be made by Kathy Shoaf who can be reached at (219) 608-2002 or via email at Kathy.Shoaf@cruiseplanners.com
Lisa Marie Chirico
I am happy to announce my new seven-day cruise for caregivers and their loved ones living with dementia and early-stage Alzheimer’s disease. The theme “Connecting Circles of Care and Building Bridges of Hope” is our goal for this unique event that will inspire and empower caregivers and their families on many levels. We sail to Alaska on Holland America’s ms Eurodam and depart from Seattle on September 15th, 2018 with stops in: Juneau, Glacier Bay, Sitka, Ketchikan, and Victoria.
During this cruise, I am joined by a distinguished panel of senior care practitioners and professionals who I am very pleased to partner with. They include:
- Keynote Speaker: Brian Kursonis, Founder and President of Faith2Care.org and blogger at withAlzmyheart.com
- Sue Frederick, Bestselling Author, Speaker, Intuitive Coach suefrederick.com
- Martha S. Pascucci, Registered Dietitian and Certified Specialist in Geriatrics with the Academy of Nutrition and Dietetics
- Mike Good, Dementia Care Educator and Founder of Together in This togetherinthis.com
- Sister Patricia Markey, O.Carm., FNP stpatricksmanor.org
- Ellen W. Potts, MBA dementiadynamics.com
- Daniel C. Potts, MD cognitivedynamics.org
I am also pleased to partner with the AlzAuthors group for our new Book Circle during this cruise: alzauthors.com
Please watch this space for additional details about the exciting agenda for this unique event, I look forward to sharing them!
If you or your family member require special assistance or additional care during the cruise, we can provide trained support staff. To discuss these options or book this cruise, please call Cruise & Tour Specialist Kathy Shoaf, RN, BSN, ATP at 219-608-2002.
They say that it is very healing to write about one’s thoughts and emotions. I agree with this concept. In 2011, I decided that I would create a blog to share the ongoing challenges that our family faced as we managed my Dad’s nursing home care. Those challenges were compounded because my Dad suffered from Alzheimer’s disease.
I was not only interested in venting on my blog. I also thought that by sharing my stories, I could help empower other families who were facing the same issues that we were firsthand.
Although I’m consulting caregivers now, I feel that the blog posts I created can continue to serve an important purpose. I will share those posts on this blog. I will also continue to write about issues that I believe the community of nursing home caregivers can connect with.
I invite you to sign up on this page to receive my future posts via email. Also, I want to remind you that you are not alone on this journey. I look forward to hearing from you!
I hope everyone reading this post has seen the film “Terms of Endearment” and that they recall the scene in the movie where Aurora, played by Shirley MacLaine, screams (in a really big way) at the nurse to give her daughter Emma, played by Debra Winger, a pain shot.
Aurora relays an emotion in the pain shot scene that I sometimes (actually quite often) feel at the nursing home. I cannot bear to see my Dad in pain or discomfort of any kind. All caregivers feel this way about their loved ones. Yet, these feelings are secondary when a family member moves into a nursing home. Due to Alzheimer’s disease, my Dad can no longer express himself. He is unable to get the attention of a nurses aide to ask to be taken to the bathroom, or insist a nurse give him something for an ache or pain he may have. So, his family is his voice now. We are the ones who find help for him when we know he needs it. But, what happens when the help we need is unavailable?
The nursing home where my Dad lives faces issues that I’m sure are quite similar to other skilled nursing facilities nationwide. One of those issues that I’ve observed is a shortage of staff. The phrase “we’re short-staffed today” is one I hear too many times to count. Because of this, I long to be a fly on the wall during a meeting between the home’s administrator and its controller; how interesting it would be to see where the budget cuts occur! You may find my fly on the wall desire strange, but if you experience the same staffing issues in your loved one’s nursing home that we do, you will undoubtedly share my wish to turn into a fly. Like my family, you will wonder why shifts are continuously short-staffed, and how this problem will affect the residents.
There are no good answers to these questions. The fact is, that when a nursing home is short-staffed, all the residents who live there suffer! How often do decisions about a nursing home’s profit – their bottom line – override those taken to make sure there is adequate care for the residents who live there? I am confident that if I asked any nursing home administrator or controller this question, he or she would initially laugh and then reply, “you just don’t understand what we have to deal with!”
Recently, I ran into a nurses aide that I hadn’t seen in a while. She told me that she is working at a neighboring hospital now, and occasionally works per diem at my Dad’s nursing home. Then, for some reason, she felt compelled to relay to me what the home was like back when she began working there. She described to me things that were no longer a part of the residents’ daily care. As she continued to speak, I felt tears welling up in my eyes. I didn’t hold them back, I cried right in front of her, but quickly wiped away my tears so my Dad could not see them. When she saw this, she stopped reminiscing. She admitted to me that this was the reason she quit her job at the home – she could no longer stand to see people that she cared about deprived of things she believed they needed as part of their care. She knew that there was no way to regain that level of care again, and as much as it hurt her to leave the people that she thought of as family, she did.
I share this story with you to illustrate a point. If nursing homes continue to draw lines in the sand as it relates to profits versus the quality of their product (the care they offer), where does that leave the residents and their healthcare advocates? There are no easy answers, but our responsibility to ensure that humanity never takes a backseat to company profits is essential.
“If we have no peace, it is because we have forgotten that we belong to each other.”
– Mother Teresa
As I write this post, it strikes me how the topic is not only relevant for my blog, but could easily be relevant to countless other written pieces. What I’m addressing today is a universal condition: the lack of kindness in our everyday lives.
Why is it so difficult for humans to just be nice to one another? I have noticed a lack of kindness at the nursing home where my Dad resides, and it disturbs me. Some staff members do their best to be kind to family members and the residents. Others fail at this.
It’s the little things, the things that your parents taught you when you were growing up such as: if you can’t say something nice to someone, don’t say anything; always say please and thank you; and smile at people when you have the chance.
I think many people simply don’t realize the effects of their actions, however small, on everyone they come in contact with. For instance, if I choose to smile at someone in an elevator, that simple action makes the person who I smile at feel good: I’m spreading a bit of joy their way. In turn, they will take that bit of good feeling and pass it on. A good analogy to illustrate this is the difference between opening a shade and letting light into a room, or closing a shade and keeping a room dark.
We make these little, conscious decisions daily. Something as simple as smiling at someone, or choosing instead to give that person a stony stare, makes all the difference in the world – it really does.
“Kindness is the language which the deaf can hear and the blind can see.”
– Mark Twain
Have you ever wondered if people deliberately turn off their brain function? I know I have. From time to time, I find my Dad’s care at the nursing home lacking in common sense. To put it bluntly, when his personalized care plan is not followed, I want to exclaim to the person responsible: “don’t you have a brain inside your head?”
Sometimes, these lapses in judgement could be seen as medical errors. Other times, these “mistakes” are quality of life issues that have a big impact on my Dad. Either way, they should never be seen as petty or unimportant.
The word stupid may be one way to categorize these thoughtless actions. Merriam-Webster defines stupid as: “given to unintelligent decisions or acts: acting in an unintelligent or careless manner.”
Although we will never know someone’s justification for taking shortcuts when providing care, I believe it has something to do with that person’s compassion and sensitivity. A staff member of my Dad’s nursing home once remarked to me that compassion is not something that can be taught. I don’t agree with her.
By showing compassion and love for others, we set an example to follow. That example shines light into dark corners and illuminates everything in and around them. I believe that people can learn to be more compassionate, but sometimes, they turn away from what they know is right and instead, embrace what is wrong.
My Dad is unable to make any of his needs known. Although we speak for Dad now, our voices are not always heard. We can only hope and pray that those caring for him make the right choices—choices motivated by common sense, compassion, and the Golden Rule.
My Dad was injured one night as he slept in his bed at the nursing home. To be specific, he received a cut on his hand that required nine stitches. To make matters worse, the nursing home’s investigation revealed no details about what caused the wound. In addition, the digital X-ray taken in the ER shed no light on the incident since it did not find any foreign matter in the laceration.
For my family, this means that we will never know what caused Dad’s injury. Since Alzheimer’s disease took his voice, he can’t tell us exactly what happened to him. Although this is difficult for us, we can only imagine how frustrating all of this must be for him.
We accept the fact that accidents happen and that people are not perfect. In an ideal world, those who gave care to my Dad that night would have told the truth when they were questioned. This way, my family would have received closure. Unfortunately, this was not the case.
As the sun came up and the next shift arrived, Dad’s aide came into his room to get him ready to start the day. She was shocked to discover his injury. She tried to figure out what could have caused the laceration. Strangely, there was no more blood in sight. Not on the pure white sheets, blanket, or pillow case. Not on the floor, the nightstand, or the bed rail. The garbage pail in the bathroom was even empty. In fact, there was no evidence in the room at all to indicate that anything out of the ordinary had occurred during the night.
Just like special agents from NCIS, my family searched for clues everywhere in Dad’s room to help us understand how he could have received such a deep laceration wound. We later were told that the nursing home staff had also searched for traces of blood, but found none. So, what conclusion can possibly be reached?
We have reasons to believe that those who were questioned were not telling the truth. We can only assume it was because they feared losing their jobs. I wish I could turn back the clock and whisper in their ears “the truth shall set you free.” Sadly though, I don’t think it would have made a bit of difference. Fear is a powerful motivator.
Like many before me, I am here to say that it’s never okay, under any circumstances, to take advantage of someone’s disability to suit one’s own needs. The people who were questioned about my Dad’s laceration believed that withholding the truth was the right thing to do – for them. They rationalized that because my Dad is unable to speak, the truth would never come out. They live with their misdeed. We live with the hurt that they caused our loved one.
I wonder what exactly happens when people flip a switch in their minds and place their needs ahead of everyone and everything else? To take it a step further, what do human brains look like when they are being selfish? Most importantly, what happens inside their hearts?
“I believe that unarmed truth and unconditional love will have the final word in reality. This is why right, temporarily defeated, is stronger than evil triumphant.”
– Martin Luther King, Jr.
As we know, inspiration is sometimes found in the most unlikely places! A recent telephone conversation with a nurse at my Dad’s nursing home inspired this blog post. This conversation was supposed to be an update about his flu-like symptoms. Our family was perplexed over the addition of a second antibiotic, and the nurse – let’s call her Florence – was trying to convince me of the benefits of this medication during the phone call.
About three minutes into the call, Florence decided to switch gears and wanted to talk about Alzheimer’s disease. For some reason, she assumed that it was necessary to explain to me the progression of the disease and how, eventually, it would lead to my Dad’s death. I was shocked that she found the need to lecture me about his illness and then follow that up with relaying how it will take his life.
Was nurse Florence just trying to impress me with her knowledge base, or was she on an ego trip? It’s hard to say, but I’m leaning towards the ego trip. One of my favorite teachers, Dr. Wayne Dyer, advises that the ego is an acronym for edging God out – he’s so right!
Florence’s decision to lecture a family member about their loved one’s illness was very troubling to me. Did she assume that I knew absolutely nothing about Alzheimer’s disease? This was a big mistake on her part, since I don’t know of anyone who does not make a point of learning all they can about their loved one’s disease.
Also, Florence’s choice to play God and predict when and how my Dad will pass away is especially offensive to me. Her clinical description went beyond insensitivity. I wanted to say to her: “Guess what, Florence? In case no one has told you, you’re not God!” Apparently, she thinks because she works in the medical field, that she can accurately predict when someone will die. I assume that she was absent from class the day her fellow nursing students learned about how to talk to family members. Her ludicrous notion that she could know something only God knows angered me greatly, mainly because it’s a reflection of how society views life and death.
We cannot live our lives with a constant fear of death. If you have a loved one who suffers from an illness, their passing might be an ever-present thought. I’m here to say ignore that thought! Instead, celebrate every precious moment of their life as well as your own. Despite what any doctor or nurse will tell you, the only one who knows when and exactly how someone will pass away is God, and the last time I looked, He doesn’t have a stand-in. Carpe diem!
You may expect that your family member’s laundry is the last thing that you’ll worry about when they move into a nursing home. After all, what could be so complicated about laundry? Nursing homes are equipped with machines that can handle the job, and employ a staff to sort and deliver the clean laundry. Right? Well, I’m truly sorry to tell you that you’re only half right; let me explain.
There is a cat named Homer that roams my Dad’s nursing home in search of socks. Once Homer finds them, he hoards them. On special occasions, such as his birthday or a holiday, he wears them. Funny story, isn’t it? Is it a true story, you ask? Well no, but I really wish it was! That way, at least there would be some explanation for what happened to all of my Dad’s socks. As a new resident, he had more than two weeks’ worth of socks. Slowly, this number dwindled, until ALL of his socks just disappeared. Did we receive a warning about this so we could buy more socks for him? No, none was given. Instead, one day when I visited, I noticed that he had his shoes on with no socks. Yes, he was sockless. It may look trendy for men to go sockless in the summer, but I’m willing to bet that no caregiver wants to see their loved one without socks, no matter what time of year it is.
Upon my inquiry into this matter, the answer I received from the aides was “there was none in his drawer.” I wondered out loud where all of his socks could be, yet no one had any answers for me. One of my Dad’s aides even ventured to look for his socks in the dressers of some of the other men on his floor, but to no avail. Thankfully, another resident was happy to lend my Dad a pair of his socks. I realized that the next day, I would need to investigate this laundry mystery.
Well, what I discovered did not put my mind at ease. It seemed that no one in the laundry department could find my Dad’s socks, not one pair. Where had they all disappeared to? Maybe they were in the socks without mates bin? No, not there. Maybe they hadn’t been washed yet. No, all the soiled laundry was washed and accounted for. Since I was unable to solve this laundry mystery, I decided that my theory about Homer must be true. Or, that maybe all my Dad’s socks were abducted by aliens and tossed into a black hole somewhere in our galaxy.
All jokes aside, the issue of laundry for nursing home residents is one that family members and caregivers must continually keep watch over. The sock incident that I discuss in this post is not the first or only problem that we encountered with my Dad’s laundry. To avoid these problems, you may find it easier to take your loved one’s soiled clothes home with you and wash them yourself. If he or she is incontinent, ask the aides to separate the clean from the soiled clothing, and place them in their designated laundry bags (which you should supply). Also, so there are no misunderstandings, make it clear to the staff that you are taking your family member’s laundry home to clean.
A truism about your loved one’s wardrobe in a nursing home is that something will inevitably disappear, shrink, or become damaged. It’s a good idea to keep an itemized list of all their clothing, right down to the number of pairs of socks in their drawer. Additionally, make sure that all their clothing is clearly labeled with their name and room number. I also recommend that you visit the nursing home’s laundry department and find out what their specific procedures are. When you follow the steps I’ve outlined in this post, you will hopefully save yourself from some, if not all, laundry-related troubles.