Kate Swaffer – Dementia, My Story

Not all Dementias are due to Alzheimer’s, nor do they reveal themselves in the same way. CLICK ON THE TEXT BELOW TO VIEW KATE’S VIDEO BLOG.

Kate Swaffer My name is Kate Swaffer, and I live in South Australia, Australia. This is my true story about being diagnosed with a younger onset dementia, probably Semantic Dementia. It is a hideous disease that is terminal, debilitating and challenging to live with.

Alzheimer’s Stole My Father’s Speech – Our Dog Brought It Back

Lisa-AbeytaAPPCityLife-160x152by Lisa Abeyta: Founder, CEO APPCityLife Inc.

Yesterday afternoon, I had the privilege of spending a little bit of time with my dad, who is in the advanced stages of Alzheimer’s.

My parents have two dogs in their home, one of whom, Molly, is my father’s constant companion. More than once, I’ve watched him coo and talk to Molly even as his ability to form sentences and find the words he needs to communicate has deteriorated.

When my father and I arrived at my home yesterday to give my mom an hour to run some errands, our own family dog, Roscoe, greeted him at the door. For the next hour, my father petted and talked to Roscoe. Not wanting to lose the memory of the moment, I filmed a few moments of his interaction with our dog, amazed at the clarity of my father’s words.


Enhancing Person-centered Home Care

JTBy Jennifer Tucker, Vice President, Homewatch CareGivers International

Home care is first and foremost about the people we serve, not just the illness or disability that the individual is currently experiencing.  Our principles are in complete alignment with national organizations like CCAL and The Eden Alternative, which is why our caregivers have always been trained in person-centered, relationship-based care.

“From the time it was founded, more than 34 years ago, Homewatch CareGivers has been focused on promoting independence, dignity and choice for elders and their families,” said Homewatch CareGivers International President Leann Reynolds.

For those of you who may not be familiar with the ten-principle philosophy of The Eden Alternative, it promotes person-directed care. This type of care is structured around the unique strengths, needs and desires of people who need home care. Non-medical home care can assist people who for a variety of reasons may not be capable of executing their basic daily activities, such as bathing or preparing food, and need help remaining safe from falls or other hazards in their home environment.

“Even someone’s home can feel like an institution,” said Eden Alternative Co-Founder and geriatrician Dr. Bill Thomas. “Person-directed care changes this by putting the individual first.”

Homewatch CareGivers is pleased to be partnering with The Eden Alternative to bring person-directed care to caregivers across the country through our blended-learning Certified Eden at Home Associate Training for the home care industry.

Our country is facing ever-escalating numbers of families who want to age in place.   We are committed to listening to “the voices and choices of consumers” who are seeking well-trained in-home caregivers and interactive e-learning tools to better engage with their loved ones and improve the quality of life for everyone in the family.

The Eden Alternative has expanded its reach across the full continuum of care to include the needs of those living at home, where “more than 80 percent of care services are now being provided,” stated Chris Perna, Eden Alternative’s CEO.

“We selected Homewatch CareGivers as a partner because we have aligned values and well-trained professionals. This partnership offers us an opportunity to improve quality of life for more families with elders receiving care at home,” Perna added.  Homewatch CareGivers is the first home care company to roll out a focused company-wide strategy to bring these proven principles and practices to elders living at home.   This means that the enriching care provided by Homewatch CareGivers will go beyond addressing the immediate needs of elder clients, to supporting the continued growth and development of the elders in their care

Lonely Cowboy

Martin BayneBy Martin Bayne:Martin has been an assisted living resident for more than 10 years, and credits many of his ideas to his experiences as a Zen Buddhist monk and an MIT scholar. His website is TheVoice0fAgingBoomers.com; his literary journal—showcasing authors ages 60 and older—can be found at TheFeatheredFlounder.com.

I now share a table in our dining room with a 99-year old woman we’ll call “M”.
When I met M for the first time – yesterday evening at dinner – I cried uncontrollably for a good half-hour. In retrospect, I realize that my tears were the first shed since my mother died last month. The last four weeks I’ve been wondering when the grief would finally hit . . . and yesterday was that day.

I suspect it’s also because M has an uncanny resemblance to my mom: sunken cheeks, translucent skin, and the other myriad realities of old age – making her even more precious.

Today at dinner, I found myself again in tears – only the second time in 4 years I can remember shedding tears in the dining room. This time the sluice gates opened when M mentioned her dog, Cowboy, and how desperately she missed him, “He’s slept with me every night for eight years,” she said. I asked her to describe the dog and I then realized the dog is now being watched over by a member of the staff, here at my facility. In fact, I remember seeing the dog just yesterday – brought in by the very same staff member – who it turns out is M’s granddaughter! [I promised M I would look into it tomorrow].

But M said something else today that triggered a small epiphany. You see, “ambient despair,” a term I coined to describe the phenomenon in which residents constantly subjected to abnormally high rates of dementia, death, depression and disability, “fail” quicker than their counterparts who receive the majority of their care in the community and at home.

Yet I’ve always felt that something was missing from the equation. And tonight, as I bit into a crab cake, and M finished talking about Cowboy, she said, “The trouble with being this old is that everyone tells you what to do . . .as if you were a child.” That’s when the lights came on. The inconsistent, manipulative policies of both staff and administration in any top-down management system eventually trickle down to the residents.

Here’s an example: my facility has the ability to pump FM radio throughout the building, and every day they anesthetize the residents with the same, dreary, monotonous “golden oldies” station. All of which begs the question, “Did anyone ever ask the residents what they want to listen to?” (There’s a great little NPR affiliate station in Bethlehem, PA – just a stone’s throw from where I live.)
So, every day, at an arbitrary time slot – whether I’m talking to a friend, writing an essay or reading a magazine on the john, I can be absolutely certain I’ll hear those immortal words:

If you wanna’ be happy
For the rest of your life,
Never make a pretty woman your wife,

So from my personal point of view,

Get an ugly girl to marry you.
A pretty woman makes her husband look small

And very often causes his downfall.

As soon as he marries her

Then she starts to do

The things that will break his heart.

But if you make an ugly woman your wife,

You’ll be happy for the rest of your life,

An ugly woman cooks her meals on time,

She’ll always give you peace of mind.
Don’t let your friends say

You have no taste,

Go ahead and marry anyway,

Though her face is ugly,

Her eyes don’t match,

Take it from me she’s a better catch.
Say man, 

Hey baby.

Saw your wife the other day.


Yeah, she’s ugly.

Yeah, she’s ugly but she sure can cook.


Dementia – The Last Childhood

By: Victoria Orlando – Teacher, Artist, Care Partner, Volunteer and Person-centered Soul

Four faces of lifeI was thinking yesterday, just before listening to a USC webinar about their gerontology program, how the course of Alzheimer’s and other dementias can include as many years as childhood. Few parents would allow their children to live those years in a physical-medical model, depriving them of the psychological, emotional, social and spiritual dimensions of care, yet our culture tacitly endorses this for our elders. I was going to ask the staff from USC if they had begun developing a program for person-centered and creative dementia care, but the emphasis was on how they were developing technologies for elders, with technology being perhaps, a nice link between the old and the young. Respecting their approach, and realizing the program I am hoping to see will not be available next semester at USC, I continue to ask myself, how can we get mainstream education involved in providing compassionate awareness and career options for holistic dementia care?

As care partners, we can find courses from the University of Bradford, or sensitive training from David Sheard’s Dementia Care Matters in the UK, learn from Hogeway, the Eden Alternative, Planetree, MoMA, and many other programs that have led the way person-centered care, and follow the art, music, horticulture and movement therapists who have used their skills brilliantly to create new ways of creating expression for people living with dementia.  But, I will not give up thinking how wonderful it would be if a higher learning institution would welcome a full program – not just courses – that specifically addresses dementia care and its many components, emphasizing, in addition to the science explaining any of the illnesses, the emotional, spiritual, social, expressive programs to support it, starting from home-care through residential settings. Cancer used to be such a frightening disease; some people would not even use the whole word, yet now attitudes have changed. Alzheimer’s and similar illnesses need more light, more exposure so they are not so feared.  Once fear lifts, understanding and care expands. We might not have cures but we do have models of acceptance and profound compassion and healing inspiration and comfort.

Today, I discovered for the first time that the world-known Mind and Life Institute in Massachusetts dedicated “to building a scientific understanding to reduce suffering and promote well-being” – offers research workshops and up to $6,000 in funding to advance work on a particular project or idea.  Creating a holistic curriculum for compassionate and comprehensive dementia care in many settings could fit their initiatives.  To build such a program and to have a university or college that truly seeks to include and promote this program to lead the way would be fantastic – and beyond me!  The authors of the wonderful white paper you sent me have such a depth of expertise and skills for more of what’s needed to do this. Do you know if creating a full course of study is something the experts are thinking about? (How to get a well-developed program reflecting the CCAL white paper, “The Quality Chasm”, into a school, I don’t know, but out of curiosity, I’ve written a friend and former dean from Rutgers to see how a school creates programs.)

They say, it is important to be nourished by your passion because even if others seem uninterested, a dream has its own life and will give you its energy for your next step.  I have no titles or noted expertise in field of dementia, but I can see more in people than many, and it moves me along, just as it moves you and so many others who share this dedication.  To offer students the opportunity to develop, create and help deliver holistic programs for people living with dementia as a meaningful career path would be so valuable in generating a life-giving culture change around such illnesses. Given the anticipated number of people diagnosed with dementia ahead of us, my hope is that we will be ready for it; with programs equal to the people they serve.

Person-Centered Perspective in Senior Care

JP-ExpertJackie Pinkowitz, M.Ed., and Chair of the CCAL, discussed her experience with person-centered care with A Place for Mom, and writes about how utilizing a person-centered approach is changing the senior care industry.

Like many of you, I have been a loving family caregiver for four elder parents, each of whom had individual needs, which changed over time. I spent much time and energy seeking quality options across the spectrum of senior living: from independent living apartments, to assisted living communities, to special Alzheimer’s communities, and finally to long-term skilled nursing facilities.

As Chair of CCAL, I hope that you will adopt a person-centered perspective as you seek senior living options for yourself or your loved ones.
Such a perspective requires an understanding that person-centered care is a holistic approach that focuses on enhancing all the dimensions of one’s health and well-being, which includes:
•Physical health
•Intellectual being
•Social and emotional wellness
•Creative being
•Spiritual being

Person-centered living encompasses care, services and meaningful engagement that are planned according to residents’ personal preferences, values and goals. This approach honors each senior’s dignity, choice, self-determination and individuality, which enhances quality of life and quality of care for seniors.
What Person-Centered Care Means for Seniors
From the seniors’ perspective, this type of care includes the following principles and practices:
•“Nothing about me, without me.”
•I have the right to determine how best to meet my needs.
•My care should optimize my physical and psychosocial well-being.
•My care must be nurturing, empowering and respectful.
•It must include me, my family and care team in decision-making.

What Matters Most: Positive Emotional Connections and Experiences

When seniors offer their perspective on quality of care and services, they most often describe how the care or service was experienced by them. Although seniors would probably say, “It’s all about providing positive emotional connections and taking a new view of me,” I believe they are really saying something else. They are saying, “See me for the person I truly am. See me for all the things I believe in, care about, and love to do. Don’t diminish my personhood just because I need some assistance with activities of daily living.”
It’s all about relationships and valuing the uniqueness of each resident.

How Person-Centered Care Affects Memory Care

When applied in memory care settings, all of the above-mentioned values, relationships, experiences and practices are enhancing the lives of individuals with dementia and other cognitive issues.
How person-centered memory care enhances dementia patients’ lives, and how to create a person-centered memory care setting can be found on CCAL’s website.

Person-Center Care Slow to Evolve in the U.S.

In 2001, the Institute of Medicine’s (IOM) report titled “Crossing the Quality Chasm” called for a redesign of our nation’s healthcare system, and described healthcare in America as impersonal and fragmented. The IOM report stated that a critical element needed in the redesign was a shift to a person-centered approach moving away from the traditional clinician/disease centered one.

In the decade following the IOM report, however, little national progress had been made to shift to making person-centeredness the standard of healthcare and long-term services and supports (LTSS). The Affordable Care Act (ACA) of 2010 helps to reinforce the need for change by requiring that services funded by the Centers for Medicare and Medicaid Services be provided in a person-centered manner.

A growing body of empirical evidence indicates that person-centered practices are more pleasant to experience, help to optimize health and well-being outcomes, and result in higher satisfaction.
According to Jason A. Wolf, PhD, and Executive Director of the Beryl Institute, “The healthcare experience… is based on every interaction a patient and/or their family have on the care journey and is ultimately measured by the very perceptions those individuals have of their experience.”
Excerpted from: Dementia Care: The Quality Chasm, K. Love and J. Pinkowitz (eds). Falls Church, VA. National Dementia Initiative, CCAL

Seeking Person-Centered Living Communities

As you visit different communities, I encourage you to spend time at the community and see how comfortable you and your loved ones feel being there. Ask yourselves if you feel the following principles are being practiced:
•Every person is provided a choice, autonomy and independence, and is treated with dignity, respect and privacy.
•Services are provided in a respectful way that also includes their family and larger caregiving and support network.
•People have the right to determine their needs, decide how best to have those needs met, and to be provided a means to give feedback about the quality and nature of the services and supports.

Moving into a new community is a major transition for the prospective resident and your entire family, so I urge you to drop by the community at different times of the day and week. Chat informally with residents and staff. Are they friendly and positive about the community? Look for life enrichment within the community. Does it feel as if they are honoring the residents’ life experiences, choices and routines in the natural rhythms of daily living? These are the person-centered elements that contribute to residents’ and families’ sense of belonging and well-being.

Wishing you much success in seeking person-centered senior living!

Person-Centered Care in Urgent Care?

PennyCook2013smallBy: Penny Cook, Executive Director Colorado Culture Change

It’s rare for me to write a personal article for our newsletter but I want to share a recent experience I had with our health care system. A few weeks ago I started out my morning like many others by going for a run. Before I even took the first bounding step, I twisted my foot (I was looking up at the full moon and was taught once again that I can’t always do two things at once). Luckily I didn’t fall or one of you might have put an alarm on me. Not thinking anything of it, I continued on that run and only hours later did I realize my stupidity as my foot swelled and I became unable to bear weight on it. Normally I try not to access our health care system for myself because of my cynicism and stubbornness but when I couldn’t even walk, it was time. My son drove me to the nearest Urgent Care Center and even as I hobbled in I was dreading it. I thought the wait would be forever, I would just be a number, the doctor wouldn’t really care about me, etc. You know what? It ended up being the two most fun hours of my day. Really! Here’s why.

The first thing they did after asking my name is told me how long I would most likely be there. How respectful of them. Next they asked me if I prefer Penny or Miss Cook. Rarely do I get to make that choice. They even gave me the option of using a wheelchair or not. Not wanting to lose my independence there, I said no. After completing the required paperwork I sat down to wait. But then another pleasant surprise when someone came out to the waiting room and passed around a basket with a variety of snacks. And they left it there so we all had access to food at any time.

I was sure this couldn’t last when I was shown to a typical, sterile examination room but when the nurse came in and asked if she could take my blood pressure and pulse before she even got out the cuff, I knew these people were my kind of folk. It only got better from there. The doctor spent time with me and didn’t even laugh when I told him what I’d done. The x-ray technician asked what I did for a living and when I told him, we bonded over the fact that his first job in high school was in a nursing home. He told me how it totally changed what he thought of nursing homes because people were living vibrantly in small households with lots of choices. Hmm…that’s a little ironic. Come to find out he’s from my old stomping ground in Rochester, New York and worked at the iconic, Fairport Baptist Home, one of the pioneer homes of culture change.

As I got fitted just right for my crutches, I thanked everyone who I met that day. I told them what a pleasure it was to be treated as a person by people who obviously liked to do what they do and work where they work.

My son could only laugh as I gingerly navigated the sidewalk on crutches with a huge smile upon my face. We are changing this institutional world of health care, one small step at a time. If you have your own story about person-centered care, please share it with.

Using Touch to Foster Well-Being

by: Karen Love, Founder & Treasurer CCAL; Principal, Fit Interactive & Pathways to Care
ReikiTouch is one of the most basic elements of human development. Since ancient times and throughout the world, people have used touch as a healing technique. The word ‘touch’ is even used in our everyday language to convey a feeling. We say things like “that was so touching” to mean we are emotionally moved by something.

Therapeutic Touch is a term used to describe intentional and compassionate touch. It has the power to ease physical and emotional discomfort and increase feelings of calmness, relation, and a sense of well-being.

Therapeutic Touch uses different hand techniques depending on what part of the body is receiving it. Both hands are lightly and gently placed on various parts of the clothed body for five seconds or more so that the person can feel the warmth from the hands. Therapeutic Touch techniques are simple to learn and easy to use. The more practice one gets, the better their skills become.

Besides the physical benefits to ease stiffness, joint pain, and other physical discomforts, Therapeutic Touch can convey caring, affection, trust and an emotional closeness and connection that is especially important for people who have become socially isolated.

Reiki is a specialized type of healing touch. It is a natural method of hands-on healing that channels Universal life energy by the Reiki practitioner to the receiver’s body so their body can use the energy for healing and restoration of well-being. According to the American Hospital Association, 15% of American hospitals today offer Reiki as part of their services.

I participated in a research study funded under the Alzheimer’s Disease Supportive Services Program by the U.S. Administration on Aging that studied the use of Therapeutic Touch and Reiki by over 200 home care aides in the District of Columbia during 2011 to 2013. One of the findings from the study was the benefits experienced by the practitioners themselves. Applying Therapeutic Touch or Reiki instilled a sense of calming and well-being in them as well. (Click here for a pocket guide about Therapeutic Touch and Reiki.)

Excerpts from Julie’s Journal

trocchio_julieBy: Julie Trocchio, RN, M.S.,Senior Director, Community Benefit and Continuing Care, Catholic Health Association

I sat in a doctor’s office while the urologist calmly and rationally drew me a picture on exam-table paper of where the cancer was and what we would do about it. I sat calmly listening to him, but I definitely was not rational. I could not think straight.

What he didn’t know was that in those few minutes of our conversation, I had been transformed — from a busy, healthy person to a cancer patient who was about to step into the unknown and perhaps closer to the end of the line. He has no idea what is really going on inside of me, I thought, so how can he take care of me?

When our visit ended he said, “Well, by our age, we all get something. This is yours. Me, I have a bad back.”

But cancer is different. So is every serious illness. Walking back from that visit, I decided I would try to use my experience to show doctors and others what it was like to have cancer and to be a patient. I started by trying to describe how cancer shakes one’s sense of self, and that became the first entry in this journal.

One thing cancer taught me is that robust health can be deceiving.

I have always thought of myself as fairly cool. I am an active, walking-everywhere, traveling-to-interesting-places, non- (well, almost) TV-watching lady. Then I heard I had cancer — probably treatable, and even better, curable. And now I am none of those other things. I cannot exercise except for some stretches and short walks; my trips are cancelled; all my conversations seem to be about my health or lack of it. Oh, and I watch “Storage Wars” on cable TV, over and over.

I have so much time on my hands that I am boring myself. Even my dogs are finding me less interesting, missing their long walks. I miss laughing.
I used to talk to gym friends about politics, art and going to the ballet. Now I talk to my doctor about going to the bathroom. When he asks, “How are you feeling?” how do I tell him, “Uncool,” and have him realize this is serious?

They are so young, the doctors doing a residency in this specialty. “Where did you go to medical school?” I ask, and I learn they went to Harvard, or Georgetown, or George Washington University, or other satisfactory places. “Well, that’s good,” I say, while thinking, “Who was president when you were born?” Oh, dear.

My friend said I should ask how the bars were around their schools. If they say, “I was too busy studying to find out,” it is good news. I ask this once to a young resident, he replied, and then I tell him why I asked. “You got me,” he said. The bars in LA, he had answered, were just fine.

“No one wants to have an urologist,” I observe to one of the residents. “Most of us want to have a family doctor, lots of us want an obstetrician, a few want a plastic surgeon, but no one wants a urologist, you should know this.”

“But if we need one, we are very glad you are there,” I quickly tell him. “We are glad to hear that this is a special specialty, for the best and brightest.”

I went to confession. I had not gone since before Vatican II, so the timing seemed right. The priest, Father O., new to our parish and wonderful, said God forgives us our sins, but the sacrament of reconciliation celebrates grace and forgiveness. Father O. said he goes twice a year, sins or no.

My penance was an “Our Father,” and he asked if I remembered the Act of Contrition. I did, but it evolved into the Memorarae, “despise not my petition but in thy mercy hear and answer me,” which I have been saying at every stop light.

A lot of nuns are praying for me. According to Jennie, one of my two daughters, her college roommate has all of New Jersey praying for me. My primary care physician is praying for the cells to reverse themselves, and she is a very good prayer. A nun from Syracuse is up for sainthood and needs a miracle to make it all the way, so I have been praying to her. I think I have my bases covered.

In religious circles there is a joke about a man about to drown in a flood. A car comes by, offering to take him to dry land, but he says, “God will provide.” The waters rise to the second floor of his house and a boat comes by, offering to take him to safety. “No,” he says. Then, when the water gets so high he is on his roof, a helicopter tries to save him, but he insists that God will provide. When he drowns and gets to heaven, he asks God why he did not save him, and God says, “I sent a car, a boat and a helicopter.”

I, too, had three chances. When I first saw blood, and going to the bathroom hurt, my doctor said to go to the ER and let’s see if it is an infection, the most common cause. The physician assistant at the hospital gave me a prescription for an antibiotic and said, “See a urologist.” But I got better with the antibiotic, so I followed up with my doctor because a urologist was bound to do something awful to me, and it was probably just an infection.

I looked up “blood in the urine” on the Internet and read, “This must be attended to.”

At a solidarity meeting, Betty said, “I saw a drop a blood, just a drop, found out it was kidney cancer, had surgery and now I am fine.”

Three warnings.

I kept treating myself with lots of fluids and asking my physician, often when I was traveling, for a prescription for urinary tract infections. When I mentioned the blood during a physical, I made light of it, slipping it between “I have been eating more vegetables,” and “I think my eyes are getting worse with age.”

I told my GYN that when I got a urinary tract infection, I saw blood, and sometimes after spin class. “At your age, that happens,” she said. “Don’t stop spinning, it is great exercise.”

When I told my boss, a nurse, she asked, “How long have you been treating this as an infection?” When I said two years, she said, “Oh dear.”

I am a nurse too, or at least used to be. I should have warned myself.

I thought I was having lots of urinary tract infections, until we did a culture and no germs were there.

I saw a urologist who said my symptoms were most likely from stress, so I should take a vacation and drink less coffee, but to get a sonogram and “give us a sample to be on the safe side.”

The sonogram showed something was there.

“These tumors are very common,” said the radiologist who looked at the sonogram. “Take it out, get checked every few months for a few years, and you are good to go.”

But there were cancer cells in the sample.

“Get a CAT scan, and schedule surgery to get it out,” said the urologist. “All tumors have some cancer cells, so it could be minimal, but let’s find out.”

I waited two weeks to hear cancer was in the lining of the bladder but not the muscle.

“It could be hiding. I am haunted by the faces of patients who had hiding cells, so let’s dig deeper and biopsy again,” said the urologist.

“OK,” said I, who used to be afraid of anything a urologist might do.

Let’s do it and wait some more.

So how did I get this cancer? I don’t smoke, at least not since everyone did. I don’t drink diet drinks or eat processed foods. I exercise and have a positive outlook on life. I think it is those X-ray machines in airports. I told this theory to my recovery room nurse, who said I shouldn’t blame it on airports. He asked: “Were you ever exposed to well water? It might have had arsenic.”

Now the research is telling us that smoking — ever — seems to be responsible for a lot of bladder cancer. So, maybe, because of bad decisions in my 20s, this was my fault after all.

Between procedures, I went on a short business trip and loved every minute: driving to the airport, getting a newspaper, standing in line to board, finding a nice restaurant. At my meeting, no one looked at me with sad eyes or had any idea of what was going on in my bladder. “How was your trip?” asked daughter Elizabeth. “Wonderful,” I replied, “I felt so normal.”

“Well, you are normal,” she said.

“I sometimes don’t feel normal when I think of what is going on,” I said.

She looked at me and said, “Then don’t think about it!”

So I stopped thinking about it most of the time, and she is right. It helps me feel normal.

I make my doctors cookies. I want them to know that I am not just the 2:15 appointment, but someone. I want them to know I appreciate their gifts but that I have gifts, too, even if it is just mixing butter with sugar and flour and putting it in the oven. I want them to look forward to seeing me and what I bring, to give me full attention. It always worked for subcontractors when we had our house remodeled. I am hoping it works on doctors, too.

The cancer center websites tell me a lot: the warning signs, probable causes, cell structure, treatments, percentages. But the National Institutes of Health (NIH), the Cleveland Clinic, Johns Hopkins, Sloan-Kettering, Dana-Farber — they don’t tell me what I really want to know: What will happen next? Will it hurt? Will it work? What then?

My friend Lawrice said I should ask, What am I supposed to be learning from this?

So, OK, what have I learned: I have more friends than I thought and they are better friends than I thought. You cannot do enough sit-ups to protect yourself from cancer. Feeling well does not mean being well.

I wonder if this is what she meant?

“I am really a lifestyle urologist,” says my doctor (something I wish he had told me before operating on me twice), “so I am sending you to two specialists.”

One is an oncologist who specializes in blood and urinary cancer. I am a bit concerned about this because those cancers don’t seem to have much in common, but she did a fellowship at NIH so that is all right.

The other referral is to a urologist who specializes in cancer. I am concerned that is a euphemism for cancer surgeon (which it was), and surgery is not my personal treatment preference. But he was kind and competent. Just what I needed.

A classmate’s husband is a cancer guru and promised to look over my treatment plan. A friend came through with the name of a personal trainer who has recovered from cancer and helps others to do the same. The Cancer Hope Network gave me Zooey and Anne, lovely ladies who have been there, done that, with bladder cancer. I am assembling quite a team.

As a student nurse, a real nurse, as a visitor, I have passed many doors labeled “Oncology” and each time, yes, each time, I have said, “Not me, thank God, this is not for me.” Today it was for me, and I was happy to get the appointment so quickly. The office had dim lights, soft music and there was a waterfall. The oncologist was warm and welcoming and sympathetic. But still it all meant CANCER.

So it is not an infection, not stress, not a benign tumor and not an easy kind of cancer. It is the bad kind of bladder cancer (who knew there was a good kind?). Three doctors explained it to me, and I think I finally get it, although I acted like I did the first time. I say, “Take it out, get rid of it, I hate this troublesome bladder.”

But then I think, maybe if I pray hard enough, a miracle will happen and it will go away by itself. But no, that won’t happen. I need to be optimistic that surgery will go well, and I will soon be better.

So there you have it, all the stages: denial, anger, bargaining and finally acceptance. Guess the books are right.

Trish was in my nursing school class and now does mind/body work. On the phone, she asks, “What is troubling you right now?” I say, “I think of surgery as an assault on my body, a violent act about to happen.”

For 30 minutes, she guided me to realize surgery will be healing, not damaging. “You must talk to your body,” she said. “Tell your circulatory system to get ready, your immune system to stay strong. Tell your urinary system you are sorry it is hurting. Tell them all you will need them to get well, that you love them and that you will all get through this. This works,” she says. And I believe her.

Finish this, finish that. Cancel this meeting, reschedule another. Find a substitute, find a gift to thank substitute. Tell her, her and him. Buy lightweight books and lightweight robes. Change dental appointment. Make list for wonderful sister, Suzy, who will be coming from Wisconsin. Google “gas pains after abdominal surgery,” and buy what is recommended. Get pre-op prep and post-op pain meds. Buy and send birthday presents, order Christmas presents. Pack a bag, repack. Go to church to get blessed. Rest. Reassure everyone. Thank people for praying.

Bladder cancer has become a full-time job.

Here are my goals for surgery:

Don’t get an infection
Stand and walk that night
Walk a lot
Get my digestive system working quickly so I can get home
Leave cancer behind

Here are my observations:

I always thought that ICU nurses cared for machines, not people, but turns out they are the best, most compassionate nurses in the world. I had the same thoughts about operating room nurses, and the best nurse I met was an OR supervisor. She took charge of making sure I did not have pain after surgery. Some things you have to experience to believe.

All the quality policies in the world cannot make a quality hospital. Nurses had policies for doing a nursing assessment on each 12-hour shift, but only one nurse did so. All staff must wash hands entering a room, but only 1 in 3 did. When I asked a nurse to wash her hands, she gave me some look!

Travel and temporary nurses should be banned. They did not know the equipment or the policies. Nurses and aides who worked there the longest were the nicest, most caring, most competent. Longevity matters.

A teaching hospital is full of teaching. My first morning walking, I opened my door to the sight of about a dozen green-clad med students in short white jackets, spilling over the chairs in the chart room like puppies. I thought I was in an episode of “Gray’s Anatomy.”

The residents are so earnest, even when I tried to coax personal information and gossip. One of them, the most solemn, said very matter-of-factly when I had a discouraging moment, “Hey, this is the biggest surgery we do, and you are doing great.” It was the best hug I could have had.

Doctors don’t talk to nurses. These groups are on parallel paths, caring for the same patient. I would say to a resident, “… as I told the nurse, this is happening,” and it would always be news. They work in teams, but doctors and nurses are not on the same team. Makes me wonder what team I am on.

Infections happen, despite all efforts. Five days after discharge, I was in the emergency room for 10 hours, then readmitted to get IV antibiotics.

It takes a village to recover from surgery. Every day in the hospital, I was visited by the residents on my service and a team of pain specialists. My daughter Elizabeth came daily, usually in the evening to play a few hands of gin to help me fall asleep. My wonderful sister Suzy came to take me home, and she never stopped cooking and doing. Her custard was amazing.

Daughter Jennie left her Florida school where she teaches — and her dissertation — to spend a week, ordering clothes and supplies and taking me on walks outside. Home-care nurse won’t quit until I get the hang of self care. Husband stepped up to all the chores. I told friends we did not need meals, but several brought soup, and each bowl was wonderful. I am not used to needing people, but needing I did, and the help was not only welcome and humbling, but healing.

So many lovely and funny and touching cards and notes have come. But my favorite words came from a catalog: “Life is not about how fast you can run or how high you climb, but how well you BOUNCE.”

I am back in surgical admitting for the fourth time; I am getting a port for easier chemotherapy. I see some familiar faces, including the lovely lady who, my first day, had just graduated from probation to full time and who had taken down my information each time. (Actually she collected the exact same information each time — what are electronic records for?)

Everyone is nice, as always; everyone knows what they are doing; everyone went to good schools (I always ask, and I quiz the radiologist on bars in my hospital’s neighborhood). As I am wheeled into the room, my nurse and I spot a dozen blue-suited young men and women.

“FBI?” I ask the nurse. “No, looks like Secret Service,” he replies. Turns out they are med students interviewing for residencies in radiology. “Good luck,” I say to them.

I had been promised music during the procedure and that it wouldn’t hurt a bit. The music is Bing Crosby Christmas carols, and I tell the radiologist a surgeon would not stand for this. But they were right about it not hurting.

Monday is my first day. Daughter Elizabeth is coming with me, and we will be bringing catalogs and an iPad for shopping, because it is “Cyber Monday.” We have done other things to get ready; for example we packed snacks and books and hard candies from sister Suzy, who heard that chemotherapy can leave a bad taste. Elizabeth’s friend, Richard, who is an oncology nurse, gave me Chemotherapy for Dummies, which I have read carefully. I am wearing Betty’s Cancer Survivor bracelet because she is cured and does not need it, and Jennie’s Fighting Bladder Cancer bracelet which has the official bladder cancer colors: marigold, blue and purple. I have asked my sodality to pray that the chemotherapy will be healing, not hurting.

Yesterday we stopped by church to get a blessing for this next stage of the process. Father O. proved to be a powerful advocate with the Almighty before my surgery, so I am sticking with him, and I thanked him with blueberry cookies.

I have been listening to and will bring an imagery/visioning/meditation tape. I decided against the ones with warring themes — little soldiers or motorcycle gangs battling cancer cells — in favor of a tape about a glowing light and being surrounded by loving people from my past and present.

I changed my toothbrush, as you should for any big occasion. I also had my hair done. Looking my best for a new audience seemed the right thing to do.

Yes, I am ready.

Waiting seems to be the permanent speed in oncology. Everyone is gentle, and no one is in a hurry. Good thing I left my type A personality behind months ago. We wait for blood work, then to see the resident, then to see my oncologist,
Dr. A-C.

Blood work shows red cells up, so I can cut back on the iron pills. I am able to advise the resident what to do for her twin boys who are teething. Dr. A-C is informative and caring, and I am glad Elizabeth can meet her. Elizabeth says, “I feel well-informed now.” The doctor writes me a prescription for an antinausea drug that she says I will not need.

Once in the infusion room, sunny and surprisingly cheerful, my chemo nurse explains everything and gives me hand-out information about the drugs and side effects.

“Psst,” says Shirley, my neighbor to the right, “I have found it best not to read those things. They only put ideas in your head.” So I put it all away and start a great mystery novel.

Elizabeth stays for five hours, and we eat our way through the treatment: graham crackers, nuts, turkey sandwiches, soup. We have so much fun talking that we forget to cyber-shop. When it’s time for Elizabeth to get ready for her job, Debbie from my office comes to sit with me, and she swears it is not bringing up past bad memories of her own chemotherapy (which she did without taking a day off). My neighbor to the left shops feverishly on his computer. “Yes!” he yells, “I just got a $185, complete Nerf war game for $56!”

The drugs start. First I get saline for hydration, then two antinausea medicines and a steroid to boost everything, then Drug No. 1 and then No. 2. For each of these big-boy drugs, I listen to my imagery tape and have a vision of being surrounded by friends and family in Cape Cod with a warm light coming from a fountain that flows into every organ, every cell.

I did not know how I would feel: weak, sick? I had told myself, I will feel exactly the same. But what I feel is good. It’s working — all of it, the therapy, imaging, the prayers, the support (I got over a dozen “You go, girl” e-messages during the day), and the belief that all will be well.

There is nothing humorous about chemotherapy’s side effects, but there are some heartwarming signs: Elizabeth brings home a thermometer and saltines. Wonderful sister Suzy researches integrative care solutions and suggests “sea bands” used for sea sickness. Jennie orders them — and everything else Amazon has for nausea. Husband shops for oyster crackers and ginger ale. Lawrice brings chicken soup and good company.

Wonderful brother Peter sends the most unexpected thing: ice cream. I think mint chocolate chip may be chemotherapy’s equivalent of penicillin for strep. Jill, who has had chemo twice, promises to walk me through this, and she promises it will not feel like this every day.

My insurer had a nurse manager call; she mostly talked about herself but distracted me for 15 minutes. And the dogs won’t leave my side, but that might have to do with the oyster crackers I generously hand around to all of us.

My college roommate, Margaret, takes me for my second chemotherapy. She is a labor and delivery nurse; I knew she would be helpful. She gets a phone call right when we reach the treatment room. “Is it OK to use a cell phone here?” she asks the infusion nurse. “Of course,” is the answer. “There are no rules.”

In other words, what happens in oncology, stays in oncology. It’s true. Where in other parts of the department doctors rule, here, (fabulous) nurses rule. An example: Meg, my nurse, hears that I have been feeling like crawling in a hole, and she asks to see what I have been prescribed. She rearranges the order and times of the medicines and says, “I think this will work for you.”

There is a friendliness here you never see on the Metro or at the grocery store. “Your purse is great,” I tell the wife of a chemo neighbor. “$75 Vera Christmas item, my sister got it at an estate sale for $1!” she replies, and we spend 20 happy minutes talking about bargains and how to find them. “Love your dress,” calls a lady who is leaving for the day. “Vermont Country Store,” I shout across the room. “They mostly sell candy and nightgowns, but they have three dresses, and I got all three!”

Around the room, lots of pens and papers come out, since everyone here is looking for advice, any advice.

- See more at: http://www.chausa.org/publications/health-progress/article/september-october-2013/excerpts-from-julie’s-journal#sthash.LvIFMQBe.dpuf

Building a Person-Centered Culture for Dementia Care


dementia care SmallWith millions of Americans experiencing dementia and the number growing with an aging population, researchers continue to seek effective prevention and treatment methods, while many long-term care providers are placing more emphasis on how best to care for people with dementia.

“We’re hearing more from families regarding their concerns about the quality of care and services available for their loved ones with dementia, not surprising given the millions of people affected by it and how costly care is,” says Jackie Pinkowitz, M.Ed, chair of CCAL-Advancing Person-Centered, a national advocacy organization, that created the person-centered National Dementia Initiative. Pinkowitz is also an instructor at Rutgers University School of Social Work, Gerontology Program.

The 2013 Alzheimer’s Disease Facts and Figures from the Alzheimer’s Association estimated 5.2 million Americans have Alzheimer’s disease, a number projected to increase to 7.1 million by 2025 and 13.8 million by 2050.

“The best practice is person-centered care,” reports Ruth Drew, director of family and information services at the Alzheimer’s Association in Chicago. “Care is focused on the individual.”

Person-centered care offers a humanistic and holistic approach to caring for someone. It incorporates not only physical considerations but also the person’s psycho-social and spiritual well-being. “It’s a multidimensional framework, and it requires owners and a governance board wanting to make these changes,” says Pinkowitz.

The Dementia Initiative brought together an expert panel to determine best person-centered practices and offer guidance. The initiative produced a consensus white paper, Dementia Care: The Quality Chasm. “We want stakeholders across research, policy and practice to use this paper as a call to action to collectively address and advance person-centered solutions,” Pinkowitz adds. The document presents a history of the philosophy for person-centered care as well as operational and personalized practices for delivering care in this way. It also offers recommendations to address barriers and challenges to care.

Many LeadingAge members have embraced person-centered care and have developed innovative programs to advance dementia care within their organizations.