Love delivered!

Five or so years ago, during the Advent season, I was driving on an interstate when I approached a large flat-bed truck.

It was the type of truck that typically transports large pieces of road equipment or sections of a bridge.

As I approach the truck in the passing lane, I assumed it was empty, but as I continued to overtake it, I could see it was carrying something small but wasn’t able to make out what that cargo was until I was side-by-side with the truck.

There, strapped tightly down on that long truck bed, was a single item: A Radio Flyer wagon.

While I was never able to see the face of the truck driver, I could easily imagine the rest of the story: A precious gift was on its way to brighten the life of a young child at that moment missing a working parent.

Love delivered!

I recall that image when I think of all of Diakon’s staff members going about their work throughout the year—but, especially, now during this season. There are so many people involved in helping senior living residents, hurting families, children and youths and so many more.

Diakon is not unlike that large truck—a big, sometimes complex organization that always is focused on delivery of the small, precious cargo of a “red wagon”—acts of service given one at a time … custom-designed for each of God’s children we serve.

Love delivered!

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Helpful holiday tips: How to visit someone with Alzheimer’s disease or similar illness

The holidays can be a very emotional time for everyone, including families and friends who have loved ones dealing with Alzheimer’s disease and other forms of cognitive illnesses.

For those affected by cognitive degeneration disease, the biggest thing to remember is to be accepting of what people feel.

Holidays can be filled with a wide range of emotions ranging from pure joy to utter sadness. Regardless of the emotion, accept it and try not to judge your feelings or the feelings of others during this time. Holidays may feel and look different because traditions are not able to be followed exactly as before, but that does not mean you cannot have a meaningful experience.

Here are a few tips that can help make your holidays happier:

  • Take a different perspective on the visit

One of the reasons visits can be a challenge is disease progression. Over the course of the disease, attention span changes, interests may vary and memories fade in and out. You may not be able to talk to the person the way you used to. Maybe you used to sit and have tea with your loved one. Now she can no longer sit for long periods of time or maybe she no longer likes tea. This changes our ability to connect, so we have to rethink our approach to the visit.

 

  • Step outside your world

Forget what you know to be true and enter into their world. Often loved ones’ perceptions may be different from yours. For instance, if they can’t remember something in the past, do not argue with them. Arguing or pleading with them to remember something can increase frustration for everyone. Contradicting their reality does not work when you are visiting with someone whose brain has a difficult time making sense of the world around them.

 

  • Be prepared to participate in an activity

Often, an activity such as listening to music or looking through a photo album may help make the visit enjoyable because it allows you to make a connection. If your loved one is in a care facility, reach out to the staff to inquire about fitting activities.

 

For example, a direct caregiver may be able to tell you that your loved one has a newfound love of sitting next to the garden and watching birds, something he or she may have never done before. Or perhaps a loved one has developed a new enjoyment of vanilla milkshakes or hamburgers. Use whatever current interests are to guide the visit.

 

Times can also play a factor in visits. Again, use your facility staff as a resource; they may be able to tell you that your loved one gets tired in the afternoon and when she gets tired, she gets tearful.  Similarly, if you are bringing home a loved one for the holidays, the staff may share with you the best time to take her out and when to bring her back to reintegrate her into her surroundings.

 

Remember, as the disease progresses, likes, interests and best times to visit may change. What may work on one visit may not work on another. Try to stay flexible with your goals and expectations.

 

  • Don’t ask loved ones to do something they can’t do

It is often hard for their brain to recall memories. Do not ask them ‘who am I?’ or encourage them to ‘think harder’ when they cannot recall a person or memory. As much as you desperately want to maintain a connection, asking them to do something beyond their cognitive function may cause stress and aggravation.

 

  • Embrace the present

Cognitive impairments are heartbreaking diseases. It’s difficult to watch someone you love deteriorate and change into a totally different person in front of your eyes.

 

This transition induces grief and prompts questions such as “how do I still love this person if he or she is not the person I knew?” Although it may seem as if your loved one is slipping away, remember that a person with dementia wants to remember you, but his or her brain is just not physically capable of doing that.

 

Although you desperately want to maintain your previous connection, the greatest gift you can give yourself or your loved one is a meaningful visit reflective of the present.

 

Know that, even with these tips, a visit can be difficult. Sometimes, you may not know what to say or do.

 

Regardless, acknowledge that you are doing the best you can. If you “go with the flow,” more often than not you will have a successful visit.

—Michelle Gaugler
Personal Care Administrator
Luther Crest, Allentown, Pennsylvania

With 24 years of experience in long-term care, Gaugler understands the struggles facing residents with memory-related illnesses and their families. Dedicated to enhancing life, she has contributed to memory support for patients in all levels of care.

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adopting children with special needs

Serving children with special medical needs

Working in the field of adoption and foster care for 42 years, Marcia Moll is a social worker with a master’s degree in early childhood development. As the mother of two grown adoptive children, she understands firsthand how unconditional love for a child can transform a family. Below, she discusses a new Diakon’s foster care program, designed to touch the lives of children with special medical needs throughout eastern and central Pennsylvania.


Medically fragile foster care can change lives!

A little girl was hospitalized for six months in a children’s hospital waiting for an organ transplant. She spent most of her time being cared for by the hospital staff because her birth family was not involved. The county came to us at Diakon Adoption & Foster Care and asked if we had a family who would be a foster family until her transplant. A family stepped forward. 

They had adopted a child in the past and, unfortunately, that child had passed away. This family understood that a child should live in a family environment instead of a hospital setting. 

Fortunately, the little girl’s foster parents were able to visit once or twice a week. They met with the nurses and doctors and learned to care for the child. After eight months of hospitalization, she was finally able to be released to her new foster family. The family ended up adopting her, knowing full well that her survival rate—because of her age and the type of organ needed—is less than 50 percent. 

Yet, the difference they made through their love and commitment is outstanding. The little girl is now living the life of a typical child—she is not lying in a hospital bed being cared for by hospital staff; rather, she has a family and has blossomed to a point no one ever expected.  

Medically fragile foster care: A special child and a special 

Medically fragile foster care involves a child in the foster care system who has a continuing medical condition. A child’s condition may be something easily maintained with medication and routine doctor’s appointments—such as asthma. Or it can be a more severe or life-threatening diagnosis, such as cystic fibrosis. A child may or may not be ambulatory and sometimes medical equipment may be needed for the children to live the best life they can. Although the medical conditions are diverse, the children have one thing in common: They need to be cared for by a loving family.  

The program serves the needs of county children and youth workers who need foster families to care for a child with medical needs—in hopes the child will eventually be reunited with his or her birth family.  Foster families ensure that the child receives the appropriate medical care while also offering stability. 

The families also serve as mentors for the birth family by helping them fully understand the medical issues involved. In cases in which children cannot be reunited with their birth family, we hope the foster family can become a permanent resource and eventually adopt the child. 

Medically fragile conditions arise in varying situations

In most cases, children with medically fragile conditions come to us directly from a hospital setting, often because their medical condition elevated to a point they needed hospital care. If a child is born with a medical condition, the birth parent may feel totally overwhelmed and the child may need more support than the birth family can provide. 

In other cases, some children are born healthy and medical disorders develop or conditions arise as a result of abuse or neglect.  If a child is suffering as a result of parental negligence, it may not be the goal to unify the child with the birth parent until the birth family receives proper services and the situation is rectified.  

Weencourage any family already thinking about fostering or adopting to look within their hearts to consider a child who has a medical condition. Don’t sell yourself short. Our life experiences often prepare us for caring for a child with medical needs.  

Maybe, for example, we have a family member with diabetes or asthma or another condition and we could use this knowledge in offering care for the child. But even if families do not have an understanding of a particular medical diagnosis, they just have to be open to learning. The situation may not always be easy, but what seems to help them through it is their unwavering desire to help a child. 

We are here to help 

At Diakon, we believe strongly in providing support services for all of its foster families. We offer general training that prepares a family to bring a child into their home. And for medically-fragile program foster families, we ensure they receive the proper training to care for a child with medical needs. 

In some instances, we may arrange training provided by hospital staff, medical supply representatives or our own staff. Regardless, we work as a team. We will not place a child in a home until the family members have a level of confidence in their ability to care for the child. 

In addition to training, Diakon staff is always there to help throughout the process. On a weekly basis, case managers help families organize and manage all of a child’s medical needs.

Another avenue of encouragement comes through our support groups. On a monthly basis, Diakon offers families the opportunity to meet and share concerns and advice with one another. Families often discuss referrals, doctors, nurses and how to be a strong medical advocate. We often hear that support groups are a tremendous asset to our families.

The need for families is greater than ever …

There are not enough families to meet current needs.

Counties are scrambling to find foster families who can be a mentor to birth families—which is the primary goal. In fact, 10 to 15 percent of foster children have some sort of a medical need beyond everyday parenting. But fewer than 10 percent of families are willing to take a medically fragile child. We don’t see families coming forward in large numbers, but we do see the need growing more every day. 

I want to remind anyone thinking about foster care or adoption to look inside their heart. Every family who steps forward to care for a medically fragile child makes a lasting imprint on a child’s life. We are working hard to spread the word about this amazing program that serves special children with special needs.

A fun way to give back… Dining with Diakon

Jill Kearney, founder and CEO of Senior Moves by Design (a division of the JDK Group, LLC), shares her views on the upcoming Dining with Diakon* event. Senior Moves by Design is a company that primarily moves older adults into senior living communities, helping them to find “treasures” and design their new home around things they love. The company also helps them to sort through their current home so items can be given to family or donated. Further, they stage houses to sell and do a full pack and unpack on moving day.

*On Sept. 28, 12 “celebrity chefs” from business, industry, and non-profit organizations will gather at Bethlehem’s SteelStacks. Offering an enticing menu of dishes and desserts, the chefs raise funds for Diakon Adoption & Foster Care Services, which serve children and families throughout eastern and central Pennsylvania.

How did you feel when you were asked to be a celebrity chef?

When I was first asked to represent my company at Dining with Diakon, I was flattered, but by no means call myself a celebrity. I have a small company with 23 employees. To think that I will be joining a high caliber of corporate heads and local television personalities is kind of funny—but I feel very flattered to be included. This event is a wonderful way to support and donate to the cause. This is my first time going to Dining with Diakon. I am excited not only to attend, but also to be a chef.

Why do you support Diakon Adoption & Foster Care?

Senior Moves by Design believes it is possible to have joyful moves and that what we do is just as much a ministry as it is a business. To me, this is an opportunity to represent my business while ministering to others. In addition, my niece and nephew are both adopted and a few of my best friends adopted children. I have always been pro-life, so from my perspective, we need the help and support from agencies like Diakon Adoption & Foster Care to make sure all children have “forever” homes.
As a business owner, why do you believe it is important to give back?

When you are building a small company, it is easy to get absorbed in the day-to-day tasks that keep your business running. To be able to take a little time and focus on something that you don’t do every day, but that makes an impact on others, is important. In fact, it is a gift. I feel blessed to be able to do it. This opportunity makes us want to do more.

What will you be sharing the night of the event? What are your favorite recipes?

For the event, we were awarded the chocolate table. My favorite food really is a toss-up between chocolate or shrimp scampi. Although I normally cook without recipes, here is an outline of my favorite shrimp scampi dinner followed by my favorite chocolate recipe.

Shrimp Scampi
4 tablespoons Irish butter
4 tablespoons extra virgin olive oil
5 cloves of garlic fresh garlic minced
1 teaspoon of salt
½ medium sized yellow onion diced
2 medium sized zucchinis
Pinch of red pepper flakes
½ pound of angel hair pasta
1 pound of peel shrimp and deveined

DIRECTIONS: Boil pasta by placing a tablespoon of olive oil in the water along with a clove of garlic and 1 teaspoon of salt. This allows the pasta to pick up the garlic flavor.

In a skillet, melt the butter. Add olive oil and ½ finely diced yellow onion. When the onion is clear, add the garlic. Take 2 medium zucchinis and cut them into half inch cubes. Place them in the skillet with the olive oil, garlic, onion and butter. Once the zucchinis soften and begin to turn slightly brown, add pinch of red pepper flakes and the shrimp. Toss for about 3 minutes or until the shrimp turn pink. Warm plates. Place pasta on the plates. Top pasta with shrimp mixture. Feeds 2-4 people.

Cappuccino Mouse Cup
http://www.diakon.org/dining-with-diakon-adoption/recipes/details.aspx?recipeId=2288

In closing, I am thankful for this opportunity. Giving back is certainly sweet!

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Foster-To-Adopt: God Knew My Heart Needed You

In this post, Lydia Carfagno, an adoptive parent, shares her difficult two-year journey that led to one of the greatest joys of her life—motherhood. She adopted her now-4-year-old son, Trevor, through Diakon Adoption & Foster Care’s legal-risk (foster-to-adopt) program. Legal-risk placements involve children and youths who are in the custody of a county’s children and youth services. Children are placed in foster homes with the intent of reuniting them with their birth families; however, if that does not occur, the foster family often seeks to adopt the child or youth.

Why Foster-To-Adopt?

As I was growing up, my mother worked and volunteered at a crisis pregnancy center. As a small child, I witnessed my mother counseling women and providing them with the necessary resources to maintain their pregnancy. When I was young, I would tell my mother that I wanted to grow up and take care of babies that did not have mommies and open my own orphanage. I remember frequently checking our front door to see if someone left me a baby to care for!

Fast forward: I grew up and obtained a college degree in recreational therapy. As a therapist, I worked in various pediatric hospitals. Throughout my work experience, I witnessed firsthand many children suffering from neglect, abuse and trauma. Each of these children made my desire to adopt grow even stronger; however I knew I was not currently in the position to do that.

Upon marrying, adoption was something we always said we would do “one day.” We struggled to get pregnant and even experienced a life-threatening ectopic pregnancy. The topic of adoption that was once on the back burner quickly became a burning desire in my heart.

It was something I believed had to happen immediately. Because of my experience in the health-care field, I was aware of “foster-to-adopt” type programs and I quickly began researching agencies.

Why Diakon?

In March 2015 we decided to take the leap into fostering and adopting. The only thing left to do was pick an agency. A lot of prayer and discussion went into our decision to begin this journey.

We had just started attending a new church. The Sunday after we made our decision, the message was about foster care and adoption. Numerous families shared their journeys that morning. My husband and I felt as if God was truly speaking to us and giving us the extra push that we needed.

As I was leaving church, I went to grab my coat off the coat rack; directly above my coat was a flyer for Diakon Adoption & Foster Care.. I pointed it out to my husband and we both took it as God pointing us in the direction we needed to go. We went through Diakon’s training sessions in April and May 2015, completed our home study in June 2015 and Trevor was placed with us in September 2015.

What was it like the moment you first saw your son?

On Sept. 18, 2015, we made the best, yet scariest, decision of our lives. My husband and I were both at work when we received a phone call from the agency regarding an emergency placement. The phone call came around 12:30 p.m. We both rushed out of work to attempt to prepare ourselves for Trevor’s arrival, but all we really did was pace until Trevor arrived in our driveway at 3 p.m. in the children and youth worker’s vehicle. As they pulled in, we could hear Trevor in the back attempting to talk. It was evident right away that he had some speech delays.

My first glimpse of him, I thought: “Wow, you’re a big guy, yet so unhealthy-looking.” We were advised by the caseworkers that we should bathe him immediately. Trevor was immediately captivated by our pets and the few toys we had. I quickly coaxed him into the bathtub, which I ended up draining and refilling three times. We had to stop him from drinking the bath water and sucking water out of the wash cloth. This is also when we discovered bedbug bites all over his little body.

Although appearing confused, Trevor engaged with us immediately. He had absolutely no verbal language skills and resorted to pointing and gesturing his wants and needs. After bathing him, we dressed him (I had some 18-month clothing) and went to a department store.

I remember on the drive there thinking, “What have we gotten ourselves into?” We knew absolutely nothing about this little human. We had no idea what he liked, disliked or feared. We didn’t even know his medical history or if he was allergic to anything. We wandered through the store for about an hour-and-a-half putting anything he pointed to in the cart. As “crazy” as it probably looked to others, it all felt perfectly right.

What health obstacles did Trevor face?

It quickly became apparent that Trevor had social-emotional, developmental and health concerns. Some were easily noticeable to the lay person; however, coming from the medical field, I knew there were deeper underlying neurological challenges.

Our first obstacle to tackle was Trevor’s limited communication. He would become terribly frustrated (rightfully so) when he was not able to express himself. We immediately started teaching him basic sign language. We also set up evaluations with Early Intervention, pediatricians and various other specialists.

In addition to Trevor’s developmental delays, he had asthma (which had gone untreated) and required multiple surgeries because of medical neglect. Trevor’s days were quickly filled with various doctor and therapy appointments. Trevor made tremendous gains medically and developmentally once he was receiving all the needed services.

What prepared you for Trevor’s health issues?

As teens and young adults, my husband and I worked with individuals with special needs.

It quickly became apparent that God was using these experiences to prepare us both (years later) for Trevor. Not only did we have some experience, but our support system also did. My mom and my husband’s parents are special education teachers. This is not to say we knew exactly what we were doing. There was still a lot to learn, and a lot of scary, uncertain times. Again, this is when our faith came in to play. Trevor had his own prayer team of more than 100 people praying for him daily.

How did you cope with biological family visits?

Visits with Trevor’s birth family were definitely the most difficult part of our journey. We made a point of communicating with them as much as possible. At the start of this process, both of Trevor’s birth parents were incarcerated. Initially, Trevor visited them in jail every other week.
Once they were no longer incarcerated, Trevor visited with them at a supervised location and then eventually visits became unsupervised. This was particularly difficult as we had very little information as to what was occurring during visits. We created a communication book that we would write to one another in.

Unfortunately, Trevor’s birth parents were unable to provide stable caregiving. As with all children in foster care, the county sought other biological family members as a resource for Trevor. This process was terribly difficult because we had become so bonded with Trevor, and he was terrified to leave us. Our Diakon caseworker, the various health professionals Trevor saw regularly and Trevor’s prayer team were our support and advocates.

What is your best advice for someone looking to foster-to-adopt?

Almost everyone we come in contact with has made the statement, “I could never do what you are doing”’ or “You are better than me; I could never do what you are doing because I would get too attached.” Initially, it was difficult to find a response to statements like this.

Now, I typically respond with “I never said I could do it, but I said I would do it.” I am constantly reminding myself that God does not call the equipped; He equips those who are called. This journey has been one of the most terrifying and challenging experiences of my life. We fought for Trevor’s best interests for 689 days.

We were assigned this mountain to show others that it can be moved.

I know there are other men and women out there who have a deep desire to foster and adopt. Do not let fear and uncertainty stop you from fulfilling your calling. These children need love more than anyone’s need to protect his or her heart. No one should be afraid to grieve. What they should be afraid of is what happens to these children if no one takes the risk to love them.

Do you have any regrets?

Was our journey easy? Absolutely not! The past two years have been long, messy, hard and filled with grief. However, the day Trevor came into my life I knew what my purpose was. I promised him that day, and every day after, to love and protect him with everything I have.

Trevor has shown me a part of me that I did not even know existed. The day I became his mother (or “foster mom”) my life was forever changed. I found strength and grit inside me that I did not know was even possible. Sometimes God will put a Goliath in your life for you to find the David within you. God knew my heart needed Trevor. Trevor is without a doubt worth it all!

What does the future hold now that Trevor is officially your son?

Trevor is the most strong, brave and resilient little boy I have ever met. Although there are still a lot of unknowns in Trevor’s future because of the trauma and neglect he experienced at a young age, I truly believe he will overcome any obstacle he faces.

He entered our home a nervous, timid, unhealthy toddler and today he is full of spunk and joy. He loves to explore and experience all life has to offer. He is compassionate and intelligent and has just about everyone he meets wrapped around his little finger. The future for Trevor is limitless. God has great plans in store for him.

Trevor’s adoption occurred just recently so we are still in the process of figuring out what life is like without court, paperwork, caseworker visits and the dark cloud of the question, “will he stay forever?” hanging over our heads.

We are certainly enjoying our new forever family and cannot wait to see what God has planned for the three of us.

—Lydia Carfagno

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Quality adult day care hits a homerun

Blog posts come in all shapes and sizes … sometimes they are personal reflections or ruminations on various topics … at other times, they tell a story, often to demonstrate a key point … at other times, they express heartfelt appreciation for how someone has been helped … as in this recent example:

To the staff of Diakon Adult Day Services at Ravenwood:

I wanted to send you a thank you on behalf of my family for the wonderful care you provide for my father, Robert “Bob” Wilson. I wonder if you know just how much the work you do is valued and how important it is to so many? Daily you have a positive impact on so many lives.

You never knew my father the way I did. Since his stroke, a little more than four years ago, he has been different. In addition to leaving him physically challenged, the stroke, even more cruelly, left him with intellectual frailties as well. I’m including these photos so you can see the man I know as Dad.

Jenn Wilson dad photos

Originally it was difficult to accept that he was so different now. I remember quite clearly the day my mom said that Dad was going to start attending an adult day care service program at Ravenwood several times a week, so that she could have a break and my dad could have some socializing. When I saw him next, my father showed me the craft he had made that first day. It was a painting, I think, with some additional stickers and sparkly confetti. Not bad for a man with one good arm, he jested, even though he had help with some of the stickers, he said. He was so proud of his work and I ‘ooohed’ and ‘aaahed’ and told him how wonderful it was, and Mom put his craft up on the refrigerator.

Driving home that night, I cried remembering how he used to be before the stroke. A kind, strong and extremely intelligent man who ran a successful law firm and provided a good life for himself and my mother. And now he was going to adult day services and making crafts with stickers and sparkly confetti. This seemed so cruel, I thought, the entire process of aging and the lasting results of illness and what it does to your loved ones.

My dad has been attending Diakon Adult Day Services at Ravenwood for a few years now. As time has progressed, he has brought home many more crafts. I recall a really cool Halloween spider made from a cute tiny pumpkin and black pipe cleaners from last year. It sat on the TV stand until the poor little thing rotted. And even now there is a very good imitation of a watermelon slice dad painted recently hanging from the fence on their little patio.

But I think it’s important that you know that every time I visit and ask him about his day his face lights up talking about the crafts, or bingo, or singing, or one of the wonderful outings you take him on. In fact, tomorrow [program staff] are taking him to see a ball game at Municipal Stadium and he is very excited and happy about this; he talked about it all weekend long.

I have never met any of you, but over the last few years I have heard about you and have come to know you through my Dad. You are the caring people who help him with crafts, or take him to the bathroom or help him with his lunch. There are so many things that you do every day there for him that you probably think nothing about, but that mean so much to him and to us, his family.

You are the people who bring him joy and happiness. Your work is tremendously important and extremely meaningful and we appreciate you very much … Know that we are grateful for each of you, and sincerely thank you all for your kindness to my Dad.

—Jennifer Wilson

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Many Hands. One Heart. Service Excellence.

Someone recently asked me about the importance of various roles within a senior living community.

My immediate response arose from my knowledge of 1 Corinthians: “Just as a body, though one, has many parts … all its many parts form one body … there should be no division in the body, but … its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.”

In other words, every role is equally important, every staff member critical to the quality service we provide.

The question dovetailed so nicely with our new customer service program at Diakon—Many Hands. One Heart. Service Excellence.—I felt compelled to write about it. One part of that program guides staff members toward the understanding that, no matter what our role is, we are all equally important to our mission. We cannot accomplish our goals any other way!

Naki Godfrey, a regional sales and marketing director for Diakon and coordinator of our customer service program, wrote this introduction for the program, which so well encapsulates our team focus:

“At Diakon, we touch the lives of our residents, clients, customers, family members, vendors and staff every day. Why? Simply put: We are in the business of providing service and care. That’s what we do at Diakon, no matter which service line you are involved in.

“Many Hands, providing excellent care, motivated by the One Heart of compassion, is one way we describe what all of us do each day as the “many hands” of Diakon.

“Although Diakon has always been a customer-focused organization, our goal in designing the Many Hands. One Heart. Service Excellence. program was to:

•    Help us to see exemplary customer service in new and helpful ways.
•    Provide reminders and tips on how always to focus on our customers—our residents and clients—first.
•    Incorporate a customer service focus into everything we do.

“Even the most customer-focused organizations—including Diakon—must re-emphasize a customer-centric approach in everything they do as health care and related fields continue to change and grow. Our outcomes on customer service are more important than ever.

“So … is customer service new to Diakon? Absolutely not. It has always been at the root of our culture and organization.”

But reminders of that focus remain especially important today. As is the recognition of how important every staff member is to our goal of excellent care and service.

—Jennifer Sharp, BSW, NHA, PCHA
Vice President, Operations
Diakon Senior Living Services

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Choosing Words Wisely

I am not a fan of political correctness. We have come far astray of the general knowledge that “sticks and stones….” Moreover, the limitations prompted by overzealous word-watchers can sometimes affect the ability to communicate freely and clearly.

However, I also recognize that while words may not physically injure us, they can hurt and often can rob people of dignity.

For example, I often ask students in a class I teach what is wrong with the phrase “the Alzheimer’s sufferer” or “the wheelchair-bound man.”

Know the answer?

Both phrases define people by a characteristic or condition. It’s far better in these cases to write or say “the man with Alzheimer’s disease” or “the woman who uses a wheelchair.”

In doing so we are not defining the person by a single characteristic—and are affording them the dignity they deserve.

Recently, I wrote an article asking people to support a variety of causes within Diakon. One of those causes is memory care. I used the phrase Alzheimer’s disease once or twice in that brief section, but never used the word dementia.

The person for whom I was writing asked that I downplay the Alzheimer’s phrase and use dementia more prominently. Why? Because Alzheimer’s, she indicated, was just one type of dementia and we wanted to cover the topic more broadly.

She was right about one thing. And “wrong,” I believe, about another.

She was right that Alzheimer’s disease is a form of dementia. It is the most common type of the memory-related illnesses grouped under the medical diagnosis of dementia, a term that also encompasses vascular dementia, Creutzfeldt-Jakob disease and other conditions.

She was wrong, I would argue (and I did), that the use of the word dementia was better.

I agreed that we wanted the article to encompass memory concerns beyond Alzheimer’s disease, but would not agree to use dementia. In fact, I have edited out that word every time someone uses it in their writing.

I prefer the phrase “memory-related illnesses.”

For some reason, I find the word dementia pejorative, a term that negatively characterizes a person, that rings harsher than it should.

I discovered, in trying to buttress my point, that I am not alone.

There are a number of articles online, including one on a webpage that is part of the National Institutes of Health—that propose abandoning, at least in popular writing, the term dementia—which originated from the Latin word “demens,” originally describing “madness”—in favor of various other words or phrases such as cognitive impairment.

Or, I would add to that list, at least for public-focused writing, memory-related illnesses.

There is no question these diseases are harsh. I just think the way we refer to them need not seem that way as well.

What are your thoughts?

By William Swanger
Senior Vice President
Corporate Communications & Public Relations

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Consumer Satisfaction – A few lessons learned….

Doing a survey always begins with a bit of trepidation. What will the responses be? Will there even be responses? If we receive responses, will they be good or bad?

At Diakon, however, we are committed to customer service and so we are always very willing to put aside those trepidations and ask: How are we doing?

Within Diakon Child, Family & Community Ministries, we recently conducted several satisfaction surveys of the organizations and individuals referring consumers to us for service. In addition, each year we conduct a retrospective review of all the consumer and referral source concerns we’ve received throughout the year.

I wanted to share some things with you that we have learned. First, the good news:

  • Quality – Across the board, those who refer to us believe that we offer quality care and services
  • Outcomes – Those who refer to us believe that our services produce good outcomes for the people we serve. In the last two years, we have increased our focus on sharing our outcomes data with the counties and agencies that refer to us, and they are increasingly aware of our outcomes as a result of our sharing data more publicly, such as on our website.
  • Staff qualifications – Our staff members are perceived as highly competent and qualified to do their jobs
  • Consistency of staffing – We are viewed as a stable, solid place to work
  • Communication – For the most part, we are seen as good communicators, following up with progress reports to our partners in the community and county agencies on those we serve for them.

Some areas for improvement also have been identified for a few programs, including:

  • Waits for service – In some of our programs, consumers and those who refer them believe that the wait for care can be lengthy at times. We have developed a plan to measure and improve this concern, particularly in Diakon Family Life Services’ SPIN program. We also are beginning a customer service training program that will help us all learn the “best practices” of expediting care and communicating with those we serve when there are unexpected delays.
  • Percentage of referrals accepted – The individuals and agencies that refer to us expect us to help those they refer, to say” yes” when they reach out to us for help. In a few programs, it can be challenging at times to meet the needs of the number of referrals made to us. We also have created a plan to measure and improve this percentage, particularly in our foster care services.

I extend a huge “thank you” to the people who took time to respond to our surveys, to our staff members and to all the county agencies with which we work—for all that you do to help the individuals and families we serve.

I deeply appreciate everyone’s hard work and dedication.

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Ceilings and Floors

I am 47 years old and I have never owned a passport.

True, I have been out of the country to places in the Caribbean but that was back in the days when you could go on a cruise or fly to certain regions with just a birth certificate.

In fact, I had not even gotten on a plane until I was nearly 20 years old. We just didn’t have much money when I was growing up to take exotic trips overseas and in my younger years I was not much of a risk-taker. Even now, I’d prefer a trip to Disney’s Epcot over going to actual countries because I do not enjoy flying at all!

A few weeks ago, I had dinner with a very wise friend who said something that has stuck with me since then. We were talking about our young-adult kids and the things they are all doing and she said, “I want my ceiling to be their floor and I haven’t even reached my ceiling yet!”

What a great way of looking at how we prepare our children for adulthood!

I have three daughters and each has a distinctive personality and a different “comfort zone.” My oldest daughter traveled to Ireland in January on a college exchange program and will most likely end up living in New York City soon. My youngest hates cities, but traveled to Barbados in the spring for a field hockey tour with her club team. I was actually surprised for two reasons that she did it— first, she has never been anywhere away from home without at least one family member and, second, we told her she could go only if she paid for it (and she did!).

I was surprisingly calm during both their trips compared with how, a decade ago, I would have been worrying nonstop.

My middle daughter, who turns 18 in a few weeks,  is in many ways the most adventurous of the three but has not ever traveled anywhere on her own.

A few months ago, however, I suggested she look into going on a missions trip to Saint Lucia through Youth with a Mission, but when she saw that it was two weeks over her birthday and she would not know anyone going, she talked herself out of it. I didn’t really pursue it with her, until I heard my friend say: “I want my ceiling to be their floor and I haven’t even reached my ceiling yet!”

So I brought up the missions trip again and my daughter had a look of longing in her eyes. But then she started rattling off the list of excuses of why she shouldn’t go.

I’ll be gone two weeks. I won’t know anyone. I’ll have to fly by myself. How will I raise the money? I’ll be away over my birthday. I can’t do something this big…

I interrupted her and asked her, “Does the thought of it give you butterflies and stir your heart every time you think about it? If it does, and you talk yourself out of it then I think you know what you should do!”

She admitted that it did stir her heart and by the end of the day, with no further conversation, she decided to go. She leaves July 30.

It really isn’t that I talked her into going. It was more about teaching her not to be afraid and talk herself out of things that are both scary and amazing opportunities. I often have defaulted into limiting myself and my kids based on my own experiences and anxiety, but that’s not what the Bible says I should do.

Philippians 4:13 reads I can do all things through Him who strengthens me.

It doesn’t read “normal things” or “easy things.”

It reads “all things.”

With that in mind, hope I can also make my ceiling the floor for my girls. I want them fearlessly to take advantage of every opportunity that is part of God’s plans for them.

And maybe one day, I’ll even get my own passport.

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