Alzheimer’s and other cognitive issues: The importance of sharing what we learn

I am facing something a lot of people face: caring for a loved one with memory loss, often the result of Alzheimer’s disease or another form of cognitive impairment.

While I sometimes feel as if I am falling apart, I know I am not facing this situation alone. Not only do I have other family members to help, but I also have three colleagues who are either going through or have gone through similar challenges. In addition, we work for an organization that offers a range of community-based services geared to those who are 60 and older.

Am I taking this in stride? Absolutely not.

My 93-year-old aunt, who is my godmother and like my second mom, is in a nursing home with this very emotional disease. My mother, who is her 80-year-old sister, has difficulty understanding how my aunt can be suffering when she doesn’t look physically ill. Cognitive issues truly affect the entire family.

It wasn’t until my aunt turned 90 that we started to notice little things. But, like so many others, we chalked it up to age. My colleague, Susan Long, admits it was only when she insisted her mom see a neurologist that she realized the disease was worse than she had thought.

“My biggest struggle is the guilt that I didn’t insist she go earlier,” she told me.
At some point, it is difficult to explain away the memory loss.

For Susan Johns, who also works for Diakon Community Services, that situation occurred when her 90-year-old father didn’t recognize her. “That was my most devastating experience,” she remembers. “For 70 years, I was his little girl. All of a sudden, he had no idea who I was.”

Despite the difficulties we’ve experienced, we all believe we have learned things that we want to share for the benefit of families in similar situations. One thing that was particularly striking for me was how, despite knowledge that my aunt was changing, I wanted everything to remain normal.

While she still lived at home, we often made her go to birthday parties and other family gatherings with the hope she would have a good time. What we didn’t understand at the time was that these events made her more anxious. Looking back, I wish we had handled things differently.

It was only recently that we found a note she had written to herself seven years earlier after my daughter-in-law’s bridal shower. In it, she revealed that she did not know how to write her name or make the food she normally takes to events. “Something is wrong,” she wrote, offering a clear reminder for us that it is never too early to voice your concerns.

Although it was a difficult decision to move my aunt into a nursing home, we knew it was best for her as her disease progressed. However, many people may never reach that point.

My colleague Jenny Wagner and her sister shared the role of caregiver for their mother. Even though her dementia worsened during the last five years of her life, their mother lived independently with their support. Jenny’s sister checked on her throughout the day and Jenny spent weekends with her.

“It was hard in the sense that it was a long, slow goodbye,” she recalls. “You could see it happening and you were living with it. My mom always maintained a great sense of humor, making it easier for my sister and me to maintain our attitude about the whole thing.”

Despite the daily challenges of caring for our loved ones, we all have found or continue to find value in the time we’ve been given together—from deeper relationships with parents and treasured moments with a favorite relative to teaching our children respect for their elders.

—Debbie Herb, coordinator of center services for Diakon Community Services in Schuylkill County, Pennsylvania, with additional thoughts from Susan Long, program coordinator, Diakon Living & Learning; Susan Johns, APPRISE program coordinator; and Jennifer Wagner, community wellness coordinator.

In connection with the thoughts shared in this blog post, Diakon Community Services—along with Independent Living and the county Office of Senior Services—will host “Alzheimer’s and Dementia: A panel of help, hope and understanding,” from 6:30 to 8:30 p.m. Oct. 23 at the Pottsville Senior Community Center. The educational session is designed for individuals and families caring for a loved one with a cognitive impairment. People may register by calling (570) 624-3016.

Click here for additional information, including a list of panelists.

A pastor’s perspective on orphan care and the church

I am one of the pastors of Grace Baptist Church in Lewisberry, Pennsylvania. My wife and I have eight children—three born to us and five who are either adopted or in the process of being adopted. They span from age 7 to 20. 

Our life is crazy, but good, so good! My wife is awesome and my children are a joy! 

As individual believers, but also as the church, we have a responsibility and opportunity to take care of the fatherless. God tells us in the Old Testament (Psalm 68) that He has a special place in His heart for those who need parents, that He is the Father to the fatherless.  

And in the New Testament book of James, we read that is what “true religion is”: To care for those who cannot care for themselves, orphans.  So I ask, “What is your church doing?” and “What are you doing?” 

Let me also suggest a few potential action steps. 

1. Pray – Pray for your church and its leaders. Pray that they have wisdom in how to care for “orphans.” Pray for those you know who are either displaced children or those who minister to them through foster care and adoption. Pray that God may give you direction in how you can be involved.

2. Ask – Ask what you can do in the church to care for those who are in your sphere of influence.  Ask your church leaders if there is something more you could be doing as a church. Come to them willing to be a part of the solution. An easy thing to do is to participate in National Orphan Sunday. It is usually on Veterans Day weekend and, this year, falls on Nov. 19. (You can certainly focus on the subject another day; last year we had a pair of shoes up front on the platform for every million orphans in the world.)

There are a lot of resources available to you at https://cafo.org/orphansunday if you are interested. Also, I am sure that our friends at Diakon Adoption & Foster Care can assist you.

In the past at our church, we have had people give testimonies and also had focused times of prayer in our services. This year, we will be making some prayer cards for our people to pray for waiting kids, from adoptpakids.org. It will be in the bulletin, so that people can pray for them throughout the next year. 

We also have had different representatives from adoption organizations set up a table to answer questions and provide information

There is much that can be done! Currently, we as a church are providing a diaper subscription to a family who just took in two children in diapers. Again, ask—ask what you and your church can do.

3. Get Involved – Let me encourage you by noting that you don’t have to be perfect to get involved. God can use you right where you are. Not all are called to adopt, but we can all care and become involved at some level. I once heard a statistic that if each church would adopt one child in the U.S., that step would take care of all of the waiting children in the country. There are about 400,000 children in foster care or needing a permanent family—and about 400,000 churches. Obviously, the solution is not as simple as that, but you get the point. 

We could all become involved and do a little more to make a big difference. What are you willing to do?

—Calvin Cutting


Helping a loved one transition to memory care

Tom knew Sarah could no longer remain at home.

It was impossible for him to be home all the time and even with occasional help from family and friends and a local agency, taking care of Sarah—whose battle with Alzheimer’s disease had begun slowly but escalated recently—was becoming more difficult.

Tom knew they had reached the stage at which Sarah needed intensive memory care.

Yet, like many people, he had no clue where to begin. And even though he had accepted the need for care, would Sarah—if she even understood what was happening? Yet what had been her wishes? Where would she enjoy living? How might he even broach the subject?

While every situation is different, the transition from home to memory care can be a difficult conversation to have, if not with the person experiencing memory loss, at least with other family members.

If your loved one’s memory loss is beginning to require care beyond what you can provide, that person’s safety is at risk—plus, despite your best efforts, your loved one may not be receiving the care or even lifestyle he or she deserves.

Discussing such a transition can prompt a lot of stress, agitation and even downright anger if the topic is not approached properly. That is why it’s important to bring this up at a good time.

Discussing memory care is often best done on one of your loved one’s better days and at the person’s best time. If the loved one is at his or her best in the morning, consider bringing the subject up over breakfast, rather than later in the day.

Certainly, it’s very important to listen to the person’s wishes and consider individual thoughts and feelings. The discussion may, in fact, take place over time.

My loved one is transitioning to a memory-care community. Now what?

Whether your loved one has decided to make a move on his or her own, or you needed to make that difficult choice, it’s important to ease into the transition. There are a number of ways you can help them. Consider some of the following suggestions by clicking here.

A careful plan can help you to ‘right-size’ your living space

In my work as a certified relocation and transition specialist, I come in contact with many people who have lived in the same home for 20 or 30 years or even longer and who have found their accumulation of things to be overwhelming.

In fact, because of all their “stuff,” they often can’t face the idea of moving into smaller accommodations to begin retirement, as a result of health changes or to reduce home costs.

Moreover, the issue of dealing with too much stuff can affect anyone, regardless of age, even though I typically work with older adults transitioning to a smaller home or a senior living community.

Armed with a few strategic tips and guidelines, however, most people can tackle even the most difficult home-organization project with confidence.

The key is about “right-sizing” your living space.

A good place to start is by categorizing possessions into groups: items you need, love and want. A good space will contain only what we need and love and a little bit of what we want.

A great space will have only what we need and love.

A common stumbling block clients describe to me is hesitance to get rid of their children’s old belongings or items they have stored for friends and family.

I tell them not to let this hold them back from taking the first step toward getting organized. Contact children and friends to find out if they want their items back or no longer have use for them. If not, there are many ways to dispose of them, including donation to a nonprofit or selling them online.

The old adage that one person’s “trash” is another’s treasure is true!

Of course, letting go of items collected over the years is tough. Sometimes, though, it can help to take a last look at an item and share your memories about it with a family member or friend—and then pack it away for good.

Depending on your ultimate goal for reorganizing, it’s important to ask yourself if you really do need an item. As just one example, instead of keeping a dinner service for 12, reduce it to four.

I often provide these tips in seminars at senior living communities or work directly with individuals and families contemplating a move.

But whether you plan to right-size your living space with the help of family members or with a professional, the best way to approach what can often be an emotional situation is with the benefit of a good plan.

—Carolyn Doerr owns Caring Transitions of Mechanicsburg

Personal care: A blend of support and independence

Several Diakon Senior Living Services staff members recently discussed the fact most people call what we offer in our personal care communities assisted living.

Because of varying licensures in Pennsylvania (Maryland is different—what we offer there is called assisted living), what Diakon’s senior living communities provide is technically called personal care.

Yet the term simply means we are providing assistance to people with the activities of daily living.

As we grow older, there may come a time it becomes harder to live on our own, yet we still want an independent lifestyle.

Personal care is helpful when it’s not possible for us to remain in our own homes any longer. Personal care allows people to continue to enjoy an active lifestyle, programs, activities, social opportunities—along with daily care.

People who receive personal care typically live the same lifestyle as before, except with the benefit of a little added care when it’s needed.

Click here to learn how personal care can help with daily tasks.

Banding together to make a difference

Alan Lane is the father of a young entrepreneur who wanted to share his idea for coping with anxiety disorders in the hopes of helping others. Joshua enlisted his family to take his idea from concept to online business. And he’s just 7 years old! Alan shares more about the genesis of Joshua’s Rubber Band Balls.

Joshua has Obsessive-Compulsive Disorder—or OCD—and anxiety. A friend from church suggested that he try putting rubber bands together and taking them apart to help control fidgeting. That helped—and so he took the rubber band ball everywhere.

One day earlier this year, Josh and I were waiting for his mom at a medical appointment. He had the ball with him and I said, “I bet you could sell those.” He responded right away.

“Sissy can take pictures and Bubba can make a website. You can mail them and Mommy can help, too.”

Sissy is Joshua’s 14-year-old sister, Rachel, and Bubba is his 19-year-old brother, Tyler.

When his mom came out after her appointment, Joshua said to me, “Are you going to tell her about my business plan?”

And that’s how it started. We’ve been selling them since February of this year, online and through Facebook.

It’s great to hear from the people who buy them. A grandmother in Georgia got one for her granddaughter, who has anxiety. A teacher in California purchased one to use in her classroom. We recently established a partnership with the Ronald McDonald House in Hershey for children with cancer to use the balls.

Joshua also has had seizures since he was very young; they are controlled with medicine. He has a service dog, Spot, who sleeps with him and is a source of comfort. So he wanted some of the money from the sale of Joshua’s Rubber Band Balls to help train service dogs for other kids.

Now, we donate 10 percent of proceeds to Merlin’s KIDS, which provides trained service dogs for children. Through a friend, we just had the chance to meet the New Jersey woman who founded Merlin’s KIDS.

We helped Joshua start this business because we want to give back and help people. And one of the most rewarding parts has been the way our whole family became involved. But we never forget who’s the boss. When it’s time to discuss business, Joshua calls the meeting to order and it’s not over until he says so!

—Alan Lane

You can meet Alan and Joshua and purchase Joshua’s Rubber Band Balls at the Diakon Outdoor Adventure Challenge at the Diakon Wilderness Center Sept. 14. Also visit https://joshuasrubberbandballs.com/

Five tips for choosing the perfect active retirement community

In my career in sales of senior living accommodations, I’ve found that one of two things happens when older adults begin their journey to retirement communities.

They either know exactly what they want and need … or …

They’re overwhelmed by the abundance of available options.

That second situation is not surprising: There are many things to consider, from services and amenities to programming and opportunities for exploration and learning.

My goal is to not let the search for the perfect senior living community become a challenge, so here are five brief tips that can help you or your loved one choose the right community.

Before you begin, however, I always advise making a list of your personal wants, needs and desires. After that list is complete, search for senior living communities both near you and a little farther away (but see the caution below about family and friends). Don’t write off a community just because it’s a little farther than you thought you’d like—it might just be the perfect community for you.

Plus, be sure to schedule tours, check items off your list and try to picture what your life would look like there. Here are my personal suggestions for building your list:

1.    Consider the environment. Do you thrive in the city, where there are plenty of shows to attend, musical performances to enjoy and shopping and dining opportunities? Or do you prefer the laid-back countryside full of peaceful walking trails, horseback riding and nature? In either case, be sure to tour communities that fit your preferences. If you’re open to a good mix of both, you may find communities that offer the best of both worlds. But never settle for a lifestyle that’s less than what you want.

To read more suggestion, please click here.

Building a positive relationship with birth families (Part 2)

I concluded part 1 of this blog post: “Now that we have established why it is important to build a good relationship, let’s talk about how to do that.”

Introductions

I always introduce myself the same way every time I meet a new birth parent: “Hello, my name is Eleanor; I am your son’s/daughter’s/children’s foster mom. I’m sorry to have to meet you like this because this must be a hard time for your family. Your son/daughter/children (insert comment about a positive trait here).”

Let’s break this down:

First, I use the words “foster mom” right away—I have had birth parents say things such as, “Oh, you are the lady watching my kids,” or assume this is a paid “job” for me—so I make certain to introduce the idea immediately that I am the person mothering their children right now. We are going to be co-parenting these kids for the foreseeable future, so let’s be clear on our roles right away.

Second, I acknowledge that this is a difficult situation. Whatever has happened up to this point, there is no question it’s a challenging time for everyone involved. Showing empathy for the family makes you seem less of an enemy.

Third, in making a positive comment such as “Your son has such an infectious smile,” you establish the fact that while you are mothering or fathering the child at the moment, you also want to be clear that this is their child. As far as the compliment, well, what parents don’t want to hear nice things about their kid? Besides, being friendly never hurts when meeting people the first time.

Photo album

The first time I meet parents I show up with a small dollar-store photo album to give them. I always ask the caseworker first if this is okay—and if there are safety issues I need to be aware of.

I include a photo of our family (if safe to do so), a photo of our house (again, if safe to do so), a photo of the child’s bedroom, our playroom, our pets and so on. In the early days, I always try to get a few photos of the kids playing or eating or involved in similar activities and include those. I work really hard to make sure I have at least one photo in which the child is smiling!

I used to not include photos of the kids being held or cuddled by us (I always assumed it would be upsetting to the birth parents to see photos of their child being held by someone else) and then had one mother tell me that she was afraid her son was not being loved while we had him. I immediately showed her all the photos on my phone of him being held, cuddled and rocked and she felt much better, so now I include those photographs, too.

While children are with me, I keep printing photos and taking them to visits. Plus, I scribble notes on the back about what we have been doing and what the kids have been up to each week. If my children were not living with me, I know I would wonder what their days looked like, so I try to make sure parents know what their kids are up to.

Crafts/Artwork

If your foster child is in preschool or school, you should have an abundance of craft projects coming home. I take one or two to each visit and give them to the parents. Kids love showing off their work!

Holidays

For Mother’s Day, Father’s Day, Christmas and so on, I help my foster kids make a small gift or buy something small for them to give to their parents. Most parents are touched to receive something and most kids really enjoy giving gifts.

For the child’s birthday and Christmas I normally take a small gift in my bag to the visit that falls closest to the holiday. If the birth parents did not bring anything to the visit, I let them know I have something in my bag for them to give their child if they would like to.

I have had birth parents burst into tears at this point because they just didn’t have the extra money to buy anything for their child and are so happy to have something to give.

I once had a fellow foster parent tell me I was enabling the birth parent, but I disagree. Most birth parents have all kinds of enormous tasks to complete, which can include finding housing, getting a job, completing rehab or attending parenting classes, so having money and time to buy their child a gift can be just one too many tasks for the week.

And it doesn’t take much effort for me to pick up an additional small gift; often, this kindness will go a very long way.

Don’t take it personally

All birth parents with whom I have worked have, at some point, critiqued the way I was caring for their child. One didn’t like the brand of diapers I was using; another insisted I must be neglecting to change her son because he had a (slight) diaper rash. One mom got upset that I had juice for the child in the diaper bag, while another was concerned I didn’t have juice on hand for her to give her child.

I figure it’s not about me.

This parent has almost no control over their child’s life, so they seek it where they can. I smile and tell them I hear them, but I don’t rush out and buy a new brand of diapers or run to the store for juice boxes. Their concern or anxiety is not typically about diapers or juice anyway.

Ask the parents about their child

Parents know a lot about their kid, how they go to sleep, what their favorite television show is, what they like to eat and so on—so ask!

In doing so, you will learn important information about the child you are parenting while also acknowledging the birth parents’ role in their child’s life. They are probably not feeling amazing about themselves or their identity as parents right now, so acknowledging they know a lot about their child they can teach you will be validating to them.

Boundaries

Sometimes, maintaining a positive relationship means setting good, firm boundaries. If parents are given my phone number or manage to get hold of it and start texting or calling constantly, I politely but firmly tell them that I am busy caring for their child and we will talk at the next visit. Your social worker can help you with setting boundaries if you need to, but I often find that having a frank but polite chat solves most issues.

Sure, it’s not always been smooth sailing with every birth family, but for the most part we have been able to build positive and respectful relationships with our foster and adopted kids’ parents, grandparents and even extended family.

It has not always been easy and has sometimes involved a lot of tongue-biting on my part—but it has been 100% worth the effort!

—Eleanor Delewski, Diakon Adoption & Foster Care parent

(A final note about language: for a child who has been adopted, the commonly accepted terms are “parent” for the adoptive parents and “birth” or “first parents” for the child’s original parents. However, for a child in foster care, “parent” typically refers to the birth parent, with “foster parent” being used for the moms and dads caring for the child while he or she is in foster care. For clarity, the term “birth parent” is used in this blog post to refer to the foster child’s original parents, but I fully recognize that while a child is in foster care the birth parents are still the legal parents of the child. Not everyone agrees on what language should be used for which parent, but that is a debate beyond the scope of this post.)

Distinguishing between dementia and normal age-related memory loss …

The email was puzzling: Would I be able to get the staff colleague the document she had requested?

Eh … what document? my mind immediately wondered.

Apologizing in both text and email, I asked for clarification. What had I promised to do?

We had discussed the item two weeks ago, came the reply.

Ugh! But I was still drawing a blank.

Fortunately, I can attribute this instance of memory-loss to the fact we get so many requests in my office that if I don’t write them down immediately, I’m typically on to whatever item is staring at me from my inbox and that other request is … well … gone.

We often find aging parents exhibiting similar behaviors and our immediate question typically is: Is this normal aging or something else?

Many older adults consider this question themselves over fear for the future. And the question is not easy to answer but, over time, answers usually become clear.

So, is it normal memory loss?

It’s common for forgetfulness and memory lapses to occur because of normal changes in the brain associated with aging.

The National Institutes of Health notes that this situation may make it harder to learn new things or retain information as easily as in the past. And, according to the Alzheimer’s Association, typical age-related changes may include making a bad decision once in a while, missing a monthly payment, forgetting what day or time it is but remembering it later, forgetting words or meanings of words and losing things from time to time.

These memory lapses can fluctuate as time goes on, but are perfectly normal.

But what they are the signs of cognitive illness? Click here to read more!