We Have to Live with Alzheimer’s

Eighth Reason I Wrote, “Someone They Can Trust”

“Someone They Can Trust”, my new novel, is available on Amazon. To receive news about what I’m writing, please subscribe to the author email at the bottom of this post.

Alzheimer’s Disease is a public health problem of staggering proportions, and a personal tragedy for a good chunk of our population. (Around six million people have it in the United States.)

Even if we weren’t dealing with mass shootings, a loneliness epidemic and a childcare crisis – the prevalence of Alzheimer’s is a loud call to band together and live more communally. Dementia can wreck a family. It’s that hard to deal with.

There’s a character in my novel, “Someone They Can Trust” who has Alzheimer’s, and the story shows how a loving community can make life livable for the victims of the disease and for their caregivers.

One of three protagonists in the book, Maya, is the main caregiver for her beloved Grandmother, who is found to have Alzheimer’s early in the story.

Another protagonist, Janice, lost her mother to the disease several years before, and is determined not to leave Maya to deal with her crisis alone.

The bond between these two women proves to be healing for both of them.

The story not only describes the grandmother’s descent from a devout and useful life; it’s a story about life going on and being full of graceful, sweet moments even in the midst of the disease. Those are what we can learn to create for each other. This is only one thread in the story arcs of three people, but I think it’s an important one. One in nine people over 65 now have this disease, so none of us is too far removed from it.

That’s why I wrote this book.

Newsletter signup

Please sign up for occassional author emails to learn more about my books and articles!

Please wait...

Thank you for signing up!

A Great Partner isn’t Enough for a Great Life

Second in a series on why to join a small group

In 1994, the year after we got married, my husband and I started a Christian small group. We’re still in the same group. Here’s why:

Years later, we still need our small group!

I was 32 when we decided to invite some friends to a weekly evening gathering, where we’d do a Bible study and pray for one another. I’d like to say my motivation was an abundance of holiness, but no, it was more – neediness.

I’d been married for a year, after more than ten years of wanting to be married, seeking and hoping and praying to be married. But after a year of being married, to the best of men, I was surprised to find myself lonely. All those rom coms had oversold romantic love. A husband wasn’t enough. A husband and God weren’t even enough. We needed something else.

We both had good families, and good jobs. We belonged to a strong church, had friends and hobbies. We traveled, we volunteered. Life was full, but we needed something else.

I found myself wanting my living room to be full of people who were walking the same path as Bill and I. People who were followers of Jesus, trying to be like Him in a culture that was pulling us towards selfishness, busyness and status. I wanted a large enough group to expand our perspectives, but small enough that we could tell each other about the junk in our lives and help each other with it.

We started with a couple we were good friends with, invited another couple who had just moved into town, and were soon joined by others.

I remember one of our first meetings, in the small apartment of the couple who had just moved into town. They’d come to Cincinnati to lead a campus ministry, which sounded cool to me, until I saw the plastic taped to their windows, and the government-donated cheese in their fridge. Not a lucrative field, campus ministry.

While the rest of us made more money than they did (we did end up among their financial supporters, by the way) we all had our own equally urgent needs of other kinds. It only took a few meetings to scratch through the veneer and start being real with each other.

We prayed together, for more money, more peace, more health, less fear, deeper understanding, greater love. We wrestled with Bible passages, seeing so many more facets of truth than we would have found on our own. Just talking about the things that were weighing us down lightened the loads.

The conclusion I’ve come to, after 29 years of marriage and 28 years of being in a small group, is that God is experienced in different ways when we’re alone, when we’re with a partner, when we’re with a small group, and when we’re part of a larger community. We need them all.

After our small group started, I knew I’d found what I needed. I wasn’t lonely any more. I had God, I had my husband and our full life but now I also had a safe group of people who would help us stay on the path we longed to walk.

Question for Reflection: What are some of your best group experiences, from any time of your life, in any type of group? What did it feel like?

INSPIRING PEOPLE: Carolyn Ison

Many people are beautiful to look at, but some also create beauty wherever they go. That is what Carolyn Ison does. People have always been drawn to her lovely, calm demeanour, her snow-white looks and captivating eyes, her kindness and grace.

Her work has always involved an extension of that beauty. She is a painter, and her pictures have the same magnetic, soothing quality that she does. All the homes and gardens she has ever lived in are little oases.

I have beneffitted greatly from these qualities, because I am her daughter. There is not a domestic image in my memory that is not picturesque. There was never a holiday that did not have a delightfully set table. My home is filled with paintings that give me joy.

Love can only be given away after it has been breathed into us. I am so grateful to have been loved by this beautiful woman. Her care for people and cultivation of beauty was a gift she passed on to her daughters, and we are so much richer for it.

Why Sit When You Can Stand?

(Sixth in a series on working from home.)

I love working from home. Years ago, when I had to work in an office, I would get up early enough for the commute, put on my binding clothes and walk out the door feeling a pang at leaving the place where I felt most comfortable and free.IMG_20170607_171452142

For many of us, it isn’t the work that we don’t want to go to; it’s the confining space where the work gets done.

No wonder. Human beings were made to move around.

Dr. James Levine, in his 2015 book, “Get Up! Why your Chair is Killing You and What You Can Do About It,” reports on research that proves our norms of 12-15 hours of sitting per day are causing a litany of health problems. Our risk for heart disease, diabetes and obesity is higher than for less sedentary people. We gain weight, we can’t think as clearly or stay as alert.

A 2014 Canadian study, found that the more time people spent up on their feet, the longer they lived.

Our culture is way overdue for major lifestyle changes.

Image result for sleeping at a deskWorking at home gives us unique opportunities to either sit ourselves to death, or keep moving all day long.

On one hand, some people report that working at home leads to less movement, since they don’t need to go anywhere.

On the other hand, we’re free from the office norms that keep so many people sitting. We can stand up for phone calls, to work on computers, to read and write. We can pace around our whole place while we’re thinking through a problem. We can do huge, office-inappropriate stretches while someone’s monologing on a conference call.

We can work in our sweats till we’ve exercised and showered. We can jump up and down 100 times when we get dopey. We can walk around the block to calm down when someone has made us mad.

Our family invested in a standing desk this year, and I’ve been delighted with how much more alert I feel, and how tasks even seem a little bit easier. My sons have used a fold up desk extension – it looks like a tray on long legs mounted on a desk. That worked well too, and was a whole lot cheaper. Working at a kitchen counter or even sticking your laptop on a stack of big books is better than sitting all day. A good starting place for shopping is this review: https://www.goodhousekeeping.com/home-products/g33471596/best-standing-desks/

So far in this series on working from home we’ve covered the need to eat well, take regular time off,  set boundaries for how available we are, build good work habits and reward ourselves for the work we do. I think that taking advantage of our freedom to move is another key way to increase our health and productivity at the same time.`

Don’t Be Too Available

(Third in a series of posts about working from home.)

Not everyone gets that working from home is still work. Many people who would never dream of bugging you at a corporate office or a factory floor won’t hesitate to call you for a chat at your home office, or expect you to reply to their texts right away.

It’s hard enough to keep ourselves on track when working at home; being derailed by family and friends can be overwhelming. IMG_20170607_171452142

It’s also hard for those around us to know when we are or aren’t working, unless we give some clear signals. This whole area of setting boundaries is really key. How we do it differs with what our set up is and the kind of work we’re doing, but it’s really hard to work at home without boundaries. We can’t get stuff done, and we’re likely to take out our frustration on loved ones, which is not cool. Boundaries protect everyone. Here are some ideas to consider:

  1. Having a defined physical work space helps; preferably behind doors that close. Then tell people that when the door’s closed, you need privacy. An open door can mean, “Talk to me if you need something, but not just for fun.” If you don’t have a private space, you can leave earphones on when you don’t want to be disturbed, or wear you ‘get lost’ hat, or whatever it takes.IMG_20170607_171540584
  2. Set some regular work hours, then people can get into a habit of leaving you alone during those times. It’s also important to honor the times you set for being available, especially with kids. They’ll have an easier time getting used to your off-limits time if they know they can count on a game at lunch time, or an evening when you’re not constantly checking your phone.
  3. Consider separating your message and social media feeds, using some for work, the rest for private life. Then you’re not tempted to watch concert videos when you meant to check customer orders.
  4. Don’t tell everyone you work from home. Not everyone needs to know.
  5. Get used to missing out on some good moments. If you want your privacy to be taken seriously, you can’t jump ship every time you hear people laughing in the next room, or expect them to tell you when the movie starts.
  6. Don’t feel the need to be constantly responding to notifications, unless you’re a stockbroker or something. I told my kids if they really needed me, to phone rather than text, then gave them each their own ring tone. Then I could dive deep into a project and ignore everything, until I heard that Lord of the Rings theme, or the R2D2 bleeps. ( Zedge has fun ring tones.)

Lots of people swear they do just fine with multitasking, and mixing work with every other part of life, but more and more people are discovering that an interrupt-driven workday is less productive. 

Over the long-haul, a defined work space,  a set work time and some methods of reducing interruptions make working at home a lot more viable.

Keep the End in Mind (10 Things I’m Glad we did for our Kids, Part X)

We don’t have long to raise our kids. In my experience, most of my actual hours with my kids were before they were ten or eleven. They are increasingly out in the world and involved in after- school activities as they get older. So it makes sense to decide what’s important to do with our kids, and what to teach them, as early in their lives as possible.

scan0022

I’m so grateful now for every hour I had with them. I don’t regret not earning more money, I do regret the times my own anxieties and preoccupations kept me from being more in-the-moment with them, more playful. I don’t regret putting my career on the back burner, I do regret sometimes being so task-oriented at home that I didn’t take more time to be alone with each child.

This series of ten posts on what I’m glad we did for them has only scratched the surface, but I hope the posts can help parents think through what matters and how they want to work that into their family life. It’s good to ask ourselves questions like:scan0023

  • What world-view do I want my kids to have and what institutions will help me in forming that?
  • What educational setting is right for my child?
  • What books do I want to make sure I have read to them, or they read to themselves?
  • What vacation and service experiences do I want them to have?
  • What kind of relationships do I want them to have with their parents and with each other?
  • What kind of relationships do I want them to have with extended family?
  • What pace of life is right for us, and how do we protect ourselves from too much activity outside our home, or not enough involvement outside our home?
  • What kind of habits do we need to practice to protect their health – physical, emotional and spiritual?
  • What family patterns have come down to us from previous generations that we want to continue, and which ones will we need help breaking?
  • What destructive forces threaten us, and how do we fight them?

It’s such a joy to see our grown kids thrive, such a heartbreak when they don’t.  I know people who were very intentional about how they raised their kids, yet their children are not doing well, not thriving or happy.

Parents can’t take the whole rap for that. There are aspects of our culture that are hostile to family life, and our kids make their own choices. There aren’t any guarantees in this parenting business. But keeping the end in mind – that time when they leave home for good – can help us make the most of each precious day.

wp_20150531_18_19_36_pro__highres

a

We Were the Grownups (10 Things I’m Glad we did for our Kids, Part IX)

 

Have you ever noticed how often the kids are smarter than the adults in many comedies? I get that it’s a humorous device – reversal– but on many shows, it’s the norm. With monotonous regularity, clueless parents are outwitted and talked down to by their precocious, mouthy kids.Image result for disrespectful kids I find this beyond annoying because this barrage of parental ineptitude undermines respect.

Kids need to respect their parents to develop to maturity without a string of developmental hitches too numerous to count. It’s terrifying for a child to constantly feel smarter than his parents, to have no one to look up to or receive limits from.

I’m not saying we need to be smarter than our kids in all areas of life – my kids have been more tech savvy than me for years. I’m talking about respect. Kids are emotionally, spiritually and physically safer when they have parents who are morally worthy of respect and willing to maintain authority.

I’m glad that for most of the time at least, my husband and I were the grownups in our family. I recall one of my boys, in middle school at the time, saying, “You and Dad aren’t as cool as some parents. If I get sarcastic and joke around you won’t put up with it.” I considered that a good sign that we were holding our own.Image result for disrespectful kids

Of course we’re not going to get respect if we’re not living respectable lives. But there’s more to it than that. I think maintaining our children’s respect includes:

  1. Making expectations clear. In a culture where there is widespread incivility, we can’t assume our kids know how to behave. We need to spell it out: “I expect you to say hello to us when you come in the door,” for example.
  2. Pulling consequences when kids don’t follow instructions. For example, “You kept the car out past curfew last night so you can’t drive it for the rest of this month.”
  3. Letting them know they have an emotional impact on you. Sometimes kids are so self-absorbed, or feel so powerless, they don’t know that their words have an effect. “When you tell me you hate me that really hurts. I need you to rephrase that.”
  4. Making it clear from the start that you are in charge. I recall my five-year-old trying to organize our home schooling schedule every Monday morning for months. After a weekend of relative freedom, he would resist instructions, and soon be put in a time out until he was willing to correctly answer who was in charge. It wasn’t a great start to the week, but if I hadn’t toughed it out, the rest of the week would have been a lot harder.
  5. Addressing it immediately when kids speak disrespectfully. Rarely is an activity so important that it cannot be stopped to show zero tolerance for bad behavior. Pulling the car over, turning the TV off, ending a game in the middle – that’s what it takes. Kids will treat their future families the way we let them treat us.
  6. Refusing to let ourselves need our kids. Parents who need their kids to be pleased with them cannot guide them. Parents who use their kids for friendship, for ammunition against a spouse, or to fulfill some unmet ambition of their own, cannot make the unpopular choices that a good parent needs to make.

It can be exhausting to be the grown up, but it is so important for our kids’ development, and our own self-respect, that it is well worth the effort.

 

Making Time for Extended Family (10 Things I’m Glad we did for our Kids, Part VIII)

My kids always loved big family gatherings.  All the cousins ran around in a screaming pack, several generations of adults conversed happily past normal bedtime, and food was on low tables for unsupervised grazing.

My kids seemed to experience a wild joy at these holiday and birthday get-togethers. I recall, for example, a time in a restaurant with my in-laws when our normally well behaved kids started running, squealing, around the table.  They had the exuberance and oblivion of puppies.scan0021

For years, my sister and I couldn’t get our kids separated to go home without two or three of them dissolving into fits of tears and having to be carried. We would try to say goodbye to one another over the racket, squinting through the flailing arms of our heartbroken toddlers. They didn’t see why we couldn’t all live together. (Maybe we should!)

I think that being with extended family is when many of our kids feel happiest, safest and most loved. Even in conflicted families, bonds are ancient and powerful, and being together shuts out the other stresses of life for a while.

Not that it’s always easy to get together. My husband’s family is six hours away in Chicago, and even with my family here in Cincinnati it’s a logistic miracle when we get everyone together. Nevertheless, it’s always worth the effort.scan0020

When our kids were little, it took heroic efforts to get them to Chicago. We could cram three kids, three car seats, strollers, portable cribs, suitcases, diapers and baby food, into our van and head north several times a year, alternating families for Christmas and Thanksgiving. So every second Christmas, the load was doubled with huge opaque bags of stockings and gifts that Santa wanted them to open in Chicago on Christmas morning. Watching the joy of reunion between our kids and their grandparents, aunties, uncles and cousins, was more than enough payoff for all the work of getting there.

I feared that our children would have less desire to get together as they got older, but now that they’re young adults, they seem to enjoy the sense of belonging more than ever. I’m surprised at how rarely they have ever missed a gathering. Short of being overseas or unable to get off work, they have made it a priority.img_20160408_190559646

I’m aware that many people have family so far away they can’t get together as often as they would like. Many more have families they just don’t enjoy being with. Some families are so toxic that the most responsible thing people can do is keep their kids away. I think in these cases, it’s well worth the effort to cultivate an ‘alternative’ family, a group of people you devote yourself to over time, who are close enough and available enough to spend holidays with.

I’ve noticed that at the best of these gatherings, there is not a lot of talk about how anyone is performing at work or at school. It’s a blessed break to be with a group of people who accept you because of who you are, and don’t measure you for your achievements. That, ideally, is the greatest gift of extended family –  it’s the crowd that loves us no matter what.

We Scheduled Listening (10 Things I’m Glad we did for our Kids, Part VII)

I’ve had some fabulous experiences of the power of listening and being listened to. They convinced me to make it a priority to listen well to my kids:

  • There was this class at church, “Listening for Heaven’s Sake,” where we worked in groups of four to practice new skills. ie. Person 1 shares something personal with Person 2, Person 2 listens and summarizes what she heard, including any feelings she picked up. 3 and 4 then give feedback to 2. Then everyone switches. I’ve never had a more effective learning experience, or realized how much I needed to improve at listening.
  • I was hired to teach, “Magic Circle,” a program where young kids go around a circle, taking turns saying something in response to a prompt, such as, “A time I felt happy.” Only the kid holding the stuffed animal gets to speak. After everyone has had a turn, they go around again, and each kid says something they heard another kid say. It was so powerful for the children to experience being heard that I started using a similar approach with older groups.  One teenage guy, super attractive and popular, told me that our weekly check-in was the only time all week when he felt that someone really listened to him.
  • I got a Masters’ in Counseling from the University of Cincinnati, and the program had an excellent emphasis on empathy, warmth and respect. We practiced listening, and making only,  empathetic responses for twenty minutes at a time. It’s amazing how deep people will go when you only listen and reflect back what you’re hearing.

After all that, I’ve had no excuse as a mom not to listen well to my kids. But even after those great experiences, I find that two things can get in the way:

  1. Being too busy: You’re not going to listen well when you are task driven. And kids, especially teenagers, don’t spill their guts on your schedule. It’s on theirs, when they’re sensing a good connection. So I make sure to sit down with them at dinner most nights, ask a few questions, and mostly listen. Even if they’re eating at different times, I try for a few minutes a day with each one, when they have put down their devices and taken a break from homework. If they seem troubled and don’t talk about it, I’ll try again later when they’re alone, ask for five minutes and say something like, “Tell me about your life.” If they still don’t have much to say, I try not to push. They’ll come  when they’re ready, but we have to keep giving them windows.
  2. Giving too much advice: Nothing kills disclosure faster than unwanted advice. So, for example, if a kid admits they have fallen behind in their school work, it’s hard not to say, “Have you asked for help/communicated with your teacher/ stopped watching four episodes of ‘The Flash’ in a row?” When I bite my tongue though, and listen, then say something like, “Sounds like you’re feeling trapped under the load,” then I usually end up hearing them come up with their own plan for how they’ll climb out. Of course, younger kids will need more direction, but they still need to be listened to first.

It is so painful when communication between parents and kids breaks down. It’s not always the parents’ fault. Sometimes kids are hiding something, or pulling away in clumsy reaches toward maturity. But there is an incredibly strong bond between parents and kids; that’s how God made us. So careful, patient listening is going to lead to a good connection in most situations. Eventually!

 

 

We Had Fun on Vacation (10 Things I’m Glad we did for our Kids, Part VI)

Nothing connects a family more than having a good time together. I am wholly indebted to my husband, Bill, for being a great vacation planner. He is far less cheap than me, and much more fun. Our lives are the richer for it.

He grew up taking two week vacations every summer, when his teacher parents crammed five kids in a station wagon and took to the highway on some really ambitious treks. They covered every corner of the United States and have wonderful stories of close calls with bears, writing limericks in cramped cabins together on rainy days, and stuffing the littlest kid between the two back seats, which came to be known as ‘the laughing place.’

scanArmed with these bracing experiences, Bill was downright heroic about getting kids out to experience the world. When two of them were tiny babies and the other a slippery toddler, he announced, “We’re going somewhere, even if it’s only an hour away.”

It was about an hour away, but it was still an epic journey, outnumbered as we were by needy little creatures and swamped with the equipment of baby survival: a double stroller, a single stroller, a huge diaper bag, portable cribs.  General Butler State Park Lodge didn’t know what hit it when we showed up for dinner with all three babies, requesting several highchairs and a large corner for a Pack-and-Play, the holding tank that enabled the adults to eat too.

There’s nothing relaxing about a vacation like that. I’ve cynically observed that a vacation with little kids means doing the same thing you always do in less convenient settings, but it’s still worth it. The scene is changed, there’s a break from routine, and even if the fun activities aren’t always all that fun, your kids are learning to behave out in the world. They learn that disciplines like sitting still, standing in line, or waiting for your food, generally have some pretty good payoffs.

By the time they were four and six, our boys were more or less keeping up with adults all day long. I’ll never forget seeing them all with their little Sesame Street backpacks and roller suitcases, striding through the San Francisco Airport when Uncle Bob brought us all to the west coast on his frequent flyer points.

When they were nine and eleven we did our tour of dazzling western National Parks, and I was really pleased to see how well they kept up on a guided five-mile hike up a mountain at Glacier Peace Park. They loved the waterfalls, the changing terrain, the walls of ice when we reached a glacier. That was a time that is etched in memory, one of those iconic family experiences.vacjul07 135

So was going on a mission trip together to put solar panels on schools in Honduran Villages when they were fourteen and twelve. That was a wonderful time of all working together to help someone else, while navigating a difficult culture and some hardships. I’m so glad we had that experience of serving together and depending on each other.

IMG_4153
Carrying solar equipment up a hill to a school on an island in Honduras.

Not everyone has the luxury of traveling far, but even camping in a local campground for a few days, or exploring a different city while staying with family or friends for a weekend, can be a great adventure for kids. It isn’t how expensive or exotic the vacation is that matters, it’s the magic that happens when you are exploring and having fun together.