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Ambiguous Loss: Grieving a Loved One Who Is Physically Present but Mentally or Emotionally Impaired

Lauri Scharf, LSW, MSHS, is a Care Consultant & Master Trainer at Benjamin Rose Institute on Aging

The feelings that come with loss take various forms. Traditional grief follows the death of a loved one. It is the process of dealing with emotions that accompany permanent and meaningful loss. It is a familiar and difficult experience. By grieving, we may allow ourselves to move through the loss and come to terms with it. 

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We can also experience loss in relationships, as people move in and out of our lives, or as relationships themselves undergo shifts. When a close relationship is changed by a health issue that significantly alters a person’s mental or emotional condition, the feelings of loss that result for the caregiver can be particularly confusing and challenging to process. It is almost “a loss that isn’t” when your loved one is physically present but mentally or emotionally impaired, and it can leave you wondering who you are now.

You may have gradually experienced such a shift in your identity from loving spouse, companion or friend to full-time caregiver, sole decision-maker and lone partner due to your loved one’s cognitive decline or another condition. This can happen with dementia, Parkinson’s disease, traumatic brain injury or addiction. Whatever the cause, you may feel isolated and as if the clock has stopped ticking, for you alone. As a result, you may be grappling with the loss of dreams the two of you had for the future, or the loss of sharing equally in a mutual relationship. You may feel as if you have no one to rely on but yourself. But know that support is available and that there are helpful ways to process your emotions.

Although your new normal may now feel one-sided, it is important to allow your emotions and practice self-kindness. Acceptance is a gradual process. Your thoughts may turn to wanting change. If only I could go back to how it was five years, or even two years ago, you may think. By slowly accepting that this is not going to happen, your thinking may turn instead to, “Let my loved one have peace.” You may feel guilty for not being able to adapt to your new role, or question whether you are up to being the caregiver your loved one needs. All these thoughts and feelings are a normal and healthy part of the process. 

‘Ambiguous grief’ or ‘ambiguous loss,’ a term coined by researcher Dr. Pauline Boss, is the name given to these thoughts and emotions. There is no closure to the situation or even an apparent understanding of why it has happened. It looks and feels different from traditional grief in that you have not experienced the physical loss of your loved one, yet the sense of loss is real. Well-meaning family and friends may not be able to recognize your grief, and thus don’t understand how to interact with you. On the other hand, others may try to relate to you and share their grief experience in losing a loved one to death. It may feel difficult to hear, but recognize they are only trying to help.  

Remember that there is no one right way to maneuver through this experience. The following steps, however, may serve as a guide to help you process your emotions and move forward:

· Let yourself view this as a loss with no true resolution. Even though you may not be able to change the situation, you can begin the grieving process as you adjust to your new role.

· Think about your strengths as a caregiver. Consider which tasks you’re able to handle and which you could use back-up for. Then reach out for support from family, friends and community resources. Don’t be embarrassed if you need to ask for help. Care coaching programs like BRI Care Consultation™ can guide you through this new normal and help provide you with resources and steps to live a healthy life.

· Understand that your loved one is not the diagnosis or the disease. You could not control the circumstances that led to the disease, and you may not have control over how it progresses. Be kind to yourself.

· Form a care team. Put together the resources and care you need. These can include a support group to meet others who are undergoing similar challenges, or professional help from a therapist, clergy person or other expert who can help you recognize and cope with your feelings.

· Look for ways to reminisce on the wonderful times you had with your loved one. Instead of focusing on loss, it can make you feel better to put your attention on good memories.

· Prioritize regular respite, not only to give yourself a break, but also as a way to celebrate all that you do as a caregiver and to allow for some self-love.

Although the caregiving journey can involve painful feelings of loss, it can also be filled with joys, great and small. Let yourself embrace the gifts of laughter and love along the way and try to focus on the great times the two of you have shared.

A Man of Faith’s Last Great Lesson

My dad loved to sing and loved any meal that brought our family together. He loved boats and the beach and being outdoors. He loved God, and his prayers were filled with gratitude.

He taught me how to spell my name in Morse code, to play pool and ping-pong, to bait a fish hook, but the important things he taught me were by his example. He was compassionate, caring and respectful. I never heard him say a negative word about another person. What a lesson that was.

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Dad is 81 now. His once-brilliant mind has been ravaged by dementia. He doesn’t know my name. He rarely says two sentences in a row that make any sense.

And yet without words he is still teaching me one of the most important lessons of all: how to trust God in the smallest moments, how to see that God is still present and working through all of us, even now, even on those days when I don’t understand a thing my father is saying except the word “beautiful.”

Dad was a respected radiation oncologist. He trained and taught at MD Anderson in Houston, Texas, and has spent most of his life in Nashville practicing at Vanderbilt, Nashville Memorial and St. Thomas hospitals.

His main work was at Park View/Centennial, which opened the Sarah Cannon Cancer Center, named for one of his patients.

When I first started my singing career, people recognized my name because of his accomplishments.

They would come up to me and say, “Your father is such a wonderful doctor. He treated my mother a couple of years ago and it made such a difference. He has a wonderful bedside manner. It gave us so much confidence and hope. We’ll never forget him.”

Today he doesn’t remember what happened an hour ago, let alone five minutes ago. He’ll launch into a nonsensical conversation with disjointed phrases and I’ll hold his hand, listening. He had a beautiful voice—still has—but he’s lost all the words to the hymns he taught me, the ones we sang together.

Sometimes I’ll sing one to him and he’ll pick up the tune, but if I stop, he’s lost again, as if the notes just fall off the page.

“Why?” I’ve asked time and again, along with my three sisters. Why did this happen to this vibrant, intelligent, faith-filled man? Why did something like this happen to our mother too? There was no history of dementia in our family. Our grandparents didn’t suffer from it. We had no roadmap.

Mom and Dad were both in their seventies when the first telltale signs appeared—a little forgetfulness, a little repetition. But wasn’t that normal with age? I forget things all the time. It can be a nagging fear if you don’t wrestle it to the ground.

With Dad the confusion grew worse, then the erosion of cognition. I was visiting my parents late one evening on a break during a concert tour. My mom was wrapped up in a robe, a blanket around her feet. There was sweetness in our time together.

I stood up. “Mom, I’ve got to go and get on the bus. They’re waiting for me.”

“Are you going somewhere?” she asked.

“Yes, I have a concert in Detroit tomorrow night. A reunion tour with my old friend Michael W. Smith.” “Oh, you sing?” she said with a curious smile. “What kind of songs?” I swallowed the lump in my throat, overcome by the memories of all the songs I had played just for her.

“Would you sing something for me now?” she asked wistfully.

I started in on “Revive Us Again,” one of her favorite hymns. Halfway through I stopped, asking if she remembered it.

“No,” she said, “but I love it. Keep going.” I did until it was time to get on the bus. “Can I go on the bus with you? Can I come too?” she asked.

“Not this time, Mom, but I’ll be back.” I kissed her good-bye and held it together until she was out of my sight.

Mom had a type of dementia known as Lewy Body, which involved confusion and altered realities. The good news was that it was not a constant condition, which allowed us to connect with her on good days.

But Dad’s dementia became completely debilitating. His vocabulary disappeared. Even familiar objects he couldn’t name—a telephone, a seat belt, a fork.

My sisters, Kathy, Mimi, Carol, and I have become a team, meeting with doctors and hiring caregivers (thank you, Dad, for all of your careful financial planning). Communication has been vital. My advice to every family going through this is to talk honestly with each other.

The first elephant in the room was quietly retiring my dad’s medical license and then not letting him drive. My sister Mimi and her husband, Jerry, moved in with Mom and Dad for a year, but they both work full-time so we still needed caregivers. We also had to explain things to Dad.

The time came when we knew it was in our parents’ best interest for them to sign papers giving us power of attorney and control of their affairs. On a day when they were having lunch with Walt, their trusted minister, my sisters and I joined them at the end of the meal with the necessary papers.

My father turned to Walt. “Is this the right thing?” he asked, holding the pen. My mother, sitting beside him with her papers asked, “Am I doing the right thing?”

Walt’s got a voice so comforting it’s like thick caramel. “Can you see this loving family around you?” he said. “Can you see how they care? You poured love and respect into your daughters for a moment like this. You can trust them.”

This reversal of roles, caring for the ones who had been so capable, is not easy. We would adjust to one change, one new wrinkle in this long downward slide, and then there’d be something new, one more loss of function, and we’d regroup.

All my life I’ve asked God to lead me to where he needed me. Again and again he’s answered that prayer. But this time there were no easy answers.

One night I opened up to a trusted friend, telling her of my frustrations, my confusion, my guilt, my sense of loss, my anger. She listened patiently, offering suggestions, lessons she had learned in the process of losing her own parents.

“Amy, this is going to be the greatest walk of faith you’ve ever had. You can’t see the whole picture now, but each day you’re going to have to trust God more than you ever have before.

“Day by day you will find the inspiration you need and you’ll see how God is present in each moment. Give yourself the freedom to laugh and cry.”

And then came the words that changed everything: “I know this is hard, but this will be the last great lesson you’ll learn from your parents.”

Mom’s health was clearly fading. Out of the blue came the idea to bring her to our house to live with us. Mom moved into my daughter Millie’s room for the last three weeks of her life.

I don’t think we locked our front door that whole time. People kept coming and going, nurses, hospice workers, my sisters, their husbands, the grandchildren, friends. Anytime day or night, we could go sit with her, sing songs to her, hold her hand.

A few days before she died, another inspiration hit me. We should have a girls’ night in, I thought. Now. I called my sisters and said, “Come over tonight. Bring ten phrases with you, things that will trigger a memory. Don’t write down the whole story. The phrase should be enough to remind you of it.”

Even though I’m the youngest, I can be bossy!

For three and half hours we sat around Mom’s bed and told stories. She never opened her eyes, but her breathing slowed as if she was hearing every word.

“Mom, this is how we remember you,” we said. “This is how you showed us your love. These are the stories we tell each other and we’ll tell the grandkids and great-grandkids. This was the difference you made in our life.” Kathy, Mimi, Carol and I had that precious time with Mom and with each other.

The next morning when the hospice nurse stopped by to check on Mom, she said, “Your mom is in transition.” In less than 24 hours she was gone.

Recently I found an old video I had taken of Mom and Dad. I asked my mother three things she loved about Dad. She said, “His smile, his laugh, his voice.”

When I asked my dad what three things he loved about Mom, he broke down and said, “I never want to live one day without her.” It’s been 18 months since Mom passed away.

These days my father lives in a one-bedroom apartment with round-the-clock care. It’s working and we’re very grateful to the people who are helping us, but I have to remind myself, it’s only for now. Each day brings new challenges, each day is different.

Not long ago I took Dad for a walk on the farm. We’ve got an old log cabin in the back and I took him inside, made a fire and we sat there like two kids on a campout.

“Beautiful,” he said, one of his few words these days, at least one of the few I can understand. I guess if you are going to hang on to a short list of words, beautiful is a good one.

When we were through, we went outside, stood there, arm in arm, totally present, letting a warm late winter sun bathe us. “Beautiful,” my father said. I couldn’t agree more.

This story appeared in the February 2013 issue of Guideposts.

Watch as Amy Grant shares three caregiving tips.

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A Mail Carrier’s Instincts Save a Life and Start a Friendship

In late 2017, at a certain holiday celebration in Staten Island, New York, the attendees had more to be grateful for than most.

Four months ago, an 86-year-old woman named Marie Boyer fell in her home. For days, she was incapacitated, immobile. Because her windows were shut, no one could hear her cry out.

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On the fourth day, her regular mail carrier, Lisa Sweeney, returned from vacation and noticed something was amiss. Though she and Marie hadn’t had much conversation over the years, Lisa knew her customer’s habits. The pile of mail in the mailbox, untouched garbage cans by the curb and the car in the driveway were clear warning signs. She knocked on a neighbor’s door, but he’d been away on vacation too and didn’t know anything. “I just had a feeling in my heart that Marie was inside,” Lisa recalls. She called 911 and continued on her route, but kept circling back to Marie’s house until police arrived.

Rescuers broke in through a back window to discover Marie unconscious. Learning that Marie was still alive, Lisa burst into tears, so happy that her customer of 11 years had been rescued.

Since that August day, Marie has moved into an assisted-living facility, but Lisa visits her regularly and still brings her mail. They even celebrated Marie’s 87th  birthday at a restaurant across the street. Lisa’s son has been known to stop by to see Marie too. The bond forged that summer day continues stronger than ever.

On Thanksgiving Day, Lisa Sweeney’s home on Staten Island held extra guests: Marie and her son, daughter-in-law and daughter. It was their first Thanksgiving together as a family since Marie’s own mother passed away.

Lisa brought Marie over early to watch the parade on TV together—as well as one of the turkeys frying outside. Marie also got in some quality animal time with Lisa’s six cats and one dog. “I had to check her pocketbook before she left,” Lisa jokes, “just to make sure she didn’t take one home.”

For Lisa, what happened was no chance event. “To me, I think things happen for a reason,” she says. “Marie has a new lease on life.” And, it appears, another daughter to love.

This Alzheimer’s Memory Cafe Is Giving Caregivers a Break

Pam Van Ahn and her sister Jean spent four years providing respite care to family caregivers who couldn’t afford a break. But Van Ahn wanted to do more to help full-time caregivers manage the stress of looking after a loved one.

She founded Amy’s Place, a memory care café where family caregivers of loved ones with dementia, Alzheimer’s and other cognitive illnesses can socialize and find support. Though memory care cafés are popular in Europe and Australia, they’re less known in the States, and Amy’s Place is the first free-standing café in the country. Van Ahn discovered the useful community building idea online.

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“Really, [the memory care café idea] just came up in a search,” Van Ahn tells Guideposts.org. “You could even download a toolkit on how to create one.”

The concept was first created by a Dutch psychiatrist, Dr. Bere Miesen, who noticed dementia was a taboo topic, even amongst family members. In 1977, he introduced the first memory care café in the Netherlands to make a safe space for caregivers to support one another. 

That seed, planted over 40 years ago, traveled decades, and thousands of miles to reach Van Ahn during a crucial time in her own life. A Registered Nurse for 15 years, Van Ahn moved down south when her mother, with whom she was never particularly close, became ill. Van Ahn became her live-in caregiver and felt the effects of the job first-hand.

“It was scary,” Van Ahn says. “My mom was mean. She was mean to us her whole life but there are lots of those kinds of stories out there. We have to be very, very careful in the fingers that we’re pointing at people who are caregivers when you hear these comments like, ‘Gosh. She’s so mean to him,’ or, ‘She won’t even visit him,’ or whatever. There’s a reason for the behavior for people with Alzheimer’s and there is a reason for a caregiver’s behavior too.”

Her mom passed a year later, and Van Ahn was left in the middle of a life crisis. She had moved her entire life to a different state and didn’t have a full-time job anymore. More than anything, after experiencing what it took to be a caregiver to someone with dementia, she wanted to help others weather that particular storm. She found Dr. Miesen’s idea interesting because it fulfilled a need she had been wanting to address for some time.

“We’ve done a really good job of bringing this thing called Alzheimer’s disease out of the closet and trying to reduce the stigma,” Van Ahn says. “But where we are failing miserably is helping these caregiving families remain socially engaged.”

For a caregiver, social outings are greatly limited when providing round-the-clock care to a loved one.

“There are trips to the doctor’s office,” Van Ahn says. “If you’re lucky, maybe you get to go to Kroger or Publix. That’s an outing to get groceries. They’re just not involved, socially, anymore. Many of these families can’t afford to be. You must pick and choose. Church? You can’t even go to church anymore because the person with the disease is suddenly scared in the church that you’ve gone to for 30 or 40 years.”

When she was caring for her mother, Van Ahn would regularly attend support group meetings for caregivers, but she said even those felt lacking in ways. As educational and beneficial as they were, she didn’t want the precious time she had to herself to morph into more time on the clock.

“Ninety percent of everything that we do at this place called Amy’s Place is social,” Van Ahn says. Her non-profit Caring Together in Hope, and Amy’s Place, the Memory Care Café, put on over 100 free events per year geared towards caregivers and their families, things like pizza parties, spa days, painting classes, along with more essential needs, like haircuts, free dental exams, eye exams, and hearing tests. They rely on donations and the help of local business to sponsor these events, to help provide transportation when necessary, and they usually take place at the café, a beautiful two-story home in historic downtown Roswell, just 20 minutes outside of Atlanta.

After researching Memory Care Cafes and reaching out to experts like Dr. Jytte Lokvig, an Alzheimer’s specialist who set up the first “pop-up” Memory Care Café in Santa Fe, New Mexico, Van Ahn knew she wanted to set up shop in a place that felt like home, one where caregivers and their loved ones could feel at ease. She applied for a 501c3, wrote grant proposals for endowments from local foundations, and met with the mayor of Roswell to ensure her nonprofit could be housed in the city.

“We didn’t want it near a strip mall or anything medical, we wanted it in a neighborhood,” Van Ahn explains. She hopes the location alone can foster friendships and a feeling of community, which is the café’s biggest goal.

“When they’re here, they’re not talking about Alzheimer’s or caregiving; these people are talking about their children, their grandchildren, the weather, stuff that you and I would talk about if we went out for lunch,” Van Ahn says.

And while the Café does offer educational resources and some financial aid, after surveying its members, Van Ahn found people visiting didn’t want more classes on how to be a good caregiver, they just wanted a change of scenery and some social interaction.

“There’s a lot of great classes out there about how to be a good caregiver,” Van Ahn says. “That really is important to me, but it’s less important to me than it was even five years ago. When we started this we thought, ‘This would be great for caregivers to come to,’ and the ultimate compliment, the most wonderful thing that happens here, is when these caregivers create new friendships that they made here. That’s when you know that you have done something right.”

Alzheimer’s Disease: Comedy Improv Is a Surprising Resource

Grace, my teenage daughter, sat on our couch with my 87-year-old mom, goofing around on her phone. “You need to do homework,” I reminded her.

Something stirred inside Mom. “Don’t you tell her what to do,” she said.

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“That’s my job,” I said lightly. “I’m her mommy.”

She stared at me. “You’re not her mommy.”

Grace’s eyes widened. “Well then, who is she?” Grace asked.

Mom struggled to come up with an answer, but I was ready. “She is my daughter,” I insisted. “And I am your daughter.”

​“You. Are. Not. My. Daughter,” Mom said, her face pinched.

That stung. Not her daughter? I was the youngest of her six kids, and we’d always been close. Couldn’t she see the love I had for her? Intellectually, I knew this was a symptom of her dementia, but tell that to my heart.

Enter my husband, Mondy. “Virginia,” he said to my mom, with theatrical flair. “I’m organizing a heist tonight. I need you to drive the getaway car.” Instantly the tension was swept away. Mom sat up, smiling, saying, “I’m calling the police on you.” She knew he was joking and enjoyed foiling the scheme.

 

Why couldn’t I be more like Mondy? He didn’t contradict Mom. Instead he played off her—the more madcap, the better. It was like watching two wacky improv comedians. I knew what he was doing. How he did it, even. I was the one who’d told him the ways improvisation and dementia care were similar. Yet there I was again, like the straight man in a comedy sketch who was never in on the fun.

That was how I’d met Mondy in 1990, doing improv comedy. I was living in Milwaukee, Wisconsin, doing administrative work for an improv group, when a friend invited me to join a troupe doing a Monty Python revue. Mondy was part of the troupe. No one could make me laugh the way he did. We started performing together. His razor-sharp intellect, my physical humor—we were a great team. It seemed natural that we’d make a life together.

But with the laughter came sadness. My parents were living in Illinois, enjoying retirement, when Dad started showing signs of dementia. Mom threw herself into caring for him. She’d always been happiest when she was busy. She’d thrived on running our household, raising the six of us, making sure we had a strong spiritual foundation.

In the end, the strain of caring for Dad was too much. My parents moved to St. Louis, Missouri. Mom moved in with one of my sisters, and Dad entered a long-term care facility.

I wanted to understand this disease that steals more than memories—it threatens who we are. One night I typed into Google “What are the rules for caring for someone with Alzheimer’s?

Reading through the results, I came across this line: “Step into their world.” A basic tenet of improvisational theater. Don’t argue the premise. Build on it. Don’t say no. Say “Yes, and…” It felt like a message meant just for me. Caregiving for a loved one with Alzheimer’s takes a toll on even the strongest among us. This was a way I could make a difference, teaching people how to defuse conflicts using the principles of improv.

I came up with a presentation and asked caregiver support groups if I could speak to them. When Mondy didn’t have an acting gig, he’d join me and we’d do our two-person show. “This is just what I’ve been looking for,” family caregivers would tell me. Word spread. I retooled the material for corporate team-building workshops too. Soon I was getting paid to share my advice.

Dad died in 2000, when Grace was two. Mom was 75 and spent summers with us. She doted on Grace. But several years later, it was clear she was having trouble. One day, my sister called from St. Louis. “Mom got lost driving home from the grocery,” she said. A six-block drive. My sister worked full-time. Mondy’s and my schedules were more flexible. We decided Mom would move in with us. But we couldn’t do that in Milwaukee. Our families were too far apart.

“What about Asheville, North Carolina?” Mondy suggested. “You’d have two sisters close by.”

Asheville’s thriving arts scene would be perfect for Mondy’s acting and commercial voiceover work. Surely I’d be able to find speaking engagements. We took a leap of faith and made the move in 2006. What we didn’t foresee was the recession. Mondy couldn’t find work. I struggled to get bookings as well.

With both of us caring for Mom full-time, Mondy and I took on different roles. I managed Mom’s meds, helped her get showered and dressed, made sure she ate a healthy diet. I wasn’t looking to turn our interactions into a comedy sketch. I just wanted to get to the next thing on my to-do list. Seeing to Grace. Chores. Making new contacts for speaking engagements. My workshops were our main source of income.

Mondy? He was Mr. Fun. All the improv techniques I’d been teaching were second nature to him. He liked performing. Without regular acting gigs, he turned his creative energies toward Mom.

Seeing a squirrel out the window, leaping from branch to branch, she mistook it for a monkey. Mondy would go with it. He’d say, “Yes, and it seems a bit early for monkey season.” Mom would giggle and say something even sillier. “Yes, and…” Mondy would reply. Round and round they’d go. When Mom said she used to roller-skate down our street as a girl, Mondy said, “Yes, I can see you zipping by.” It didn’t matter that Mom had grown up in West Virginia, not North Carolina. Mondy was all about affirming. Getting her talking. Mom thrived on the attention.

It was so obvious. But too often I couldn’t do it. I found myself correcting Mom, trying to get her to be who she was. She gravitated to Mondy. He could do no wrong. Me? By trying to get her to be the mom I knew, I made her feel as if she were wrong. “Why are you so mean?” she’d ask.

Things got worse after Mom was diagnosed with diabetes. I had to be even more careful about her diet. Mom didn’t understand why she couldn’t have a second bowl of ice cream. Sometimes she’d lash out and curse at me. My mom, who was so sweet she considered shoot a swear word.

I was frustrated. “What am I missing?” I asked Mondy.

“You know what it is. She’s your mom,” he said. If it were my mom, I would be in your shoes.”

I knew he was right. I wanted to be able to have a real conversation with Mom, to talk about my daughter and hear my mom’s perspective. To be as connected to her as I’d felt growing up. Grace had been writing down the family stories Mom often repeated. One day we’d treasure them. Right now, though, what I wanted most from Mom was something she couldn’t give me.

Maybe that’s why it hurt so much that night to hear her say, “You. Are. Not. My. Daughter.” I needed to prepare for a presentation, but long after Mom had gone to bed, I sat at my desk, her words echoing in my mind. I had no clever comeback, no way to handle this. Yes, and? No, I just couldn’t go there.

We’d been living in North Carolina, living with Alzheimer’s, for nine years by then. In some ways, our lives were more stable. Mondy had purchased a local beeswax candle-making company. He’d moved the works to a barn on our property, enabling him to work from home. Grace had grown into a mature and responsible teenager. We were active in theater in town. Acting was less a source of income and more a welcome release. My sisters subbed for us, allowing us to take a weekend away as a family from time to time. Dementia may have overtaken her mind, but physically

Mom was strong. I was convinced that the stimulation she got from us, Mondy especially, was part of the reason. Mom might have been healthy, but the disease was progressing. She was less verbal, more resistant. Everything was a battle. She didn’t want to get dressed. Didn’t want to go to bed. Didn’t like the meals I made.

I got up from my desk and walked to Mom’s room. I stood in the doorway for a while, watching her sleep. She’d been the first to laugh at my jokes. She’d bandaged my knees when I fell, taught me God was there when I was afraid. That woman was still there, but her memories weren’t. And I wasn’t that little girl anymore. We’d both changed, but I was the only one clinging to the past.

In improv, there’s no clinging to a particular role. In seconds, you can go from being a waitress to an astronaut. It’s about accepting whatever comes. The way my mother had said God accepts us. With all our flaws and weaknesses yet loving us anyway. The pain I felt wasn’t just that I was losing my mom. I felt I was losing part of myself. I had to let go of it all. Maybe in Mom’s eyes, I was no longer her daughter. That didn’t make me love her any less. I could still be a part of her world, if I was willing to join her there.

A few days later, I took a call for a booking on the porch, where I could talk without Mom joining in. When the call ended and I went back into the kitchen, there was Mom devouring Moose Tracks ice cream right from the quart. Her blood sugar was already high from getting into Grace’s Easter candy that morning. This was dangerous. I wanted to yell, “You can’t have ice cream! You have diabetes!” But I caught myself. “It’s such a hot day,” I said. “I’m glad you found the ice cream.”

Mom looked down at the carton. “Let me get you some,” she said. She set the ice cream on the counter and opened the cabinet to get a bowl. I grabbed the Moose Tracks and stuck it back in the freezer. When Mom turned, I said, “Thanks for the bowl. Could you fill it with water? I’d like to put it on the porch for the dogs.” Mom smiled, happy to help.

People with Alzheimer’s are told what they can’t do, what’s not true, what not to say, at every turn. Of course, they shut down. Who wouldn’t? From then on, I acted more like Mondy and made “Yes, and…” my go-to response. My relationship with Mom eased, even as the challenges of caring for her grew.

Last year, we moved Mom to a memory care facility. We visit her almost daily. At 92, she’s still physically fit but she doesn’t always know who we are. That’s okay. I’m glad to step into her world and love her right where she’s at.

Read more: 7 Keys to Caring for a Loved One with Dementia

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Alzheimer’s and the Powerful World of Memory

I found myself thinking about Buddy today. Because of a new book I’m just starting work on.

Gracie and I met Buddy early last spring walking the Housatonic Flats, an easy loop trail that runs along the Housatonic River here in western Massachusetts. The bigger Berkshire mountain trails were still mainly impassable this early in the season. Gracie could handle them, but I’d be slip sliding away.

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We ran into Buddy and his owner, both older gents, at the trailhead. Buddy was a straw-colored golden retriever mix with a white mask of age, a classic sugar face. His owner matched him with a thatch of snowy hair. There is nothing more dear on a dog than that sugar face. Nothing sweeter than an old dog.

Gracie was doing zoomies around Buddy, showing off as usual. Still zooming at five years old. Goldens never really grow up, the Peter Pans of the dog world. Buddy sat patiently, mouth agape, tongue drooping out, staring straight ahead. Bemused but a bit vacant. 

“Buddy’s got a little doggie dementia, age-related,” his owner offered.

Gracie came to a stop beside him and sat, as if she understood. “He forgets stuff and gets a little confused. I found him crying the other night because he couldn’t find his way upstairs. I keep all the lights on now.”

I gave Buddy a scratch on the neck. He leaned into me appreciatively. What’s the prognosis for canine dementia? I wondered. As if he knew what I was thinking, Buddy’s owner said, “I just want him to be happy as long as possible. He’s doing okay.” Buddy looked up at his owner then rose and started slowly back toward the parking area. 

“I guess he’s had enough.” 

I waved goodbye and followed Gracie down the trail towards the river. We do our best thinking out in the woods, Gracie and me. Thanks to Buddy, that day I couldn’t help but think about Alzheimer’s and all of the families who suffer from this terrible disease, a thief that steals your mind one memory at a time.  

My family is one. I’ve written about my mother’s battle with Alzheimer’s. Watching the disease take its infernal course was like watching my mom slowly disappear before my eyes, as she forgot everything and everyone, even herself. The question that haunts me now is, will I too disappear? Alzheimer’s afflicted not only my mother but both her sisters and one of her three brothers (the other two didn’t live long enough to show symptoms). It started with her father, my grandfather, and there is talk it goes further back. Some of my older cousins are reportedly showing signs.   

The book I am writing is a sharing of my family’s experience caregiving for my mother, both the joys and the sorrows, the humor and the heartbreak, that so many of you have known, as well as my own medical exploration of my susceptibility to this disease. What can doctors tell me? Do I really want to know what might lie ahead? How will my faith play a role? My sobriety? I already detect chinks in my memory. Are they symptoms or just the expected vagaries of aging? Did we miss the early warning signs in my mother or just deny them?   

As the book progresses, I will be sharing more with you about the journey, and I would love to hear about your own experiences that I may include in the story. 

That day last spring I caught up to Gracie at the riverbank. She was staring out at the gray still water of the Housatonic, a few stray chunks of ice bobbing on the surface. I wondered what she was thinking or if she was just absorbing the moment, the seconds as they passed, as dogs do. Our memories are a nearly infinite constellation of moments that store up over a lifetime, a way to remember who we are…and whose we are. Wherever this journey takes me, I know I will not be alone.

Read more about Alzheimer’s and caregiving here. 

Allowing Faith to Ease Their Fears

I parked in the driveway of our lodge-style home nestled among towering cedars and flowering dogwoods. Even returning from an everyday errand, bringing my youngest kids home from school, I couldn’t help but admire the view and feel blessed.

John and I had milled each log ourselves, back when our family business doing custom milling was just getting started. I dreamed of growing old here, our six children getting married in the backyard. Emma’s November wedding was only eight months away.

Strange, I thought. There was a white piece of paper taped to the front door. “Look,” I said, “maybe someone’s invited us to a party.”

Ten-year-old Jack, my youngest, grabbed the note off the door and handed it to me. “What is it, Mommy?”

My eyes fixed on one word: FORECLOSURE. I stared at it in disbelief. John had been trying to refinance. There has to be some mistake.

“Mom, are you okay?” Amy, my 12-year-old, asked.

I forced a smile. Stay calm. Don’t scare the kids. “It’s nothing,” I told them, shoving the notice into my pocket. “Go get a snack. I’ll come inside after I call Dad.”

I punched speed-dial 1 on my cell. “John, I just came home to a foreclosure notice on the door.”

“What?!” he said. “I thought they’d give us more time. But please don’t worry, honey. I won’t let it get to auction.”

Don’t worry? “John,” I said, fighting to keep my voice down, “I knew we were behind, but you didn’t tell me we’d missed another house payment.”

Silence. “I’m sorry,” he finally said. “I’ve been praying a big job would come in. Something. I didn’t want to upset you for no reason.”

No reason? A stew of emotions boiled up inside me. Anger, fear, sadness—I pushed it all back down, like trying to shove a beach ball under the water. Blowing up at John wouldn’t help. I knew how our business was struggling. No one was building or remodeling.

Even worse, we’d bankrolled everything with a home-equity loan. We could lose everything.

No! I couldn’t let myself think like that. We’d been through tough times before. God had always come through for us. I had to stay positive—for John and the kids. That’s what they needed most from me. Not panic.

“I’m coming home,” John said. “I want to talk with everyone. Then I’m going to make some calls and get to the bottom of this. I’ll work it out.”

We gathered in the living room: Jack and Amy, Scott, 14, Mark, who was taking a semester off from college to save money, and Nathan, recently back home after five years in the Marines. Only Emma was on her own.

“We got some bad news today,” John said. “We’re behind on our house payments and now the bank wants the money or they say that they will sell the house.”

“But where would we live?” Amy cried.

“It’s not going to get to that,” John said. “I’m trying to get a new loan from the bank and I’ve got some big milling jobs I hope will come through. I know this is upsetting, but we have to trust that God is in control.”

The kids looked at one another, the younger ones’ eyes panicky. As much as it worried me to think of losing our home, I hated even more seeing everyone so scared. I had to say something to make things better.

“No matter what happens we have each other,” I said. “That’s what counts.” The kids stared at me like I was speaking a foreign language.

With each passing day it grew clearer that there was nothing more John could do. Calls to prospective customers went unreturned. He applied for loan modification programs only to be rejected or be told we’d owe even more than we did.

We discovered our loan had been sold to a different lender, but they were no more willing to work with us.

“All they said is that the auction is scheduled for May,” John said. “And with penalties and fees, what we owe is nearly double. It’s like they don’t even care.” He slammed the phone into the charger.

I told myself it was just a house, just pieces of timber fitted together. We’d find a new place to live, start over. After all, that’s what we’d done when we moved here 10 years ago from Minnesota.

But then I went to kiss Amy goodnight and found her crying in her room. “I don’t want to leave,” she said. “All of my friends are here. It won’t be the same somewhere else.”

It broke my heart. I wanted to tell her I was afraid too. But she was hurting enough so I tried to reassure her, “You’ll make new friends. You’ll see, honey, everything is going to work out.”

I thought Jack was holding up better, until Scott asked if he could sleep in the living room. “Jack wakes me up every night,” he said. “I think he’s having nightmares.”

What could I do? I was afraid—no, ashamed—to tell people we were losing our house. Then in early May the auction notice was printed in the newspaper. No way to avoid it now. It was official, scheduled for the same day as Scott’s eighth-grade graduation.

I was glad for an excuse not to go to the courthouse. “They really need volunteers to help set up for graduation,” I told John. “Both of us don’t need to be at the auction.”

Inside the school gym I set up chairs. The other volunteers talked about summer vacation plans. All I could think about were the strangers bidding on our house, like vultures feasting on our misfortune. Dear God, I prayed, if there’s any chance for a miracle…

Late that afternoon John came by the school. He looked drained, exhausted. There had been no last-minute reprieve. “I’m so sorry,” he said. “I hope I live long enough to make this up to you.”

“We’ll get through it,” I choked out. I wished I could believe it.

The next morning we started packing. We didn’t know when the final eviction notice would arrive, but there was no point in delaying the inevitable. I pulled out boxes and old newspapers and wrapped my great-grandmother’s dishes.

John and the kids helped, but it felt like we were in separate worlds, grim-faced, barely speaking to each other. Around me were memories of happier times, only now it seemed as if they were all being packed away too.

We filled the boxes I had on hand. John took the kids to get more. I watched the car go down the driveway. Just an errand, but it felt like more than that, the distance between us more than I could possibly bridge.

I needed to know how to help them. Maybe if I got some advice, or could call someone. I thought of Linda, an old friend from high school. She’d gotten her master’s in psychology.

I told her everything. “It’s all I can do to keep from crying,” I said. “But I don’t want to scare the kids even more…”

“How could you not cry?” she said. “Losing your home is like a death in the family. You need to let yourself grieve. And share your sadness with your children and John. They need to know it’s okay to feel sad. Grief is a journey that leads to healing and stronger faith. But you have to go through it and not pretend it isn’t happening and your feelings aren’t real.”

I was sobbing before she even finished, tears of anger and loss, fear and regret flooding down my cheeks.

John and I had been trying so hard to protect each other, to protect the kids. But that meant each of us ended up suffering alone, hiding from the truth, when what we needed was to allow ourselves to hurt and heal together.

I thanked Linda and hung up. I sank to my knees, my whole body shaking. Hadn’t John and I always taught the kids to trust God in all things, that his hands were big enough to hold our greatest fears?

Yet the truth of the matter was, even though I’d pleaded for him to save us from foreclosure, I hadn’t trusted him with my real problem—the roiling feelings that went with losing our home and wondering what the future held.

God, I’m so mixed up, I can’t even feel you with me right now, I prayed. But I know you are bigger than my anger and sorrow and fear. I’m putting it all in your hands. All of it. And trusting you.

When John and the kids got home they could see that I’d been crying. “There’s something I need to tell you,” I said. I hesitated, the words still not coming easily. “But I don’t know quite how to say it.”

“Just tell us, Mom,” Amy said. “We can handle it.”

“I love this house,” I said. “I’m sad that we have to leave. And I’m scared too. I wonder where we’ll live and what will happen to our family. How we’ll get by. I just don’t know and I think that’s what scares me the most.”

John wrapped his arms around me and the kids gathered round. No one said everything was going to be okay. It was enough just to be together and grieve and face our challenges as a family.

It’s been more than two years now since we lost our home. We live in a smaller rental house in town. I won’t try to sugarcoat it. It hasn’t been easy. But we’ve talked more, and sharing our worries and fears has made our family closer and stronger.

We have been blessed in other ways. Emma’s wedding was held in a nearby seaside town where she’d graduated from college, and it was lovely. Our business is picking up along with the economy and we’re feeling good again. Together we’re making new memories.

Maybe best of all is knowing that it’s okay to grieve, that trusting God with our pain and sorrow gives him room to help us find the healing that only he can bring and to lead us to a future that is abundant with blessings.

 

Download your FREE ebook, True Inspirational Stories: 9 Real Life Stories of Hope & Faith

Allison Pataki on How Her Marriage Survived Her Husband’s Stroke

VIDEO 1

Dave and I were 30 years old. Young, healthy couple, married and on the cusp of becoming parents. So we took what is known as a babymoon—a last trip together as a couple before life changes and the new baby arrives. And so Dave and I are on the plane, I’m sitting next to my husband. He’s a young, healthy physician. He’s a lifelong athlete.

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We’re on this flight and about an hour into the plane ride, Dave turns to me and he asks me, “Does my right eye look weird?” And I looked into his eye, and the answer was yes.

His pupil was dilated, asymmetrically. And so I threw out the most ridiculous thing I could think of, expecting Dave—the very calm doctor who sees gunshot wounds in the ER to say, “No, no, no, that’s ridiculous.” I said, “Dave, are you having a stroke?” And his voice got very quiet. And he just looked at me and he said, “I think I might be. “

And a few minutes later, Dave shut his eyes and lost consciousness. And from that moment on, the life that we knew, the life we had planned for, the life we were living together changed really in an instant.

The flight attendants and I decided we needed to make an emergency landing. They said we will reroute the plane to Fargo, North Dakota. And Dave was in a coma. And a few hours into the ER, through this battery of tests—the doctors were able to deduce that Dave had had a very rare, very serious stroke. And it wasn’t clear whether he would be waking up. And if he did wake up, who Dave would be? What we would find?

Dave did wake up, miraculously, after being in a coma. He blinked his eyes open. And I looked into those green eyes and it was clear that I was looking at the body of my husband. But that Dave had been wiped clean.

When Dave woke up from the stroke, his mind and his body were less functional than that of a newborn. Dave couldn’t swallow. He couldn’t breathe on his own. He couldn’t eat on his own. And so Dave had to go through the process of regrowing his brain and his mind from scratch.

When he became a little bit more physically stable, then began the really long, and laborious, and painstaking work of actually regrowing Dave’s mind and his brain. And so here I was five months pregnant. Dave didn’t know what city he was in, even though we were in his hometown. He didn’t know what hospital he was in, even though this was the hospital in which he worked, in which he spent 24 hours a day a lot of the days of the week.

And what was most terrifying and painful at times was that he could no longer remember that we were about to have a baby. And that he was about to become a father to our little girl.

Brain injury is a really hard thing—not only for the patient, but for the caregiver, because recovery is not linear. You are not looking and seeing a scar, or a cast, or any sort of physical manifestation of this injury. Brain injury is an invisible injury. It’s in the mind and it’s the mind of your loved one that has been completely snatched from you.

And it’s really hard. It’s really confusing. It’s really nebulous. And it’s something that I think takes a toll not only on the patient, but also on the entire family and support system.

So Dave had to go through all sorts of therapy. We had to do it all. He had to learn everything from how to swallow, to how to eat, to how to get in and out of a car. He really went through every process of life, again.

Every step of the process was difficult for him and for our entire family. But it’s that last bit, I think, that was the most difficult, where he went from having a functional brain to becoming Dave once more. To becoming an adult, an independent man, and the man that I had married, and the man that I had loved.

So I had moments where I felt like the man I married was no longer there, and these moments were frustrating and painful for Dave. They were frustrating and painful for me.

The months go by, the baby arrived. So then we have the newborn baby in our family and also Dave, who is really growing up again, simultaneously in our home. Both of these people are growing brains from scratch. And time wears on. The fatigue sets in. The adrenaline wears off. And that’s really when it got really hard was—yes, the initial crisis was difficult. But seven, eight, nine months out when you’re tired and you’re weary in a way that’s not only physical—that’s when it got really hard.

And that’s when the fight became—all these therapists and doctors who were talking about, the goal is a full recovery—a full recovery. We had to really think, as a family, what does a full recovery mean? Does that mean that life gets back to looking exactly the way it was before the stroke?

No, that was no longer possible. That was plan A. Stroke took away plan A.

So then the question becomes, what do we do with this plan B that has been dropped on us? And we, for us, really, the fight became a full recovery means getting back to a full life. And a full life doesn’t mean the same life that we lived when we boarded that plane before Dave had his stroke. But it means Dave being able to participate in his life and in our family as a husband, as a father, as a son, as a friend.

And at that point, Dave made the decision that he was not going to return to orthopedic surgery. And we had to make our peace with the fact that that was OK. And that life would look different after the stroke, but life would still look good. And life would still be filled with love and hope and happy moments. And making new memories.

This was the first time in my life where I really confronted my own limits. And that control was really an illusion that had been ripped out from under us the moment Dave had his health crisis. And this was the moment where I really had to accept that I could not get through this one on my own. And that I was going to need help.

And I had to confront my vulnerability and my own limits. I had to ask for help. I had to lean on a network and a community of loved ones in a way that I had never done before. I had to tell my friends and my family and my parents and Dave’s family that we really needed their support to get through those tough early days of Dave’s recovery [and] the newborn baby being in our family all of a sudden.

Ultimately, I think the stroke was the moment when things between me and God got real. It was one thing before the stroke to walk around and say,” God is good and life is good.” It was quite another thing to still be able to lean on that and believe that and find that faith when things didn’t feel good, when things felt scary, and when things fell completely out of my control. And I had no idea where we were going.

Faith is ultimately something that you’re not relying on facts. You’re relying on something that’s not tangible. That’s not there. That you can’t immediately point to and say, “A-ha, I can prove this.”

This was a moment where I didn’t know where we were going. I didn’t know, as a family, what God had in store for us. I didn’t know that things would be OK. And so that was really when my faith was relied on, as opposed to just agreeing with the overwhelming facts that had previously existed—that God was good. Before the stroke, God had been good.

I remember there was this one morning where I felt very discouraged and I felt very tired. And I felt the grip of despair. And my mom looked at me and she said, “Ali, this is the time when you need your faith. This is when you need to lean on that. And to believe—yes, things might seem impossible right now.

“And for man, they are impossible, but for God, nothing is impossible. And don’t lose your faith. And don’t lose your belief that your family will get through this. That you will get through this together.”

And ultimately, in this moment, it was when I realized I couldn’t just lean on myself and my own self-reliance. I needed to lean on something bigger. I needed to lean on the friends who were telling me that they were God’s hands on Earth to support me and to be here for me. And I needed to believe in something larger.

That there was—in this moment, there was pain and there was hardship. But that all of it was going to be working together towards something bigger than what I could understand in that moment. And toward something that would ultimately be filled with hope and beauty and love—that there would be beauty, even in these broken places.

VIDEO 2
The significance of the four-leaf clover goes back to when Dave and I got engaged. When Dave got down on one knee to propose, we were in a field of clovers and we were looking for four-leaf clovers. And so Dave bent down on one knee, claiming he had found a four-leaf clover, and I realized as I saw that he actually had a knee bent and he was proposing. And so we didn’t find a four-leaf clover that day, but the next day we found two. 

And so we pressed those four-leaf clovers, and I put them next to the photo of us on the day we got engaged. And I wrote on our wedding day, “Dear Dave, may we always remember how lucky we are.” And I gave him this photo with the four-leaf clovers on our wedding day. 

Right after Dave had the stroke, I would come home from these long days in the ICU, and I’d come home from this husband who didn’t know the date, didn’t know his own name, didn’t know my name. And I would look at this image of us—so young, so naive, so happy, holding these four-leaf clovers with the note, “May we always remember how lucky we are.” And I would think, “We are not lucky. Our luck has run out. Our luck is gone, and why did I have to tempt God in this way, and sort of laugh at our good fortune?”

As time went on, and as Dave began to return to me and to return to himself, my definition of the word “luck” changed. Luck was no longer just dumb luck—something that we didn’t even know we had. It became an active process of just being grateful, and remembering all that we had in our lives for which we should be so appreciative. And it wasn’t just something that was dumb luck. 

It was something that you had to actually cultivate. Just a mind of gratitude, and a heart of gratitude. And so Dave survived. Dave made this miraculous recovery, and a year after the stroke, it was Father’s Day. And it was Dave’s first Father’s Day, because our daughter had been born. And we took our daughter back to the place where we had been engaged, and we found another four-leaf clover. 

And so we pressed this four-leaf clover, and added hers to ours. And we still have this photo of ourselves that says, “May we always remember how lucky we are.” And then, three years later, when we had our second daughter, the day before she was born, my mom found another four-leaf clover in the exact spot where we had found our original four-leaf clover and where we had gotten engaged. 

So we have these four four-leaf clovers now, with this image of our naive happy smiles. And now we look at that, and we look at the note of our “luck,” I think, with just a deeper understanding and a deeper appreciation. And we sort of feel like it’s God winking at us each time we find a four-leaf clover.

A Life-Changing Love

As I approached my fourth year of being a widow, my son Jon said to me one day, “Mom, you should attend singles meetings. Go somewhere. How will you ever meet anyone?”

I sat at the old oak kitchen table with Jon as he devoured a sandwich. “I can’t, Jon. I just can’t take a casserole and go to a singles meeting. I didn’t like boy/girl parties when I was thirteen. I still don’t like them. God’s going to have to send someone to me.”

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“That’s crazy, Mom. Do you really think you can just sit here day after day and someone will knock on your door and say, ‘Hello. I’m your Christian husband-to-be, sent by God.’”

I brightened. Sounded good to me. “Yes, Jon! That’s exactly what I’ll do.”

“Aw, Mom, be reasonable. You have to date.”

I’d dated some. I didn’t even like the word for someone my age who’d been married for 25 years. Jon left for work and I sat alone, thinking. “Lord,” I said, “I do not want to date. I just want to be a wife again. And I don’t want to get married simply for companionship. I want a real romance. You select him. You know me better than I know myself.” About the middle of last March I added a list of some qualifications for the husband I wanted:

1. God must be first in his life. I want to be second.
2. He’s well-read and loves books.
3. Further along than I am spiritually.
4. I’d like to be a minister’s wife, but I’ll leave that up to You.
5. He has a deep sense of humor so that we can laugh a lot.
6. He’s able to communicate and have long conversations.
7. Cares about people, especially people who are hurting.
8. He will allow me to write and speak as long as You want me to.
9. He needs me.
10. There must be romance. Sparks!

In the weeks that followed, thoughts that I believed were from God eased into my mind. I’m going to answer your prayer for a husband. The answer will come very quickly—so fast it will scare you if you don’t trust Me completely. The answer will come through a phone call from a Guideposts reader in response to an article.

“When will I know for certain, Lord?” I asked.

By your birthday.

So by July 8 I should know something.

In April Guideposts published my article on depression. That article evoked responses from quite a few men going through the pain of losing their wives. Phone calls and letters became fairly common—from the Atlanta, Georgia, area, as well as other states.

On April 8 I received a telephone call from a professor of sociology at Oklahoma State University in Stillwater. He lived on a small farm with some cattle, a grown son and a red dog. He was also a minister. Our conversations quickly became a regular thing, three or four times a week. I was corresponding with several other men too as a result of the article and had gone out with several from the Atlanta area. But pretty soon the professor/minister/farmer and I were writing almost every day. Our letters weren’t love letters exactly, but there always seemed to be something between the lines, and I easily understood the unwritten messages.

Sometimes Gene Acuff enclosed a blank sheet of paper without explanation. “What’s the blank paper?” I finally wrote.

His answer was immediate: “Things I want to say to you that you aren’t yet ready to hear.”

Gene planned to come to Atlanta to see me. He says that I invited him, but I didn’t. “What do you want to see?” I asked. “Where do you want to go?”

“I just want to see you. No parties, no big plans. I want to walk with you, talk and laugh. I want to sit in a porch swing with you and I’d like to go somewhere under a tin roof and listen to the rain with you.” I was smiling as I held the phone. I smiled a lot when we talked. We were talking six to eight hours weekly. My mother said I had a certain light back in my eyes again.

Of course, I carefully told myself this wasn’t serious. We didn’t really know each other. We’d just get acquainted, have some good conversation and good food, and relate our experiences of grief and loss. Gene’s wife of 25 years had died in February 1987 of an 11-day brain-related illness. His loss was much too recent for us to be serious. I had no way of knowing then that when Gene read my article on depression in the April Guideposts, God spoke to him: Check your wife’s Bible. If she has the same Scriptures underlined that Marion used in the article, phone her right away. She did and he did. Although neither of us understands it or can explain it, he says God told him then, She will be your new wife.

On my 51st birthday I went to get the mail as soon as I saw the mailman put it in the box. I knew a letter from Gene would arrive. He’d already sent me a dozen red roses. There had been some mention of photographs. So far, all I had was a very small family portrait taken several years ago. I wanted some new pictures but wouldn’t ask for them.

There were two letters, one so thick I knew it was the promised pictures. I was late for an appointment and it was terribly hot, so I sat in my car with the air conditioning going full blast and read the letters. Just as I opened the pictures, God seemed to say, Put the tape lying on the seat in the tape deck. I glanced on the seat. Yes, there lay a tape. Several days earlier all my Christian tapes had been stolen. The police returned them a few days later and by mistake included a country-and-western tape, which I’d meant to give back. I’m definitely not a country-and-western music fan. But I knew Gene was, and I had this funny feeling that something big was about to happen. Playing this tape seemed absolutely crazy, but this whole adventure with Gene Acuff was crazy, so I put the tape in.

Jim Reeves began to sing incredibly sweet songs about love, including an old favorite I hadn’t even thought about since I was 16: “Evening shadows make me blue, when each weary day is through…how I long to be with you…my happiness.”

Tears blurred my vision, and I whispered aloud over my pounding heart, “God, you can’t possibly be speaking to me through a stolen country-and-western tape!” I had the photographs in my hand. I looked intently at Gene’s smiling face and then at his dog. The dog was smiling too! His expression clearly said, He’s pretty wonderful. Gene wrote, “If I could take you out on your birthday, I’d pick you up in my old ’41 Chevy, and we’d go to a 1950s movie and eat popcorn and drink Cokes from the little bottles, and of course we’d eat Milk Duds at the movies.”

“Milk Duds,” I screamed over the music, my heart melting like hot butter. No one knew of my passion for Milk Duds. How could Gene Acuff know? Jim Reeves was singing “Have I Told You Lately That I Love You?” I was humming along and trying not to cry on the photograph—as I drove to my appointment an hour late.

That night Gene phoned, and as we were about to hang up he said for the first time, “I love you, Marion.”

“Thank you, ‘bye,” I answered curtly and hung up. He said the same thing two nights later and I said the same thing. Only this time I hid under my pillow after hanging up and said, “Oh, God, I don’t know how to handle this.”

The third time he told me he loved me, there was a long silence. Then Gene asked, “Are you going to say what I want you to say?” I took a deep breath. I knew I loved him. It was as though I were a child about to jump off a high dive that I’d tried to jump from many times during the summer. “I love you, Professor Acuff. I really do love you.” I had often wondered what his response would be if I ever said those words. His response wasn’t to me at all: “Thank You, Lord. Oh, thank You. Praise You, Lord Jesus.”

July 27, the date of Gene’s planned arrival, finally came. The waiting had been almost unbearable. I had lost 12 pounds and was hardly sleeping. The phone rang at noon, right on schedule, and a voice I knew so well said, “Hello.”

“Where are you?” I asked.

“Stone Mountain Inn.”

“I’ll be there in ten minutes.” Driving to the inn, I could hardly believe it was finally happening. We were actually going to meet. Stone Mountain Inn is a resort just 10 minutes from my house. I pulled in the driveway. Someone honked at me. Looking in the rearview mirror, I recognized Gene. I thought about sitting in the car and letting him come over. But just like in the movies, we moved very fast toward each other. I left my car running in the middle of a driveway, the door open. My sunglasses dropped on the pavement. Just as we embraced, I remembered some strict advice I’d given my girls when they were growing up: “No public display of affection, ever.” But right then in the middle of the parking lot in broad daylight with people all around us, we kissed. I lost count of the times.

I had planned a picnic for just the two of us the next day at my cousin’s 150-year-old renovated farmhouse located on 600 acres in northeast Georgia. It is sort of a getaway for them and furnished in antiques. I thought Gene would feel at home there. There were even cattle and three swings and a tin roof. Sitting on a quaint loveseat in front of a stone fireplace, Gene started to ask if I would marry him in December.

I suddenly experienced a full-fledged ulcer attack. The stress had been unbearable. We were deeply in love and knew God had brought us together. But he had to return to Oklahoma to teach, and I didn’t see how I could just pull up stakes and go with him. My two boys, almost 20, lived with me. I was paranoid about leaving them alone for even a night, certain they would break some of my rules. Also, my two married daughters and two granddaughters lived nearby. Jennifer, the younger daughter, was expecting her first child. My widowed mother lived less than an hour and a half away. All my dearest friends, my world, was in Georgia. I’d always lived there. And I was booked to speak for the next six months.

Gene had to move to the far end of the loveseat. Every time he came close my stomach pains intensified. He held onto my foot and asked me to marry him. I found I could tolerate foot-holding pretty well. I said yes. We talked about maintaining two separate residences and commuting often. Two days later, in exactly two minutes, we selected an engagement ring.

Then it was Sunday. Our week was over. Gene left crying, and I went to my room, crying, and fell across my bed begging God to “do something.” He somehow knocked me out. Totally. Meanwhile Gene, en route back to Oklahoma, phoned, but my boys couldn’t wake me up. When I did wake up four hours later and they told me he’d called, I somehow knew I must clear my calendar. I started phoning people, asking to be relieved of speaking engagements. In 11 years of speaking, I’d never done such a thing, except when my husband, Jerry, had brain surgery.

Later Gene called again from Tennessee and asked, “Could you marry me Wednesday?” I checked my calendar and said yes and wrote “Marry Gene” on August 12.

As it turned out, the date was moved to August 14 at seven in the evening. A small ceremony was planned. Gene never asked me to leave my boys. He was content to have a marriage in which we commuted for a while. But God told me clearly, Quit hovering over your boys. You are trying to be their god. Let Me be God to them.

Gene and I honeymooned at my cousin’s old restored farmhouse. We sort of identified with it. The farmhouse never expected to be whole and alive again with meaning and purpose. Gene and I understood something about restoration. We thought the farmhouse might like us too. Together we were almost 107 years old. The night before we left the farm, God sent the rain we’d so often talked about on the phone and written about. It was our first time to see rain together. As we listened to it on the tin roof, Gene said quietly, “Your formula works, Marion.”

“What formula?”

“The restoration formula from your book, The Nevertheless Principle.”

Oh, yes! Yes, it did work. I could remember the formula almost word for word. When I was slowly watching my husband die from a brain tumor, I carefully examined my restoration formula: “No matter what is taken away from you, if you keep your eyes on Jesus and praise Him, He will restore it to you. You will be joyful to the exact same degree you have hurt. What you have lost will be replaced…joy for mourning…beauty for ashes….God I don’t see how it could possibly work now. I don’t see how You will ever come to me again in any shape or form. But I won’t limit You, so I’m going to remember this moment for the rest of my life. And if and when You restore the years that the locusts have eaten, I will tell people about it and write about it. I am committing to You to remember this agony, and if You can come up with some kind of joy to the equivalent that I hurt, You are truly a God of miracles.

On August 22, 1987, Gene and I headed for the Atlanta airport and a new life together. I’d often said after Jerry was gone that if God ever asked me to simply walk out on everything, I would. But I had assumed that it would be for missions—Africa, not Stillwater, Oklahoma! But God had recently given me an old familiar Scripture with a marvelous life-changing message: “The Lord is my shepherd; I shall not want….He leadeth me beside the Stillwaters. He restoreth my soul….”

A Lesson Learned: We Are Never Alone

I was 26 years old when I got sick. It started with a series of high fevers, some as high as 107 degrees. Then came the exhaustion. I experienced dizzy spells and nausea on a daily basis. The symptoms lasted for months, then years.

I was starting a career in the entertainment business, working at Disney, but I grew too sick to work. Friends, not knowing what was wrong with me, dropped away. I moved out of my apartment and back into the bedroom I grew up in at my parents’ house in Los Angeles.

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Most days I could barely get out of bed. I saw doctor after doctor. I prayed. No one could figure out what was wrong. I couldn’t believe what was happening to me. Slowly but surely I was being cut off from everything I’d built my identity on, everything that meant life to me.

I tried to believe what my mom told me—that despite how things looked, God was at work in my life—but the more my illness isolated me, the harder it was to hold on to.

One February day two years into my ordeal, I had a conversation with God. More of a one-sided confrontation, really.

“You didn’t promise me that bad things wouldn’t happen. You didn’t promise that friends would still be there, or that I would get the answers I was after, but you know what you did promise?” I’d studied the Bible, read Psalm 23 closely. I knew I had a case. “Green pastures. Still waters and green pastures. Where are my green pastures?”

A week later I woke up early one morning and realized I couldn’t stand another day trapped in my bed. Not when everyone else my age was moving on with life. I made an impulsive decision. I always felt best in the morning, so I packed my car and told my mom, “I’m going to drive to Menlo Park today.”

During college I’d spent several months in the Silicon Valley town of Menlo Park, near Stanford University, helping my dad set up a branch of the medical company he runs. I’d attended Menlo Park Presbyterian, a big, active church with a thriving youth program. I loved that church and I loved that time in my life.

I could tell Mom was worried. She’d been taking care of me every step of the way, and she knew me better than anyone. “There’s a big storm coming,” she said. “The roads will be a mess. Are you sure you want to go now?”

I nodded. Even though I was in no shape to drive 400 miles north in the rain, I just had to do something.

“Really, Mom, will this storm be any worse than the one we’ve been going through?” I said, cracking a smile. “If I don’t go now, I might never get on with my life.”

Mom looked at me. “I understand why you need to go,” she said. “But I don’t think you’re stuck. We don’t know God’s plan here. He knows your heart and you just have to trust him.”

It poured the whole drive up. And it was still pouring when I arrived in Menlo Park. I made my way to the church. A pastor remembered me and signed me up to work with the youth program, where I could use my entertainment background to write dramas.

Then I ran into an old friend and she told me about a family who put up church volunteers. I could stay with them temporarily.

She gave me directions, and I set out for their house. It was dark and raining harder than ever. Normally I went to bed in the late afternoon. I hadn’t been up and active this long in months. I tried to ignore the exhaustion creeping up on me.

Soon I left the brightly lit streets of Menlo Park and began winding on dark, lonely country roads. The rain blurred my windshield. I turned the wipers on high and peered out. Where was God? Why had I thought he wanted me to do this?

Even if I found the stamina to work with kids at Menlo Park Pres, how would that help my illness? Every doctor I’d seen had agreed on one thing: I needed rest to fight whatever was attacking my body. I’d just driven 400 miles away from my place of rest.

Trees flashed past my window. I glanced at the directions. They didn’t say a thing about the road winding down into some sort of valley. Even with my high beams on, I could hardly see a thing. It felt like my life, descending further into confusion and darkness with each new turn. What was I doing wrong?

The words from Psalm 23 that I’d asked God about a week earlier were so clear about his promise to those who follow him. Yet I was still waiting for those green pastures.

An intersection. I slowed down. Here was the street. I turned and drove along another road. Finally the address in the directions. I parked. I grabbed my bag and made my way through the rain to the front door. I met the family and was shown to my room.

It was simply furnished with a double bed and a desk. The blinds were closed on a large window above the bed. I sank onto the bed. Cliff, what are you doing here? I asked myself. I crawled under the covers.

Rain lashed the windowpane. I was warm and dry, but I had never felt more alone. I prayed one last desperate prayer for peace before I fell asleep.

The next thing I knew light bathed my face. Groggily I opened my eyes. It was morning. The rain had stopped. Rays of sun slanted through the blinds above the bed. I reached for the cord. The blind inched up.

For a moment all I could do was stare out the window. Rolling hills, stretching as far as I could see. Last night I’d thought the road was descending, but it was actually rising. The house wasn’t in a valley. It was perched atop a hill, overlooking a majestic landscape. The grass, still wet with last night’s rain, glimmered, a brilliant vivid green.

Green pastures. Here, in the darkest valley of my life, God was present, as he had been from the moment I’d gotten sick. At every turn he’d met me—with his presence, with my parents’ support, with my mom’s loving care and unwavering faith. Who do you trust? a voice seemed to say. Who is your God?

I knew my answer. You are. You are the One I trust.

As it turned out I had to keep trusting for a long time. I was in Menlo Park only a few months before my illness forced me to return to my doctors in Los Angeles and to my parents’ house. It was another five years before a specialist at a research hospital in Los Angeles finally figured out what was wrong with me.

My system was infected with a rare drug-resistant bacteria. The high fevers and exhaustion were the effects of my body’s attempt to fight off the bacteria. The specialist had me try a 10-day, water-only fast to starve it out of my system. It worked. I regained a measure of health, but it took several more years to regain my strength.

I’m finally healthy now and am enjoying a successful career as an author. Some days I let my mind go back to my long ordeal. I wouldn’t want to go through it all again, but I wouldn’t change the work God has done in me.

I can still see those green pastures stretching to the horizon, pastures so green and beautiful that I could not fail to see the purpose of my being brought there. For seven years I was sick, but not for one moment was I alone.

Three Tips for Dealing with Chronic Illness

1. Pray and praise.

Prayer is the one resource everyone has when everything else seems gone. Pray in whatever way works for you, with words or silently. And praise. It is the quickest way out of the valley.

2. Don’t blame yourself.

People with chronic illness often feel their condition is their fault. It’s not. Focus your energy on healing, not on laying blame.

3. Trust God’s promises.Nowhere in scripture does God promise a life free of suffering. But the Bible is full of God’s promises to love us and be present when we hurt. Some of my favorites are Psalm 23:2, 1 Peter 5:10 and Psalm 91:11. And Psalm 103. I turned to that scripture so often that it’s the only page that has fallen out of my Bible.

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A Leap of Faith

Today’s guest blogger is Laura Epps.

Out of the blue, in January, my sweet friend Adriana called and invited me to the upcoming Colors of His Love Christian Women’s Conference (founded by La-Tan Murphy) in Raleigh, NC.

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To seal the deal, she even volunteered to pay my conference fees. I knew that God wanted me to go, but I didn’t know why. I was so excited because I’d convinced myself that I was going to receive my commission.

Adriana and I stayed an extra night beyond the conference to ensure a safer drive home in the daytime. At dinner that evening, I simply asked, “How’s business?” Adriana had her own business in Charlotte, NC.

“Actually, business is great. I’ve got a position that you’d be perfect for.” This simple conversation led to her offering me a job with her company, and I adore her. “Move to Charlotte,” she urged. I didn’t quite know what to say, and I was taken aback by the magnitude of her offer.

I had a week to make up my mind, but I’ve never made such a decision by myself before. I’d been somebody’s wife for close to 20 years, and I’m new to this whole single mom thing.

I decided then and there, the most important person I could ask was God. I circled it in prayer. I wrote it in my prayer journal. I prayed about it every morning and every night. What would God have me do? Where would God use my talents?

On a Friday afternoon, I went to run an errand at the local office store after I picked up my youngest from school. There I met a stranger named Phil. We started chatting, and I briefly told him about my big decision.

Phil twisted the end of his curled-up moustache and said, “Move to Charlotte. You’ll think I’m crazy, but I’m going to tell you anyway. Move to Charlotte, and you’ll meet your true husband.”

I must have looked at him in disbelief because he added, “Sometimes… you just have to take a leap of faith.”

On Saturday, I got a call from my friend Glenn, and he asked me about the conference. I told him about the job opportunity in Charlotte. To which, Glenn responded, “I’m going to miss you and all, but move to Charlotte. You’re educated; you’ll die in this little town. Go to Charlotte, and please still talk to me after you meet your new husband and get married.”

I guess I hesitated before responding, and he added “Sometimes… you just have to take a leap of faith.”

The next day, my youngest and I went to church. I was standing on the steps of the church when the youth ministries lady approached, and I told her about the big decision.

Again, I was greeted with the same advice I’d heard before. “There’s nothing in this town in the way of work much. Go to Charlotte. I know it’s scary, but sometimes…. you just have to take a leap of faith.”

Early in the week, I decided I’d call my dad and ask for his input. I’ve learned through the years, that my dad is a smart cookie.

Dad surprised me. His response: “How old are you now? 47? I moved to California and took all of you with me at 50, and it was the best thing I’ve ever done. It might be good for you and the girls too. You and the girls need a fresh start.”

We got to talking again about the Christian Women’s Conference where this all transpired. To which dad replied in his Southern drawl, “well sugar, sometimes…. you just have to take a leap of faith.”

There may be some of you out there wondering, “where’s God in all of this?” Often, God works through people to send us an answer, but it doesn’t replace your digging into the Word and finding those answers for yourself.

If I still had any doubt, that night in my devotional, I came across Hebrews 11:8-9: 

By faith Abraham obeyed when he was called to go out to the place which he would receive as an inheritance. And he went out, not knowing where he was going. By faith he dwelt in the land of promise as in a foreign country, dwelling in tents with Isaac and Jacob, the heirs with him of the same promise.

In this devotional, it was as if God wrote this passage as a love letter to me. Sometimes… you just have to take a leap of faith.

I believe that God honors that first step of ultimate trust in Him. I don’t know where you’re coming from in life, but sometimes, you just have to be obedient to the limited knowledge you do have. As for me, my daughters and I move to Charlotte on June 15.

 

Laurie Epps is a freelance writer, essayist and poet. You can find her work in many independent publications, on and off the web, including Random Thoughts on Being Human. Until June, Laurie calls the upstate of South Carolina home with two of her daughters.

A Job Loss Helped Her Find a New Purpose

 

On a beautiful June day seven years ago, I lost my job. It wasn’t unexpected. The website where I’d worked for 10 years had been sold to a publisher in another state, and my colleagues and I were waiting for the axe to fall. Most of us were laid off that day. When it was my turn, the HR manager and I cried a little together. She understood that my situation was different. I was 63 years old while most of the other staffers were in their 20s and 30s, their careers still ahead of them. Was mine over? Who would hire me? How would I earn a living? And who would I be without a job? For 40 years much of my identity had been wrapped up in my work.

This was in the midst of the economic recession. For the next two years, I job-hunted (no luck), did freelance writing, and volunteered once a week as an after-school tutor. The frantic pace of my life subsided. After many years of commuting, rushing between home and job, between raising kids and pushing ahead professionally, there was quiet. In those silent spaces, I had time to ask myself what I really cared about.

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Intuitively I came to an answer. I cared about young people and was concerned about their future. But that was a pretty broad-brush outline. How could I fill in the details? What contribution could I make to creating a better future for the next generation?

At that point, my husband shared an idea he was mulling. Ken had retired from a varied career in social work, government, real estate, and life and career coaching. We had often discussed that, as bad as the economy was for my job prospects, the effects of the recession were even worse for young people just starting out. Burdened by huge education debt, unable to find even an entry-level job, many were feeling hopeless and stuck. They were in danger of becoming a lost generation. Ken’s brainstorm was to start a free program in which coaches and mentors would volunteer to help unemployed and underemployed young people launch their careers. “Let’s do this together!” he urged.

It felt right. I’d enjoyed mentoring younger people at work, and this fit with my desire to assist the next generation. We started in a small way–putting up a flyer at the local YMCA to find recent college grads who wanted coaching. Through my husband’s coaching contacts, 25 wonderful life and career coaches signed up to volunteer. Grad Life Choices was born!

Five years later, we have 85 certified professional coaches all over the country (including Alaska) whom we match with college grads in their 20s. The young people find us on the internet and through word of mouth.  Coaching is done by phone or Skype, so location doesn’t matter.

So far more than 220 grads have received coaching, and 55% have found career-track jobs within a few months of finishing the program. Ninety percent have rated the coaching positively and say they are closer to their goals.

Over the course of 12 one-hour sessions, the coaches help them figure out what work aligns with their values, skills and passions, and then assist them in making a plan to more forward–including helping them with résumés, networking, interviewing, and job search strategies.  

One of our hopes was to level the playing field for economically deprived young people without contacts or support to access good jobs. So we were surprised and happy when it turned out that many of those reaching out to us were first-generation college grads, some even the first in their family to graduate from high school.

In exchange for the free coaching, we ask all the young participants to “pay it forward” to someone who needs their help. We explain that we won’t know whether they do or not, but the potential is there to create a ripple effect of kindness spreading outward in unforeseen ways. In fact, a number have offered to mentor other grads in the program.

Wendy Schuman is a former editor of Beliefnet.com and Parents Magazine. She is co-founder of Grad Life Choices (www.gradlifechoices.com) and co-author of the forthcoming book, “Millennials in Wonderland.”