Jesus the Caregiver

Many dementia caregivers sacrifice their own interests and time to care for someone else, and are left feeling depleted, burdened, and sometimes overwhelmed. The life, example, and provision of Jesus can be a source of hope and encouragement on this long journey.

1. The greatness of Jesus is shown both in his power in creating the universe (John 1) and in his humble service (John 13). The greatest man who ever lived washed the disciples’ feet (an unpleasant task) and encouraged us to do likewise, promising a blessing for those who humble themselves in service to others. He taught in word and deed that whoever wants to become great must become a servant (Matthew 20:26–28; see also Philippians 2:3–7). Jesus lived and showed us sacrificial love.

2. Although sacrificial love is good, you are not called to be a savior. We cannot do it all alone. We need help from other people, and from the Lord. We all have limits, and we need to trust in him, not ourselves, for strength (Jeremiah 17:5–8).

3. Jesus is the source of our comfort and strength. “Come to me, all who are weary and burdened, and I will give you rest” (Matthew 11:28–30). God’s grace is sufficient for us, and his power is made perfect in weakness (2 Corinthians 12:9–10).

A Reflection for Caregivers

One caregiver once described waking to hear, in that familiar still small voice of the Holy Spirit, “Some minister to thousands, and some minister to one.” She understood in that moment that her quiet, daily service to her husband (who had dementia) mattered just as much as any grander calling.

It echoes the words of Jesus in Matthew 25 — that whatever we do for the least of these, we do for him. What might the Savior of your life say when you stand before him?

When I was forgetful, you remembered for me.
You answered my anxious questions, even though I had asked them many times already.
When I was lost, you helped me find my way.
You helped take care of my money, and gave me my medications when I couldn’t.
When I lost my judgment, you kept me safe.
You even changed my clothes and helped me bathe.

Whatever you have done for the least of these, you have done for me.

Adapted from Chapter 6, “God’s Grace for Caregivers,” in Second Forgetting: Remembering the Power of the Gospel During Alzheimer’s Disease, pp. 102–103 (Zondervan/HarperCollins, 2014).

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God Remembers the Forgetful

Though Alzheimer’s and other dementias may seem to separate us from others, and even from ourselves, nothing is powerful enough to separate us from the love and care of God. Here are some words of encouragement from Scripture.

1. God knows the depths of our hearts and minds; he knows us better than we know ourselves (Psalm 139). God knows what we need before we speak (Psalm 139:4) or before we pray (Matthew 6:8). This can be a beautiful source of comfort for those who care for someone who has difficulty communicating. Even when you can’t seem to reach them, God still can.

2. Not only does God know the depths of our hearts, but the Holy Spirit intercedes with prayer, in groans that we cannot comprehend (Romans 8:26–27). When a person with dementia seems unable to pray, we can take comfort that the Holy Spirit continues to search the depths of their being and prays on their behalf.

3. Though we grow forgetful, God never forgets us (Isaiah 49:15–16). Caregivers and people with dementia can take great comfort in knowing that they are not forgotten by God, no matter how much they may seem to forget him. Nothing, not even Alzheimer’s, can separate us from his love (Romans 8:37–39).

4. Though we may suffer and groan, longing for the redemption and restoration of our bodies and brains, we wait for what God is preparing for us (2 Corinthians 5:1–5). Alzheimer’s and dementia do not get the last word. God is making all things new (Revelation 21:1–5).

Adapted from Chapter 4, “The Gospel for Those with Alzheimer’s,” in Second Forgetting: Remembering the Power of the Gospel During Alzheimer’s Disease (Zondervan/HarperCollins, 2014).

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This story was originally published in 2023 in Like The Wind, an independent running magazine. It is reprinted here with permission.

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Early that morning Christine had watched Trevor struggle to tie his laces while she donned a pair of running shoes she had previously used only for gardening. As they ran together, Christine’s knee ached with each step, a discomfort broken up only by occasional stabs of sharp pain. Nearly 30 years ago, Christine’s knee had been shattered in a car accident. At the time, her doctors told her that she’d likely be able to walk but she would never be able to run. For decades, she took their advice and held off to avoid the pain. About 10 years ago, Alzheimer’s disease had started to spread in Trevor’s brain. His doctors had given him a list of things he would slowly lose the ability to do. Running was so improbable that the doctor likely never considered including it on the list.

— — —

Trevor responded to his initial diagnosis by completing a 100-mile bicycle race with his youngest son. But a year later, Trevor’s dementia had progressed: a century ride with just one guide was too difficult. With the support of both sons, one riding on each side, he celebrated his second century ride. When he got to a point that cycling alone was no longer safe, Christine rode with him on her own bike. Slowly he lost more coordination and he was unsafe on a solo bike at all. They bought him a tandem bike and he competed in local time trials with his oldest son.

Photo: Trevor riding 100 miles with sons at his sides

Christine chose to retire from her academic position at the university to care for Trevor. He needed someone with him to make sure he would eat and drink and wouldn’t do anything unsafe. Some caregivers worry their loved one will leave the cooker on. But Trevor was different: Christine worried he grab his bike and head off and get lost without his smartphone or GPS. As he continued to change, she felt an overwhelming sense of loss. First, she lost her career; now she was losing her best friend.

Trevor had a rare form of Alzheimer’s disease. He would lose his vision and his spatial awareness, but he never forgot who he was or what was happening to him. Christine and Trevor aimed to have as many adventures as possible before the dementia advanced too far.

Christine decided she needed a challenge outside of the home. She had always been a self-professed couch potato and decided to join a “Couch to 5km” group. In the first session, when they moved from a two-minute walk interval to a one-minute jog, she realized she didn’t know how to run. She learned to run simply by doing what other people were doing. She wasn’t that good at it, but she didn’t care. It felt awkward. It hurt. But she kept going. Over the next few months, she tried to run regularly. Initially she could leave Trevor for those few minutes, but eventually she could only run when there was a carer in the house.

Christine connected with her local parkrun, at Rutland Water in Leicestershire. Each Saturday she looked forward to the 5km run and marveled at how something she was told she could never do had brought her a sense of community and belonging. Accomplishing things people told her she couldn’t would become her specialty.

One Saturday, as she was lacing up her running shoes, she noticed Trevor watching her. She looked up at him, questioning him without a word.

“Can I come?” he asked.

“I’m going to parkrun,” she answered.

“Right.” He paused for a moment. “I want to come along.”

She ran to get a break — not so much from him, but from all of it. At parkrun she was Christine the runner, rather than Christine the caregiver for a husband who was much too young to have dementia. She wasn’t sure she wanted to bring these identities together. She loved him, for better or worse, as they had promised. But she never imagined she’d spend her days with him at her heels following her from room to room all day, only to find herself worrying about him when he wasn’t where she could see him. Was she now going to have to keep track of him on the run? Trevor had never been a runner either. Would he even be able to keep up?

Christine could see the hope and anticipation in his eyes.

“All right, then. Get your shoes. And hurry up.”

The run director set them off and the parkrunners surged with a collective cheer. As Christine plodded along, feeling the familiar pain in her knee with each strike of her foot, she kept an eye on Trevor, unsure of whether it would be too much for him. Too much of a crowd. Too much stimulation. Too much for his challenged brain.

Trevor trotted along next to her. Soon he was chatting and laughing. He greeted runners who passed by and pointed out the changing colors of the trees that lined the course. After the first kilometer, Christine noticed Trevor starting to inch ahead and then holding back again so that she could catch up. “Heck,” she thought. “I’m holding him back.” Christine had finished several parkruns by this point and had been improving. Now she was at his heels and doing her best to stay with him.

Christine had never been particularly competitive about her parkrun times, but she kept track week on week so that she could gauge her progress. When her legs started to fail, she’d imagine the doctors and nurses who had told her she’d never run. She’d picture them watching and having to admit they’d been wrong about her. They would see how she just wouldn’t quit. Then when she hit the last 400 meters, she’d give it all she had left until the finish funnel. She was her own competition… at least until Trevor joined in.

At three kilometers, Trevor pulled ahead of her — and this time he didn’t let up.

“Trevor?” she called out. “What are you doing?”

He didn’t turn around, just giving a little wave before pressing on. He rounded a corner and was gone. When Christine finished, she found him drinking water and chatting with other parkrunners. When she checked the results, she found he had beaten her by two minutes. Christine felt a mixture of shock and a little frustration, but after reflecting on what he had done, a sense of pride for her husband overwhelmed her — something she hadn’t felt in a very long time.

Photo: Trevor not looking back

During the coming weeks, Trevor was consumed with hitting new time goals and Christine supported him each step of the way. His forgetfulness made it hard for him to follow a pacing plan during the runs, and so he simply gave it all he had until he crossed the finish line. Each Saturday he seemed to shave a few more seconds off his personal best. The other parkrunners joined in the celebration, slapping him on the back and giving a few hearty cheers. Running and the parkrun community helped Christine and Trevor forget about Alzheimer’s disease for one glorious hour each Saturday.

Trevor and Christine kept moving over the next two years. Nonetheless, some people questioned whether Christine was doing too much and whether Trevor was safe out there. One fellow parkrunner, unable to keep up with Trevor, questioned whether Trevor actually had Alzheimer’s disease. He had read about what Alzheimer’s did to the brain and had seen what it had done to his own mother. He reasoned that if Trevor was able to run 5km parkruns every week, hit personal bests, and notch century rides on the bicycle… well, then — he couldn’t possibly have Alzheimer’s disease.

But Trevor definitely had Alzheimer’s — it was confirmed by medical specialists. However, they also seemed befuddled by what was happening. When Christine explained all about their parkrunning, one of their doctors responded: “I’ve seen your brain scans, Trevor. You shouldn’t be able to do this!”

But one Saturday morning, Christine got to the finish funnel and Trevor was nowhere to be found. He had been so confused that he had wandered off. She found him in the car park. She explained to the organizers that she and Trevor wouldn’t be able to do come along any more because of the danger of him wandering off. No problem, the event team volunteers insisted. They arranged for a volunteer to collect Trevor at the finish and wait for Christine.

A few months later, it was obvious that Trevor was experiencing greater difficulty in crowded places: he was confused and becoming nervous. The doctor’s words ran around a loop in Christine’s mind. A check-up with the ophthalmologist revealed that Trevor was suffering significant loss of vision. It had crept up on them slowly, but Trevor was now officially blind.

They had to find a way to keep going. parkrun was too big a piece of their lives. At parkrun, they were just like everyone else. They belonged.

The next Saturday, Christine tied a nylon cord to her left wrist and tightened it before doing the same with Trevor’s right wrist. Earlier that day he made sarcastic jokes about his “leash”, but now he was back at parkrun, he didn’t seem to mind. When the run director called the start, Christine and Trevor began running. They bumped each other a few times during the first kilometer, but by the second they settled into a rhythm. Christine found herself running faster than usual, hoping not to hold Trevor back. Trevor had been finishing several minutes ahead of her before the break (sometimes the gap was even larger). But that day they finished together. Trevor was glad just to be running. He didn’t care about his time.

Photo: When Trevor’s vision declined, Christine ran by his side as his guide

During the following year, Trevor and Christine seemed to be climbing down a stairway of losses. Eventually the day they feared finally came. Trevor couldn’t run at all. With Christine by his side, he had overcome cognitive and visual losses, but now he couldn’t coordinate the movement to run. Instead, they walked their usual parkrun. Together. Linked.

Eventually though, even the plodding walk to which they grew accustomed was beyond his capability. He could move around the house, but finishing five kilometers seemed like a distant memory. Friends assured Christine there was no shame in giving it up. Maybe she could keep running, they’d say, but it was time to go on without him.

— — —

By the time the sun rose Christine was already up and preparing breakfast for Trevor. After breakfast she got out his favorite running outfit. When she told him what he was going to be wearing, she could see a spark of recognition in his eyes and the nagging doubts she’d felt about her plan disappeared. She gently maneuvered his arms and body as she helped him to get dressed.

Christine turned the car into Rutland Water and spotted the parkrunners warming up near the waterfront. A tear escaped from behind her eye as she turned to Trevor and did her best to smile.

“Ready to get out there?” she asked.

He nodded and smiled back. She reached over and put her hand on his.

“All right then, let’s do it.”

She felt the familiar stiffness in her knee as she got out of the car and made her way to the boot. She pulled out the wheelchair and unfolded it by the passenger door where Trevor waited. She was exhausted but found the strength to help him get settled into the chair. Christine wheeled Trevor to the start line, where they waited with anticipation. Christine smiled and nodded at the people to her right and left. Friends greeted them with knowing smiles, recognizing the determination and dedication that had brought them to parkrun several years ago and would surely bring them to the finish once again.

Photo: Trevor and Christine found ways to run even when he couldn’t

The run director called “go.” Within the first minute Christine found it hard to keep up. She was pushing a full-grown man in a wheelchair and managing her longstanding knee pain, all while fighting the exhaustion of taking care of his basic daily needs. All of them.

She kept moving. She kept Trevor moving. Together they kept going until they crossed the finish line. Old friends and acquaintances cheered for them and stuck around afterwards, sharing hugs and handshakes. Even the man who had questioned Trevor’s diagnosis was excited to see them.

They were back and the outing had been a success for Christine and Trevor. But the effort had taken its toll on Christine’s knee. It wouldn’t take too many more runs like that. Christine had to admit that their days of racing were over. But Christine wouldn’t quit. Not for herself. Not for Trevor.

She found the run director and had a brief chat, which ended with a handshake that turned into a hug. Trevor and Christine would return next week, not as runners, but as volunteers. Their job was to tail walk the event, a role that required them to go slow, follow the last runners and make sure no one was left behind or alone on the course.

Photo: Trevor and Christine volunteering when their running days were over

Trevor died a year ago, after living nearly 18 years with Alzheimer’s disease. Less than a month later Christine’s doctor told her to stop running. Her knee had deteriorated so badly that she absolutely must never run again. This time Christine listened.

But she also listened to something deep inside that said that she once again needed to find a way to keep going, for herself and for Trevor. If you happen upon a parkrun in the heart of England on a Saturday morning, you just might find Christine walking, as fast as her damaged knee will take her.

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Author’s note: this is the third part in the story. You can read part 1 here and part 2 here.

“Well, then what’s Alzheimer’s?”

“Alzheimer’s can be understood both in terms of specific changes in the brain and their impact on memory and thinking. Alzheimer’s reflects two specific types of changes in the brain. We refer to them as plaques and tangles. Most scientists believe the plaques develop first and are followed by tangles.

“So, you’re telling me I have brain damage?!” Gary asked, his voice rising a bit.

“Well, why don’t you order a brain scan to see if he has these plaques and tangles?” Trish asked, almost demanding. “Are we just supposed to sit with the uncertainty of not really knowing?”

“The doctor most likely will order an MRI or CT, but the problem is that plaques and tangles are too small to be seen on traditional brain scans.”

“Then why do them?” Gary demanded.

“Another good question. These scans are to rule out other causes of your memory problems.”

“Such as?” Trish was recovering and seemed more focused, even challenging now. Gary seemed comforted by this. At least she wasn’t crying anymore. He couldn’t handle that right now.

“Brain tumors, hydrocephalus, strokes. Things like that.”

“Geez. Seems like whatever’s happening isn’t good.”

“Well, probably not, but it makes sense to check it out.”

“Why? I mean, you just said there’s no way to stop this, and if it isn’t Alzheimer’s then it’s probably something else like a tumor.”

“Well, sometimes there are other causes that might be reversible.”

“Doctor, earlier you were talking about the medication. Doesn’t that stop the plaques and tangles? It does, right?”

“Well, that’s another bit of tough news. The short answer is, no. They don’t.”

“How can that be?”

“There are several medications available for treatment of Alzheimer’s disease, but most of them work the same. They are all designed to treat the symptoms of Alzheimer’s – forgetfulness, confusion – but not the underlying pathology – the plaques and tangles. Most are based on the idea that if we could boost levels of certain neurochemical that are linked to memory, we could improve memory functioning. While they do help somewhat, they don’t restore your memory to what it once was and they don’t even stop things where they are.”

She paused a moment to gauge their reactions.

“The problem is that the plaques and tangles continue to spread.”

“Isn’t there a medication to stop them from spreading? I mean, why don’t scientists work on that?”

“Well they are and they have developed medications like this. In the last ten years there have been a handful medications developed to stop the spread of plaques or even to remove them. The really confusing thing is that although they are effective in slowing the pathology, that is, the underlying changes in the brain, people who take them haven’t shown any clinical improvement. They aren’t getting better and the declines are no different from what people taking a placebo show. It’s really very frustrating and confusing.”

Trish and Gary looked defeated. How could it be that in the 21st century we can have the technology for self-driving cars, for nanobots, and such amazing technology, but no way to slow down something like Alzheimer’s disease?

“Well, it isn’t for lack of trying. Every year billions of dollars are spent on this problem. We’re making progress, but so far, nothing has been good enough to get to FDA approval. In fact, one well-known dementia specialists has tracked this and estimated that 99% of drugs developed for Alzheimer’s disease fail to make it to FDA approval.”

“So where does that leave us?” Trish asked. “It seems pretty hopeless. Is there anything we can do?”

“Well, yes, actually there is, but it also depends on what you mean.”

“I’m not sure I understand. Isn’t it obvious?” Gary said.

“Well, sure, but let me explain. There isn’t a lot we can do with traditional medical treatment. We have a few medications you can take, and this may help some, as we’ve discussed. But, we can also take a broader view of things and consider what makes things better and what makes things worse. You see, I can’t reverse or stop this, but there are things that you can do that affect your functioning and your quality of life. To be clear, this is an adjustment in most people’s ways of thinking about treatment. In our day, we expect that there is a medication for every medical condition or disease under the sun. Sometimes we expect the pill, the radiation, or whatever medical treatment will take it away and we can move on with our lives. What I’d like you to think about is whether you can move on with your life, even if we can’t take the Alzheimer’s disease away.”

There was still a lot of confusion swirling around the exam room.

“Consider this. If you go home today and decide that because you have Alzheimer’s disease, you need to stop doing things you love, seeing people you love, and generally need to just hole away, what do you think will happen?”

“Um, I don’t know, but it probably wouldn’t be good.” Gary replied.

“That’s exactly right. This would certainly be much worse for you than if you stay engaged with people and activities that you care about.”

“I guess I’d probably cope with things a little better too. I’ve always done better when I’m up and around. I’ve never liked just sitting there,” Gary admitted.

“You’re also happier when you’ve been with your friends.”

Gary nodded and seemed to recognize that this was true.

“I get all that, but are you also saying that this might help my brain stay healthy too?”

“The research suggests this might be the case to some extent, but we are still learning more every year. There has been quite a bit of research to suggest that staying active physically, staying active socially, and continuing to be mentally active as well may reduce risk for cognitive decline over time, and it seems logical that this could have positive benefits even if you already have something like Alzheimer’s disease. Either way, it certainly can’t hurt!”

“I guess that’s true. Even if it doesn’t do much for his brain, it just seems like healthy living, right?” Trish had always been a health nut.

“The other thing we’re going to do is continue to carefully monitor and treat your other medical conditions. There is good reason to think from medical research that the sicker you are, the steeper the rate of decline.”

“Of particular concern is your blood pressure, cholesterol, and overall heart health. There is a pretty consistent link between heart health and brain health, so whatever we can do to keep your heart as healthy as possible should also have positive benefits for your brain. At worst, not managing cardiovascular risk could have really devastating effects on your brain, your memory, and you ability to function. I don’t mean to scare you, but it is really important. It might be the most important thing we can do, but we’ll work together on it.”

Gary looked uncomfortable. The doctor noticed.

“I know this is a lot to take in. I’m just doing my best to give you the big picture, but I know it will take some time.”

She looked at Trish, “It is going to be really important for you to keep track of these details, because when a person experiences memory decline, there is a good chance they won’t recall the details of what we’re talking about today.”

She glanced at Gary, who was again looking a little defeated.

“I’m sorry to talk that way, but I want you to have the information, and although you might remember it later, most people with memory changes don’t and it all gets very confusing.”

“Yeah, it’s ok. It’s just a lot.”

They all sat silent for a moment before the doctor continued.

“Because Alzheimer’s and other dementias are so challenging, it might not surprise you that depression is pretty common. So, we will keep an eye out for this as well.”

“I bet. I can’t remember anything, my wife thinks I can’t take of simple things anymore, and the doctor says none of it will get better.” Gary shook his head. “Seems like everyone with Alzheimer’s would be depressed.”

“Sure, but here’s the thing. When people with Alzheimer’s get depressed they have worse outcomes.”

“Worse outcomes? Such as?” He waited with a hint of irritation.

“Nursing home placement, more disability, aggression, and they are harder to keep at home.” The doctor kept pausing.

“Sounds like something we’d like to keep an eye on, doctor.” Trish chimed in.

“We can try prescribing something if the need arises, or psychotherapy is an option, at least for a while.”

Gary wasn’t quite sure what that was supposed to mean. At least for a while?

“The good news now is that Gary isn’t showing any signs of depression. So, the best way to hold that off is by staying active as much as you’re able.”

“Sure, I hate sitting still. I ride the bike at the gym and I like to talk and lift a little.”

“That’s great, but I also want you to stay active mentally and socially. All of these make a difference.”

Gary was starting to wonder if all of this would be worth it. In the end, he decided he’d have to just try and find out.

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Author’s note: This is the second part in the story. You can read the first part here.

A few weeks later Gary was at the doctor, but only at Trish’s insistence. He kept saying he wasn’t sick, but Trish suspected that deep down he knew something wasn’t right, but was too afraid to admit it.

Before the doctor came in, the nurse took his blood pressure, asked a few questions about how he’d been feeling. Any complaints? No. Any changes since your last visit? No. Any specific concerns today? He glanced at Trish, and then quickly said no again.

Trish tried to interrupt, but the nurse kept moving through his tasks.

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“I’m going to say three words, and I want you to repeat them back to me. OK?”

“Yeah, ok.” Gary didn’t seem interested.

“House. Train. Banana.” The nurse nodded encouraging Gary to repeat them.

“House, train, banana,” he said quickly.

“OK, good.”

Trish caught Gary rolling his eyes.

“Now I’d like you to draw a clock. Put in all the numbers. Then set the hands of the clock to 3:45.”

Gary sighed heavily.

“AM or PM?” he asked, a bit of sarcasm creeping in.

The nurse handed Gary a blank piece of paper. Trish and the nurse watched as Gary drew a tiny circle, maybe just a inch and a half in diameter. The nurse had never said how big to make it. But, when Gary went to write the numbers in, he didn’t have enough room to fit them all.

“Is it ok to put them outside?”

“Put what outside?” the nurse asked.

“The numbers. Can they go outside the circle?”

“You can draw whatever you like. Just do your best and make it look like a clock face.”

Gary shrugged and then handed him the paper.

“This looks like a clock face to me.” And then eyed the nurse to gauge his response. Gary could tell that he didn’t agree.

“OK, let me try again. You never said the numbers had to be inside the circle. I can do it.”

“No, that’s ok. Let’s move on. Do you remember those three words I read to you?”

Gary did not.

A few minutes later the doctor came in. She made small talk at first, but Trish was still a bit shaken by Gary’s clock drawing and how he had forgotten the three words the nurse had told him. She was worried the doctor would ask Gary if he had problems with memory, and that Gary would just say he was fine, as usual.

“So, Gary, it looks like you had some trouble with our screening instrument.” She paused here, waiting to see how he would respond.

Trish expected an argument, but Gary stayed quiet and just waited. Maybe he did know after all.

“You see, sometimes people don’t do well on these because they’re just having a bad day, you know?”

Gary looked relieved and nodded knowingly.

“But, other times, there’s something else going on. Particularly for people your age.”

Gary looked a little offended by this.

“I’d like you to have some more testing done.”

“What kinda testing?”

“Some people feel like the testing is like being back in school. But, we are basically taking the brain for a test drive. We’ll check the brakes, the steering, acceleration, and so on. We want to see where it’s stronger and where it is weaker.”

That all made sense to him, being a car guy and all. But, it was still kind of frightening nonetheless. What if his accelerator didn’t work well, or even worse, what if his brakes failed? Where would that leave him?

“Can you tell me today’s date?”

“I’m going to read a list of numbers and when I’m through, I’d like you to repeat them back to me in order.”

“I’m going to show you some pictures and I’d like you to tell me what the objects in these pictures are called.”

“I’m going to read to you a short story. When I’m through, I’d like you to repeat back as much of the story as you can.”

It went on and on for what seemed like two or three hours.

“Well?” Trish asked when he got in the car.

“Well what?”

Trish groaned a little.

“Well how did it go? How do you think it went?” she asked.

“I don’t know. I couldn’t really tell and she wasn’t giving any hints. To be honest, it didn’t seem great.”

“How so?”

He shrugged and tried to move on.

Two weeks after Gary’s neuropsychological assessment, he and Trish were sitting in the psychologist’s office waiting for her to emerge. Gary scanned the room looking for hints of who this psychologist was, and Trish just scrolled on her phone. There was nothing for them to talk about together, at least not until they’d talked with Dr. Ricker.

“I’m sorry to keep you waiting. I had a patient in crisis, but we’re good now.”

Gary silently hoped he wouldn’t be the next patient in crisis, but he didn’t let on. He just smiled and nodded at the doctor.

“I have the results from your testing.”

She pulled some papers from a large manila envelope and spread them across her desk. For the next five minutes she explained that the tests showed that Gary had both clear strengths and weaknesses. Gary’s results demonstrated strengths in both simple and complex attention, but they also showed weaknesses in long term recall, or the ability to remember and hold onto information over time. It stung to hear this, but it also made sense. He did feel like he’d been missing things recently, but he also hadn’t wanted to make a big deal about it.

“Tell me, Trish. Does Gary need more help with things he used to do on his own?”

Trish looked at Gary and hesitated. She looked so sad. Then she looked back at the psychologist and nodded ever so slightly.

“Can you give me an example? Like handling bills or managing medication?”

Trish looked at Gary apologetically. “Gary has always paid the bills, taken care of all the financial stuff.”

Again, she glanced at Gary, who just waited.

“Well, a few months ago he started bouncing checks and the city shut our water off.”

Gary looked stunned.

“That’s not true! I always keep up the bills.”

“You used to, dear, but not lately.”

An argument was brewing, but the psychologist was already moving on.

“How about driving? Have you noticed any changes?”

Now Trish was talking about close calls, dings on the side panel of his truck, and then it came. She brought up the oil again.

The psychologist began tying all of this information together, implying that the testing results were linked to Gary’s trouble with the oil and the bills.

Trish was following along and, in fact, had suspected this for a while. But Gary was still trying to keep up. He was still kind of stuck on the oil. He swore he changed it and that there was a leak. Why wouldn’t they believe him? Now that he failed this memory test, no one would believe him at all.

The psychologist explained that Gary was in the early stages of dementia and wanted to encourage his physician to prescribe medication for his memory problems.

“How long?” Gary interrupted.

“I’m sorry, I don’t understand. How long what?” the psychologist replied. It wasn’t clear if he meant to ask how long he’d live, but she didn’t want to assume.

“How long til it gets better? If I take the pills.” Gary spoke without a lot of expression.

“That’s a tough question to answer, Gary. You see, it doesn’t work like that.”

“You mean I’m not going to get better?”

“The type of dementia you have is progressive, which means the longer you live with it, the worse it gets. The medication I was talking about is aimed at slowing that down, but it doesn’t stop it or reverse the changes you’ve experienced.”

Trish started to tear up and dug into her purse and drew out some tissues. Gary watched as she began to cry, hiding her face in her hands.

“OK, I’ll take it. The pills. I’ll do whatever it takes to beat this thing.”

“Again, it doesn’t work like that,” the psychologist continued. “Let me explain.”

“The types of changes you are experiencing fit with the pattern we call dementia, some call it major neurocognitive disorder.”

Gary winced a bit. He thought “dementia” sounded bad, but this other term seemed even worse. The psychologist continued.

“This simply refers to changes in memory and cognition that are a decline from prior levels of functioning, that is, you haven’t always had trouble with memory and thinking. And, this is important, the changes are severe enough to interfere with your daily functioning. Things like paying the bills or remembering to take medication, but those are just examples.”

Gary seemed to want to argue again, but he stopped and kept listening.

“Dementia can be caused by a variety of different changes in the brain. The most common cause of dementia is Alzheimer’s disease. In fact, some research suggests that 60-80% of dementia is caused by Alzheimer’s disease.”

“I always thought they were the same thing.” Trish broke in, still looking teary.

“That’s pretty common, actually, particularly because they overlap so much. But, dementia is a broad category and there are many types of dementia. Alzheimer’s is just one type. There are other dementias that are not caused by Alzheimer’s disease.”

“Well, then what’s Alzheimer’s?”

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Author’s note: As I mentioned previously, this is a story I wrote to teach students about early Alzheimer’s disease. It was cut from my forthcoming textbook. Sharing it in hopes it might help those who are wondering and worrying.

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To understand how they got here you’d have to go back a few years. Gary had retired after a few decades at the car dealership. He’d been in sales, and had been very successful. He was always a people person. Could talk to anyone and never seemed to forget a name. He’d hear it once and held onto it, so that when a customer came back a year or two later after buying a car, he’d see them across the lot and call out to them by name. The names stuck with him and that really stuck with people. They felt cared for and appreciated, so they’d keep coming back. He loved the work but he always longed for retirement when they could get out and see the country. It wasn’t too far from Missouri to the mountains and they’d bought a pop-up trailer to haul behind his old but exceptionally well maintained Ford truck.

He dragged Trish on these trips even though she’d prefer to be home and near the grandkids. But, she also knew he’d dreamed of these trips with her for such a long time that she relented and they planned out a trip to Rocky Mountain National Park. He insisted on driving and wanted her to be able to relax and enjoy the scenery. It seemed obvious that he would do whatever it took to make the trip something that she’d want to do again. He was always pretty thoughtful, even if this time it was a little self-serving. She was ok with that. And, in all honesty, they both had a good time, a great time, actually.

On their return trip home, the truck began to run a little rough. She noticed it first and pointed it out to him, but he blew it off. He was a car guy after all. An hour later it hadn’t gotten better. She couldn’t be sure, but it actually seemed to be getting worse. But, he seemed unconcerned and tried to get her to just enjoy the journey. About 30 miles outside of town, they both were startled by a loud knocking noise coming from the engine. There was no denying something was wrong now.

Gary pulled over and popped the hood and began to evaluate what might be wrong.

“You check the oil?” Trish asked.

“Don’t be silly” he replied.

She knew he cared for this old beast like it was one of his children, but she also knew how to spot common engine problems as well as he did.

“You sure?” she risked trying again.

“Fine. If it will make you feel better.” He pulled an old rag out from underneath the drivers seat. He carefully pulled out the dipstick wiped it clean and reinserted it. He pulled it out carefully and held it up where they could both see…that there was no oil!

“Huh. Must be leaking.”

“Well, everyone makes mistakes,” he’d said, and although everyone in the family knew this to be generally true, it wasn’t true of him, at least not when it came to his truck. He’d neglected to have the oil changed before the trip and when they checked the records, they were shocked to learn it had been nearly twenty thousand miles since he last did it. It just struck them all as odd, but the meaning and significance of this oversight wasn’t apparent until years later.

This was the first sign that something was wrong, but they had no way of predicting that it was a harbinger of things to come. Over the next year, Gary seemed to slow down a bit, but everyone seemed to accept that this was to be expected for someone heading into their 8th decade of life. But, he also started repeating himself, asking the same questions. It seemed like he just wasn’t tracking or listening.

“What’s on the docket for today?” he’d ask Trish while eating his dry toast with black coffee.

“Oh, I don’t know. Maybe we can go for a walk before I head down to school. I’ve got some errands to run after tutoring the kids. We are meeting the Lancasters for dinner at 5:30.”

“Sounds great,” he’d say, not seeming to really engage.

“OK, well, let’s head out in a few minutes. I’d like to get our walk in before traffic picks up. I can’t be late today.”

He picked up the newspaper, holding onto a tradition he’d had for decades. Maybe the only one on the block who still had the newspaper delivered. Trish continued to get ready, moving quickly around the house. The sun was starting to come up, and light broke in through the window.

Trish came into the kitchen again.

“You ready for that walk?” she asked, obviously ready to go.

“Huh? Oh, you want to go for a walk this morning?” he replied.

“Well, yeah, I just told you that we should go for a walk before I head down to the school.” She was trying her best to be patient. “You don’t even have shoes on yet.”

“Well, you gotta give me a minute to get on my shoes.”

“I can’t! I already told you I can’t be late today. That’s why I asked you to get ready.” She was sounding more exasperated.

“No, you didn’t!” Now he was getting defensive. “I think I’d remember something like that.” And he huffed out of the room to look for his shoes.

“I’m not too sure about that” she muttered to herself.

Trish took a deep breath and told herself they could still go for a walk, they’d just have to cut it short. No big deal. Just breathe.

“Someone took my shoes!” She could sense the frustration in his voice. He’d seemed to grow more frustrated by the day. Little things set him off and she wondered if he was just stressed. But, it was also getting old.

“What do you mean? No one took your shoes, dear. That’s ridiculous.” Her frustration was rising now too.

“Well then why aren’t they here?” He stood gesturing at the hall closet.

She knew he must’ve put his shoes somewhere else after their last walk and could sense how this exchange was going to end.

Eventually she went for a walk by herself.

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I’ve been writing a textbook for longer than I care to admit. I mean that quite literally - I’m not going to admit how long this has taken me. Writing a textbook has been an exercise in endurance, sticking with it when things got tough and I wanted to quit. My editors and co-authors kept me going and now that the writing is done, I am very grateful.

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The book is meant for upper level undergraduate courses on psychological aspects of aging. In writing this book, I wanted to integrate the science of aging with stories of aging. Science generates and describes general principles, producing reliable and replicable findings that inform our understanding of how we age. Stories provide depth and richness of experience in the unique lives of older people. I believe we understand more completely when we draw on both. I wrote about this in my first book - Whole Person Dementia Assessment - earlier in my career when person-centered care was still finding a foothold in the world of dementia. My goal at the time was to integrate person-centered principles into dementia assessment, so that we could understand not just the diagnosis, but also the person living with it. This led to an ongoing theme in my work - not forgetting the person who has grown forgetful.

If you’ve never written a book, you might be surprised to learn that editing involves cutting large sections of material. The words and ideas might be perfectly fine, but they just don’t fit the goals or voice of the overall project. Content is good, vibes are off.

I’m about to share something that was left on the cutting room floor.

I wrote an experimental chapter in which I attempted to teach my readers about early Alzheimer’s using only story - early symptoms, how people (and their families) recognize it, and what an evaluation looks like. This experimental approach didn’t fit with the overall textbook, so we agreed to cut it. But, I hate to waste it, so I’m going to share it over the next several days.

The first portion will post tomorrow (Thursday, July 30). You’ll have to let me know what you think. As always, I hope it’s helpful.

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Memory starts to change after people move into their 50s and continues into late life. I tend to think we can split the memory lifespan into two halves: the first half in which we rarely need to think about memory, and the second half in which memory becomes a common topic of conversation and a source of frustration and sometimes disorientation. In this next series of articles, I’ll be focusing on memory issues in midlife and late life: how memory breaks down, common causes of memory problems, and makes it worse (a slightly different question), and how to remember better.

Today I want to break down all the ways in which memory can break down.

Your spouse asks you to do them a favor later today. Maybe they want you to pick up some cauliflower on your way home from work. What takes place between the request and your action of returning home with the worst of all vegetables?

If you don’t show up with that nasty cauliflower, what happened? Here are several possibilities that could explain this, other than you simply chose not to (which seems reasonable).

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Not exactly memory but still important for remembering

You didn’t hear what was spoken - If you didn’t hear it, you can’t remember it. Poor hearing makes it hard to remember because the auditory data were not adequately detected by your hearing apparatus, which limits memory at its basic level. If the data doesn’t get in, it can’t be remembered.

You didn’t understand the words that were spoken - If the ear receives and processes the data, the brain also needs to perceive this as intelligible speech. For most people hearing and speech perception are seamless. But some people have damage to parts of the brain responsible for speech perception and cannot accurately understand. This will cause a breakdown between the request and the action and will look like forgetting. This is rare, but can be considered in cases of repeated forgetting.

You weren’t paying attention - Even when hearing and perception were sufficient, you still need to pay attention. If you were distracted thinking about something or doing something else, you might not adequately attend to what your spouse was saying, even though the ears may have heard and the brain adequately perceived. If you don’t attend to the words and the various nonverbals that go with them, you have very little chance of retaining them and acting on them later. Attention, like hearing and perception, is a prerequisite for remembering.

Up to this point, this all seems very obvious and maybe like lame excuses - I wasn’t listening! I just wasn’t paying attention. Maybe that’s because these aren’t really memory - but they are important prerequisites for remembering. So, let’s get into memory and where it breaks down.

Breakdowns in the memory systems

You didn’t encode the information - The information you heard, perceived, and paid attention to still needs to be processed as a storable memory. Memory experts refer to this as encoding and it has a strong impact on how well you remember. Encoding can be shallow - simply repeating back the request for cauliflower or even writing it down. Encoding can be deep - connecting the information to other personally relevant information (thinking about other things you dislike that you can mentally connect to cauliflower) or generating a plan (e.g., I’ll stop by the store after the gym; the gym is a healthy thing, cauliflower is healthy too). Deeper encoding enhances the probability of remembering. When we turn to how to remember better in later posts, this is a key area of focus and where we can dramatically improve.

You didn’t store the memory - If you heard, perceived, attended, and encoded, there is a very good chance you’ll store the memory, unless you have a condition that interferes with consolidation and storage of the memory. When a person has a memory storage problem, it’s like the brain is a file cabinet and you didn’t put the file into one of the drawers. When you go back to the file cabinet, the file isn’t there. It’s gone. A memory that is not stored is also gone.

You can’t retrieve the memory - Retrieval problems look slightly different than storage problems. When a person has storage problems, the information just isn’t there. When a person has a retrieval problem, the information is there somewhere, they just have trouble finding it. That might sound similar, but the distinction is very important for daily life, especially when a person struggles with remembering.

A person who has a storage problem will often have no memory of the request to stop at the store to pick up cauliflower. It will be like it never happened. A reminder will not help the person remember. Cues will not help the person remember. The file isn’t there.

A person with a retrieval problem will benefit greatly from reminders and cues because the memory is there. The person just need help locating it and retrieving it. A person with a retrieval problem is much more likely to think, “oh shoot, that’s right, the cauliflower.”

Retrieval problems are frustrating. Storage problems are disorienting and sometimes terrifying.

When people in their 50s complain about their memory, it is often a retrieval problem. Blanking on a person’s name, forgetting why you walked into the basement, and sometimes not being able to come up with the right word even though it’s on the tip of your tongue - all of these are typically retrieval problems. When there are reminders or cues, the information comes back quickly.

On the other hand, having little to no memory of something that happened or was said does not necessarily point to a storage problem. Not hearing/seeing, not paying attention, or not encoding can all lead to poor storage or no storage at all. This can be difficult to tease apart on your own. These things are best left to a neuropsychological evaluation which can evaluate these major categories of remembering, as well as attention, speech perception, and so on.

But, you can also use this information to try to improve your own memory before you decide to ask for a referral for neuropsychological testing. If you’re having trouble remembering, ask yourself (or someone you trust) a few questions:

• Do I have difficulty with hearing or vision?

• Am I easily distractible? Am I trying to pay attention to things that I need to remember?

• How are you trying to remember? Do my efforts reflect shallow (rote repetition) or deep encoding (connecting the information to personally relevant information)?

• Do reminders help?

• How hard am I working at remembering?

As we move into the second half of life, memory often requires more effort, but people expect it to come naturally like when they were younger, and then when they forget they become alarmed. Forgetting is a normal part of life and if you are having trouble, take some time to evaluate your sensory abilities (hearing and vision), how well you’re paying attention (vs. getting distracted), and whether you are intentionally trying to encode the information in a way that is easily stored and retrieved.

Next week we’ll explore conditions that can limit attention, encoding, storage, and retrieval in the second half of life.

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This morning the World Health Organization released the second edition of its guidelines on Risk Reduction of Cognitive Decline and Dementia. As I wrote yesterday, this is an updated on the 2019 guidelines. You can read the full 2026 report here.

I haven’t read the full report (it just came out an hour ago), but here are a few highlights.

Risk factors

An updated list of risk factors and areas to target for intervention are presented. Much of this looks similar to 2019 but we see a few new risk factors: poor sleep, stroke, traumatic brain injury, early/premature menopause, HIV, vision impairment, and air pollution. Poor sleep is one risk factor that wasn’t included in the Lancet 2024 report, but people have long suspected this is key for brain health.

Prevention activities

The report also reviewed the research evidence for various prevention activities and made recommendations based on the strength of that evidence. These are divided into strong recommendations (those with very good data), conditional (benefits are there but the data are not as strong), and those with insufficient evidence.

The strong recommendations are simple - increase physical activity, don’t smoke, and don’t take supplements for dementia/memory, unless you have a diagnosed deficiency that a health care provider is treating with the supplement.

This isn’t what most people expect to hear on supplements, so I want to repeat it - the report recommends AGAINST taking supplements for brain health, and the evidence on this recommendation was considered strong. If you want to learn more, I suggest you dig in to the report.

Perimenopause and MHT (HRT)

The guidelines also include consideration of perimenopause and menopause and their treatment (referred to as menopausal hormone therapy or MHT in the report) for the first time. The report recommends against MHT in women over 65, particularly when the goal of MHT is to reduce risk for dementia. The report concluded there was insufficient evidence to recommend MHT for women under 65 for the purposes of reducing risk for dementia. This is important distinction - the report is only referring to the use of MHT for dementia risk reduction. Their perspective is that MHT can and should be used to treat symptoms of perimenopause, but that there isn’t enough evidence to recommend it specifically for the purpose of dementia risk reduction. This will likely generate much discussion and hopefully additional research on HRT/MHT and brain health among middle aged, perimenopausal women.

I’ll take a deeper dive into the guidelines in future posts, but in the meantime the full report can be found here. Feel free to post questions.

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WHO Guidelines on Reducing Risk for Cognitive Decline and Dementia

A few months ago I wrote about whether we can prevent dementia. That post reflected the most current science concerning brain health and reducing risk for cognitive decline. This area of research continues to grow and become clearer. Tomorrow we’ll get another major update as the World Health Organization releases its second report on reducing risk for cognitive decline and dementia. Once the findings are released, I’ll write a summary of what’s new, but for now I want to summarize what the first report found.

2019 WHO Guidelines: Risk Reduction of Cognitive Decline and Dementia

In 2019 the World Health Organization released a report that summarized what we know about reducing risk for cognitive decline and dementia. A growing number of people are developing dementias like Alzheimer’s disease and people facing the second half of life are becoming motivated to do that they can to avoid these conditions. There is a lot of information out there and not all of it is reliable and helpful. Reports like these from a large health body like WHO are very important because they summarize a large body of science and can guide our prevention efforts without concern that we’re being sold something.

A summary of the first report can be found online but the actual first report has been taken down presumably because the second report will post tomorrow. Here are a few recommendations from the 2019 report.

Physical Activity

Physical activity was recommended to reduce the risk of cognitive decline and to reduce the risk of progression of MCI to dementia. This included 150 minutes of moderate intensity aerobic activity or 75 minutes of vigorous intensity activity. For those already active, the encouragement was to consider moving to 300 minutes of moderate aerobic activity per week, but only as your health and abilities permit. Consult a health care professional. If you have health conditions that limit activity, do as much as your ability will allow. The 2019 report also recommended balance and strength work.

Diet

Mediterranean-like diet for reducing cognitive decline in people with normal age-related changes and mild cognitive impairment. This may be an area of update with new data from the US POINTER study suggesting the MIND diet as a key feature of prevention efforts.

Avoid tobacco products, of course.

Supplements

The 2019 guidelines did not recommend supplements. The guidelines state:

“Vitamins B and E, PUFA (omega 3 and omega 6 fatty acids) and multi-complex supplementation should not be recommended to reduce the risk of cognitive decline and/or dementia, unless there is some nutritional deficiency.”

This is one area where the guidelines might change. As new data emerge, supplements or diets that had little data to support them in the past may now have better data. Guidelines like those put out by WHO or the Lancet commission will base their recommendations on data. As a result, the recommendations can be quite different from a podcast or Instagram influencer.

Alcohol Use

Avoid hazardous and harmful alcohol use. I will be watching this one. I wonder if the WHO study group will recommend avoiding alcohol completely. We’ll see what the data say.

Cognitive Interventions

Cognitive interventions were recommended in 2019 because their “desirable effects of the intervention outweighed the undesirable effects” but the group noted that the quality of evidence was low. I expect this to change in that there is more data to support specific interventions. For example, data from the ACTIVE study showed promising data on reducing risk for dementia.

Social Activity

Social activity has long been linked with brain health, but the 2019 report concluded, “There is insufficient evidence for social activity and reduction of risk of cognitive decline/dementia.” However, we know that social relationships are important, even if they didn’t lower risk for dementia. The WHO authors agreed, “Social participation and social support are strongly connected to good health and well-being throughout life and social inclusion should be supported over the life-course.”

Managing Chronic Conditions

Managing vascular risk factors like hypertension, diabetes, and dyslipidemia can lower risk for cognitive decline. Managing and treating depression may also have positive effects on cognition, but the data for antidepressants for this purpose were deemed inconclusive. “There is currently insufficient evidence to recommend the use of antidepressant medicines for reducing the risk of cognitive decline and/or dementia. The management of depression, in the form of antidepressants and/or psychological interventions, should be provided to adults with depression according to existing WHO mhGAP guidelines.” Depression should be treated. This treatment may or may not lower risk for dementia.

Hearing Loss

Hearing loss has been linked to cognition. Although hearing aids are beneficial for hearing, the 2019 report reported that “there is insufficient evidence to recommend use of hearing aids to reduce the risk of cognitive decline and/or dementia.” Of course, your family would still prefer that you get hearing aids if you need them.

“Screening followed by provision of hearing aids should be offered to older people for timely identification and management of hearing loss as recommended in the WHO ICOPE guidelines.”

New Report Tomorrow (July 16, 2026)

WHO will launch its second edition tomorrow and I’m eager to see what new recommendations are included. Since the last report, there have been two major papers published in the Lancet (2020; 2024) suggesting that between one third and 45% of dementia could be prevented through modifiable risk factors. It will be very interesting to see what is included in this new report. I will write a short summary on Thursday and release it as soon as I can. Stay tuned!

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Support groups

Caregiver support groups take a variety of forms, but all are designed to bring together people going through common experiences. These vary in terms of how they function. Some are more like group therapy - sharing experiences and learning from one another - whereas others are more informational with guest speakers teaching on dementia and caregiving related topics. Regardless of the format, these can help you feel less isolated and alone. They are often run by people who have already gone through what you are going through or who are in similar situations right now. You can find support groups near you through your local chapter of the Alzheimer’s Association or through this community resource finder.

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GUIDE

Another new resource comes from a Medicare funded program called GUIDE which stands for Guiding an Improved Dementia Experience. This program that provides comprehensive services and supports for people with dementia and their caregivers. GUIDE offers caregivers support, in-home respite, and help with coordinating services. The program also includes care navigation, 24/7 access to a support line, caregiver training and education, respite services up to $2,500 annually, and connections to community resources. You can find the nearest GUIDE provider on their website. This is a low cost option for professional service and support. When you feel uncertainty and isolation, this is a good option to help you find what you need most.

Geriatrician

Oftentimes people wonder what type of doctor they should see - a neurologist, psychiatrist, their internist or primary care physician? I often recommend that families find a good geriatrician. A geriatrician is a physician who specializes in aging and age-related diseases. One reason why a geriatrician might be ideal, is that they can become your primary doctor handling not just your dementia and memory concerns, but also your other health conditions and medications. A geriatrician is likely to take a whole person approach to your overall health, and many are equipped to handle brain health issues as well. Some people overlook a geriatrician as an option, and will wait months to see a neurologist. You can find a geriatrician at the American Geriatrics Society or the HealthInAging website.

Elder law attorney

Dementia can raise a variety of legal issues: power of attorney, guardianship, and protection from financial exploitation and scams. When a person has significant cognitive impairment, they can lose the ability to make good decisions which can have all sorts of negative consequences. Even if they don’t fall prey to scams, they might not manage money well enough to be able to pay their bills and remain in their home. Other legal issues may surround wills and trusts which can be incredibly complex when a person wants to make changes but is experiencing dementia. An elder law attorney can help you navigate these challenging issues. You can find an elder law attorney near you from the National Association of Elder Law Attorneys.

Psychologist or therapist

Not all caregivers need psychotherapy or counseling, but it can be very helpful for those who are feeling overwhelmed, depressed, anxious, or burned out. Geropsychologists are psychologists who specialize in aging and working with older adults, and often are well equipped to address family caregiving issues and sometimes offer dementia assessment services. You can find a board certified geropsychologist at the American Board of Professional Psychology. The American Psychological Association also maintains a Caregiver Briefcase, which includes information related to psychology and family caregiving.

Pastor, clergy, or faith community leader

For people of faith, connecting with their faith community remains an important source of support. A caring pastor or faith leader can help provide spiritual support and a way of finding hope in the midst of challenges and suffering. Some find that the clergy are not particularly well equipped for understanding Alzheimer’s disease or other forms of dementia. A little over a decade ago, I wrote a faith-based guide to Alzheimer’s disease and dementia. If you or your faith leader don’t feel equipped, consider getting a copy to read together.

Family and friends

Outside of these formal sources of support, family and friends play a very important role in helping family caregivers. Having one or two people in your life who you can trust and who are available to listen can be an important lifeline. Emotional support comes in a variety of forms, but what you need is someone who is there for you, who will listen, and do their best to understand what you’re going through, hopefully without offering overly simplistic advice.

Endurance in caregiving

In my first Substack post, I shared a quote by the author and psychotherapist Mary Pipher about three types of problems:

In her book, Letters to a Young Therapist, Mary Pipher writes that there are three types of problems people bring to psychotherapy: problems that can be addressed with good information, problems that require specialized treatments and techniques, and problems that require endurance. Pipher describes this third category as problems we can’t ultimately solve or take away; problems we need to learn to endure, perhaps for a very long time.

Caregiving for people with dementia fits all three categories. Formal sources of support can provide good information, education, and treatment. The more we understand about dementia and the way it impacts the person and their functioning, the better able you’ll be to understand and care for your family member. But caregiving is not something that we can ultimately “fix” - it is something we need to endure.

In my experiences with endurance, I’ve learned the value of having someone to go with you. In ultramarathons we call this a pacer. They run alongside you, providing guidance, pacing (not going too fast or too slow), and generally do whatever they can to help you keep going. If you are caregiving for a family member with dementia, you need a pacer too - someone who understands what you’re going through and can go with you over the long haul.

Last year I completed my first 100 mile trail race. At mile 80 I thought I couldn’t go another step. My legs had locked up and I thought it was over. I was done. But, I had my friend Steve with me. He gave me some ibuprofen, told me to eat something, offered some words of encouragement, and then told me to try to just cover the next half a mile. Instead of letting me quit, he encouraged me to see what would happen if I just tried to keep moving, even if only a little bit. I trusted Steve because I knew he wanted me to make it and he had been there before. He’d completed many long distance races, so he’d experienced this, and he knew what he was doing.

Me and Steve (in the background - helping me keep going)

If some random onlooker had said things like “You can do it! Keep going” (as people often do), it would have meant less than Steve’s words. (How do they know if I can do it?) The same is likely true for you as a caregiver. General encouragement can be nice, but many caregivers feel that other people really don’t understand how hard things are and why it’s so hard. Sometimes you might feel like no one really sees what you’re going through. It can be hard to keep going at times. But, if you can find a person who understands (or is willing to learn), that can be enough to keep going, which sometimes is the best thing you can do.

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When a person has Alzheimer’s disease or another dementia, they slowly lose their independence in daily functioning. They begin to forget to take medication, pay bills, and have difficulty driving. People around them naturally end up helping the person with these tasks. We often refer to these people as caregivers.

A caregiver is a person who does the things the person used to be able to do for themselves. In the early stages of dementia, this includes the instrumental activities of daily living.

• Help managing medicine — remembering to take them and remembering that you already took them — both equally important.

• Help managing finances — remembering to pay bills, watching over financial accounts, avoiding financial exploitation and scams.

• Driving and transportation — driving becomes very risky. Many caregivers take over driving and often play a role in limiting the person’s driving altogether.

In the middle stages of dementia, caregivers begin to help with more basic activities of daily living — bathing, dressing, using the bathroom. At first, this might involve verbal reminders, but later this becomes hands-on help.

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The vast majority of caregiving happens in families. According to the Alzheimer’s Association 2026 Facts & Figures report 83% of caregiving hours are provided by unpaid caregivers — mostly family. The two largest groups are caring for a spouse or caring for an aging parent or in-law.

Taking care of people with memory problems and dementia can be challenging. This goes for family caregivers and for paid caregivers — home health aides, nursing home staff. The work is often physically demanding and mentally draining. But for family caregivers, there are emotional and relational elements that aren’t as prominent in paid, professional caregivers.

Research on family caregiving reports high rates of depression, burnout, and burden. Decades of research have emphasized the variety of ways that dementia caregiving are stressful. These include the stressful nature of dementia itself — responding to memory loss and behavioral changes, keeping up with daily tasks for yourself and another person, and the need for ongoing supervision. Caregiving may also be stressful because it strains your time and takes you away from other important commitments like your job or raising your children. Adult children caregivers tend to feel this more than spousal caregivers. They feel the pull of how to use their time and energy, and how to prioritize these various roles.

But, there is something we sometimes miss when thinking about who caregivers are and why the role might be difficult. While it is true that caregivers are people who take on care, they are also spouses and adult children with a long relationship history. Every caregiving relationship has two parts: (1) the long-term relationship between spouses or the parent-child relationship that existed before dementia, and (2) the new roles as care provider and care recipient. A caregiver is also a daughter or wife — two thirds of caregivers are women.

Family caregiving happens in the context of long term relationships.

When the relationship has been healthy, it can help ease some of the challenges dementia brings. But when the relationships have been strained or conflicted, it makes dementia caregiving more complicated. Sometimes people find themselves taking care of someone who didn’t take care of them when they needed it. Caregiving can be hard, but it is even harder when you have unresolved conflict or pain with the person who is now relying on you (and doesn’t seem to understand or appreciate what you’re doing). Longstanding pain in a marital or parent-child relationship makes a difficult task even tougher. Whatever the history, the prior relationship influences the way caregiving plays out. Most of these have to do with gray areas, where things are uncertain.

Grieving while still taking care of the person.

Sometimes people think of grief as something that happens when a loved one dies. But dementia reminds us that we sometimes grieve losses we see coming down the road and smaller losses we’ve already experienced. A wife might grieve the loss of companionship, and the sense of having a helper. A husband who relied on his wife for figuring out life challenges now faces a big challenge and has to do it without her input or wisdom. Some grieve the loss of future plans — trips they’d planned to take, retirement projects, or even having a major role in the lives of their grandkids. These aren’t impossible with dementia, but it is more complicated.

Autonomy vs. safety.

Family caregivers face difficult decisions and often need to make them on behalf of their parent or spouse. When cognitive impairment progresses, the person with dementia can lose awareness of their memory loss. They may not recognize or understand why they can no longer drive or why they can’t stay in their own home alone. Family caregivers end up having to make these decisions for them. These are particularly difficult in the gray areas of caregiving. If a parent with dementia gets in an accident and hurts themselves or another person, the decision is difficult, but is at least more clear. But what if there have been some close calls, nothing major? This raises other questions. How much say should they have? How much should I step in? Making decisions for another person when they are severely impaired is difficult enough, but making decisions when the cognitive changes are mild is much trickier, at least for some.

Dementia changes vs. longstanding difficult personality?

Is this the dementia, or is he just being a jerk?

People who are stubborn, selfish, or short-tempered can get dementia just like anyone else. But when they do, the caregiver can experience a strange sense of uncertainty as they try to take care of them. Their extreme personality can begin to manifest as behavioral problems — resisting care, harsh words, even aggression. The experts tell the caregiver they’ll need to adjust their expectations and approach because dementia can lead people to lose their filter, be less able to tolerate stressful situations, or misunderstand what the caregiver is doing. But the caregiver is also a wife who lived with a selfish, uncaring husband for 40 years leading up to this — and this feels like more of the same. Sure, maybe it’s dementia, but this all feels very familiar, echoes of how this person has always been. Maybe the dementia has made things worse, but many caregivers are left wondering: is this the dementia, or is he just being a pain like he always was? This is particularly challenging when the dementia is still mild.

Family caregiving involves a mix of dementia related changes and family dynamics. If we ignore the latter, we miss and even invalidate the experiences of the people who need help and support. If you find yourself in this situation, share this post with someone who cares about you and talk to them about what you’ve struggled with. Next week we’ll dive into where to find support for caregivers.

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Every week I conduct evaluations with people who are facing a diagnosis of dementia. Some of these people are concerned about their own memory. Others aren’t concerned but have doctors or family members who are. In either scenario, these moments are often fraught with fear and anxiety.

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In his pioneering work, the late British psychologist Tom Kitwood argued that there are technical and personal aspects of the dementia experience. I’ve always liked that framing. In my context, the technical side relies on neuropsychological testing using tools that are sensitive to the cognitive changes associated with Alzheimer’s disease and other brain changes in the second half of life. Memory, language, executive functioning, and so on. This is a key part of my professional specialty.

The personal side concerns one human being meeting with another, both with limitations, but one in a place of greater vulnerability and uncertainty. Empathy, values, dignity, and so on. My commitment is to specialize in people, not just the brain diseases that affect them.

I wrote this little piece several years ago after finishing an evaluation.

After the testing

I met you in the disorientation that comes from believing you are doing just fine, thank you, but everyone else knows the truth.

I read a long list of words, many times. How many could you remember? Several. Twenty minutes later? None. You stared at me, stunned. Had I read a short story you were asked to remember? I must have, you reasoned, otherwise I wouldn’t be asking. Gone. Maybe it never happened. Let’s not dwell on it.

Look at these pictures. Yes, that is the Sphinx, the one in Egypt. No, that’s a protractor, not a compass. Actually, that’s an elephant. I handed you a pencil and encouraged you to draw the same shapes you’d copied earlier that day. I couldn’t help but draw conclusions from terrified eyes staring back at me.

I could see you didn’t want to be here, even before you arrived. No one wants to be here it seems. Where would you be if you weren’t stuck here?

I left to tally your results. Some were right, many were wrong. Most people score much better, but I don’t see most people anymore. You’re a lot like the person you passed on your way in - the man fleeing the building, retreating to his tan Toyota, hoping to find relief. No two people are exactly alike, they say.

I tried to test your memory but I couldn’t measure your laugh or love, your regrets or how you still feel unappreciated after all these years. I failed to measure you.

As you left, you were upset, but polite, thanking me. I apologized for making the afternoon difficult and tried to make a joke. Each of us wanted to make the other feel better about what had transpired.

I wonder what you’ll remember about this day. As a clinician, I hope you’ll remember what we talked about. As a fellow human, I am grateful you will forget.

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Caution: meandering thoughts ahead

Sometimes in my writing I become aware that I’ve been circling something even when I’m not quite sure what it is. I hope you’ll bear with me while I circle something.

Over the past two months I’ve been writing about Alzheimer’s disease, the new era of technological change, and the lifestyle changes that can help prevent it. I’ve also been writing about endurance, setbacks, and how we handle them when they inevitably emerge. The last two posts explored aging as an endurance project — one we can train for in hopes of avoiding dementia and other health problems in the second half of life.

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What does the second half of life hold for you? It’s hard to know exactly. Gerontology research can tell us what age-related changes — physical, cognitive, and otherwise — to expect, and what diseases tend to emerge as we approach the last decades of life. The same body of literature highlights social losses and psychological challenges that come with getting older. But how much control do we actually have over these things?

A growing body of science suggests that we can lower our risk for major health problems like cancer, Alzheimer’s disease, and heart disease. But in our individual lives it can be hard to know if our efforts are really working. We know people who were exceedingly health conscious, who seemed to do everything right, but still slipped into dementia or cancer at a much younger age than their neighbor who ate and drank whatever they wanted and never bothered to exercise.

Do everything right. Do everything wrong. Hope for the best.

Science tells us something important about probabilities and likelihood, but it can’t tell us what will happen with our lives. Life is both predictable and unpredictable. We are always living with uncertainty. Some people find that exciting. Others find only anxiety.

I have long been fascinated with predictability, which lies at the heart of science. Science is predictable — or at least works to identify what is predictable. The scientific prevention proposition is essentially: People who do X reduce their chances of Y by Z percent. Science speaks the language of probability, odds ratios, and likelihood. It needs the variability of life to be more systematic (repeatable, predictable, following some underlying laws of nature) than noise (idiosyncrasy, uniqueness, error).

I’ve also been drawn to the depth and uncertainty we find in our stories, which are far less predictable than science. When we’re honest, we know that life isn’t as predictable as we — or science — would like it to be. At some point, we learn that life isn’t inherently controllable, even if we pretend it is. If you do X, you will avoid Y. We want that kind of certainty in the face of difficult and painful outcomes. But life cannot be reduced to a series of if-then statements, even though much of our world is built on these helpful little buggers. When we’re anxious or afraid, we want life to be systematic. But some days we can only find noise.

I’m currently reading ’s Joyful, Anyway, and she writes:

“There are moments in our lives when we must admit that almost nothing can change. Not everything is possible. A few variables remain in our control but the rest is luck or chance or the snowmelt or God.”

This gets at something I’ve been circling with the whole prospect of creating prevention projects for dementia. Bowler is writing about things she’d like to change whereas I am writing about the fear that everything might change. Control is the common theme.

We have some control over some modifiable risk factors, but there is much we can’t control. The same goes for aging more generally. We can plan for retirement, live as healthily as possible, and do everything right. But we still have to live life to find out what happens. As I wrote over the last couple of weeks, aging is like an endurance challenge. You can train well, develop a plan, and still have to show up at the start line to find out what will happen.

Even as we seek to control our risk, we face uncertainty every day. Most days we don’t acknowledge it, but it swirls below the surface, sometimes expressed as a vague anxiety for which we can’t quite identify the source.

Bowler asks: How do we discern what is in our control and what is not?

A very good question.

“But here is what cancer and suffering and aging and resentment and The List and everything big and small has taught me: complete control is an illusion. It is a beautiful life. Grief will teach us this lesson again and again.”

(You have to read the book to understand The List.)

I think we should identify and take control of what we can. Take steps toward healthy aging in the second half of life. Do what we can to reduce risk for dementia. But we also need to face the uncertainty and unpredictability of the future.

We need to learn to face dementia — or whatever aging challenge you’re dreading. For dementia, I believe it is wise to consider preparation. Getting your house in order. Getting yourself in order. Having difficult conversations about what you’d want if you developed dementia in light of your values, preferences, and beliefs. These might be hard conversations. Some of us tolerate uncertainty better than others.

The book of Proverbs teaches the wisdom of planning, and Jesus tells us not to worry about tomorrow. This isn’t a contradiction. We can plan. We can give our best effort. But we can also let go and trust. We can show up to see what happens.

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Last month I wrote about how the world of Alzheimer’s disease is changing with new treatments, new diagnostic tests, and growing data on the prospect of prevention. Emerging data continue to change the way we think about Alzheimer’s disease.

The new study

A study published last week showed, once again, that for many people Alzheimer’s begins silently in midlife. But this study also showed that this early, midlife form of Alzheimer’s pathology can be detected with blood tests.

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The sample included 2,248 people between the ages of 53 and 69 (average age 61) without dementia. Researchers used an FDA-approved blood test (Lumipulse) and found that 6–14% had evidence of Alzheimer’s pathology, depending on which proteins were examined. Although these people did not have cognitive impairment, blood test results were correlated with declines in verbal memory and processing speed.

The authors concluded:

Alzheimer’s disease neuropathology is relatively uncommon in midlife but associated with worse cognitive performance and accelerated decline and might have stronger association among some groups. Early Alzheimer’s disease neuropathology detection with the use of plasma biomarkers might enable timely prevention and intervention in midlife adults including risk reduction and pharmacological therapies.

Alzheimer’s disease in midlife

There are many reasons why people think about Alzheimer’s disease in midlife. The most common is that they are caring for aging parents who have the disease. Confronted with the challenges of Alzheimer’s, it’s natural to become concerned about your own memory — wondering whether you’ll follow the same path.

This study suggests another connection to midlife. Middle-aged people should be taking active steps to prevent Alzheimer’s disease. Those of us in our 50s should be working to improve brain health and do whatever possible to lower our risk for late-life cognitive decline. Of course, people younger than 50 should as well — but these data suggest that those 50 and over should get moving.

Practicing prevention on the trail

Starting a personal prevention project

Last week I wrote about how we might “train” for aging as an endurance project. One training goal: reduce your risk for dementia.

A few weeks back I wrote about recent data suggesting that up to 45% of dementia might be preventable through 14 modifiable lifestyle risk factors. I’ve grouped them into three categories — what to add, what to stop, and what to treat and manage:

What to add

• Physical exercise

• Cognitive engagement

• Social activity

• Healthy eating — consider the MIND diet

What to stop

• Smoking (tobacco and marijuana)

• Excessive alcohol consumption

Check, treat, and manage

• Hearing

• Vision

• Blood pressure

• Blood sugar (diabetes)

• Cholesterol

• Mood — depression, anxiety

If you worry about your memory and future Alzheimer’s disease, it’s time to develop a training plan. Take a minute to consider these risk factors in light of your current health, habits, and lifestyle. Which would you include in your prevention project?

Maybe you need more exercise. Start 2–3 times per week and gradually increase. If you’ve been inactive, start with regular walking.

Or perhaps you’ve lost contact with friends or family. Maybe you need to reach out and spend more time with people on a regular basis. You might even need to reconcile and make peace with one or two.

When was the last time you visited your primary care provider? Make some goals for setting your next appointments. Commit to following your doctor or nurse practitioner’s recommendations. If they aren’t interested in your prevention efforts, consider a geriatrician.

Set these goals and put them into practice — just like training for a marathon or ultramarathon. But remember the lessons we explored last week: be consistent, find a pace that is sustainable, be prepared for setbacks, and find a training partner who will help you keep going.

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Jiang X, Hoang T, Shaw L et al. (2026) Alzheimer's disease neuropathology plasma biomarkers and cognition in midlife: a community-based cohort study. The Lancet, 407, 2208-2216

Aging as endurance

This article is a follow-up to my three-part series on injury, recovery, and setbacks. If you haven’t read the three pieces prior, here is a short summary:

• Hip fracture in the Swiss Alps, surgery, and start to physical therapy

• Recovery - walking, running, and return to racing

• My first 50-mile ultramarathon

These posts covered a span of five years and left me thinking a lot about endurance. As I wrote in my intro piece, there are problems we encounter that can’t be quickly fixed. They are challenges to be endured. This brings me back to my work with older adults. In a way, aging is a long trail and can bring challenges, like dementia and caregiving, that require endurance. I’ve been reflecting on what I learned about endurance through my personal experience and am trying to apply them to my professional practice as a psychologist and gerontologist. I am also exploring for myself, squarely in midlife, what have I learned about endurance that can help me age well?

This isn’t meant to be an exhaustive coverage of all the ways that endurance and aging go together. These are a few thoughts on training, endurance, and setbacks that I keep coming back to. Feel free to suggest your own ideas in the comments at the end of the piece.

• Endurance can be trained on the trail and in the second half of life.

• Small consistent steps over time can be powerful.

• Pacing is essential.

• Even the best training cannot guarantee a specific outcome.

• Setbacks should be expected. How you respond will determine if you keep going.

• You have to run your own race, but having other people helps.

Training for Endurance

If you want to go long on the trail or in life you need to train. On the trail, training requires gradually increasing your frequency and duration of running, giving the body time to adapt and recover. Training extends what your body can do, but also what your brain can do, through earned confidence in what the body can do. It isn’t enough to just believe that you can run 50 miles; this belief has to be earned through training so that when that belief is tested, you can find a way to keep going. When you encounter difficulty, which you undoubtedly will, the brain has evidence to draw upon — the long training runs, the many miles over months of training, and prior races. Once you convince your brain that you can do hard things, you can.

Training for the second half of life is a bit more complex but involves the same ideas. What do we need to age well? Certainly we need to build physical fitness, but we also need to think about cognitive fitness, emotional health, social embeddedness, and a sense of purpose. For some, aging well means doing what they can to avoid Alzheimer’s disease and other age-related problems. A few weeks back I wrote about preventing Alzheimer’s and dementia, summarizing the science of modifiable risk factors. What if you took that information and developed a training plan? Gradually increase physical activity. Find cognitively stimulating activities you enjoy. Eat a healthy diet. Spend time with people. Review the 14 modifiable risk factors and make a plan.

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Training takes time and consistency. You really can’t rush it. Training is gradual. Pushing too hard or too fast often leads to injury or burnout. We need time to adapt. Imagine deciding to start training for a 50-mile race that will happen in 8 weeks when you haven’t been running at all. You might be able to pull it off, but the probability is low and you aren’t setting yourself up for success. The same could be said for aging and health. If you want to age well or reduce your risk for dementia, better to start as early as possible. Taking healthy steps when you’re 50 is better than when you’re 70. That said, start where you are, not where you wish you were. But make sure to adjust your expectations. It may take more time than you anticipated.

Finding a Sustainable Pace

You need to find a pace that you can sustain over many miles and many years. Going too hard and too fast early will blow up your race. Going too hard and too fast for too long will lead to burnout in life. The corollary here is to run your own race — don’t get caught up in what pace other people are running. You have different abilities, different experiences, and different training. When I ran my first 50-miler I made the mistake of trying to keep pace with a group of experienced ultramarathoners for the first 10 miles. This pushed me too fast too early in the race and I paid for it in the form of aggravating an old injury.

Pacing and running your own race also applies to your training. You can’t just download a 50-mile training plan you found on the internet because it might not be a good fit for you and your body. This plan may have been designed with elite, experienced runners in mind. If you’re new to long distance running, the plan won’t be a good fit. Your body can’t take the same training load as someone who has been running competitively for many years. Or, maybe you are injury prone. Either way, you’ll need to make adaptations to your training, rather than pretending you are someone else. Your endurance project, on the trail and in life, has to fit you, your circumstance, and history. Again, start where you are, not where you wish you were. Embrace who you are, not who you wish you were.

Even the Best Training Offers No Guarantee. Expect Setbacks.

Training does not guarantee you will reach your goal. You can train well, follow the plan, and do everything right, only to sprain an ankle in the first mile of a race. Things happen. We make mistakes. We have accidents. We sometimes lose focus and fail to execute how we’d planned. But, nonetheless, you need to train because it gives you a better chance of making it. You still have to run the race to find out what will happen.

In long running and in life, you should expect setbacks. In fact, most ultrarunners accept that the longer the race, the more likely things can go wrong. Problems with your body, your fueling, or your mental focus. Life is the same, isn’t it? The longer we live, the greater chances we’ll get sick, lose people close to us, or become very forgetful. Part of training, on the trail and in life, is doing what you can to prevent negative outcomes (trail injuries, dementia), but also preparing for how you’ll deal with them if they do happen.

Setbacks are to be expected, but what form they take is often unknown. Last fall I signed up for my first 100-miler. There were setbacks I expected — extreme fatigue, pain, and even visual hallucinations (story for another day). When these happened, I wasn’t surprised. Of course these happen when you run/walk/hike for over 24 hours without sleep. But, there were other setbacks that I didn’t see coming and these were the ones that nearly derailed me.

At mile 80, we came to an aid station where I spotted a campfire surrounded by runners who looked like they may never leave. One was sleeping, another stared blankly into space while another man pleaded with him to get up and get going. It seemed risky to sit down by the fire. But, I needed to mix a nutrition packet with my water and it would be easier to do this while sitting. Just a couple minutes, but apparently that was too long. When I stood up and tried to take a step, my hip flexors were already locked up. I could barely take a step. All I had done was sit down! Now it seemed that I had blown it and I thought my race was over. But, I had a good friend with me and he had more experience on the trail. He offered me some ibuprofen, told me to take some carbs and electrolytes, and just start taking small steps. We left the warmth of the fire and shuffled off into the dark woods unsure what would happen. After a mile the tiny steps loosened up my hips and I could walk somewhat normally again. A couple miles later I was able to run a bit. We were back on! Hours later, I crossed the finish line. If I had been alone at mile 80, I might have quit. I desperately needed someone to speak into my situation and help me find a way to keep moving forward.

Make relationships part of your endurance project

In the end, how you respond to the unexpected setbacks determines whether you’ll make it. It helps to have people to journey with you. They can’t run the race for you, but they can help you keep going.

How would your life change if you started to think about aging as an endurance project?

If you were designing a training plan for the second half of life, what would you include?

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“I’m going to run a 50 miler by the time I turn 50,” I’d told my daughter while stretching after we finished a two-mile jog together. We’d both had major medical surgery in the past year — my hip, her heart. Now here we were together on the road to recovery.

I can’t recall if I actually thought I could do it or not, but I wanted to set a big goal for myself and for my daughter. Molly also had big goals of playing college field hockey. If my hip fracture wasn’t a long-term limitation on what I could accomplish, maybe her heart wouldn’t limit her either.

“Fifty by fifty!” came her reply with a smile.

An idea takes root

That idea of an ultramarathon had been just a seed for many years, but now it began to take root. I was nowhere near ready, but I was in my mid-40s with several years to accomplish this. Recovery from hip fracture had given me some basic ideas of what I needed to do, and more importantly, what not to do. It was time to find out if I could pull this off.

Slow down. Stay consistent. Increase gradually. Do the little things.

The sun rose over the horizon as we entered pine forest, a snaking line of runners slithering along single track trail for the next 50 miles. I kept pace with a small pack of runners who passed the time telling tall tales of 100 miles and longer. They knew they’d finish today. This was my first ultra and I wasn’t sure how my day would go.

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Weaving our way through tall stands of northern Michigan pine, we hit the 12-mile mark, halfway through the first 25-mile loop. Instead of thinking about the remaining 38 miles, I broke down the full distance into segments, small goals that could be met along the way to the larger goal. We passed through an aid station without stopping, slowing up only to grab a quick drink before pressing on. The sun had risen above the tree line, and I was starting to feel more confident that today I would finish my first ultra.

But feelings change. Less than a mile later, a small familiar pain on the outside of my left knee began to emerge. It wasn’t my recovered hip — it was on the opposite leg and reminded me of old injuries I inflicted upon myself when I pushed too hard, too long, too soon. Some pains can safely be ignored. There are others you need to stop and listen to. The hard part is knowing the difference.

Clouds blocked the sun, and I went to a very dark place. I’d spent the last 5 years working my way back to running. I’d done everything right. I’d listened to my physical therapist. I built slowly. I’d done the hard work to be ready to reach this goal and now it was over.

I still had five miles to go in the first 25-mile loop before I could sit down and quit. Here I was again — walking, barely running. Even a short bout of running felt terrible. If I could have walked off the course right there I would have. But I was still several miles away from the start and there was only one way to get there. I had to keep going before I could quit.

I spent the next hour rehearsing failure.

Eventually my thoughts wandered back to the accident, the helicopter rescue, the surgery, the physical therapy, the crutches. I recalled how grateful I’d felt to run that first race after the fracture, the half marathon through the park. It felt amazing to reach that goal, to feel like a runner again, or at least be on the way toward some version of a runner. I allowed myself to imagine, just for a moment, what it might feel like to reach my goal, to finish a 50 miler.

A moment later the pain came rushing back as if it knew how foolish I’d been.

I clenched my fists and growled in frustration. The sense of loss fled to the background and fury came rushing in. I was furious with my injury, furious with failure, and furious with myself. I cursed in my head. All that time and effort. My cursing escaped in a mutter. Those grand plans for running 50 miles. Now I was cursing out loud. At that moment, I decided.

“I am not quitting,” I yelled.

I’d like to report that I took off running, but I still couldn’t. So I just kept walking — the best version of not quitting I could muster. I walked, I hobbled, and occasionally I tried to jog. With this awkward combination I finished the first loop. 25 miles. The furthest I’d gone for as long as I could remember.

Stepping into a trail of uncertainty, I started the second 25-mile loop.

Now that I wasn’t running I didn’t have to worry as much about tripping on roots and rocks that littered the trail, and I could take in my surroundings. I looked up at the tree canopy and noticed the birds flying back and forth as the sun broke through. I breathed in the smell of the pine forest. This was beautiful again.

I came out of the forest and heard the aid station volunteers cheer. I did a little dance. They laughed. I ate some cold pizza and said some things I thought were witty, but probably weren’t. My hips were sore. I was exhausted. But somehow I felt grateful again. I reviewed my goal. 50 by 50. Keep moving.

Eventually I noticed that my knee felt better too. Short bouts of running didn’t seem to bother it anymore. My fatigue, on the other hand, was growing with each passing mile. I figured I had maybe 18–20 miles to go. I checked my GPS watch to find out. Dead. The battery gave out long before I did.

There was no time. No distance. Just step after step. Alone.

I kept on walking, then running, and back to walking again.

As I rounded a bend, I spotted a runner up ahead. I gradually caught up to him hoping for some idea of how much further we’d need to go. He turned to look at me over his shoulder and kept moving.

“Any chance you know how far we have to go?” I asked.

“No,” he grunted. “I don’t wear a GPS.”

“Oh,” was all I could manage. “Mine died.”

“I think I remember from last year, once we hit the last aid station we have just under three miles to go.”

Three miles to go — the best news I’d heard all day.

Soon we heard voices and spotted a small crowd of runners and volunteers at a small opening in the dense woods. They were eating, drinking, and cracking jokes, no doubt sensing the almost-thereness of it all. But we were staring down the hardest part of the course. I remembered the pounding the downhills gave my knees and quads at the end of the first lap. Now my legs were even more shredded. But I couldn’t risk stopping. My legs might seize up.

I attacked the last hill like it was the first. The other runners fell back and soon were out of sight. I was determined to finish the race running. Walking was good, beneficial, and even necessary. I’d learned that from my long slow recovery and again in this long slow race. But running to the finish still meant something to me, so I gave it what I had and then some more.

I could hear the announcer calling out my name and hometown. I crossed the finish and bent over, hands on my knees, feeling waves of exhaustion I had never imagined. The day hadn’t gone as I envisioned, but I’d reached my goal.

Slow down. Stay consistent. Increase gradually. Do the little things.

I hobbled to a bench and got out my phone.

“Made it.”

Just a few moments passed before the reply came back.

“50 by 50! You did it.”

A friend brought me a cold beer and I sat there for a long time without speaking. My mind drifted back to that two-mile jog with my daughter, a simple comment while stretching, and a smile that turned into five years of work. I’d wanted to show her something, and I think I had. But maybe I really needed to show myself something.

Next week I’ll reflect what I learned on the journey from fracture to finishing fifty and what it taught me about endurance in running, in life, and for aging. Thanks for reading!

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This essay was originally published in Comment magazine and is republished with permission. Image source: Comment magazine

A recent documentary on Alzheimer’s disease gives us a glimpse into the life of Woody, a deeply forgetful man who walks around his nursing home searching for something or someone. Perhaps he is searching for himself—some sense of who he is or who he was. The program covers his current difficulties with dementia and the better times in the past as a father, husband, and well-loved a cappella singer—all before Alzheimer’s took hold of his brain, life, and memory.

In one segment of his story, his wife and daughter drive him to a concert where his old singing group will perform. His severe memory impairment is evident as they the drive to the concert. He asks the same questions over and over. Where are we going? Why are we are going there?

Soon after they arrive, the group invites Woody onstage. The leader gives a tribute to Woody’s life and influence, words that Woody will quickly forget. Then they ask him to sing a song with them. Woody looks doubtful and confused. He has been living for many years with Alzheimer’s, and it seems likely that he won’t remember. But when the singing starts, he joins in, gaining confidence with each line and eventually singing a solo, the audience responding with loud applause and a few tears.

Though he is deeply forgetful, in this moment Woody remembers. He didn’t try or intend to remember. He didn’t think about it or analyze it. He simply experienced it because a community of people gathered around in love to honor a deeply forgetful man, engaging him in practices that help him remember who he is at a deep, fundamental level, seemingly bypassing the cognitive impairments that cause so much difficulty in his daily life. He likely can’t remember to take his medication or how to manage his finances, but maybe these aren’t the most important things to remember.

This episode raises fundamental questions about what it means to remember and how people and practices can be arranged to address some of the pain of Alzheimer’s—the deep confusion about who we are and where we fit. These are questions we all have to face, given that a person is diagnosed with Alzheimer’s disease every sixty-seven seconds in the United States and that, according to recent reports, one in seven people over age seventy have dementia.

As the number of people with Alzheimer’s continues to rise, our inability to address the growing need is becoming more apparent. Though we hope and pray for a cure, it will not come soon enough for millions of people in North America living under the weight of this dreaded disease. Our health-care systems are designed to diagnose disease and treat symptoms, but for Alzheimer’s, these efforts fall short and our systems of care are struggling and will soon become overwhelmed. What’s more, we can diagnose dementia with a high level of accuracy, but we cannot treat it well. The pills, brain scans, and spinal taps of emerging dementia science cannot help us remember. A five-minute health-care appointment can tell us something about what is wrong with us, but it cannot tell us how to live. Families and friends often feel as if they are losing the people they love even while they sit across the room from them. Alzheimer’s damages the brain’s memory structures so heavily that we often give up on the hope of remembering.

Alzheimer’s, Personhood, and Identity

Some have argued that our health-and social-care systems operate on a “defectology” model that overemphasizes deficits and disease while neglecting a broader understanding of the person. But as Jesse Ballenger points out in his analysis of Alzheimer’s disease and its history in America, our fixation on defects is skewed by a culture that has grown increasingly “hypercognitive.” We value intelligence, reason, and eloquence: characteristics that increasingly define our identity. This makes Alzheimer’s more threatening, because with Alzheimer’s we lose the cognitive abilities that define our modern identity.

In past centuries, people were defined not by their cognition, but by their relationships with God and other people, and even into deep dementia these identity anchors were not lost. As Ballenger notes, “Prior to the mid-nineteenth century, discourse on old age, including medical discourse, was primarily concerned with relationships that the aged individual maintained with God and the community of faithful. In this discourse, the physical and mental deterioration of old age appears to have generated less fear and anxiety.” The critical benefit of this relational and spiritual identity was that even people with significant dementia “retained their essential humanity . . . remaining connected to what were then the wellsprings of human meaning—community and God.”

As Western culture has increasingly viewed personhood in terms of cognition, our churches have followed. In Desiring the Kingdom, James K.A. Smith has persuasively demonstrated that even our churches and Christian education institutions tend to view personhood in an overly cognitive manner, focusing almost exclusively on thought and belief rather than love and desire. Certainly what we think and believe is important, but it is not the whole of our being. How might we think about Alzheimer’s and dementia differently if we started from the conviction that we are, first and foremost, creatures of love?

People with dementia represent a segment of our humanity for whom this understanding of the person is critically important. If we are primarily thinkers, defined by our cognitive ability and activity, dementia unmercifully threatens both our identity and our membership in community. But if love precedes and even surpasses thinking, we have hope that even when we cannot think, we can still love and be loved by others, and this love will define and sustain us.

What does this have to do with remembering? Smith further explains that we are shaped not just by our thought but also by what we do, particularly what we do repeatedly. We are shaped by practices and habits that form our character and even the core of our being. Some behaviors and practices have little significance (thin habits), but others (thick habits) “play a significant role in shaping our identity, who we are,” he says. “Engaging in these habit-forming practices not only says something about us, but also keeps shaping us into that kind of person.”

Maintaining a sense of identity and significance is a challenge for people with Alzheimer’s disease, but addressing the core of our humanity and personhood turns the conversation toward habits that can serve this end. What might be some of the practices that foster habits of remembering and identity? And what social role might the church, as a “community of practice,” play for an aging society? Communities of formative practice like the church hold tremendous promise for the common good precisely because they promote the types of remembering and flourishing that touch people with dementia. This is true for three reasons:

1. Many thick habits rely heavily on aspects of memory that are less affected by Alzheimer’s disease.

2. These habits are readily available in the context of church community and are, in fact, part of common liturgical approaches in the Christian tradition.

3. These habits prompt a deeper form of remembering about who we are and offer continuing connection to God and our neighbors.

Memory Systems in Alzheimer’s Disease

People with Alzheimer’s disease have great difficulty remembering recent events, conversations, and new information because the brain system responsible for storing these into long-term memory for later retrieval has been damaged. These memories are like a file that is never placed in a file cabinet. Because it hasn’t been properly filed away, it cannot be retrieved later. This is the most significant deficit in Alzheimer’s disease and can be very disruptive to daily life—remembering to take medication, pay the bills, turn off the stove, or the conversation you had with your spouse (e.g., Woody’s repetitive questions). Medical interventions for Alzheimer’s have been unable to improve this problem.

Fortunately, there are other aspects of memory that are less affected by Alzheimer’s. These include long-term autobiographical memory (memory for our stories), procedural memory (memory for habits, skills, actions), and emotional memory (memory for the way we felt). Even though most Alzheimer’s care emphasizes memory deficits, these less-affected aspects of memory offer much greater opportunity for flourishing. Although people with Alzheimer’s often forget recent and new information (explicit memory), they are better able to remember elements of their life story and more implicit forms of memory, which include forms of memory linked with thick habits and community practices.

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Community Practices That Promote Remembering

So what specific habits can help sustain people with dementia despite the continuing progression of underlying brain deterioration? How can church communities draw on these forms of remembering?

Mike Cosper summarizes this well in Rhythms of Grace: “The identity of the church is formed and transformed as it gathers around the Word and responds in the songs, prayers, and fellowship of the saints.” Identity and community rely heavily on the practices and habits of worship that have defined the liturgical structure of the church for centuries. The identity of those with dementia can be maintained in the thick practices of that same community.

The practices shared by followers of Christ around the world also happen to be practices that are much more accessible to people with dementia because they rely on spared memory systems and are practices in community. Scripture reading (especially familiar passages), well-known prayers (Lord’s Prayer), singing familiar songs and hymns, and even sharing sacraments such as Communion prompt a form of remembering that is both profoundly spiritual and communal. What happened with Woody can happen throughout the church on a regular basis when the church takes time and makes space to include people with dementia.

When we see a person who was agitated or confused begin to recite the cherished words of Psalm 23 or raise their hands while singing about God’s amazing grace, this is more than just a useful activity for managing dementia. These remembrances practiced in a community of love provide an enduring and deeper connection. Even these brief forms of remembering remind us that we are loved and provide the opportunity to love. No matter how impaired we may seem, love is a supernatural gift that cannot be taken from us.

We experience a connection to the larger narrative of God’s world and rehearse it together in worship so that we will not forget. We rehearse the truths that God fully knows us (Psalm 139), intercedes for us through the Holy Spirit (Romans 8), and promises to never forget us or forsake us, even when we seem to forget him (Isaiah 49:15–16).

These community practices can be beautiful pictures of God’s grace and provision in the lives of people with dementia. But why don’t we see this every week? Why are we still surprised when we see a very forgetful person remember the Lord? One of the main reasons is that many people with Alzheimer’s do not remain a part of the church community after they begin the journey into dementia.

Many families affected by dementia have told me that eventually they stopped participating in the life of the church. Some stop because of embarrassment and shame over their condition. Others find it too difficult to get to church services in light of their disability. Still others find that the church environment, whether social or physical, does not promote participation. Whether the church service is too loud or the people do not know how to engage a forgetful person in conversation, many families and individuals affected by dementia feel pushed to the margins and eventually stop coming altogether. Sadly this also leads them to be forgotten, and eventually no one even calls or visits. The beautiful picture of remembering in a community then only seems like a dream. Instead, people experiences the nightmare of loneliness and isolation, disconnected from the love of God expressed in community. This is the very worst thing that can happen, since the trouble with dementia is that when community is not present these practices cannot often be sustained.

The Church as a Dementia-Friendly Community?

How can we orient our churches and communities to transform the experience of Alzheimer’s disease? How can we tie the promises of God to our foreheads and write them on the door frames that we walk through each day? How can we design church and community in such a way that people with dementia will not be forgotten?

There are a variety of approaches outside of the church that promote inclusion and support for people with dementia. Some modify the physical and social environments to enhance quality of life and emotional well-being. The Green House Movement makes institutional care more homelike, enabling elders to live healthier, happier, and more active lives. Other approaches highlight environmental cues that remind a person where they are and prompt old memories. Still others focus on the social psychology of identity in dementia, arguing that the way we interact with and socially position people with Alzheimer’s influences their well-being and dignity.

More recently the concept of dementia-friendly communities has been spreading across Western Europe and is just starting to emerge in North America. These communities include both physical-and-social-design features that are sensitive to cognitive changes and the need for ongoing support. Examples include signs pointing the way to protect people from getting lost, and widespread dementia training for all community members. The basic idea is that a person with dementia will be safe in this community because it was designed with their needs in mind. More importantly, the people in that community have taken active steps to better understand and look out for people with dementia, who are considered valued members of the community.

Imagine what it would look like if our church communities became dementia-friendly communities. What if we took seriously the call to grace, sacrificial love, and the care of the most vulnerable among us? How beautiful would it be if churches led the way in working toward community that sensitively and thoughtfully embraced people who are otherwise overlooked? What specific steps can we take toward this end?

1. Learn about the challenges people with dementia and their caregivers face by inviting experts in Alzheimer’s and dementia care to educate and train the whole congregation and specific ministries (mercy and social justice, small groups, and pastoral counselors).

2. Remain present throughout the journey of dementia. Families affected by dementia long for people to remain present in their lives. Show love and honor by encouraging them to share their story and committing to live out the rest of that story with them. Be consistent. Show up. Call to check in. If you don’t see a regular attender at churches services, follow up with a phone call or home visit. People must be so woven into the fabric of a community that even when they journey deep into dementia they will not be left alone.

3. Listen for specific needs in each family. When we are present, offering support and care becomes more natural and specific. Whether they need respite care, help with meals, home repair, or someone to mourn with, it all begins with loving presence.

4. Develop dementia-specific ministries. These could include caregiver support groups, respite programs, pastoral care, and counseling for those in the early stages of dementia and for caregivers throughout the stages.

5. Support and partner with dementia-related nonprofit organizations in the community. Church-wide participation in an Alzheimer’s Association Memory Walk sends a powerful message that the church cares about people and the growing dementia crisis. Sponsoring a memory-screening day in partnership with the Alzheimer’s Foundation of America demonstrates commitment to reaching to those in need, inside and outside of the church.

6. Invite people into the life of the church and provide the opportunity to remember in worship and prayer. Churches can either design special services for people with dementia, or reconsider the structure of their existing services to accommodate the needs of people with dementia (lowering the volume, creating room to move about, providing easy exits, giving shorter sermons, using well-known songs and Scripture passages). Dementia-friendly churches give the opportunity to remember in song, prayer, and Communion by drawing on spared memory systems and the essential loves of each person in community.

Imagine if each family living with Alzheimer’s was connected with a group of people who covenanted to journey with them, learn about the disease, dig deeply into the family’s story, meet their needs, and help them connect their story to the hope of the gospel. Imagine how powerfully this might affect our communities if this same covenant were offered to families outside of the church.

A pastor wrote to tell me about his mother-in-law who had recently died with Alzheimer’s disease. Though she had been severely impaired from a cognitive perspective, she flourished in love and remembrance through the last days of her life. Each night before she went to sleep, she would sit on the edge of her bed and speak very specific and consistent prayers—she prayed for each of her children first, then grandchildren, and finally great-grandchildren, in order. It was clear that this was something she had done for many years prior to developing Alzheimer’s disease, and these thick habits had formed her to remember and love in a powerful way even though she had grown very forgetful.

As we anticipate the future dementia crisis, we also have the opportunity to reflect on our own lives, asking critical questions about how we would want to live if diagnosed with Alzheimer’s. What would I never want to forget? What practices would be part of my rhythm of remembrance? Who will help me remember?

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Physical therapy continued to be underwhelming. It felt like I’d never progress to walking without crutches, much less running. But, I stayed with it. I did what my PT said. Eventually I was given the green light to walk without crutches in the house, then outside, and soon I ditched them altogether. That was nice, but I still tilted to the right whenever I put weight on the right leg. The small muscle at the top of the femur (gluteus minimus, I believe) had taken a triple hit: (1) the initial trauma from the accident when it slammed into rock was pinched between bone and earth, (2) more trauma as the main access point for the surgeons to drill and drop a titanium rod into the femur, and (3) atrophy from extreme disuse while I couldn’t walk.

Six months after I broke my hip, I stood in my driveway wearing my bright yellow Hokas (Claytons - they never should have discontinued them). I’d finally been cleared to run. I’d endured nearly 200 days without any running. None. Not one mile. I missed it.

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My physical therapist permitted me to try nine minutes of walking followed by one minute of very light jogging. If it felt okay, I could repeat this two more times for a grand total of three minutes of running, three times per week. Again, my slow recovery and return to running was underwhelming.

But, it was a milestone and I was grateful. I was running again. Well, kind of. Technically, what I was doing might qualify as running, but it didn’t really feel like it. More like a hobble jog. Awkward, apprehensive movement. I had no confidence, no fluidity of motion, and certainly no feeling of exertion. Just slowly pressing on, waiting for that one minute to expire so that I could return to walking.

I couldn’t push the pace, not even a little, my physical therapist warned, otherwise I might re-injure my hip. I had to be diligent about holding back. Honestly, this wasn’t too hard because my hip muttered constant reminders with each step, a vague sense of tightness and a strange pulling sensation anytime I moved beyond walking. What I once enjoyed was now discouraging and uncomfortable.

But I kept at it. Several days at one minute running intervals were followed by a week of two minute intervals. Each increase was followed by a predictable round of soreness. I was just putting in time holding onto vague hope that someday it might get better. There might be better days ahead, but it seemed unlikely. Still, I only had two choices. Stop or keep going.

Several weeks later I crossed the 15 minutes running threshold. Half of each 30 minute outing was running and half walking, a surprisingly meaningful milestone. This felt like progress. On the following Wednesday I hit five, six, and seven minute stretches for 18 minutes. Although my hip was sore for an hour after running, I had very little pain the next day. I remember thinking maybe I had turned the corner.

More physical therapy after another setback

Recovery, like life, is not typically linear. There were setbacks along the way. I’d step off a stair awkwardly, sending a pain shooting up and down my leg. I’d sleep on my hip wrong and be sore enough that I couldn’t run that day. Stupid little things, I thought. Soon I found myself back in PT. Back to basics. Cut back on running, spend more time on hip exercises.

But I’d finally learned to build gradually - both in terms of time and intensity - the concept I’d failed to understand for years in my attempts to train for long races. I understood the idea in the abstract, but my execution was flawed because I always thought I could do more. I’d go farther and faster, often mixing both in the same training run. The long recovery from hip fracture was a much better teacher than reading an article in Runner’s World. If I wanted to go farther I had to go slower. I could not do both. I needed a pace that would let me keep going for the long haul, even if it was much slower than I used to be.

I’d also learned the value of the same core exercises that got me back to running. Basic band exercises that looked sort of worthless before my injury had become essential to my return to running. Surprisingly, I ended up with better strength and flexibility in my old hips than I’d ever had when I was younger. So, if I wanted to add more training over time, and maybe even race again, I’d need to do the work of supporting exercises so that my body could handle the training load.

Slow down. Stay consistent. Increase gradually. Do the little things.

I stayed consistent. I was militant about gradual increases, nothing crazy. Slowing down got harder as my hip started to feel better, but I mixed in walking intervals to enforce it. I started my return to running with one minute running for every nine minutes walking, and now I injected one minute of walking after every nine minutes of running.

I embraced this new approach to running.

Fifteen months after my accident, helicopter ride, and surgery, I stood among other runners waiting to start the Urban Bourbon Half Marathon in Louisville, KY. I don’t remember much about the race, but I will never forget how good it felt to be back. At one point, I ran past my wife and a friend who came to cheer me on, and I remember him saying, “I wish I looked that happy when I run.” I finished, and signed up for another half marathon the following spring.

Return to racing - Urban Bourbon Half Marathon

It had been a long road, but it wouldn’t be the last of the long roads I’d travel. Over the next year and a half I finished another half marathon and then returned to my favorite trail race - Louisville’s Lovin the Hills.

With each finish, I began to wonder if my dream of completing an ultra marathon might not be over after all.

More to come next week…

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A few years back some friends and I took a week-long mountain biking vacation in Switzerland. On the second day in the Alps, the four of us traveled to top of a large mountain by way of several ski lifts. A perfect day for an epic adventure. I sailed down the mountain, leaning hard into a twisty forested section of the trail, enjoying the challenging terrain surrounded by stunning beauty of snow capped mountains draped by lush green wild grass. I gained speed as I popped into an open area where the trail continued its descent. Without warning my front tire caught something on the trail and I was launched over the handlebars, feet over head and landed on my right side. My right hip took the brunt of the impact, bouncing off a rock embedded in the trail. I didn’t know if my hip was dislocated, deeply bruised, or something worse, but I knew my day was over. I was finished.

A few minutes later my friends caught up and found me lying alongside the trail. As I explained what happened, concern spread across the group. I asked them to help me get up. It took some effort to stand using just one leg, and when I finally put weight on my right foot, my hip crunched. I yelled in pain and quickly moved me over to on a large rock where I could sit down while they figured out what to do.

The author, unaware of lay ahead

We were on the side of a mountain miles from any roads in a country we’d never been before. We had no cell service. I sat on my rock while my friends fell into a panic. I don’t recall the details of the conversation anymore, but there was a lot of “what are we gonna do” followed by unrealistic ideas and tense arguments. The best option was for one or two of them to ride down the mountain to get help while the others stayed with me. But, we were hours from the nearest town. It would work but it would likely be dark by the time they returned with help. It would get cold and we still weren’t sure of the extent of my injuries. The tension led to more disagreement.

Our squabbling was interrupted by the unmistakable buzz of an approaching mountain bike. A moment later, a tall man on a downhill mountain bike emerged from the wooded section of the trail. His brakes screeched to a halt, and he stepped off the bike and asked if he could help. We explained our predicament. Crunchy hip. No phone service. No real plan for getting off the mountain before dark.

Turns out this man, this mountain biker, was also a mountain guide, which meant he had a satellite phone for emergencies like this. He wasted no time and made a couple of calls.

Soon we heard a faint but familiar sound in the distance. Wop wop wop. We exchanged glances. “Is that a helicopter?” The sound grew louder and louder, until a bright red helicopter with a white cross on the bottom flew over us. The chopper circled us for several minutes and our guide explained they were looking for a flat place to land. Minutes later they settled for dropping off two red suited men just up the mountain from us. They hurried down and one knelt beside me, yelling in his best English over the helicopter noise, “I am doctor. I will take care of you.” I recall feeling tremendous gratitude that someone like this existed on the earth. A doctor, medic, and helicopter pilot – all in one person - who spent his days rescuing helpless people like me.

Eventually the helicopter landed a short distance down the mountain from us, with part of its landing gear hanging off the side of the mountain, a long drop off below. I was loaded onto a rescue stretcher and strapped tightly in. The two mountain doctors and our mountain guide angel began to pick me up, but signaled they’d need one of my friends to help them carry down the stretcher down mountain to where the helicopter was waiting. Biking shoes aren’t ideal for situations like this, and I can still feel the small jolts and hear to quiet curses as my friend slipped every few feet while carrying me to the helicopter.

Soon I was loaded in, lying flat on my back, craning my neck to see what the pilots were doing. The helicopter slowly left the mountain, rising high into the sky high above the earth. In a moment, we tilted forward and I could see the full range of Swiss alps and the green valley below. It seems strange, given the circumstances, but I was stunned by the beauty of the where I found myself.

We landed on the roof of a nearby hospital where I waited in the emergency department for several hours before learning my fate. Unfortunately, I don’t speak German or French, so I had to settle for the terse explanation from the emergency room nurse, “there is fracture.” Exactly what I didn’t want to hear.

I’d broken my hip on a mountain bike in the Swiss alps. The trail wasn’t that technical; we’d done much sketchier routes in Moab, Utah without incident. But on the most epic trip, I’d caught a random edge wrong and was stuck. The doctors would not release me without surgery. It wouldn’t be safe to make a long trans-Atlantic flight with a broken hip. Of course, they were right, but the news hit me hard.

The next day Swiss surgeons inserted titanium hardware into my hip to repair what had been broken. This was a straightforward surgery, they said, and once the bone was set with the hardware, there would be little limitation. The Swiss medical team wanted me up and around as soon as possible. They started me in physical therapy. First, they got me walking with crutches, then transferring to the toilet, and finally climbing stairs - just enough to get me to the airport and through the trans-Atlantic flight home.

My first appointment back home wasn’t quite as positive. The orthopedist began by noting that I was young and healthy so I’d probably recover well, but I’d need to adjust my expectations for what I could do, particularly in regard to running. Adjusting expectations for myself had never been a strength of mine so I asked about when I could start physical therapy and get back to where I was before the accident. The orthopedist was hesitant but relented and scheduled my first PT appointment for the next week - just 10 days after surgery.

Before the accident I had been training for my first ultra marathon. This had long been a goal of mine, but I’d always get injured during training. In my youth and eagerness I’d increase my mileage too quickly and shortly thereafter would develop an overuse injury. The spring before we traveled to Switzerland, I felt like I had finally solved this. I’d slowly built my mileage and was feeling great.

I expected that first PT visit would be a big first step toward running, something hard and something like running. I would work. I would sweat. I craved the return of earned exhaustion, not the type that comes from sitting around doing nothing.

Instead, I had to sit through a lecture about not overdoing it. This was the message I needed years ago when I ramped up my run training too fast and ended up injured. But, I’d finally figured that out, I thought. Starting physical therapy with a lecture I no longer believed I needed wasn’t a great start. But I endured it, and then it was time to get moving. I was ready.

My physical therapist told me to lay on the therapy table and lift my right leg while keeping it straight at the knee. Sure, no problem, I thought, gotta start somewhere. My brain sent the signal, but nothing happened. I redoubled my efforts, grit my teeth, and tried to force the signal, as if some separate pathway might engage the muscles more effectively. Still nothing. No movement. “That’s okay, it’ll come,” he said. “Well, actually it is not okay,” I wanted to say, “I can’t lift my leg off the table.” But, I just nodded. “Let’s try your glutes. I want you to try to clench your butt cheeks together.” He paused and waited. “Hold it there if you can.” Nothing. I forced the signal but got nothing on the right. I could flex the left cheek like a champ, but the right seemed asleep, maybe even dead. I don’t know why, but this seemed more hopeless than not being able to lift my leg. It’s not that flexing one’s butt cheeks is all that useful in daily life, but it’s also so terribly simple. The images of pushing my sweaty body to the limit vanished. There was no mind over matter, no pushing through the pain, or quickly rebuilding what I had lost. Instead, I got a second lecture on not overdoing it.

There was no mind over matter, no pushing through the pain, or quickly rebuilding what I had lost.

“If you overdo it now, you’ll have problems that I can’t help you with.” He paused for effect. “It’s still really early, maybe too early, and there’s not much I can do with you yet.” We scheduled the next appointment two weeks out.

My family and friends were eager to hear how physical therapy went. They too wanted to see me on the road to recovery. I told them that my homework was to practice flexing my butt cheeks. This didn’t get much response. I was as deflated as my right butt cheek.

More to come next week…

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