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Blessed are the caregivers

For they will be given care

*****

Although we don’t get a diploma and cap, many of us graduate from the role of caregiver when our youngest child spreads their wings and leaves our home.

For Ed and Alice Hoogerdyk, their caregiving journey began in 2000, when God blessed them with their one and only child: Zach. Two decades later, shortly after Zach spread his wings and became engaged to a wonderful girl named Megan, a sudden illness and anoxic brain injury changed everything. Ed and Alice were called back to full-time caregiving.

Ed and Alice aren’t alone. Ed shared that 160,000 Canadians sustain brain injuries each year and a quarter of older adults are family caregivers, with projections that this will increase significantly in our lifetime.

Although we may have other plans for our lives, the LORD’s plan is sovereign. We then must decide whether we will run alongside the Zachs in our lives, or run away from them.

Zach ran hard as a little guy. He’s running just as hard now.

A string bean becomes a man

Ed and Alice were married on August 1st, 1998. Ed was a school teacher, and after they married, took a position in Alice’s hometown of Carman, Manitoba. On July 23, 2000, God blessed them with the joy of their life: a healthy boy whom they named Zach. Two years later, they moved to Calgary as Ed took on a new role as school principal, and they have made that city home since then.

Zach was shy. “He didn’t leave my side,” said Alice. She tried to make him more social, but he preferred to stay close and sit on her lap. Someone from her church reminded her to treasure this time, because it doesn’t come back. “He wasn’t Mr. Popular in the class. You could tell he was an only child,” she added.

But he had a caring heart, looking out for kids who were left out. This carried on as he became a teen and then a young adult. He despised cliques and was intentional about spending time with young people on the margins. Although he wouldn’t have put the label on himself, Zach was a caregiver.

As he grew, so did his love for sports, particularly ball hockey, and then running. He got his love of running from watching Ed. “He came to all my races, or most of them,” said Ed. “The next thing you know, he starts running. His goal was to beat my best running times.”

As a young adult, Zach got his friends off their couches, organizing activities like skiing and, you guessed it, running races.

He didn’t know what he was going to do as a career until he met a gentleman at a school career fair who pointed him to the masonry trade. “He went for an interview, and as he drove off all the other guys at the masonry industry laughed and said, ‘That kid ain’t gonna last a week. He’s such a little string bean,’” Ed shared. But Zach ended up flourishing in the trade, to the point that, when his boss had to downsize his crew from 40 to 5 not long after hiring him, Zach made the cut.

Ed reflects that this was a stage where the whole family was thriving: Alice was enjoying her job as a controller at a construction and building supply company, Ed was experiencing a “whole new lease on life” with a position as Grassroots Director of ARPA Canada, and Zach was flourishing in his new career as a brick layer, with a boss commenting that “people like you come only once every 25 years.”

That is also when Zach met Megan at a young adults’ conference in Calgary on a February long weekend. The two clicked, and in due time they were engaged, looking forward to a life together.

But the LORD had different plans.

From full of life to life-support

In March of 2024, Zach made a trip to Megan’s hometown of Winnipeg. When he left, he had a really sore throat and was losing his voice. Ed encouraged him to go to the doctor, but Zach didn’t think it was necessary.

“We dropped him off [at the airport], and I still have the vision of him walking through the doors, pulling his little carry-on,” recalled Ed.

That was the last time they saw him walking.

Zach spent the weekend at the home of Ed’s brother and sister-in-law, but he wasn’t getting better. On Monday, Megan took him to a clinic, but by that point he could hardly walk out of the house. From the clinic he went straight to critical care in the hospital, and immediately needed assistance with his breathing.

At this point, Alice was at home in Calgary, unaware of any issues, and Ed was just starting a two-week speaking tour in southern Ontario. Megan let them know that Zach was checked into the hospital, and Alice was able to talk with Zach on the phone. He told her he was all right, would likely stay overnight, but would be just fine.

An hour later a phone call came that Zach had just had a cardiac arrest. Alice immediately went to the airport and was able to catch a flight to Winnipeg because it was delayed. Ed dropped everything and joined her at the hospital soon after. The news they received wasn’t good. “The doctor put his hand on my shoulder and Megan’s and told us to prepare for the possibility that Zach may lose his life.’”

Ed and Alice later learned that Zach was going through a combination of strep pneumonia, influenza A, septic shock, bacterial infection, and then the cardiac arrest.

The following hours were a blur of medical care, as the team worked hard to get Zach’s temperature down and his oxygen up. They packed bags of ice all over his body.

“I still sometimes do it where I go to my phone and scroll up to the 2024 pictures,” shared Ed. “When you look at March, I’m at this gig and that gig. It’s all go, and lots of hype, and all of a sudden there’s a picture of Zach laying in this bed.”

“Your whole life perspective changes in a second,” added Alice. “You hear stories from other people. You don’t know what it’s like until you have it yourself.”

Although their life changed in a blink, their Foundation didn’t.

“It’s amazing. Amazing how the Lord held us up through all of that,” Alice testified. She proceeded to share how they were surrounded by loving care from family, friends, and the church community. “It was always just at the right time to build you up again.”

The nurses and others asked “how are you handling this?” To this they replied: “Only by the grace of God.”

In the proceeding days, weeks, and months, as Zach’s life hung in the balance, there were points when Ed and Alice asked the LORD to spare him from further suffering and take him home. Zach was still on the ventilator, intubated, and endured multiple instances of septic shock.

Eventually his hand was amputated, followed by both his feet. He hadn’t spoken since the cardiac arrest, and it was difficult to know the extent of his brain injury and how aware he was of what was happening around him. But when they wheeled him off to surgery to have his feet amputated, Zach was very emotional.

Through this journey the family kept loved ones updated through a blog, titled “Running with Zach.” It didn’t take long before countless people from across the country were journeying with them, reading the health updates, meditations, and accompanying Scripture verses, praying for Zach and his loved ones.

A new calling

He won’t let go of his mama!

It wasn’t just Zach’s life that changed, Ed and Alice were given a new calling: caregiver.

Ed knew very quickly that he couldn’t carry on with his job, as it required him to travel regularly. He recalled calling his boss and informing him that “it’s obvious to me that this is my new calling. It’s as simple as that.” Alice, meanwhile, was able to carry on with her bookkeeping work, as it could be done remotely.

Ed admits that they went through some dark valleys in the weeks and months following the hospitalization. “But when the time came, we had to be up at Zach’s unit and be there for him.”

And just like the early years when he needed his mom close by, Zach needed them in the same way now. “If he needed to get changed, or any kind of care, he needed one of us there,” shared Ed. When Zach no longer received one-on-one medical care, he needed Ed or Alice to be close by. “So, we took turns sleeping in his room. And he definitely needed it. He would look, to make sure I wasn’t leaving, then he would lay down and sleep.”

When Zach’s health stabilized, it took Ed and Alice some time to find a good care home for their son in Calgary, as some of the care homes for “young adults” (under age 55) were sketchy, filled with rough music, rough language, and even drug trading.

A successful physio session sitting up in the prone position.

The Hoogerdyks found something special at AgeCare Seton, particularly with the staff. “If you want to learn about care from a culture, look to the Filipino culture. These people get care. They just live care. Young or old,” explained Ed. “They love Zach and a lot of them go to church. They talk about God and faith.”

Zach also receives great care from the rehabilitation he is getting at the Association for the Rehabilitation of the Brain Injured (ARBI). “It is a great place. The team is very, very caring,” Ed commented.

“He’s gained a lot of muscle back,” Alice said. “I can’t put my fingers around his arm anymore. He can ‘beat us up,’ and he takes great joy in that.” Lately, Alice has been challenging Zach to give better hugs, and he squeezes her hard, “laughing his head off.” “That’s not good, Zach,” she responds. “That is not loving your mother,” she jokes and then Zach responds with a laugh.

Although he remains non-verbal, Zach is now using a tablet to communicate with his caregivers.

“The best time of each day is 4:30-5:00, giving him supper, until we leave between 8:30 or 9:00,” explained Ed. “It is almost as if the family memories are all back. You can say certain sayings we used to say at home and he starts to laugh. So he is in a good mood, with lots of laughs.” They always read a devotional together and pray before leaving for the night. “He is dialed in when you’re reading. I try to keep my finger on the words.”

He is also able to make it to church some Sundays. “He is listening,” Alice explained. She gave an example of the pastor sharing a one-liner joke and “Zach was even laughing without prompt, where it’s like he sort of gets it.”

Blessed is he who considers the poor

Having a good laugh with his pappy.

Ed and Alice testified that their loving Father has been caring for them every step of the way. “God gives you strength for every day. Not for the next year, not for the next…. No, he gives it for today. It is a real thing,” emphasized Alice.

Both Ed and Alice see God’s hand particularly in how He prepared Ed for this new role with his recent career. A lot of Ed’s work was related to protection for the vulnerable. The transition was from advocating for this protection, to actually providing it themselves.

But the work experience had deeper application. It didn’t take long and Ed was convicted, particularly through a family member, to advocate for other caregivers through setting up a platform called “Running for Zach”. “We aren’t the only ones doing this. There is a brain injury every three minutes in Canada and it is the leading cause of disability and death in adults under the age of 35. There is a real, real need.”

Ed pointed particularly to Psalm 41:1: “Blessed is he who considers the poor.” He explained that the word “poor” means much more than those without financial means. It is the vulnerable, the weak, those who can’t help themselves.

“To consider the poor means to pay close attention to them and then to spend significant time and energy changing their lives.” Always one for a quip, Ed proceeded to connect this Psalm to a quote from Dr. Seuss: “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not!”

This goes beyond the Zachs of the world. “We are all vulnerable in one way, shape, or form. We’re all weak. The church should be a haven of caregivers and a haven for caregivers. It should be caregiving central.”

I asked Ed and Alice how we, as a church community, can better care for caregivers. Ed said the first step is to overcome the fear of approaching and speaking with the caregivers. “It’s fear. Fear that you are going to say something stupid, fear that you are going to cry. If you are exiting church, don’t try to find a different route to bypass the caregiver.”

“Quit stewing too much over ‘I’m not sure what to say’ or ‘I’m not sure what to do.’ Doing something or saying something is better than nothing.” He added that “if you can go to the fellowship hall and talk to somebody about your fishing trip the previous week, surely you can go to a caregiver and find out what’s going on in their lives.”

Ed and Alice are grateful to be part of a church community where the leadership led by example in this regard, with an elder or deacon coming to visit them every week. Ironically, it has often been the elder or deacon who leaves feeling lifted up.

Kion Foundation

First trip back to the mountains since the injury.

Ed is now working on building a charitable organization called “The Kion Foundation.” Kion means pillar, and the foundation hopes to be a pillar of hope for families navigating acquired brain injuries.

Beyond awareness, the goal is to help fill the care gap between a hospital discharge and home, providing things like centralized therapy and support spaces for caregivers to go to and receive help.

Ed shared that it would take 2.8 million full-time equivalent workers to replace the 5.7 billion unpaid hours that family caregivers provide each year in Canada. That is a lot of people, including Christians, who are humbly serving outside the medical system. They need support.

The Kion Foundation’s board includes Ed’s brother-in-law, Ed Tams, an entrepreneur, as well as Dr. Stephen Neal; Alisa Lieuwen, whose brother was diagnosed with a rare neurological condition that resulted in him becoming quadriplegic and non-verbal; and Wanda Knol, a business owner and volunteer serving the vulnerable.

Designed to be a burden

Although we can look forward to a world without the effects of sin, we can trust that God has a good purpose for where we find ourselves today. That includes the burdens He gives us.

Ed quoted pastor and theologian John Stott: “We all are designed to be a burden to others. You are designed to be a burden to me, and I am designed to be a burden to you.” Instead of doing everything possible to run from these burdens, we can take to heart our LORD’s calling to “carry each other’s burdens and in this way you will fulfill the law of Christ” (Gal. 6:2).

Zach isn’t running like he used to. But he is running the race marked out for him.

Running alongside him, we can look forward to crossing the finish line, where we will not just run, but soar like eagles.

“Let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith.” (Heb. 12:1-2)

“Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” (Is. 40:30-31)

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When we have to parent our parents: help and hope for caregivers

Paul pulled the car into the driveway. “Okay, Dad, now stay there and I’ll come around and help you out of the car.” “Okay.” Paul put the car into Park, turned off the lights, and opened the door. He rounded the back of the car planning to open the passenger side back door to retrieve Dad’s walker. But there was Dad, door open, lying face down in the gravel already. Paul was not amused.  **** Aging parents want to be independent. They want to continue living the way that they always have. They don’t want any help from strangers, and they certainly don’t want to give up their beautiful home and move into “one of those places.” What they want...may be impossible. What they have to choose between...is sometimes a choice too impossible for them to make. Dealing with one’s aging parents is like walking barefoot down a long series of gravel roads branching in every direction. It’s painful, uncomfortable, and confusing. Sometimes suddenly, and sometimes over a period of a couple of years, offspring are thrust into the position of having to parent their parents. It’s a role reversal that doesn’t please anyone. **** “You are NOT my mother - I am YOUR mother!” Mom yelled angrily. “I know that,” Susan said. “Then STOP bossing me around all the time!” Mom shouted. Susan sat down hard on the dining room chair and put her head in her hands. “You need to take your medicine now, Mom. Please?” **** The coming months, or years, will at times strain the relationships between the siblings, their spouses, and the aging parents. Who will help them? How often? Should someone quit a job to do so? Cancel a vacation? Who will pay the bills? Who will make the decisions that they won’t like? For those who know very little about medicine, caregiving, diseases, Alzheimer’s, or even the best way to deal with a doctor’s visit, it may be even harder. In 2018, it’s very common to hear both the aging and their younger family members say that parents really don’t want to live any longer if they cannot live independently as they used to. They would rather die. They don’t want to be a burden. Our culture has become so health-and-happiness oriented that the Right To Die (or euthanasia) movement grows stronger every year, not only in the Netherlands but here in Canada and the United States as well. It seems that the general public can see no purpose for an imperfect human being to exist. So when is it time to step in and step up? Each case will differ but according to one doctor, Mark Sawka, everyone always waits too long to make their decisions. Usually, by the time the senior citizens move into independent living, it should have been done sooner, and by the time they move to assisted living, they would have benefited greatly from going there sooner than that. We all want to maintain the status quo, keeping life as much like it has been as possible. Many older folks do not want to “face the music,” accepting their new limitations, and being grateful for what they are still able to enjoy. **** “Mom, you have fallen several times lately. We are worried about you living here in this house by yourself. Please...you can come and live with Susan and me, or you can go and live with Betty and Randall. Either of us would be happy to have you,” Paul said gently. “Oh, no, I could never do that. I won’t be a burden, and I don’t want to move away from my home.” Paul and Betty exchanged glances. What Mom didn’t understand is that since her children lived 3 hours away, she was being much more of a burden by living in her own home than she would be living with one of them. **** “Dad,” Susan began. “Your balance is not good. Your eyesight is nearly gone, you need constant help with your hearing aid, and to be honest, you need help with everyday things like bathing and dressing.” “Naw, I don’t need any help.” “Yes, you do, Dad.” “Mum can help me, can’t you, Mum?” Mom nodded her head, but had a weary and wary look about her. She was 82, used a walker, and took about 15 prescriptions a day, mostly to deal with back and shoulder pain. “I can help you if you stop being so stubborn!” Mom said. Susan tried again. “You either have to move into an apartment where people can help you, or you have to have people come to your house and help you here.” “I don’t want anybody coming into our house. I don’t need any other help.” “What if Paul and I moved in with you?” Susan offered. “No. Now you know that wouldn’t work. We would all end up fighting with each other. It’s hard enough for two of us to decide things, let alone having four opinions in the house,” Dad said. “Okay, then can we get some help through the Senior Citizens agency in town?” “We’re staying in our own home. And we don’t need any help,” Dad said with finality. Three lessons to learn  The first lesson to learn is that the best way to make your way through it is to view caregiving as a ministry given to you by God, instead of as the burden that your parents never wanted to be. There will have to be a lot of Scripture reading and prayer for patience and guidance. In her book entitled Ambushed by Grace: Help and Hope on the Caregiving Journey, Shelly Beach says: When I began caregiving six years ago, I did not expect to embark upon a journey of grace. I expected to learn of service and sacrifice, to explore new facets of patience and tolerance, love and forgiveness, but I did not expect to be changed at the core of my being. I did not know then what I know now — that caregiving, by the power of God ’s grace, can be a work of redemption powerful enough to reverberate into the hearts of those around us…. To make caregiving simply a task is a distortion of its purpose; rather, it is a divine appointment, a redemptive encounter, and an act of worship…. It wasn’t until I learned to relinquish my stride to His, to abandon control of my direction, and to match the rhythm of my pace to His that I discovered He was carrying me like a child standing upon her father’s shoes, clinging to his legs as she stared into his face, waiting for the next step. The second lesson is that none of this is going to be easy. It is very difficult to explain to your dad that he simply must let a staff member (read: stranger) help him to bathe, or tell your mother that she definitely must quit driving. It is difficult for siblings who have grown apart to mesh their ideas and agree on a plan of action. It is exhausting to add to one’s already busy work and home schedule the long days of research, packing and moving, doctors’ visits, cleaning, searching for lost dentures and wedding rings, meetings, and regular visits to these loved ones. **** “Mom, you drove 15 miles past your apartment building the other day and couldn’t find your way back. And last week you turned the wrong way and ended up going ten miles in another direction. You need to stop driving and give up your car.” “I need my car. I can still drive just fine.” “What if you have an accident?” “If I die I’ll go to Heaven, and that’s fine with me.” “Yeah, well, what if you crash into another car and hurt a woman and her baby, what then?” “I haven’t crashed into anybody and I’m not going to.” ****             The third lesson is that there is a lot of critical information that one or more of you must learn. Information such as: What is your parents’ financial situation? Is Assisted Living an option (at anywhere from $3000-10,000 per month!) or will they move in with someone or have someone move in with them? Or, how do you find an affordable assisted living apartment that will give your rapidly declining father all of the care that he requires and let your parents live together in more than one room? How many days will the insurance company or social benefits pay for your parent to stay in rehab, and will he be released earlier if he doesn’t cooperate in physical therapy? When should you contact the patient advocate in the hospital to intervene when your parent is not being treated well, discharged from the hospital as promised, or given the correct medication? How do you sign up for financial assistance from the various government or social agencies? For example, in the U.S. the Veteran’s Administration may send a monthly check if your parent served in the Armed Forces during a war. This research and application may take many hours, but it is well worth it. How do you accurately and safely hook up an IV with Vancomycin antibiotic to a port in your mother’s arm every single day for 8 weeks, or give your father his daily insulin shot? What is the purpose of the medications that they are taking? Four recommendations I will leave you with four recommendations. The first would be to read. Read books such as the aforementioned book by Shelly Beach and The Overwhelmed Woman’s Guide to Caring for Aging Parents, by Julie-Allyson Ieron. You may also find encouragement in John Calvin’s Golden Booklet of the True Christian Life. Second, contact people who have gone through this and ask a multitude of questions. Ask for one of them to be a prayer partner. It’s helpful if you know someone in the medical field who is able and willing to be consulted on occasion. Third, it's very important to involve all siblings in decision-making, even those that are reluctant to participate. They will have opinions. If possible, encourage everyone to be involved in the care, whether it is hands-on, financial assistance, regular visits, letters in the mail and regular phone calls, doing research online, shopping, or driving a parent to one of many doctors’ appointments. It is often the case that some step forward quickly and others hang back hoping not to have to do very much. Clear communication, understanding on all sides, and forgiveness may prevent anger and bitterness from occurring. Finally, encourage your parents in their faith in God as they live out these difficult days, and give them love in every way that you can. Remember that these loving parents cared for you when you were young, and it was not always convenient, exciting, or fun to do so. This ministry may go on for numerous years, but someday they will be gone, and you will miss them. This is your opportunity to be used by God to serve them. Conclusion Shelly Beach writes: Caregiving teaches us to see what is precious and valuable in life. It teaches us what it means to live out commitment and honor. It gives us the opportunity to love someone better who we may have struggled to love in the past. It gives us the opportunity to demonstrate God is sufficient and that He is a God who redeems. Caregiving is the hardest work we will ever do because it demands that we love as Christ loved, sacrificing our time, our jobs, our commitments, our friendships, and our health, while standing against the tide of culture.…It is a call to suffer, to sacrifice, and to serve. It is a call to abandonment and tears, to hardships and difficulties. It is a glorious call to be conformed to the image of Christ and join the God of the universe in ministering grace and mercy to one of His image bearers. There will be difficult terrain ahead, and you will likely feel fear and dread about walking this road. Remember that God is sovereign and in control of all parts of life, including this next part which can not be avoided. This, too, is part of His will. Unlike our culture around us, we who follow Jesus Christ can know that God has promised to care for us all of our lives – even as we watch our parents get old and feeble, and then walk that path ourselves. If He didn’t have a purpose for them to still be here on the earth, He wouldn’t have left them here. Your caring for them, in whatever way you are involved, is a part of that purpose. Sharon L. Bratcher is the author of Soup and Buns: Nourishment From God’s Word for Your Daily Struggles which is available by emailing [email protected]....