Debbie Swindell

Sunday afternoons bring a lot of activity to a long-term care facility, but dementia’s calendar is not partial to the day of the week or the family it visits. When I walked through the double doors, I was forced to make an assessment: Has Lewy Body Dementia stolen another moment, hour, or day of life? Sadly, Dementia doesn’t recognize Father’s Day, and by this time, I found myself navigating an unexpected season.

How we live as we navigate unexpected seasons of life is the product of how we think. We must focus on “the things above;” (Col 3:2).

When a parent with memory loss asks the same question multiple times a day, is confused by the simplest of tasks, or can no longer recognize the faces of family members, I know patience can run thin. Caring for aging parents is complex and challenging, even under the best circumstances. But as you walk with those loved ones experiencing hard days, you might be tempted toward impatience and a lack of understanding. Loving with the patience and kindness needed when bodies respond more slowly and minds function differently is best when love cares and confronts with patience, compassion, and humility.

Love is patient and kind.

– 1 Cor 13:4

If you are caring for an aging parent, you have an opportunity to honor your mom or dad and deepen your personal relationship with Jesus Christ. Pray often. And remember, unless you practice being still before God, you will forget who God is. Your mind and your heart need the consistency of truth being poured in so you might, in turn, live that out. So, amid the pressures, you must ensure you don’t forget that He is your “refuge and strength, an ever-present help in trouble” (Psalm 46:1, 10). God promises provision and comfort (Psalm 77).

This is when you need to practice spiritual disciplines – Spiritual disciplines are those practices found in Scripture that promote growth among believers. They are habits of devotion and of experiential Christianity that have been practiced by God’s people since Bible times:

1. Biblical Meditation
2. Prayer
3. Bible Journaling
4. Bible Study
5. Bible Reading
6. Worship
7. Fellowship
8. Service

Practicing spiritual disciplines will allow God’s word and people to serve as an anchor. They help keep us grounded, connected to what matters most, and able to cope with life’s challenges. They remind us of what gives us meaning in life and remind us of hope for the future.

Caring for an aging parent is on-the-job training that can feel like a roller coaster with its ups and downs. The most challenging days with Dad were when he was going for a doctor’s visit or shopping. One day, I lost Dad at Target and found him wandering through the parking lot. On the same day, he tried opening the car door while we were on the interstate. Being reasonable and expecting his behavior to respond rationally did not work. I was expecting too much from a dementia patient. I had to learn that simple instructions and clear statements about what has happened and what will happen to get the best results. The one thing I did know was the effects of his disease had worsened, and our outings would be limited. How can we show patience and kindness in times like these?

• Start by adjusting your expectations of your loved one to fit their pace of life and ability for understanding.
• Consider the losses of their independence (even when mild) that are particularly impacting them in their daily lives. 
• Always use words of dignity when addressing them. They are image bearers.
• Slow down. Take time to listen and seek to understand the logic (or lack of) why they are doing what they are doing.
• Remember, this is an adult and not a child. Gently present them with truth when confronting wrong behavior.

All of this requires sacrificial attention and thoughtfulness on the part of the caregiver. We can worship God by our obedience to Him in loving others well.

I appeal to you therefore, brothers, by the mercies of God, to present your bodies as a living sacrifice, holy and acceptable to God, which is your spiritual worship. Do not be conformed to this world…

– Rom 12:1-2 

Seek out the most appropriate health care for your loved one. However involved you can be, it is right and pleases the Lord. After all the care parents give to their children, children should look at it as returning the favor and to refuse is denial of the faith (1 Tim 5:8). It might become necessary to have written communication with the physician to convey details you would not want to discuss in front of the patient. I found this to be helpful so we could avoid agitation or an upset during the appointment time. In the midst of working through the dementia diagnosis with Dad, he was diagnosed with Glaucoma and had lost all peripheral vision. In addition, he had cataract surgery. In hindsight, there is a possibility that effects of the anesthesia caused Dad’s hallucinations to become ever more vivid. As they say, hindsight is 20/20.

Let love be genuine. Abhor what is evil; hold fast to what is good.

– Rom 12:9

As Dad’s Parkinson’s slowed his movement and his memory declined, his safety, as well as the safety of others, was at risk. Dementia became the thief of independent living. Dad’s transition was a sad day and one I will never forget. Perhaps it’s because Jim’s personality was larger than life.

It would have been a typical Sunday morning when Frank Sinatra, Nat King Cole, and Tony Bennett would come to life. Dad would sing their tunes with a silly grin, and I could still hear the sound of his loafers as he danced across the kitchen floor. Jim could be fun, but he was also a proud man who refused to admit weakness. He put too much stock in Dr. Oz, and his exercise routine at 60 looked more like a man in his 20s. He referred to himself as “Superman,” and I don’t think he thought twice about his own death. But on that day, when he had a new residence where we walked down the hall and into his room, the reality was that Dad’s world had become much smaller. All the superfoods and gym equipment would no longer be a part of his world. However, it wasn’t long before I heard talk from the nurses that Dad had announced he was running for sheriff. That big personality was shining through despite his disease!

God’s Word calls us to compassionate care for our parents as they age, and in that, God will help us as we seek to honor and help them. If your loved one enters 24-hour care, you will want to evaluate not only their changing needs but also your involvement in their care. It took a while for me to learn to trust the professionals, but that time eventually came. How can you learn to trust the staff? Develop good rapport.

• Make a good introduction. Get to know the nurses and call them by name.
• Ask engaging questions both in person and by phone. Show genuine concern for your loved one by showing up at different times of the day and early evening. Have frequent conversations (in person or by phone) with your parent’s nurse regarding their routine sleep, meals, and overall health.
• Actively listen. When the staff talks, listen.

And then, just simply be available. Be available to listen. Be available to talk. Be available to serve.

Medicare became my second language. I recall an ongoing conversation with their representative while sitting under an umbrella on the beach. Oh, I didn’t call them. They reached out to me. But in that moment, with sand between my toes, I was reminded that dementia doesn’t take a vacation. Sometimes, caring for another person can seem like a burden when, in truth, it is a privilege. I believe that if our parents do not care for us well or our relationship is strained, then caring for our parents becomes an opportunity to demonstrate God’s unmerited love and grace. Our obedience becomes an opportunity to serve others, to serve God, and to give him glory.

Bear one another’s burdens, and so fulfill the law of Christ. For if anyone thinks he is something, when he is nothing, he deceives himself. But let each one test his own work, and then his reason to boast will be in himself alone and not in his neighbor. For each will have to bear his own load.

– Gal 6:2-5

Plan outings as long as your loved one is able. Besides an occasional doctor’s visit, my last outing with Dad was on a sunny afternoon. We shared lunch before we sat next to the lake. I remember he asked for BBQ, and I was sure he got the best in town. With a view of the mountains and God’s splendor in creation, I presented the Gospel message. Dad responded. He assured me that he shared my belief in a Creator, but he denied Christ as we sat on that park bench. His words: I just can’t believe all that Jesus stuff still weighs heavy on my mind. That’s my bench now. It’s where I go when I need to clear my mind of life’s clutter and focus on what matters for eternity. I often consider the brevity of life and my very different response to the same Gospel message I presented to my Dad.

If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him.

– Jas 1:5

When a loved one receives a diagnosis, in most cases, it is not as sudden as a heart attack or a stroke. While things may appear grim, you have been given the gift of time. Use that opportunity to reconcile differences, tell them about Jesus, and tell them how much you love them. The last thing you will want is to live with regret.

And I set my heart to seek and search out by wisdom concerning all that is done under heaven; this burdensome task God has given to the sons of man, by which they may be exercised. I have seen all the works that are done under the sun; and indeed, all is vanity and grasping for the wind. What is crooked cannot be made straight, And what is lacking cannot be numbered. I communed with my heart, saying, “Look, I have attained greatness, and have gained more wisdom than all who were before me in Jerusalem. My heart has understood great wisdom and knowledge.” And I set my heart to know wisdom and to know madness and folly. I perceived that this also is grasping for the wind.

– Eccles 1:13-17

One way to express loving care for an aging loved one is by asking questions about their life:

• What were their greatest joys in life? Who did they share them with?
• What were their greatest disappointments? How did they move past those?
• What would they want you to know? How can you best learn from their life experiences?

Sometimes, I used a voice recorder with Dad to capture family stories. We can research the names and dates of ancestry, but the stories get left behind. I highly recommend voice recording or note-taking for families of dementia patients.

Write down for the coming generation what the LORD has done, so that people not yet born will praise him.

– Psalm 102:18

A person with dementia may find it increasingly difficult to communicate, and so it was with my dad. Any patient may have trouble recalling certain words, forgetting parts of a conversation, or becoming agitated and confused. These times require us to put off the ways of our hurried world and take the time to listen well. Listening well requires we enter their world, and carefully articulated conversation becomes an opportunity to serve. A sense of love, care, and others-mindedness needs to be put on.

If one gives an answer before he hears, it is his folly and shame.

– Prov 18:13

In every season of life, it’s essential that we know God and remember who He is. Our response to all of life is shaped by our view of God. We can learn to live each day, leaning into Jesus while gaining strength from the truth he has given. His Word and people are sustaining factors in how we think and respond to caregiving. In Part Three, I will wrap up my journey with Dad as we look a little closer at how caregivers find their place in the lives of their loved ones. We will consider our identity and what that might look like when our loved one’s life comes to an end.

For a more comprehensive look at spiritual disciplines, see Don Whitney’s book Spiritual Disciplines for the Christian Life or Habits of Grace by David Mathis. For an easy read on the doctrine of God, see Jen Wilkin’s None Like Him.