Lessons I’m Learning as an Alzheimer’s Caregiver
“Charity suffereth long, and is kind… Beareth all things, believeth all things, hopeth all things, endureth all things.” — 1 Corinthians 13:4, 7
I’ve read those words many times over the years. I’ve preached from them, used them in weddings, and tried to live by them in my marriage. But Alzheimer’s is teaching me something new about them.
Sometimes love is patient means answering the same question again.
Sometimes love is kind means controlling my frustration when something I need has disappeared.
Sometimes love always perseveres means getting up tomorrow and learning how to do a little better than I did today.
My journey living with Alzheimer’s has been a roller coaster of emotions. I’m not the one with the disease. My wife, Helen, is. But Alzheimer’s is changing both of our lives, and one of the hardest lessons I’m learning is that I have to change too.
I love my wife dearly and want the best for her. That means she needs the best from me.
That’s not always easy.
Each day is a learning experience. In fact, one reason I’m writing this blog is not only to help you, my reader, but to teach myself. As I research Alzheimer’s and caregiving, I’m discovering things I need to do differently—things that can improve both the care I give Helen and the relationship we continue to share.
Sometimes loving someone with Alzheimer’s means learning a new way to love the person you have loved for years.
Staying Connected Through Everyday Life
Much of our life together still revolves around work here on the farm.
We pick blackberries together. We clean up the pears that fall from the trees. We harvest the garden. We paint the house and do the ordinary chores that have always been part of our lives.
Helen can still do many of these things, but I have to remind her what comes next.
When we’re picking blackberries, for example, I may tell her, “Don’t pick the red ones. Just pick the black ones.” A few minutes later, I may need to remind her again or show her which berries to pick.
She loves being with me, and I love having her beside me. I’ve come to realize something important: getting the job done isn’t really the most important part anymore. Being together is.
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The Alzheimer’s Association encourages caregivers to focus on activities a person can still enjoy and to break those activities into simple, manageable steps. Familiar chores—even sweeping, gardening, folding clothes, or helping prepare food—can provide purpose and connection.
That describes what Helen and I are doing on the farm.
The berries may need picking, but the greater harvest is the time we still have together.
The Alzheimer’s Association’s suggestions for activities encourage caregivers to concentrate on what a loved one can do instead of continually confronting what has been lost.
I’m trying to learn that.
When Simple Instructions Aren’t Simple Anymore
One of my challenges has been learning how specific my instructions sometimes need to be.
Recently, I asked Helen to take the garbage from the little trash can near the table and put it in the kitchen trash container.
That sounded perfectly clear to me.
Helen got a trash bag.
I realized the problem wasn’t that she wouldn’t do what I asked. My instructions required her to connect several steps that seemed obvious to me but weren’t obvious to her anymore.
So I broke it down.
“Put the trash from the little can into this bag.”
She did.
Then I told her, “Put the bag in the tall white trash container by the stove.”
She did that too.
The problem wasn’t willingness. The problem was communication.
The Alzheimer’s Association’s communication guidance recommends speaking slowly and clearly, asking one question at a time, and giving clear step-by-step instructions rather than lengthy requests. It also suggests demonstrating a task when words alone become confusing.
That’s a lesson I need to remember.
When someone can no longer follow the whole road, love gives directions one turn at a time.
When Frustration Takes Over
Keeping a loved one involved may require changing the task without taking away the joy of helping.
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This is probably where I struggle the most.
Helen wants to help when I’m cooking, baking, or canning. Sometimes I’ll let her fry hamburger while I tell her what to do next. Most of the time, that works well.
But baking and canning are different.
I’ll be following a recipe, turn around, and discover that something I need is gone. It might be a bowl. It might be an ingredient. It might be one of the tools I’m using.
That’s when my frustration can rise quickly.
My first instinct may be, Why did you move that? I need it.
But I’m learning that this is where I have to change.
The National Institute on Aging recommends that caregivers avoid arguing, try not to show frustration, offer reassurance, and redirect the person’s attention when necessary. Their guidance on managing behavior changes reminds caregivers that changing our response can make everyday life less stressful for everyone.
That’s easy to read on a computer screen.
It’s harder when you’re standing over a pot of boiling jelly looking for the ingredient that was sitting beside you thirty seconds ago.
But that’s exactly when the lesson matters.
This is where another Scripture speaks directly to me:
“…let every man be swift to hear, slow to speak, slow to wrath:” — James 1:19
That’s good advice for anyone. For someone caring for a loved one with Alzheimer’s, it can become a daily discipline.
I cannot control what Alzheimer’s is doing to Helen’s memory, but I can work on controlling how I respond to it.
Change the Environment Instead of Fighting the Disease
One practical lesson I’m learning is to change the environment rather than expecting Helen to remember what she shouldn’t move.
When I’m baking or canning, that may mean putting away everything except the ingredient I’m using at that moment. I can pre-measure ingredients and bring them out one at a time. Important utensils and ingredients can stay out of sight until I need them.
And Helen can still help.
Instead of asking her to follow several steps of a recipe, I can give her one safe, meaningful job: stir this bowl, snap these beans, wash these vegetables, or hand me this utensil.
The Alzheimer’s Association specifically recommends helping with the difficult parts of a task while allowing the person with dementia to participate in what he or she can still do.
The goal isn’t to push Helen out of the kitchen. It’s to find a safer and less frustrating way for us to share it.
Kitchen safety becomes increasingly important as Alzheimer’s progresses. The Alzheimer’s Association home-safety guide recommends evaluating the kitchen for hazards, securing medications and potentially dangerous items, and considering safeguards for appliances as abilities change.
Sometimes caregiving isn’t about asking our loved one to adapt to our world. It’s about adapting the world so they can still be part of it.
When Things Disappear
Misplaced objects are another common challenge.
A person with Alzheimer’s may put something somewhere that makes perfect sense at the moment and have no memory of doing it later.
The National Institute on Aging explains that rummaging and hiding items are common Alzheimer’s behaviors. Their suggestions include keeping valuable or important objects out of reach, learning the places where items are commonly hidden, and even checking trash containers before emptying them.
That last suggestion caught my attention.
I can imagine spending half the day searching for something that went out with the garbage. More importantly, when something disappears, arguing about who moved it probably won’t bring it back. I need to search for the missing object—not for someone to blame.
Alzheimer’s can turn a missing object into an argument, or we can turn it into another opportunity to practice patience.
Don’t Argue With a Memory That Isn’t There
This may be one of the hardest adjustments for any caregiver.
We remember what happened.
Our loved one may not.
We know where something was.
They may sincerely believe it was somewhere else.
Trying to prove we’re right can increase confusion and anxiety without accomplishing anything.
The Alzheimer’s Association advises caregivers to avoid criticizing, correcting, or arguing. Instead, listen to what the person is trying to communicate and respond to the need or emotion behind the words.
That doesn’t mean truth no longer matters. It means there are times when winning the argument accomplishes nothing.
Proverbs gives me a simple reminder:
“A soft answer turneth away wrath: but grievous words stir up anger.” — Proverbs 15:1
When frustration rises, my tone of voice may matter as much as the words I choose.
In caregiving, being right and doing right are not always the same thing.
The Caregiver Needs Care Too
There’s another person I have to watch in this journey.
Me.
I have to recognize when frustration is building. There are days when the responsibility feels heavier than others. That’s when I need to remember that I’m not carrying this by myself.
“Casting all your care upon him; for he careth for you..” — 1 Peter 5:7
Sometimes the wisest thing I can do is stop what I’m doing for a few minutes, collect myself, pray, and come back with a better attitude.
I also need other people. Galatians 6:2 tells us to “Carry each other’s burdens.” God never intended us to face life’s hardest seasons alone.
We need family.
We need friends.
We need our church family.
We need people we can talk to without pretending everything is fine.
And sometimes we need professional help or respite care. Asking for help doesn’t mean we’ve stopped caring.
Sometimes it’s what allows us to keep caring.
I’m Still Learning
I don’t write any of this as an expert.
I’m a husband learning how to walk through Alzheimer’s with the woman I love.
Some days I handle things well—other days I don’t. Sometimes I become frustrated and realize afterward that Helen wasn’t the one who needed to change her behavior. I was.
So I keep learning. I keep praying. One Scripture seems especially appropriate for this season of our lives:
“And even to your old age I am he; and even to hoar hairs will I carry you: I have made, and I will bear; even I will carry, and will deliver you.” — Isaiah 46:4
That’s a promise I can hold onto.
And tomorrow, if the Lord gives us another day together, we’ll probably go back outside and work around the farm.
There will be pears to pick up.
There will be vegetables in the garden.
There will be blackberries to pick.
And I may have to remind Helen again, “Just the black ones.”
That’s okay. Because she’s still beside me. And after all these years together, that’s something worth treasuring.
Alzheimer’s may change how we walk through life together, but as long as God gives us another day, we can keep walking it together.
Stay Connected
If you’re caring for a spouse, parent, family member, or friend with Alzheimer’s or another form of dementia, I’d like to hear from you.
What have you learned?
What has helped you communicate better?
How do you handle those moments when frustration begins to rise?
Maybe your experience can help someone else—and maybe theirs can help you.
One thing I’m discovering is that caregivers need one another. We don’t have all the answers, but we can share what we’ve learned along the way, encourage one another, pray for one another, and remind each other that there is still meaning in the journey.
For reliable information and caregiver resources, visit the Alzheimer’s Association or the National Institute on Aging’s Alzheimer’s resources.
If this article encouraged you, please share it with someone walking the caregiving road. And if you have learned something that might help the rest of us, leave a comment.
We may not have chosen this road, but we don’t have to walk it alone.
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