The What Ifs of Alzheimer’s: What If I Can’t Be the Caregiver ?

Anxiety is a daunting enemy for caregivers. In the last post (What IF…?) we looked at the damage “What if…” questions can do to a caregiver: dousing confidence and creativity, draining energy, replacing patience with panic. We saw that we can’t just push those thoughts out of our heads. Instead, we must replace them with other thoughts. Useful thoughts.

So…what if something happens to keep me from caring for my loved one with Alzheimer’s? What if, for some reason, for some amount of time, I have to be out of the picture? What would I do?

Is that a question that might keep you up at night? Or are you prepared with an answer?


My plan for dealing with this what-if was simple: I just ignored it. In the split second I considered it, I saw no possibilities. Not one.

There were very few people I would have been comfortable asking to fill in for me, and I was sure none of them would be available. Because of work. Or because they didn’t know Mom and would not like being responsible for her. Or because they did know Mom and would not like being responsible for her. The bigger issue, however, was that Dad had told me from the beginning he wouldn’t allow anyone in to help with Mom except me or my sister. So, believing I had no options, I chose to put that what-if out of my head. I told myself it would never happen.

Not a good strategy. First, the question wouldn’t go out of my head. And then, it did happen. 

storm beach

The crisis came with no warning, and it developed fast. One day Dad complained of feeling “bad.” Two or three days later, he was hospitalized for an infection that might have taken his life. Someone needed to be with him to interface with doctors, receive test results, etc. But someone also needed to be with Mom, day and night.

What I did:     I called my sister. She was able to take ten days off from her job to be with Mom during the day. I hadn’t even considered this an option. Her job was full of decision-making, travel, supervision, yet with very little notice she was able to leave it for almost two weeks. I stayed at the hospital during the day and spent nights with Mom. When Dad came home, my sister went back to work. And things returned to “normal” with me and Mom and Dad.

What I didn’t do:     Even after this emergency, I made no plans for a “next time.” I persisted in believing what was clearly not true: I had to be the one and only caregiver for Mom.

What I could have done:     This crisis could have been the beginning of a grand improvement in my caregiving journey with Mom. During the time Dad was out of the house, I could have brought in a professional caregiver for Mom. With my sister there for the first couple of days, then returning occasionally to check on how things were going, the ten days would have allowed a new caregiver to get used to Mom. And Mom would’ve had the opportunity to depend on someone other than me or Dad or my sister.  Another possibility: as it turned out, Dad had to have nurses come to the house to check on him for a few months after he left the hospital. In spite of his long-held belief that having “strangers” in the house would make him feel “invaded,” he made friends with the nurses and actually enjoyed their company. If I had hired a part-time caregiver during his hospitalization, someone to help with Mom’s exercise and personal hygiene, by the time Dad got home, a new rhythm might have been established. Mom’s care would actually have improved, and Dad might have had another friend.beach line


Three things to remember:

You always have options!

My worst mistake was thinking there was no solution to the problem. That one thought – “I have no choice here” – paralyzed me. I couldn’t convince my mind to brain-storm a solution for an insoluble problem. But the truth is I did have options! So do you. You always have options. [You can do this.]

Fight for what you know is best.

My father thought he could care for Mom alone. He couldn’t. He thought he knew what was best for her. He didn’t. But—to Mom’s detriment—I didn’t challenge him. I should have made him face the truth; at least I should have tried. You are the one who must see clearly and speak truthfully. It takes strength, but you will have it. [Trust yourself.]

Take advantage now of all the help available to you.

I did a good job of lying to myself, telling myself that, most days, I really didn’t need any help. I was wrong. You can always use help. The sooner you begin to look for it, the more you’ll find. The sooner you begin to ask, the easier it will be. And if you get help even when you think you don’t need it, two good things will follow: your job will be easier now, and the help will be more readily available in an emergency. [You’re never alone.]


But the Helper, the Holy Spirit, whom the Father will send in My name, He will teach you all things, and bring to your remembrance all things that I said to you. Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.”               (John 14:26-27   NKJV)

LORD Jesus, in Your might, You help us. In Your love, You comfort us. We ask that in Your mercy, You care for our loved ones, and in Your wisdom, show us how to protect them until they come home to You.

What If…?

The what-if’s of caring for a loved one with Alzheimer’s can defeat us before we even start to fight. They can be overcome—knowing the truth of that statement is the first step to victory—but defeating them requires action.

We’re all familiar with what-if’s. They pop up all the time, it seems. What if I get lost? What if I have a flat tire? What if I oversleep? What if…? What if…? What if…?

What if something bad happens?

Caring for a loved one with Alzheimer’s is difficult enough without entertaining the what-if’s. If you allow the Alzheimer’s what-if’s to get a foot in the door, they’ll suck all the air out of the room. Your caregiving creativity will faint from lack of oxygen and the confidence and determination that get you through your day will melt and run down your back like sweat.what if

Yes, it’s hard to escape fear. The extreme unpredictability that goes along with Alzheimer’s produces thoughts that can range from “What if Mom won’t get in the car to go to the doctor today?” to “What if I get sick? Really sick? Who’ll take care of Mom then?”

How do we turn those thoughts off? Well, we can’t just push them out of our heads. What we must do is replace them with other thoughts. In this case, we replace the negatives with positives, the doubts with certainties, the fears with strategies for action.

In short, we plan.what's your plan

Plan. I know from experience that’s easy to say and hard to do. Deciding in advance what you’ll do in a particular situation is especially challenging when you’re dealing with a disease like Alzheimer’s. Symptoms vary widely. There’s no dependable time-line for progression of the disease. And each person experiences Alzheimer’s in an absolutely unique way. So where can a caregiver even begin to plan?

Actually, the starting point is simple to determine:

You start with what is. Right here, right now. Keeping your mind occupied with solving the challenges of the present can turn fearful thoughts into a feeling of accomplishment.

And don’t forget to watch for opportunities to laugh. Mom trying to chew with her dentures in upside down began as a mysterious problem and ended with laughter and a potato chip snack. Thinking and talking about good memories, short or long term memories, is better than imagining disasters.

For the larger questions and situations we anticipate will come up in the future, we engage in more formal planning. First determine the issues that must be planned for. Then study the information you find on the topic, talk to people who have knowledge and experience in each area, and come up with a list of options. Alzheimer’s caregiver support groups are an excellent source of information. You’ll meet people there who are facing or have already faced the situations you’re planning for. You’ll find candid discussions, information based on personal experience, practical advice and suggestions. In addition, there will be a trained group leader who can direct you to even more helpful resources.


Perhaps you’ll be able to rank the options in order of your preference, perhaps even determine exactly what you think is best to do. But at the very least, when the issue comes up and it’s time to take action, you’ll have a list of options.

Information is the best defense against the what-if’s. In the weeks ahead, I’ll be writing about some of the issues I faced as my mom’s disease progressed, things like the extra complications Alzheimer’s adds to other illnesses, legal documents you may need, the decision on if and when it’s time to consider admitting your loved one to a professional care facility, hospice considerations.  Listing those subjects here makes them seem cold and clinical and clear-cut. They are none of those things—instead, they’re intimate and emotional and confusing. But as you think about them, and as you read and hear how others in your position have dealt with them, you’ll find yourself putting your own head and heart into your own personal caregiving journey. The panicky “What-if’s” will give way to deliberate consideration of wise options for the one you love and care for.    


How long must I wrestle with my thoughts and day after day have sorrow in my heart? But I trust in your unfailing love; my heart rejoices in your salvation.  I will sing the Lord’s praise, for he has been good to me.  (Ps. 13:2,5-6 NKJV)

Dear God, time is your creation. Protect us as we travel through it, holding tight to the hands and hearts of those we care for. Protect us from fear and doubt and panic.  Remind us of your unfailing love–help us revisit the many, many times you have held us up and helped us move forward. Give us Your wisdom to see what matters, deal with what is, and plan for what will be. In Jesus’ sweet name we pray. Amen.