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?

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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. 

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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.]

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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.

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About atimeformiracles

I'm a writer. And a speaker. And an advocate for victims of Alzheimer's. I write about a lot of things, but right now Alzheimer's has taken center stage. You'll see some of my work on my blog alzheimershopeandhelp.wordpress.com. If you're a caregiver, this blog is for you, from someone who has been in your shoes. I offer help in the form of tips and strategies gained through my personal experience. I offer encouragement in the form of witness: You are never alone. The God of all hope is always with you, and where He is, miracles abound. I speak to groups on the same subject, sharing helps and challenging caregivers to expect joy on the path through Alzheimer's. It's a rough road, but it leads through terrain of intense beauty. I can point out some of the miraculous sights along the way. In the U.S., a new diagnosis of Alzheimer's is made every 69 seconds. Please join me in praying for those suffering from the disease and for those who care for them.

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

  1. Kathleen, this is perhaps one of the best articles you’ve written yet. And oh, so true. Why must we always learn by hind-sight. Thank you for saying these hard to hear, but necessary words. Perhaps those in the middle of this difficult journey will listen. I sure hope so.

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