Whoever sits in the driver’s seat chooses the route.
When a loved one has dementia, the issue of decision-making moves front and center almost immediately. Sometimes there’s no question as to who should make the choices your loved one can no longer reason through. But in other cases, family members may have very different opinions about how to meet the challenges, large and small, associated with dementia. Those differences of opinion—between a parent and children or among siblings—can add immeasurably to the difficulties of caring for a loved one.
A spouse who isn’t able to find and consider all the options may yet insist on being the only decision-maker. Or one sibling may have to defend her role as the one best equipped to evaluate conditions and make choices for a parent, while brothers and sisters demand an equal say.
Choosing who is in the best position to make choices in caregiving matters may appear easy from the outside looking in. Surely it would be the relative or friend who has the most daily contact with the person being cared for, right? Would that it were so simple. First consider the fact that the decisions to be made are usually painful ones: Should we take away Dad’s car keys? Is Mom safe to go out into the neighborhood alone? Should someone assume control of finances, home maintenance, medications, purchases, donations, etc.,etc.,etc.? In addition, Alzheimer’s is a disease that affects a whole family. So questions of capability, trust, motivation, and judgment may erupt among family members just at the time when they most need level heads and teamwork.
In my own case, I know I shouldn’t have allowed my father to make all the decisions about Mom’s care. He was healthy, his mind was spry and rational, but he was determined that his life with Mom would not change. His choices were based on emotion, not common sense. So why didn’t I challenge him?
From childhood, Mom taught me to leave Dad alone. To avoid her wrath, I complied. To the letter. After all, Mom called all the shots in our house
Until Mom got Alzheimer’s.
I met Alzheimer’s the day Mom went berserk (I don’t know what else to call it—that’s what it looked like, sounded like, and felt like) in my son’s apartment. Her struggle with me and Dad exhausted her. She landed on the couch like a thrown log, stiff and leaning to one side, but eventually she lay down.I put a pillow under her head and said a prayer of thanksgiving when she fell asleep.
Right about then, Dad’s behavior became almost as mystifying to me as Mom’s had been. He sat in my son’s old thrift-store recliner, staring down at his hands. He turned them palm up, then palm down, then put them on his knees. He neither looked at me nor spoke.
Trained as I was to avoid upsetting Dad, I kept quiet also. No questions – Have you seen her act like that before? Does she do it often? Have you talked to a doctor about it? Not even a puzzled look. I did my best to ignore the tension in the room as completely as Dad was ignoring me.
When my son came home from work, Mom woke up, smiled at him, and called him by name. As I rejoiced that she was “back to normal,” Dad gave me a look that said, “This afternoon never happened. Don’t mention it.”
My obedience to that silent command set the stage for the rest of my caregiving days. I was never in charge. Or, more correctly, I never took charge.
Dad said he and Mom could manage fine; I didn’t disagree. Instead, I simply came to their house every day to “help.” Dad saw no need to take Mom to the doctor. When at last I convinced him, he let Mom do all the talking. Dad said nothing about her bizarre behavior; so neither did I. The many times I asked Dad to get professional help, even for just one day a week, he refused. With a trained aide, Dad would have been able to do whatever he wanted for a day. I would have had a day off. Mom would have gotten more exercise, been safer taking a bath. She would have gotten used to having someone else help her, just in case a day came when neither Dad nor I could be there. (Those days day did come.) But I didn’t insist. Not even for the sake of Mom’s well-being. I didn’t take control, even when I knew Dad was making a bad decision.
As crazy as it seems to me now, I let Dad stay in the driver’s seat while I just hung on, praying we wouldn’t crash.
The one who makes decisions regarding the care of someone with Alzheimer’s holds an awesome responsibility. The position requires not just common sense, but strength and courage. The choices are seldom easy, and they go on for the rest of your loved one’s life.
Information is a decision-maker’s best friend. Consulting your doctor, an Alzheimer’s support group, your local senior citizens center, and your local office of the Alzheimer’s Association will show you more options and help you evaluate each one. With that information, you can be more confident you’re choosing wisely for your loved one.
I instruct you in the way of wisdom and lead you along straight paths (Prov. 4:11). (NIV)
Lord, we’re doing our best to guide our loved ones through the wilderness of Alzheimer’s. Please lead us with Your wisdom to make sound decisions. We thank you for Your tender love, Your mercy, and Your faithfulness to all Your promises.