Have you ever spent an hour with a toddler, a curious 2-year old with about a million questions? Some of the questions are brand new as the child explores the world. Others have no answers but they ignite the imagination. The third type of question is the one that is repeated over and over: “How many more miles?” “When’s dinner?”
“Why do I have to do ____?” This last kind of question is the one that an Alzheimer’s victim might ask three hundred times each day: “When are we going home?” even when you are home and have not left home all day. It is the sort of question that will have you reach deep into your stores of patience, the patience that you must restock every morning, noon, and night as you reply, “In five minutes.”
For unknown reasons ideas get stuck in the brain of a loved one with Alzheimer’s disease. The individual focuses on one thought, in fact she may be obsessed by it and going home seems to be a favorite. As you know, you can never win a war of words with someone who has Alzheimer’s disease. When asked when you are going home and you are already there, you just need to pull a handy answer out of the bag. Never scream, “For the thousandth time, we are home!” at the top of your lungs. This reaps nothing but anger and anguish. You know you are home, but your loved one does not realize this, and he may not ever figure that out again.
Imagine how frustrating it must be to have “normal” life replaced by abnormal wonderings, to think that people are pulling tricks on you, hiding favorite clothes, and lying about going home are some of the strange meanderings of the mind of a loved one with Alzheimer’s disease. I liken it to looking into the living room to see that everything is in place – a favorite chair here and the reading lamp in the corner. Suddenly the lights blink off and when they return, all the furniture is gone. The daughter, when the victim asks, “Where did the furniture go?” laughs back, “Mom, it’s right there” when in a mixed-up mental state it is not right there. It has vanished.
Soon the lights flicker out again and as they slowly come back on, the furniture emerges, but it has been moved around. A query draws more laughter, good-natured on the daughter’s part but sounding like ridicule to the ears of the Alzheimer’s victim. Suddenly the loved one spies a dark rug by the front door. Yes, the rug has been there for twenty years but it has transformed from a throw rug to a deep hole, right where you’d tumble in if you answered the door. Perception has changed and clear thinking misfires. The loved one with Alzheimer’s disease believes that she is the brunt of jokes and that danger surrounds. The caregiver just can’t understand. In all of this turmoil, I guess any one of us would want to go home, too.
Repetition appears to be a manifestation of this disease. Because sense has become nonsense, the same question is asked again. The answer is repeated but it is not received or understood by the listener. Or if it is received it is jumbled, misconstrued, or vanishes into the recesses of the brain. And so the loved one with dementia finds it necessary to ask the question again, “When are we going home?”
What can the caregiver do to maintain sanity and also give dignity to the one who asks? Sometimes a pat answer works. I like “In five minutes” because it is simple, to the point, and not far from the truth. You are home so going there in five minutes is possible. At other times variety works, “Pretty soon”, “After this program”, or “When Aunt Sue gets here” satisfies the listener and gives the caregiver a five-minute reprieve. The idea of going home is a fixation and the loved one with Alzheimer’s needs a respectful answer even though the response may be a stretch from the truth.
You may need to explain this to visitors, “Fred is going to ask you the same question several times today. Answer any way you want and then prepare to answer again.” Your guest will hear the problem soon enough for himself.
The worst part about this nonsensical rewinding of the question is that visitors tire, decide Grandma doesn’t care or even know that they have visited, and so the friendly interludes stop. This is sad, in fact it is devastating in many ways. First, you, the caregiver, need to hear the ringing of golden voices and engage in conversation with family and friends and the victim of Alzheimer’s, even though understanding is masked by the tangles of cognition, needs these as well.
When my mom and sister could no longer say my name and no glimmer of recognition emitted from their eyes, I knew that buried deep inside rested individuals I loved. A pat, an arm rub, and gentle “I love you” echoed within them as the dearness of their presence helped my wounded heart. Repetition will become a way of life when you care for someone with Alzheimer’s disease. Even though it may drive you wild now, you will miss that wonderful repetitive lilt in the future, when the disease robs your dear one of the ability to speak and then of life itself.