Alzheimer's disease or dementia causes a person's behavior to change, seemingly without reason or explanation. Clearly, some behaviors – such as wandering or forgetting to turn off the stove – are not only dangerous; they could put a person's life in danger. Other behavior problems are less life-threatening: Mom tells the same story all day. Dad compulsively loads and unloads the dishwasher. Dad shouts inappropriate comments in public.
Are behaviors such as these hurting the person with Alzheimer's or dementia? Or is it that they are annoying and hard to deal with for the caregiver?
Feeling confused, worried, frustrated, or even angry about the bewildering behaviors exhibited by your family member is normal. "Now, it's time to come to terms with a hard truth: the real source of your negative reaction is not necessarily the patient. It's you," says Nataly Rubinstein, a geriatric care manager, social worker and former family caregiver.
"One big reason these behaviors are ‘unwanted' is because they disrupt your life," points out Ms. Rubinstein, author of the new book, Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide. "Sure, many behaviors are unhealthy and dangerous for you and your loved one. Other times, though, it's not the actual behavior that's causing so much trouble—it's our reaction to that behavior, based on the mindset we've locked ourselves into."
She says we believe that the way we think things should be is the only way (or at least the only right way). Thus, we limit our own options when it comes to dealing with the patient. What's more, we don't want our relationship with the person to change—and these behaviors are 24/7 evidence that it has changed…dramatically and forever.
Ms. Rubinstein speaks from firsthand knowledge. In addition to her 26 years as a licensed clinical social worker and geriatric care manager, she also served as a primary caregiver for 16 years after her own mother was diagnosed with dementia.
"Sometimes, the new normal is more a problem for you than for your parent. For instance, you—not your loved one—are the person who tends to get upset when the same question is asked over and over again. I'm not saying it's easy, but the best thing to do is get into the patient's world and provide the answer over and over again."
Ms. Rubinstein shared with AgingCare.com some common behaviors that baffle and frustrate caregivers—and gave practical advice on how to handle them – while keeping your sanity.
Mom asks you the same question over and over again, even though you answered it—yet again—not five minutes ago.
At their cores, Alzheimer's and dementia are diseases of forgetting. As these illnesses progress, patients live increasingly "in the moment," and they lose the ability to think and process information. For someone in this situation, repetition—whether it's asking a question, stating a fact, or telling a story—is comforting.
SOLUTION: It will take patience on your part, but it's usually best for everyone if you answer the same question or listen to the same story again and again. Handling repetitiveness in this manner doesn't hurt you, it helps your loved one, and it can prevent much more serious episodes of agitation, confusion, or aggression, Ms. Rubinstein says.
PROBLEM: Compulsive Behaviors
Dad keeps taking everything out of his wallet and putting it back in.
Constantly checking to see if the door is locked, packing and re-packing clothing, etc. are manifestations of anxiety. The person with Alzheimer's or dementia knows he has something important to remember but has forgotten what it was...and this causes his repetitive behaviors. The "big four in anxiety" are the basics for all of us: food, shelter, clothing, and family, so it's not surprising that many compulsive behaviors revolve around these issues.
SOLUTION: First, ignore the behavior and remember that although it seems strange to you, it's probably not doing any real harm. "Giving cease-and-desist advice to your loved one will only spark stress and arguments," Ms. Rubinstein says. Do all you can to help the patient cope with his anxiety. Speak in a calm, gentle voice, and don't be afraid to touch or hug. Remember, the person is seeking reassurance. Your job is to show him that he is safe, loved, and respected.
PROBLEM: Toileting Problems
Dad has started peeing on the couch, in the bathtub, and even out in the yard.
It's common for Alzheimer's patients to struggle with incontinence. Sometimes they simply don't realize they need to use the bathroom or can't make it there in time. And other times, they may have forgotten the location of the bathroom or what its purpose is. Nobody has accidents on purpose, and patients will often offer alternative explanations as to why, for instance, the bed or couch is wet—such as spilled drinks or leaky roofs.
SOLUTION: Realize that it's okay to feel extremely reluctant to take on this particular cleaning task. If you're experiencing toileting problems, the first step is to make a doctor's appointment to ensure that another medical condition or medication isn't the cause, Ms. Rubinstein says. Establish a regular bathroom routine and encourage the patient to go instead of asking whether or not he needs to.
You may also find it helpful to place signs indicating where the bathroom is, make the toilet seat a different color, provide clothes without complicated zippers or buttons, or buy pads for beds, furniture, and cars, she says. Ultimately, don't beat yourself up if you feel too overwhelmed by toileting problems. It might be better for all involved to call in outside help rather than force yourself to face changing a parent's diaper.
My mother thinks that you're trying to poison her.
Paranoia boils down to fear. And people who are suffering from memory loss have a lot to be afraid of. As time goes on, Alzheimer's patients lose the ability to recognize their homes, their friends, their family, and even their own reflections in the mirror. In the midst of this unfamiliarity, they'll struggle to make some sense of their situations, and they can hold on to the ideas they form for quite some time. Even though your loved one's belief that you're trying to steal her jewelry may seem irrational to you, it's nothing short of reality to her.
SOLUTION: Dealing with paranoia is tricky. The best things you can do are to remember that your loved one isn't trying to hurt you, and to try not to take things personally. Know beforehand that rational explanations and clarifications probably won't work, so don't pin your hopes of returning to "normal" on them, Ms. Rubinstein says.
PROBLEM: Sleep Problems
Mom wakes up frequently at night, and as a result we're both tired and cranky all day.
As we age—whether we're suffering from Alzheimer's or not—the quality of our sleep tends to change. Individuals can wake up frequently due to the need to go to the bathroom, pain, anxiety, restless leg syndrome, or even a confusing environment. And when you're a caregiver, your loved one's sleep problems become your sleep problems. Obviously, consistent sleep deprivation won't help either of you to function or cope well.
SOLUTION: First, make sure that your loved one is physically comfortable in terms of her clothing, temperature, lighting, mattress, pillows, etc. Helping her to be mentally comfortable so that she can rest well might be a bit trickier. Try to minimize stress around the clock, stick to a routine, and provide reassurance rather than giving orders. For instance, you might tell your mom that you know everyone in the house is safe at night because she's so careful about checking the doors instead of suggesting she go to bed because she's already checked the locks twelve times. If your initial efforts don't work well enough, consider hiring a nighttime aide to give yourself a break.
"Ultimately, while you can't change the progression of the disease from which your loved one is suffering—or even greatly influence his or her behaviors—you can take steps to minimize the stress both of you feel as a result of behavior changes," says Ms. Rubinstein.
"Also, keep in mind that while many of the behaviors that result from memory loss can be difficult to deal with, it doesn't mean all the joy is gone from your life and that of the patient," she adds. "Caring for my mother wasn't always easy or enjoyable, but I can assure you that we did share plenty of smiles, laughs, and yes, love. You, too, can have a positive impact on the patient's quality of life—and you can definitely still enjoy special moments with your loved one."
Nataly Rubinstein, a licensed clinical social worker and certified geriatric care manager specializing in Alzheimer's disease and other dementias, is the author of Alzheimer's Disease and Other Dementias: The Caregiver's Complete Survival Guide. Nataly is a consultant for families and assisted living facilities, and provides counseling, consultations, and support groups in her private practice.