In caring for her 89-year-old mother, who has been diagnosed with Alzheimer’s disease, Lynette Whiteman says a frequent battleground was the shower.
“She wouldn’t accept any help in the way of an aide,” said Whiteman, of Tom’s River N.J.
Whiteman, who is executive director of Caregiver Volunteers of Central Jersey, says that being educated on the illness helped her cope.
“I tried to separate the fact that if my mother was fully cognizant, she wouldn’t be fighting taking a shower, she would be mortified,” Whiteman said. When things got heated, Whiteman would end the discussion and leave the room briefly. “Locking horns is a no-win, for both of us,” she noted.
Engaging in daily battles, listening to complaints or being the target of criticism is hard to take when you’re doing your best as a caregiver. But it’s often a regular occurrence in families affected by dementia-related illnesses. Understanding the problem, and recognizing your own limitations, can minimize your upset.
Arm Yourself With Understanding
Recognize that your loved one now exists in a confusing and frightening world, advises Dr. Gauri Khatkhate, geriatric psychiatrist with Chicago’s Loyola University Stritch School of Medicine and the Edward Hines Jr. VA Hospital.
Instead of letting an argument continue, step into another room to cool down, divert your loved one’s attention or put on soft music or the TV.
“Your parent may struggle to remember people and places that were once familiar, and tasks that were once routine. They may have a limited ability to understand their own limitations and why they are suddenly being told by another what to do,” says Khatkhate.
Your mom or dad may also lack a good way of expressing physical or emotional discomfort. “Instead, they may seem to lash out in anger — shouting, insults, cursing, or physical aggression,” Khatkhate explained.
The key to dealing with the negativity is reminding yourself that your loved one isn’t trying to be mean.
“Those are not genuine thoughts or feelings; they are the symptoms of a devastating disease. Really recognizing and understanding that fact may help lessen the emotional impact of the hostile behavior,” said Khatkhate.
Dealing With the Public
It’s likely that visiting attendants, store clerks, or medical personnel may witness your battle or even be on the receiving end of one with your parent themselves. Don’t feel guilty if you are embarrassed; it’s upsetting to see your mother or father — traditionally your role model — acting inappropriately, despite your awareness of the situation.
Brent Mausbach, clinical psychologist at UC San Diego Health, suggests trying to explain the situation to the third party ahead of time, ideally out of earshot of your parent, to avoid agitating him or her.
“Verbally inform the (individuals) that your loved one has dementia, and it affects his or her ability to communicate, or it might affect behavior, memory and understanding,” Mausbach said.
Of course, you can’t offset every problem; even a quick stop at the grocery store could turn hostile.
“I’ve known caregivers to carry ‘caregiver business cards’ with them, that state something like, ‘My partner has Alzheimer’s disease, and I am his caregiver. Please direct communication to me, and know that he may (forget, be unable to communicate or answer questions, display agitation, etc). Thank you for your patience,’” said Mausbach.
Focus on What You Can Change
It’s difficult to change another person’s behavior, whether or not they are affected by an illness. Instead, focus your energy on things you can change.
“A change in the caregiver’s behavior will often result in a change in their loved one’s behavior. Try a different approach, or a different consequence,” said Michelle Venegas, a licensed clinical social worker with the Family Caregiver Alliance in San Francisco.
For example, instead of letting an argument continue, step into another room to cool down, divert your loved one’s attention to something else or put on soft music or the TV. If it’s a disagreement that occurs regularly, consider adjusting the routine or asking another family member to take over, Venegas said.
Venegas also reminds caregivers not to be too hard on themselves or expect instant perfection. “(You) can learn ways to deal with challenging behavior; it’s not something you should just know how to do,” she said. “A support group, in-person or online, is a great way to connect with others in a similar situation who can offer understanding, tips and ideas.” Her organization’s website is a good resource.
Find a Listener
An understanding, compassionate ear can do wonders in restoring your mood and outlook, too.
Whiteman says she turns to her husband (who’s also dealing with her live-in mother) as well as friends for needed support. But your sympathetic listener doesn’t necessarily have to be of the human variety.
“I have two dogs that provide a great deal of therapy for me. I walk them every day. This helps me de-stress and get perspective,” said Whiteman.
Explore an Outlet
Giving your mind a diversion, even briefly, can be restorative as well. Reflect on what activities you enjoy that may have been cast aside in the chaos. Coaching youth sports? Baking bread? Listening to classical music? Try to infuse some element of this interest back into your life.
“Even small breaks at home can help — to meditate, watch a favorite program or read a book,” said Khatkhate.
When co-caregiving for his elderly parents, Rick Lauber, of Alberta, Canada, found that writing was an excellent break, and something he could fit into available time.
“Writing my own thoughts and feelings allowed me a means of releasing my own anger and frustration, and I could either share what I had written with others or keep it private,” he noted.
Lauber continued writing after his parents passed, and went on to publish his stories and books, including The Successful Caregiver’s Guide.
Watching your loved one struggle with illness is difficult, and the behavioral challenges that accompany dementia only add to the emotions of the situation. But building your own understanding, trying different methods of coping and taking time for yourself are the best ways to safeguard your well-being and do the best for your loved one.