When I was small, I wore braces on my legs to straighten out a crooked foot. The neighborhood kids were, as you might expect from kids in the 70’s, relentlessly mean about it. But not for long. Because my older sister, who was also relentlessly mean to me about everything, would not stand for it. She waged war on them until they left me alone.
The same thing happened in high school when I had a problem with some mean boy. She and her friends, already out of school, drove slowly alongside him as he walked home, threatening his very existence if he ever bothered me again. This coming from the person who pelted me with stuffed animals for breathing too loudly while I slept.
She was simply following the code: no one could be mean to her little sister except for her.
The same goes for our mother. She is a piece of work, our mom. Alzheimer’s disease hasn’t changed her personality, only exacerbated the worst parts of it. She can be rude, demanding, irrational, downright mean. But there is exactly one person who can be mean back. Me.
When I say me, I really mean us – her children. No nurse, no doctor, no grocery store cashier can look at her sideways without catching hell from us. If anyone is going to tell her to behave herself, it will be us. And if someone beats us to it, we’ll defend her until the bitter end, even if she is clearly in the wrong.
Protecting her has become a huge part of my sister’s caregiving. She is constantly vigilant, and she kind of has to be. Our mom can do some crazy things, embarrassing things, things that can make people really mad. We get it. And she may have done some of these things before she was sick, but now she really can’t control it. She is like a two year-old in an 85 year-old’s body. This is why I fought (and lost) to get her into memory care, where people are trained to deal with the long strange mushroom trip that is dementia.
And if I’m really being honest, as her disease progresses, even we can’t call her out for her behavior. Sure, when she talks with her mouth full of ranch dressing, or when she called the police because my father’s aide “overfilled the washing machine,” we’re screaming inside our heads. But we don’t want to yell at her about it anymore. Dementia is one of the cruelest diseases I’ve ever seen up close. I wouldn’t wish it on anyone – not even my grouchy, somewhat gross mother.
Instead, we’re educating ourselves on how to interact with someone suffering from dementia. The first step was understanding that although she acts a bit like she always has, only with any semblance of a filter now removed, she is not the same. She is not in control of her impulses, no longer able to remember what thoughts are okay to voice and which should remain in her head unspoken. Once we realized that, we were able to get down to the nitty gritty of dealing with the challenging behaviors of dementia.
First and foremost, we try to remember and acknowledge how scary this is for her. She’s not so far along in her disease that her confusion doesn’t cause her anxiety and fear. She’s always been an anxious person and turning nasty has always been the way it’s manifested for her. That has only gotten worse with dementia. But acknowledging her fears-disguised-as-complaints goes a long way in diffusing the situation.
When my mom says something like, “I can still drive, I’m an excellent driver!” We don’t disagree. After all, the woman never had an accident or a ticket in her life. We just acknowledge it’s frustrating and then we lure her away from that train of thought. i.e. “Hey mom, I noticed you are low on shampoo. Do you want to go to the store with me?” She loves nothing more than a trip to Shop Rite. Fight over driving averted.
And we don’t remind her that she can’t do certain things anymore because of her disease. That will lead to a larger argument since she doesn’t really believe she has Alzheimer’s. People with dementia can’t learn anything new. We can explain until we’re blue in the face – she won’t understand or remember, and she will always argue. Doing that will make you crazy and is a little cruel to your senior.
“That really stinks, mom. Hey, do you want to get some ice cream?” Is a way better solution. If she has always loved ice cream, she won’t forget she loves it because it’s not a new concept. Take the woman for ice cream, don’t give her a lesson in neurology.
Another great way to handle challenging behaviors is to set the stage so they don’t happen in the first place. There are a million ways a person with dementia can be set off, so this won’t always work, but physical touch (if they generally don’t mind being touched), like a gentle back rub, holding their hand in an unfamiliar place, or even just a compliment (“I love your sweater”) can help settle their nerves. Another mood booster might be music. If your senior is a music lover, try to give them something simple to play music with, so they can also listen when they’re alone.
My mom often combines stories or comes up with false narratives. It’s her way of trying to make sense of a world that no longer makes much sense to her. So, when she says that her mom and dad put her in her assisted living facility, we don’t correct her. We listen and nod before steering the conversation in another direction. If she asks a direct question such as, “how did I end up in this place?” We’ll tell her. But just as you would with a child asking tough questions, we give her the briefest explanation without providing a lot of information that would confuse her more. We would say, “your house was just not a safe place for you anymore.” We would NOT say “you fell down the stairs, you have dementia so you can’t take care of yourself anymore, etc., etc. Give them the short answer. If they ask for more, then give them a little more, but more than likely the short answer will be all they need.
Pictures of family and friends can be a comforting presence for people with dementia-related anxiety, too. My mom has four kids, ten grandchildren, and ten grandchildren. We have no shortage of family photos. We have collages on the walls of her assisted living apartment, and a shadow box outside of her door with more photos, so that when she is out in the hallway, she’ll see which door is hers. We’ve also made photo albums that span her whole life. She pours over the pages, and can even name all of the people in photos as far back as the ‘40’s and ‘50s. We also have her high school yearbooks, where she can see pictures of my handsome dad, and herself, his cheerleader girlfriend.
When all else fails, try the universal babysitter- the tv. If you have listened as long as you could listen to a litany of complaints on repeat, don’t tear your hair out. There is no shame in turning on Dr. Quinn, Medicine Woman or Maury Povich (depending on their tastes in shows) for your senior.
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No one can do this alone, even though so many caregivers of the elderly do. Subscribe to our blog, follow along on social media, and let us be a part of your support crew. We’re here to acknowledge how hard this is, and to let you know there is no shame in admitting there are things you’d rather be doing than changing adult diapers, being the power of attorney for your parents, enduring the verbal abuse of a cranky senior, or however this phase of life is affecting you. We’re in this together, no matter how much we wish we weren’t in this crappy club.
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