reality orientation

Picture this: it’s 9:57AM and you’re just waking up, super late for work. Groggy and in a little pain, you immediately reach for your phone – why the f didn’t your alarm go off?! Wait, why is your phone not plugged in on your nightstand? Where is your nightstand? You don’t know where you are, but it definitely isn’t home. Perhaps more frightening, you’re not alone. You ask for – no, you demand answers. You had to have been kidnapped (possibly even drugged) and, rightfully so, you’re not going down without a fight.

Under most circumstances in the above situation, we’d praise the fighter; we would commend them for their bravery and validate their panic. At the very least, we’d empathize with their hysteria. In the case of dementia sufferers, however, our reactions differ. When a nonno whose reality orientation is off by 50 years insists on getting to work, we scoff. When a nonna swears she has to get her kids from school, we try to snap her out of it. Even worse, when emotions escalate, we dish out labels like “behaviors” or “agitation” and over medicate for good measure. Suddenly, the above scenario reads paranoia and delusion.

Dementia is so much more than memory loss. It has a lot of positive symptoms, too, or ones that manifest themselves as a result of some condition. Hallucinations, delusions, illusions, and paranoia are examples, to name a few.

Hallucinations are the perception of an object or event in any of the five senses in the absence of an actual external stimulus. They can be visual, auditory, etc.
Delusions are false beliefs that are based on incorrect inferences about real external stimuli. So a person isn’t necessarily seeing or hearing things, they’re believing in something that simply isn’t true and that has evidence against its validity. They could assert that they don’t live in their own home and truly believe it, even though it’s evident that not only do they reside there now, they’ve been there for nearly 30 years.
Illusions involve distortions of the senses or how one interprets sensory information. Someone may hear a violent show on TV and interpret the scenes to be happening in real life, for instance.
Paranoia is heavily influenced by fear, often to the point of irrationality. Paranoid thinking, then, usually involves anxiety-inducing beliefs about some perceived threat.

As unnatural as it may feel and difficult as it can be, it is so important to put yourself in your loved one’s shoes. Instead of trying to bring your nonna back down to earth and convince her she’s mistaken, think outside the box: what’s triggering her perception? Consider her environment and any changes that may be beneficial: provide adequate lighting, avoid sensory overloads, and make detailed observations. Something as trivial as rustling bushes could trigger the perception of an outside intruder. Most importantly, reassure her and validate her feelings. Lock the deadbolt on her front door and alert the authorities of suspicious behavior (wink wink). Tomorrow, address her overgrown shrubs.

An old friend recently shared a story about her mom that serves as the perfect example of how to act in such situations. Her mother, who is believed to be suffering from frontotemporal dementia, is convinced there is a snake in her bedroom. The fear became so debilitating that she could no longer sleep in her own bed. Her compassionate (and smart!) first born nixed the reality orientating game and stepped into her mom’s world: every evening, she screens the room alone then lovingly (and convincingly) assures her mother that she’s thrown the snake out the window. On particularly rough days, she calls for backup and “exterminators fumigate the house.” Unnatural? Maybe. Insanely comforting, thoughtful, and commendable? Absolutely.

Books, open forums, support groups, blogs: there are numerous platforms that offer advice on what to do when your loved one has dementia. A simple Google search alone yields over 1.5 million results in half a second. While often helpful and insightful, I’ve come to find that there’s a benefit to learning what not to do, as well, especially when given relatable examples that might just sound familiar. As promised, below are five easy steps to drive yourself crazy when caring for your loved one with dementia:

Orient them to reality: Due to the nature of her disease, your nonna may revert back to another period of time in her life that she now believes to be the present. It’s possible that you’ll find her worrying about her parents who reside nearby, not in Heaven, or a job she’s still committed to, not retired from. When such situations arise and anxiety and confusion persist, comfort her by bringing her back to reality. Firmly remind her that it’s 2017, she’s 96 years old, and obviously completely losing it.
Argue: On a similar note, once you’ve explained to your nonna that she does not, in fact, have to catch the 5:00 bus, listen to her rebuttal. Consider the points she’s made and quickly call attention to their absurdity. Laugh at the ridiculousness and respond accordingly, reminding her that she hasn’t lived in Hoboken in 35 years and her place of employment is now a parking garage. Oh, and the mom and dad she’s worried about? They’re dead. Duh!
Repeat yourself: When brought back to the present, it’s not uncommon for your nonno to voice concerns. After all, he’s living in a totally different reality than that which was just described to him. He’ll have some questions, surely, and your answers are important. If and when he’s still perplexed, simply repeat yourself: seriously, say the exact same thing you just stated as if he didn’t hear you. Works every time!
Rush them: Patience is to be practiced on naive children, not seniors who should know better. If your nonno seems to be having a difficult time following through with trivial, everyday tasks like getting dressed, try a tough-love approach. Put some pressure on him: set time limits and outline strict consequences. Stress can be a motivator, too!
Expect them to be who they’ve always been (and take it personally when they’re not): In the same breath, keep in mind that older people are set in their ways. Not only does your nonna know what she’s doing, she’s also got a motive behind her actions. Know the games she plays and don’t feed into them; make it clear you’re not down for nonsense and encourage her to get it together or else (nursing home, anyone?!).

Seriously, I cringed just typing the above. Unless you simultaneously hate your nonno and love self-harm, please don’t practice anything on this list. In fact, do the opposite. My examples may read humorous and even a bit extreme, but it’s not uncommon for caregivers to find themselves in similar, equally frustrating situations. Always keep in mind that what you’re now experiencing is the disease, not the loved one you once knew. Be patient and be kind. To keep yourself from truly going crazy, just go with the flow; dementia’s demons foster arguments you will never win and changes you cannot control. The only one whose outlook can be altered is your own.