Is Honesty Really the Best Policy?

September 30, 2017October 2, 2017 ccandido1 Passion alzheimer's, dementia, fib, fibbing, lie, lying, the 36 hour day, therapeutic fibbing

Last week, I sat beside a client in the hospital and reminisced of days gone by. Though her short-term memory is shot, she’s able to recite stories from the past as though they took place yesterday. She shared one in particular that’s stuck with me for a few reasons: 1) it was hilarious and 2) it hit really close to home. This nonna (who I’ll call Lo) and daughter (D) recalled one summer at their country home, where they took in a baby raccoon that had been abandoned by its mommy. Four-year-old D affectionately named him Rakki and they bonded instantly; she dressed him in tiny outfits and turned a bottom drawer into a bedroom.

September approached and so did the inevitable: it was time to part with Rakki. Obviously D was heartbroken, but in true mom fashion Lo stepped in and made it better. Uncle Eddie lived on a farm full-time in Pennsylvania and was happy to adopt his furry nephew. Perfetto! The story doesn’t end there, though. Lo and D outlined the rest of Rakki’s thrilling life, including marriage, kids, and a subsequent (yet civil) divorce. Lo got a kick out of filling me in, especially when she revealed that they did not, in fact, ship Rakki to PA – he went right back where he came from (the back yard). We could not stop laughing.

The Rakki tale hit close to home because my parents told a similar lie to me: after finding that an egg had fallen from its nest and opened prematurely, I was panicked. We were on our way out, but my mom assured me that if I scooped the baby up and put him by the Virgin Mary, my dad would rush him to the vet when he got home from work. As far as I knew (until my mid-f’ing-twenties), he did just that: Dr. Wilson patched him up and sent my tiny bird to live on a farm in Pennsylvania. Was the PA farm anecdote a Jersey parent thing?! Was it so that we wouldn’t ask to visit? Regardless, the elaborate fibs our parents told were not simply for their own amusement, nor were they to hurt us. On the contrary, they were for our own best interests – to protect our little hearts.

D didn’t find out the truth about Rakki until adulthood, just as I was kept in the dark about the bird. It makes sense considering as kids we’re taught that lying is both awful and unfair. On top of that, we learn to never lie to our parents or to people that we love. Being dishonest with someone with dementia, then, logically sounds appalling. In reality, it can be essential:

“Those with dementia often struggle with logic, rational thought, sequencing, and emotional control. Therapeutic fibbing may be may be appropriate when telling the truth would cause pain, anxiety, or confusion, or when the person with dementia is experiencing life in a different “time zone”.”

Sometimes, a fib may be the kindest thing you can say to your loved one with dementia, though it’s easier said than done:

“To varying degrees, many of us as adults still feel that our parents are parents and that we, the children, are less assured, less capable, and less “grown up.” [We feel guilty for being untruthful.] The trouble with guilt is that it can keep you from making clear-headed decisions and doing what is right for [your parent] and the rest of the family.”

– The 36-Hour Day

Remember that the fibs you tell are not intended to hurt your parents, just as theirs were not to you. Shake the guilt and be creative; adaptation is the key to success. There’s no one-size-fits-all when it comes to this stuff. Accept the illogical and embrace absurdities. If your nonna insists her car’s outside and she’s got somewhere to be, remind her that “it’s in the shop.” Show her it’s not out front and offer her a ride. Validate her feelings. If nonno needs an aide post-fall but is too prideful (and too cheap), confirm that it’s just temporary and covered by insurance. Empathize with him: a guest at home is not ideal but the doctor wants him stronger (plus it doesn’t cost a thing!). Think outside the box and go with it. After all, they did the same for you.

What Time’s Supper?

September 30, 2016 ccandido1 Passion alzheimer's, clock, clock the, the 36 hour day, time

This afternoon, one of my loves frantically stopped me in the hallway as I passed her apartment: “Chris, can you help me? Please, please help me for a minute?!” She was visibly panicked as she reached for a notebook and pencil from her rollator. Shakily, she wrote down 4:45. “Supper is at 4:45. 11:45 is lunch.” She repeated and re-wrote, “4:45, 11:45.”

While this behavior was without a doubt concerning and definitely out of character, I can’t say that I was completely surprised; yesterday, I affectionately reminded her of my 3PM program, to which she replied, “I just have to get to supper first, then I’ll be there!” A little strange, but I assumed hoped she was having a late lunch and simply slipped and called it dinner. To my (and her) disappointment, she was shooed away by the wait staff – supper was not for another two hours. Oh, and to be clear, this nonna is not a dementia resident. 😦

With a lump in my throat and a heavy heart, I spent the next half hour drawing clock faces and timetables. She was able to without hesitation read me the time displayed on her watch, yet she had no idea what those numbers meant. She confidently (and accurately) explained which hand was for minutes and which for the hour, and repeated her seating times and the meals served at each. When it came to tying the two together, however – that clear number and its obscure meaning, she simply was not able. Understandably so, she was an overwhelming mixture of scared, upset, confused, and mortified.

It’s pretty widely understood that people with dementia have a warped sense of time; their reality orientation may be off by several years. In other words, they might think they’re decades younger than they actually are, in turn mistaking adult children for siblings or a frightening, unrecognizable mirror reflection for someone else’s. We also get that they lose sense of the passage of time, therefore experiencing a shorter attention span and not comprehending how long it’s been since some event occurred. Seemingly less implicit, however, is the fact that the ability to read a clock may be lost early in the course of the disease: Even when a person can look at the clock and say, “It is 3:15,” he may be unable to make sense of this information. Could you imagine? Obviously, my love was distraught today, and I don’t blame her one bit:

“Not being able to keep track of time can worry the forgetful person. Many of us, throughout our lives, are dependent on a regular time schedule. Not knowing the time can make a person worry that he will be late, be forgotten, miss the bus, overstay his welcome, miss lunch, or miss his ride home. The person who has dementia may not know just what he is worried about, but a general feeling of anxiety may [occur].”

– The 36-Hour Day

There’s no one-size-fits-all when it comes to these difficult situations; everyone is unique and will respond differently to your approach. In our case this afternoon, I felt a new watch was a solid first step. It took just minutes to find one on Amazon with daily alarms and a large display. She’ll be alerted every mealtime and, given her current cognitive state, should hopefully make her way to the dining room with less anxiety and much more confidence. And if she arrives at 11:45 for lunch but calls it supper, I’ll *still* consider it a win and cheerfully escort her to her seat.

Hi, This is My Grandmother!

August 31, 2016September 2, 2016 ccandido1 Passion adler aphasia center, alzheimer's from the inside out, aphasia, brain, caregiver, caregiving, dementia, grandma, grandmother, language, left hemisphere, nonna, richard taylor, the 36 hour day

Spoiler alert: this post has nothing to do with my grandma. It’s not a sappy account of how I consider my residents to be my stand-in nonnas, either (though that is obviously the case). It is, however, in reference to a “role” I guess I could say I’ve happily assumed: One of my favorite residents constantly introduces me as her grandmother. I’ll get the occasional “daughter” or “neighbor,” but a solid 97% of the time I’m her grandma.

I joke about my laugh lines and how I have an old lady bedtime, but I can confidently say I don’t look like my 80-year-old love’s grandmother. Regardless of her reality orientation, there’s no way she would visually mistake me for her, as even if she believes herself to be ten years old, her grandma would not be pushing 30. Why does she call me that, then? Though demented, this seemingly offensive (wrinkle cream regimen starts TONIGHT) introduction has nothing to do with her memory; she has aphasia.

Aphasia refers to the inability to understand and formulate language due to impairments in specific neurological regions. In other words, it’s an f’ing nightmare. They say there are four communication modalities: auditory comprehension, verbal expression, reading & writing, and functional communication. Aphasia significantly impairs at least one at a time, and its symptoms range from the occasional difficulty finding words to losing the ability to speak, read, or write. However, it has zero impact on intelligence or episodic memory. Semantic memories, on the other hand, are compromised; while an aphasic individual will retain their experiences and remember life events, their comprehension of words, pictures, objects, and environmental stimuli is destroyed. This means that as the disease progresses, they lose not only the ability to name things, but also the meaning or conceptual knowledge of those things they’re trying to recall.

As if the above wasn’t scary enough, it’s important to understand that aphasia doesn’t always go hand-in-hand with dementia. Sadly, it’s way more common than one might imagine: according to Robin Straus of the Adler Aphasia Center, 1 in 250 people experience the disease. That’s more than Parkinson’s, Cerebral Palsy, and Muscular Dystrophy. It’s most often the result of a stroke, but any damage to the left hemisphere of the brain can cause aphasia – think brain tumors, traumatic brain injuries, and progressive neurological disorders like dementia itself. Oh, and there’s no age limit.

But if it’s not my laugh line wrinkle, how am I a grandma to my aphasic love?! If they can’t think of the correct name, nonnas with the disease may substitute a word with a related meaning, such as saying “wedding” for “ring” or “music thing” for “piano.” Her grandmother was an important person in her life – a source of comfort, joy, and love. Her brain can’t remember what to call me, but it knows we share a unique bond (cue my cliché tears..) and that I make her feel at ease. That’s evident not necessarily in the words I speak, for they’re not understood; it’s in the laughs, the playful shrieks, the overly affectionate hugs, and the kisses every morning. That her mind remembers, her heart won’t let her forget.

While she talks a mile a minute, my love –to be completely blunt– makes no sense at all. It’s extremely difficult for her to communicate her thoughts and to understand those of others that are relayed to her. Repeating something to her, even slowly and with clear enunciation, will make no difference; the issue does not lie in whether or not she hears you, but rather deep within the wiring of her brain. As Dr. Taylor so frankly put it:

“Their current dilemma continues to be to figure out just why I am not complying with their requests. Is it because it hasn’t registered in my brain? Is it because I can’t figure it out? Is it because I forgot it? Is it because I don’t believe them? Is it because I don’t want to do it?

Old strategies that worked for years – say it again and say it louder – just don’t work any more. I’m glad I’m not a caregiver who has to figure me out every day.”

– Dr. Taylor

Instead of asking the same question twice, try rephrasing it. Use short words and simple sentences, avoiding multipart requests. Do speak slowly and be patient when awaiting a response; the act of processing and replying to a demand may take much longer than what is natural to us. Use other signals besides spoken words: point, touch, write, etc. Most importantly, be empathetic and have patience. Don’t take things personally and expect the unexpected: even if your nonno’s never muttered a curse word in his life, you may be compelled to wash his mouth out with soap. Unfortunately, increased cursing just seems to be a quirk of language skill diseases. Don’t feel embarrassed or, worse, embarrass him; laugh about it! Just last week, my beloved “granddaughter” called me a skinny b*tch. Naturally, I took it as a compliment ;), as I most certainly do her usual nickname for me. I’ll gladly be her grandma any day. ❤

*note* This post was written prior to the extremely unfortunate passing of the love I mention above. It is dedicated to her and aphasia awareness. Please don’t hesitate to email me or comment below for more detailed information or additional resources. Our lives will be sadder and our days duller without you, D.