Finding gratitude on the journey of dementia
It’s hard to believe Thanksgiving is just days away, and the end of the year is drawing to a close. While images of a beautifully laid table and my children holding their forks correctly complement my image of the holiday, it is the feeling of gratitude that consumes me this week.
After a particularly long pause, my family traveled to Los Angeles to visit my husband’s siblings, in particular my sister-in-law, Anna, who has early onset Alzheimer’s disease.
Only 5 percent of Alzheimer’s patients are diagnosed under age
65, making it a particularly isolating experience. She was diagnosed in her 50s after a series of forgetful episodes such as reversing a.m. and p.m. when catching a flight.
I wrote about Anna a few years ago in this column. The breadwinner and star of the family, Anna and her husband were movers and shakers in Los Angeles, he the intellectual writer and journalist, she the fashion designer, winning awards and selling to chic boutiques and department stores around the globe.
Anna’s husband prepared me for her decline after our prolonged absence. Just as a child grows leaps and bounds in between visits, so has her disease. There are no telephone conversations anymore except for the midnight calls alerting us to a medical event or her going on a “walkabout” resulting in helicopter-led searches. Fittingly, she has been found in clothing boutiques or with apparel of unknown origin.
Anna still lives at home, lovingly attended to by her husband, now a full-time caregiver, and their teenage son, whose teen years have seen her transition from mother to a charge to be looked after.
My husband arrived ahead of us our first morning, and I was delighted to learn that when Anna saw her brother for the first time in over a year, she greeted him with recognition saying, “I love you.” As I ascended the steep staircase to their second-floor apartment, I turned the corner and found a vibrant spirit, hair colored and nails polished in metallic purple by her caregiver, who comes two days a week.
This time we brought our young children, a flurry of activity that I worried would be off-putting, but she responded by laughing and saying, “She’s so cute” about our daughter.
Anna rarely speaks, and barely a sentence is made, so these short phrases of adoration in her recognizable voice made the moment, and her, seem completely normal.
Over four days, we staggered our visits so we wouldn’t overwhelm her and so her 88-year-old mother, whom we also brought, could share calm and quiet afternoons or go for a walk with the caregiver. We shared takeout food and took the son on outings.
The thing about an illness is that the whole family needs care and attention.
Socializing with someone with Alzheimer’s and other forms of dementia requires a specific skill set. Our learning curve was softened by the expert advice and writings of local Alzheimer’s and dementia specialist Jytte Lokvig. Lokvig is also the host of the Rethinking Dementia seminar that I, my husband and mother-in-law have attended.
◆ While there is no one-size-fits-all guide, here are some tips on how to conduct yourself and thoughtfully engage a person living with dementia or Alzheimer’s.
◆ “The words we use affect our feelings toward our situations and the people we care for. If we talk and think of caregiving as a burden, it most certainly will be,” Lokvig said.
◆ When it comes to challenging behaviors and circumstances, the problem is often with the caregiver and a lack of compassionate communication.
◆ Those living with dementia are hyperaware of other people’s emotions, so be mindful of the mood and energy you bring into a room.
◆ Do things with the person and not for them. “Some memory-impaired people are sick and tired of being cared for,” Lokvig said. Use phrases like, “May I lend a hand/join you?” rather than, “May I help you/do that for you?”
◆ Face your friend when you speak with her, and talk at eye level. Make your loved one feel safe and comfortable by connecting with her. Get rid of unnecessary noise, such as a TV.
◆ Recognize when it’s enough to simply be in the presence of one another and not fill the time with chatter and activities. “We think that we’re soothing them by talking, but that’s not always true. I learned to shut up,” Lokvig said.
◆ There is dignity in taking a risk by permitting your relative to make some decisions for themselves.
◆ When helping with tasks seems daunting, it may be helpful to break them down into smaller steps. Start with, “Pick up the toothbrush” rather than, “Brush your teeth.”
◆ Instead of asking direct questions, present options. Limit them to two and add some visual cues — for instance, hold up two shirts to choose from. When ordering from a menu, share an observation about something you know your loved one would like: “The salmon looks delicious tonight. Does that sound good to you?”
◆ Substitute “Remember when” with a conversation starter like, “I was thinking of the time we went fishing at the lake.”
◆ Prepare youth and children to have a successful visit by encouraging them to slow down physically and verbally, enunciate and speak face to face.
◆ Understand aggression as an expression of your friend’s struggle to communicate. Aphasia, the loss of language, is terribly frustrating. Try to get to the root of the problem.
◆ Touch can be startling or aggravating. Ask, “May I give you a hug?” and be gentle with affection, guided by your friend’s cues.
◆ Kindness, respect and the golden rule are particularly important to those who are vulnerable. Even a person with advanced dementia recognizes tone of voice, condescension and disrespect.
◆ Talk about a diagnosis with your friends and family. Dementia and Alzheimer’s are chronic illnesses like diabetes. Sharing your news leads to a well of support and wisdom.
My anticipated worry leading up to our visit was quickly replaced with gratitude at how pleasant everything went and more so because of how fleeting these moments will become.
This Thanksgiving, I encourage you to write down a list of things to be thankful for. Sometimes being a few steps ahead of tears is all I need to be grateful, which offers perspective. May you and yours be blessed with an abundance of gratitude in all pleasures great and small.
Bizia Greene is an etiquette expert and owns the Etiquette School of Santa Fe. Contact her at hello@etiquettesantafe.com or 505-988-2070.
Visit family psychologist John Rosemond’s website at johnrosemond.com. Readers may send him email at questions@rosemond.com; due to the volume of mail, not every question will be answered.