The Atlantic

In Alzheimer's Disease, Maintaining Connection and 'Saving Face'

RICHARD SENELICK - Richard C. Senelick is a neurologist who serves as medical director of the Rehabilitation Institute of San Antonio. He is also editor in chief of HealthSouth Press.

inShare1NOV 27 2012, 5:35 PM ET

Part one in a series on how people with neurologic disorders open and utilize new channels of expression

uabmagazine/YouTube

I've decided that all older men with gray beards must look alike, because each week I am mistaken for someone else. But, if I were to shave my beard - which I have worn for over 40 years - I believe that my friends and colleagues would fail to recognize me. I would be a different person to them because of this small, physical change. 
If such a small change affects the way people see me, then the larger mental changes that Alzheimer's patients experience must truly and deeply change the way their loved ones see them. Dr. Daniel Potts, a neurologist at the University of Alabama, has begun studying the concept of "saving face" and preserving the "person" in people with dementia.
Dr. Potts' father, Lester Potts, became an acclaimed watercolor artist after his Alzheimer's diagnosis. He had lost his verbal abilities but could express his feelings through his art. This bolstered his retention of self-worth and dignity. His paintbrush let him bypass the part of his brain that Alzheimer's blocked, and communicate in a new way.
But before we find out more about art and Alzheimer's patients, let's go back to the "face" part of saving face for just a moment.

You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing.

How is it that most of us instantly recognize someone before they utter a sound? How can we can pick a certain individual out of a large group photo? Large portions of our brain are dedicated to facial recognition and interpretation. What we see may trigger whole sets of emotions, memories, feelings, sounds and even smells. A picture of my grandfather triggers the wonderful aroma of his ever present half-chewed-half-smoked cigar. I can't help but smile when I see his face.
We automatically interpret others' facial expressions, but as people age or develop neurologic disorders like Alzheimer's or Parkinson's disease, they lose their familiar range of facial expression. We look at or talk to our loved one and we no longer see what we saw before. People with Alzheimer's disease not only lose verbal abilities, but also lose the ability to truly express their thoughts and emotions with their faces. In turn, we lose the ability interact with them the way we did in the past. 
So, how can we learn what lies behind their eyes? Has the light gone out? Dr. Potts insists, emphatically, "No." He says, "We have to assure ourselves that our loved one is still with us, even though they don't always act like themselves. We do this by meeting them in their present-day world. We have to be open to their new ways of communicating, and help them find novel avenues for this expression."
We tend to preserve a mental image of the person as they were prior to their illness, the way we've known them our whole lives. Think about when you reunite with someone you haven't seen in 20 years. Before you meet with them, you have an image of them from 20 years ago frozen in your memory. You are always at least a little surprised that, in reality, they have aged. You might recoil at the thought that they must be thinking the exact same thing. As our parents age, we continue to see them as the people that we love and in the roles that they played in our lives in the past -- strong, supportive, and knowledgeable.
On top of these innate feelings, we ground so much of our adult identity in our vocational accomplishments that without them, many of us lose all personal identity. Of course, we don't want to be known only for our prior achievements. We want to be respected and admired for who we are now and what we contribute to our friends, families, and society. Those with Alzheimer's are no different.
Dr. Potts insists that when illness strikes we must validate the person in the present and "learn to love and appreciate who they are in their now." The person with Alzheimer's disease will not return to who they were so we must meet them and accept them in their new role. Dr. Potts tells family members and health care professional that they must:

• Discover who the people were by taking the time to learn their story.
• Appreciate who they are now and see them as more than their illness.
• Demonstrate for them their current worth.
• Help them preserve their personhood and dignity.
• Find channels for expression that bypass those blocked by their disease.
• Help them "save face."

We must develop new "languages" to help those with cognitive disorders communicate with us, for they still have much to say. Dr. Potts asserts that people with Alzheimer's disease are still "rich" with thoughts and ideas, but need new channels to express those thoughts and ideas. His father used water colors while others have used music, poetry or dance. Rather than park them in front of a television, we must explore alternative channels of communication that bypass the blocked channels in their brain. Dr. Potts tell us that we must provide the tools that provide an environment that focuses on the person, not the disease, and offer a variety of opportunities for expression that bypass the person's disability.
When faced with a person with a spinal cord injury or amputation, their doctor or therapist focuses on their strengths and builds upon their "abilities." Unfortunately, in progressive neurologic disorders, like Alzheimer's disease, we are more likely to focus on the eventual outcome of the disease and not on the person's reservoir of abilities. Dr. Potts tells us that we must recognize "that personhood still exists, even in the presence of Alzheimer's disease and assist the person in saving face."

Be Strong

Meditation

Last week in my Nidra Yoga Meditation class I realized that instead of being better able to deal with my impatience and at times lack of compassion for Gregory, I needed to work on dealing with the feeling that I get in my chest when an interaction or communication with Gregory goes awry. If I can identify the "feeling" when it arrives and diffuse it, I will be patient and compassionate even more than I usually am. It is the confusion, fear, and anger behind the "feeling" that causes me to be impatient. One step closer to perfection '-)

I am taking a class at the Heartwood Center in Evanston with Corinne Peterson.
http://www.corinnepeterson.com/yoga-therapy/

Meditation

Today in my Mindful Meditation Yoga class I realized that I can hold joy within me and keep sadness on the outside. I can invite the sadness in when I want to process it but I do not have to live with it and do not have to let it in uninvited.


I am taking a class at the Heartwood Center in Evanston with Corinne Peterson.
http://www.corinnepeterson.com/yoga-therapy/

Happy Thanksgiving

Boredom

Every now and then I receive an e-mail from Caring.Com http://www.caring.com with an article which I find so helpful that I want to share it here. 

This article which I have reproduced here, dealing with boredom, was something I was aware of Gregory beginning to deal with and I have been working to alleviate boredom for him. It had not yet clicked with me that I could help reduce it more for Gregory when it came to letting him help around the house.

I have been able to find new activities for him like reading a newspaper (when his computer skills left,) or coloring in mandalas (which presented a more spiritual activity when compared to child like "coloring.) I change the complexity of jigsaw puzzles which he still loves to do. He still reads so I help him find books and we have subscribed to magazines with lots of pictures. He has several favorite perpetual calendar type books which features a beautiful photograph or architectural building each day and we have been using those for several years now.

We go out with friends, do a lot of entertaining at home, attend theater and opera, he has two companions with whom he is able to be out and around, we just began structuring his ability to go swimming in the building's pool, have our favorite TV shows, watch movies from NETFLIX or by streaming from our cable provider.

There is so much that he used to be able to do life skill wise that he can no longer do. So I pick up the slack and create a life for both of us. Often it is just easier for me to do the task then to try to explain it to Gregory. So I shop, clean, cook, fix, decorate, cut flowers, etc.

What I haven't been doing is going out of my way to figure out how to continue to include him in helping with our daily activities in a way that matches his declining abilities. I will begin to do so as of today with the motivation provided by this article.

Hi mhorvich, Here's a risk that's often not on caregivers' radar but that can influence the mood and, in turn, behavior of a loved one with moderate-stage dementia: Boredom. You may feel you have 10,000 things to do in your day, but that's not usually the case for someone struggling with memory loss and other changes. Favorite activities, from reading to hobbies, are often abandoned as they become frustrating; friends may become scarce. And your loved one has also largely lost the ability to initiate new things to do. Although playing social and activities director adds to your workload, it may reduce behavior problems that boredom can trigger, such as aggression or anxiety. You don't need a huge menu of possibilities. Many people with dementia are content repeating a handful of tasks or satisfying activities. How to Keep Someone With Alzheimer's or Other Dementias Busy and Active By Paula Spencer Scott, Caring.com senior editor Successful activities for someone with Alzheimer's or other dementias Keeping busy stimulates the brains of people with dementia while boosting a sense of usefulness and accomplishment. But they lose the ability to select satisfying activities and follow through on them -- so you need to initiate things to do. Too much idle time can make anyone feel lonely and unproductive, raising the risk of depression, agitation, and anger. Build on activities the person has always enjoyed. A bridge player may no longer be able to keep up, but she may enjoy holding cards and playing a simpler game, such as Old Maid or Solitaire. But introduce new ideas, too, to see what "clicks." Aim for the "sweet spot" -- not too easy, not too hard. If an activity is too simplistic or childish (like coloring books for kids), the person might feel insulted or bored. If it requires remembering sequences or is otherwise above the person's cognitive level, it will frustrate and turn her off. Take common changes of dementia into account. The attention span shortens. Changes in recent memory make it hard to follow activities with multiple steps or instructions (such as cooking). Less self-critical people with dementia may be more open to art. Musical ability tends to be very well retained. Take glitches in stride. Don't be a stickler for things being done the "right" way or according to rules. If it bothers you that dishes are rinsed improperly, for example, redo them yourself later without comment. The main consideration should be how the activity makes the person feel: involved, purposeful, successful. Look patient, act patient, be patient. Impatience or anger tends to make the person with dementia anxious or balky. Don't give orders and make suggestions. Watch your body language, too: She'll be more tuned in than you might think to a knitted brow and heavy sighs. What helps: encouraging comments and realistic praise (without talking down or using an exaggerated voice), saying thanks where appropriate. Don't challenge or argue. Avoid asking "Why" when something goes awry. People with dementia likely don't know why they did something peculiar (like store a paint set in the refrigerator). Gently suggest an alternative: "I don't think the paint should get cold, so let's store it here on the desk." Rational arguments are useless because the person's emotions are stronger than her logic. Make activities routine. If an activity is a hit, do it every day or two. Or do the same thing, slightly modified: folding towels one day, sheets the next. Pursue categories of activities at about the same time every day (physical or outdoor in the morning, quiet handiwork after lunch) to add comforting structure to the day. Great physical activities to try with someone suffering from Alzheimer's or other dementias Household work Rinsing and drying dishes or loading a dishwasher. Folding laundry. Matching socks. Dusting. Vacuuming. Watering plants. Arranging flowers. Peeling potatoes or apples, snapping beans, shelling peas, husking corn. Washing vegetables, kneading bread, making salad, stirring pots. Decorating cookies, cupcakes, cakes. Simple mending, such as replacing buttons. Polishing silver, polishing shoes. Washing windows (but not on a stepstool or ladder). Setting the table. Try providing items one at a time: first all the plates, then all the forks, then the knives, etc. Organizing books (by size, alphabetically, by color). Organizing a messy drawer. Clipping coupons (whether you actually use them or not). Bringing in the mail or newspapers. Sorting and rolling coins. Recreational activities Playing card games, especially old favorites or simple games like War. Consider large-print cards. Playing board games, such as checkers or Chinese checkers. Working word-search puzzles. Look for large-print versions of books. Flipping through scrapbooks or photo albums. Identifying people in old photos. (Write down what you learn!) Reading books and magazines; look for those heavy on images (coffee-table books and magazines on design, travel, photography). Working jigsaw puzzles. You may need to experiment to find some that challenge without frustrating. On the bright side, you'll be able to use a successful one repeatedly. Consider puzzles designed for people with dementia. Playing catch with a softball or beanbag. Spending time with animals. Visit a neighbor's dog or arrange to have a child bring one over every day. Visit a pet store. Provide a fish tank or goldfish bowl. Going out for ice cream cones. Not having to sit down, as you would at a restaurant, may be less stressful. Following an exercise video. Check YouTube.com for that favorite of '60s and '70s housewives, Jack LaLanne, an icon ahead of his time who may be familiar to the person you're caring for. Listening to old radio shows (check your local library or alzstore.com). Playing dance music and dancing. Watching a digital picture frame with rotating images of family members. Set it so pictures change slowly. * Ask open-ended questions about the pictures as you watch. Reading old comics. Look for books that are collections of classics from the person's era, like Peanuts, Family Circus, Little Nemo. Looking through a personal-memories box. Include such items as military pins, baby clothes, postcards, pictures of old houses, costume jewelry, and other tactile icons that have meaning to the person. Caring for a doll. In late-stage dementia, people often find comfort in "taking care of" a baby doll or simply cuddling and stroking a stuffed animal. Outdoor activities Limit activities to a confined area, or provide a watchful eye if the person is prone to wandering. Tending a garden: weeding, hoeing, watering, monitoring. (Indoor variations, such as an herb garden, orchids, or a terrarium, also provide sensory stimulation.) Raking leaves or sweeping a porch. Picking up sticks. Watering the lawn. Planting bulbs. Taking a walk (with a companion). Feeding birds, ducks, fish (or watching a bird feeder placed outside a window). Arts and spiritual activities to try with someone suffering from Alzheimer's or other dementias Handiwork Stacking kindling. Organizing a toolbox or workbench. Sanding wood. Washing or polishing a car. Tightening screws. Painting (such as a fence). Digging holes. Working a lockbox (a wooden box featuring a variety of locks). Arts activities Experimenting with different materials, such as watercolors, clay, pastels, washable markers. Drawing or coloring. Search amazon.com with the phrase coloring books -- there are many with patterns or adult-friendly themes. Creating a family history scrapbook. Using an electronic keyboard or child's zither. Singing along to holiday carols or songs from a favorite era. Listening to audio books. Listening to a music box at one's bedside. Stringing popcorn or cranberries (for holiday decorations) or cereal and popcorn (for birds). Creating collages. Use leaves, magazine images, tissue paper, buttons, but beware of small choking hazards for people with advanced dementia. Stamping to make gift tags, cards, or just for fun. Find supplies at any craft store. Spiritual Activities Singing hymns. Being read to from religious texts. Walking a labyrinth. Making crafts together for a charity, which can be more rewarding than making a craft for yourself. Someone who crochets might use a simple, repetitive pattern to make scarves or lap blankets.

A Play in A Series of Poems

I have written many pieces of poetry chronicling the path which I have traveled with Gregory, my life partner of over 35 years, who was diagnosed with young onset Alzheimer's Disease some ten years ago when he was fifty five years old. For the most part, the feedback on my work has been favorable. 

For a next project, wouldn't it be interesting to try to write a screen play in which the audience would experience what a person with Alzheimer's goes through and what those who love him endure? It probably wouldn't be hard for me to write the screen play because I have so much material from which to draw.

The question, however, is who would want to watch it? Who would want to sit through some 90 minutes with one intermission of heaviness, sadness, frustration, confusion, depression and tears even if laced with love, compassion, insight, and humor?

Being Aware

I have spent quite a lot of energy trying to explain what it is like to live with and love someone with Alzheimer's. I struggle and struggle to understand it and therefore the subject shows up a lot in my writing. Peter, my therapist says it cannot be explained, and although I know he is right, I keep trying.

I can give examples, of which there have been many in these blogs, but I still cannot put my finger on exactly what I am experiencing during these situations gone awry. Here is one more example. Gregory was sitting in the car and had put a carry bag on the floor between his feet. When we arrived at our destination, he unfastened his seat belt, opened the door, but then had some difficulty getting out of the car because of the carry bag.

He interpreted the difficulty to not having unfastened his seat belt so he began fumbling around to release it. He did find a belt, the one holding up his pants, so he began to take that off. I stopped him, took the bag from between his feet, and instructed "Now you can get out." At this stage of the disease, I don't try to explain to him what went wrong (and maybe I would be better off if I didn't try to explain to myself.)

While spending some time trying to answer this question once more with friend and Alzheimer's researcher Aaron and his wife Brady, I think I came closest to understanding why I am having such a hard time trying to explain what experiencing the disease from the caregiver side is like, what I go through in dealing with some of the "crazy" behaviors and interactions that Alzheimer's brings to our daily life.

What I finally understood is that one can only truly understand something that one can experience. Since I do not have Alzheimer's, I will never truly understand it because I cannot truly experience what it is like to have the disease. I can only experience it from the outside looking in. Also, the nature of Alzheimer's is that it invents itself as it goes along, not based on any rhyme or reason so how can one have a rational, reasonable grip on understanding it.

This nature of thinking and being and feeling takes place through the creation of a millions and millions of interconnected thoughts and experiences which when combined produce language, memory, behaviors, personality, emotions, etc. How any one individual combines those interconnected pieces will be different from the next so that pushes the possible combinations into infinity. One should marvel that communication and interaction between members of the species takes place at all.

So when the brain begins to collect plaque, when synapses get tangled, when associations and connections begin to short circuit or disappear, when the complex web that is thinking begins to misfire, when the many parts of what it took to learn have gone missing, when the integration of a person's personality begins to disintegrate ...  there is no way for the outsider (i.e. you or me) to really experience and therefore understand the manifestation of the disease.

With that said, I will probably continue to work at being as articulate and even lyrical as possible in my blog descriptions as I continue to search for understanding. That search will last long after Gregory is gone. Unless I leave first and then maybe I will be at peace in my search.

No Day But Today 

Artist: Idina Menzel from "Life: Barefoot At The Symphony

There’s only us, there’s only this
Forget, regret, or life is yours to miss
No other path, no other way
No day but today

There’s only us, only tonight
We must let go to know what’s right
No other road, No other way
No day but today

I can’t control my destiny
I trust my soul, my only goal
Is just to be

There’s only now, there’s only here
Give in to love or live in fear
No other path, No other way
No day but today

There’s only us, There’s only this
Forget, regret, or life is your’s to miss
No other road, no other way
No day but today

Lotion Logistics

This morning he was rubbing his chin as though it was irritated from shaving. "Did you put lotion on your face after shaving?" I asked.

Sure enough he hadn't, so he got out the lotion, figured out how to take off the cap, poured a quarter size amount on his hand, spread it on both hands, and proceeded to work the lotion well into his hair.

When I reviewed this with him, he attempted again.

He poured a quarter size amount of lotion on his hand, spread it on both hands, and continued to work it well into his hands, front and back, and each finger until the lotion was completely absorbed.

When I reviewed this next phase with him, he got a little frustrated and confused. So I tried to explain, "The lotion is for your face because it is irritated after shaving."

As I said this I put my hands to my face by way of demonstration while at the same time thinking that I was probably only adding to his confusion by the fact that my face is bearded and his is not.

By now I am thinking that he probably doesn't remember what it is we are trying to do so I started over.

Why don't you put some lotion on your face. He again picked up the lotion bottle, figured again out how to take off the cap, poured a quarter size amount on his hand, spread it on both hands, looked up at me for approval, received it, and then put it on his face and rubbed it in.

Mission accomplished (but not easily and not without a lot of patience - probably on both of our parts.)

Nursing Care

I do not want to admit it but I think we have moved closer to the "Nursing Care" phase. Not so much medical needs but more daily, detailed support. Since associations continue to disappear, words loose meaning, even one direction at a time doesn't work so I have to "do it for him." Sometimes that means "Do it to him."

Laying out his clothes has become necessary and even then the pile of suggested clothes does not work and he goes off in another direction. I have had to help him on with his shirts, make sure he remembered his underwear, and comb his hair for him. Often he will be full dressed but his pants and wonder what's next. Sometimes he will attempt to put on two pair of pants when he was really in the closet looking for a pair of shoes.

I have been more alert to his personal hygiene needs like suggesting he shower, making sure he remembers how to shower, putting lotion on his face for him, making sure he wipes (-: Too much information :-) Today I will trim his toe nails and groom his feet. He comes to me with "dry patches" and asks what to do. When he is in pain, he is no longer able to describe it so I enter into a guessing game, sometimes guessing with him and sometimes playing by myself.

Recently he seems to have disassociated from "place." He complained about a pain in his knee (at least I think so because while he wasn't able to use words I relied on body gestures) and when I asked him to describe it, his hand hovered in the air some six or eight inches away from his knee, "Here," he said. I touched his knee and said, "Touch where it hurts." He continued hovering.

When I asked him after shaving if his face was irritated, he pointed to the lamp on his desk and said, "This always takes care of it." What I think he was doing was pointing in the direction of the medicine cabinet where the lotion is kept as if he was standing in front of the cabinet and not sitting at his desk. I replied, "Oh, OK."

A while back at meal times I started adding the condiments, salting and peppering his steak, buttering his veggies. I continue to point to his fork or knife when he hesitates and out of frustration he is using his fingers more and more. Now and then I have found that I need to cut up his food. Try doing that and helping him keep his dignity!

When we go out into the cold I make sure he has his gloves, scarf, ear muffs, and the right coat. When we arrive somewhere I put his gloves in his coat pocket as that is not a skill he still has. If I say "Put your gloves in your pocket," he will attempt to put them in his pants pocket or just look confused. When we leave I must be on the alert to make sure he has gathered all of his belongings. You can imagine that as I spend so much attention keeping him together I have begun to leave my things behind.

I am afraid to let him go to the bathroom by himself in a public place so I go along. I try to be unobtrusive (especially when others are in the bathroom) but sometimes I have to help him with his pants. Once or twice had to explain how to use a urinal as he was about to pee through his underwear. Sometimes I'll just go into a booth with him, onlookers be damned.

And, as I have often ended these rants, some days he has no troubles with any of these skills so when I intervene it then confuses him or he waves me away. "Roles and rules are subject to change on a moment's notice and sometimes not even that." M.Horvich 2012.

Social

We have been busy and that is good.

Gregory has been spending his Tuesdays painting after a brief hiatis. He loves his time with Nancy Rosen www.nrosen.com and he continues to be as creative and prolific with his paining as ever.

Went to see "You Can't Take It With You," the movie, yesterday and on Friday look forward to seeing the play by the same name. The original Moss & Hart play premiered in the 1930's and it is one of our favorites. It is great living so close to Northwestern University and being able to benefit from the cultural experiences there.

Also at Northwestern, we attended an Opera Master Class with Nathan Gun, world renowned baritone. Five students from the graduate program at NWU each performed a piece and then Mr. Gun gave suggestions to guide their improvement.

We saw three operas in two weeks: Werther, Elektra, and Simone Boca Negra. All were at The Lyric Opera of Chicago where Gregory and I, volunteering during tech rehearsals, are entitled to see all of the season's dress rehearsals.

Going out to dinner tonight with neighborhood friends and again tomorrow to help a friend celebrate his 60th birthday.

Gregory has begun swimming again and is very pleased with himself. Ken and Ben, his companions join him at the pool and that has helped him to navigate getting from the condo downstairs to LA Fitness and back since he cannot do that on his own anymore.

For Thanksgiving we will be with Nancy Rosen's family. Her mom, Eileen, who lives in our building and is a good friend will be there as well.

Of course the day after Thanksgiving we will decorate for Christmas and begin baking. Busy hands are hands that do not wring themselves over Alzheimer's!

Some Flip Observations

Shoes and sox have turned into wondering "What's next?"

The belt and the belt loops no longer recognize each other.

Reading glasses when worn make the room look blurry.

Reading glasses when not worn do not help with reading.

Sleep clothes when left in the bathroom are not in the drawer at bedtime.

Underpants and undershirts no longer have names or identities.

For that matter underpants and undershirts no longer have fronts or backs.

Sometimes pointing helps, sometimes the response is non-directional.

Button-up shirts are pulled over and pull-over shirts have too many holes.

A hanger's only purpose is confusion.

Taking something out of a pocket from the inside does not work.

Knives and forks do not work as easily as fingers.

"No" often means "Yes." So what does "Yes" mean?

Putting ice into a glass at dinnertime consists of too many steps.