My parents liked to celebrate Valentine’s Day with dinner and dancing.  Years into my mom’s Alzheimer’s journey, my parents’ love hadn’t diminished, but my mom’s capacity for going out to dinner and dancing had drastically decreased. I saw how blue my father was—one more event he had to give up, one more change in the woman he loved—and I searched for alternatives that might cheer him up. Here are five ways to make Valentine’s Day special.

Look for a favorite thing. Seek one simple pleasure your loved one might enjoy. Mom loved potato soup and chocolate and fresh strawberries. These were part of our celebration.

Nurture yourself: include your own favorite thing. Bring yourself into the celebration and include something that makes you happy. I brought foods my father and I both liked as part of our little party.

Pick several ways to express your love.  Poetry, music, gifts, flowers, and photo albums—you can use any of these resources as a catalyst to talk about your feelings. Dad and I sang Mom old show tunes and love songs, music she really enjoyed. Mom adored Shakespeare; we had a couple of sonnets on hand.  She and Dad had once created a beautiful flower garden; Dad brought her a single red rose.

Take joy in the simple act of expressing yourself. Being with my mom was a chance to really practice the mythical “unconditional love.” Mom couldn’t tell me she loved me. During one Valentine’s Day celebration, she fell asleep while I was holding her hand and talking sweetly to her. But there was a comfort in expressing my love and I kept on talking.

Celebrate love in all its glorious guises. During their long marriage, my father had walked into a room millions of times and often, Mom had been busy and hadn’t particularly smiled or remarked. But with her dementia came a deep dependency on Dad. When Dad walked into a room, my mother’s face lit up. My father basked in that light. The sparkle in my mother’s eyes was the new, “I love you, darling.”  The light said everything my mother could no longer say.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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We were already in a holiday mood. A layer of sparkling snow blanketed Kansas City. Our generous neighbors at Cosentino’s Market in Brookside donated fresh-baked sugar cookies, colorful frostings, and cheerful sprinkles so our guests could decorate their own holiday cookies. Now we were ready for singing in the season with the Kansas City Symphony at the KC Memory Cafe. 
You’ve probably read about the intimate concerts of earlier times: stellar musicians gathered in a drawing room offering their talents to a small group of esteemed guests. As we settled into the Lower Level of the Plaza Library, a quartet of symphonic musicians assembled to play holiday music just for us. What a treat to nibble on the sweet decadence of sugar cookies while listening to angelic arrangements of holiday favorites. We swayed, we hummed, we sang along, and applauded vigorously as the magical music connected and transported us.
As the musicians launched into Jingle Bells, we heard an extra jingling. It was our own Santa Claus, bringing us his jolly “Ho, ho, ho’s” and a bag of Christmas cheer. We all sang, “We Wish You A Merry Christmas,” celebrated our musicians, and had our photos taken with Santa. We left humming and hopeful.#
Thanks to the KC Symphony for the amazing gift of music. Thanks to Cosentino’s Market for the delicious treats. And thanks to our attendees, our Dementia Friendly partners, and our amazing community volunteers. 
We hope you can join us for our 2020 dementia friendly series. Our Movies & Memories program meets the first Wednesday of the month at 10:30 in the Truman Forum of the Plaza Library. We enjoy live music, great movie clips, and delicious popcorn. 
Our KC Memory Cafe meets on the third Tuesday of each month in the lower level of the library. 
Our featured Cafe presenters will include the Kansas City Zoo, the Kansas City Ballet, the Nelson-Atkins Museum of Art, the Kemper Museum of Contemporary Art, and the The National Museum of Toys and Miniatures. All are welcome. 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Thanksgiving changed the year I went vegetarian. I did not mind giving up the tender, moist turkey or the savory oyster-specked stuffing. But giving up the flavorful flow of mushroom-laden gravy was quite another thing. I watched enviously as my family ladled the luscious liquids over their mashed potatoes, turkey and stuffing. As I nibbled dryly on my carrots, green beans and salad, my lower lip protruded. I felt left out and deprived.

My brother, Dan, ever alert to the pouting big sister, came up with a solution.

“Next year I will make special vegetarian gravy just for you,” Dan promised.

Years later, that special vegetarian gravy has become one of my favorite Thanksgiving rituals. I begin fantasizing about it the moment the autumn leaves turn crimson. I know that in mere weeks, my brother and his family will arrive and I will have my yearly boost of family and feasting, highlighted by gravy.

When my brother calls to tell me his travel plans, I write his arrival time and GRAVY on my calendar. The night he comes to town, we make the shopping list together, avidly discussing how many pounds of mushrooms we need for both the carnivore and vegetarian pots of gravy. I relish the early-Wednesday morning trip through the grocery store, where Dan and I and our children carefully select the foods we will be making the next day. We linger in the produce aisle, filling several sacks with gleaming white mushrooms and buying rustling yellow onions.

On Thanksgiving Day, Dan and I and other family members spend long, luxurious hours cooking. Dan mans the stove and I manage the slicing and chopping. Together we snap, peal, slice and dice the vegetables that will accessorize the turkey. I take special pleasure in wiping clean and slicing the mushrooms, then bringing my brother the brimming bowlful. When he has nodded his approval, I get out the old copper pot I bought in Germany in the early seventies. This year, Dan is improving his already amazing gravy. With his new immersion blender, he creates a rich base of caramelized onions, whose flavor surpasses that of the lowly vegetable cube. He adds in a little flour, then gentles the mushrooms into the onion broth. When the pot is bubbling with thickening nectar, he says, “Taste this and see what you think.”

I always think the same thing—“Wow, this is great.”

We are in a state of giddy and satisfied exhaustion by the time our guests arrive. We share grateful prayers with everyone and lay out the feast, including plenty of turkey-based gravy for the rest of the family.

Then comes the moment I have been waiting for: I sit down, my own personal pot of gravy poised by my plate. I cover the mashed potatoes, carrots, green beans, and salad with the aromatic concoction and I savor every bite. But more importantly, I savor the bounty, creativity, and love that have gone into this simple dish. Through this gravy, my brother speaks with his hands and his heart, saying: “I care about you and I am going to make sure you are not left out and that you have something fantastic to eat.”

For that and so much more, I am thankful.

…………

And now, if you’d like to create a Thanksgiving love story, bring home this delicious gravy.

Dan Barnett’s Chicago Style  Never-Enough-Mushroom Vegetarian Gravy

Ingredients

2 large onions (chopped)

2 pounds (or more) white button mushrooms sliced (can add some portabellas for enhanced flavor)

1 cup of white wine (of lesser quality)

Salt & pepper to taste

2 tablespoons of cornstarch

Olive oil

For 5 cups of water, start out with 2 vegetable boullion cubes. Add more if needed.

Directions

To create the gravy base:

In a four-quart pot, pour a thin layer of olive oil and turn the burner on medium.

Add the onions and sauté for10-15 minutes until they are caramelized (golden brown)

Add water until the pot is about half full.

Simmer slowly for 30 minutes.

Blend the onion water mixture using either an immersion blender or by transferring the mixture to a food processor.

Add the 2 pounds (or more) of sliced mushrooms white wine and fill the pot with water until it is 3/4 full. Simmer for 15-20 minutes.

In a small bowl,  put 2 tablespoons of cornstarch.  Pour in a small amount of the broth. Once it’s a smooth paste, pour in more liquid to make it a runny paste. Then pour the mixture slowly back into the gravy while stirring. This will thicken it. You may have to do this a couple of times to achieve the desired thickness.

Simmer for 30 minutes and season to taste with salt and pepper.

###

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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There is something wonderfully connective about watching silent comedies by two of the world’s greats—Charlie Chaplain and Buster Keaton. Those black and white classics make you want to laugh, reminisce, and act a little silly yourself. And when there’s a pianist on hand, punctuating the wit and melodrama, the experience is even more compelling. Those silent films inspired peals of laughter at August’s KC Movies & Memories at the Plaza Library.

First, our guest musician, Kenny Harrison, engaged us in a lively sing-a-long. Then we watched One Week, a Buster Keaton masterpiece. Thomas Cooke is a retired professor of film. He and his wife Deborah spent hours previewing the iconic comedians, picking out three clips just for our program. For anyone who has ever tried to repair or build anything, this short film is a must. Next, Charlie Chaplain entertained us with Oceana Roll. “Charlie’s friends wanted him to do the roll dance every time he dined with them,” Thomas told us. Finally, we were on the edges of our seats with a clip from Modern Times. Note: Roller skate indoors at your own peril. 

Click here to enjoy some moments from this entertaining event.

In between films, we talked about the movies and how we related to them. One of our guests was a carpenter. Others had experiences with home repairs. We all marveled when Thomas told us that Keaton did all his own stunts. 

The movies stayed on our minds for several days. In fact, at dinner two nights later, we tried with Oceana fork dance with cucumbers.  (Where are the dinner rolls when you need them?) It was a lot harder than it looked. 

Click to view informative and inspiring short videos on our YouTube channel

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Our Uber driver in New Delhi was a turbaned Sikh with a long gray beard. A sign hanging from the rear view mirror proclaimed, “This car respects women.” He deftly drove us through the city, navigating the melee wherein four lanes of cars compete in a two-lane space. Inside the NGO, Hope Ek A.S.H.A., the receptionist led us into Dr. Chawla’s office. Dr. Chawla has a rich voice and a magnetic presence. She is the catalyst for this center for caregivers, creating the service because of her own experience with her mother and Alzheimer’s.  We were coming together to ignite hope. 

“We know how hard it is for the caregivers,” she says. She and her team help caregivers throughout New Delhi and indeed, throughout the world, educating them, visiting with them and their loved ones who are living with dementia, facilitating support groups, sharing stories and ideas, offering respite and financial support as possible. 

For this event, she has gathered a group of doctors, caregivers, support staff, and more. First, some of her team show us activities they do with clients who are living with dementia. These include chanting, deep breathing, gentle stretching, tapping (EFT- Emotional Freedom Techniques), and a lovely heart opening exercise that affirms “We are healthy, we are happy.” They show us painting and games that strengthen memory.

Join us for these interesting exercises:

Then a caregiver from Mumbai Skypes in. Her voice is sad and her face is drawn and pale. She wipes at her eyes as she discusses her issues with her father. Instantly, one of our caregivers steps forward to offer advice. I share ideas with her as well. Then Dr. Sahi, leader of the New Delhi Laughter Academy, guides us in laughter exercises. Within minutes, we are all laughing, even our friend from Mumbai. When the session ends, the worn and weary caregiver has been transformed into an energetic and renewed woman, one who believes there is hope. 

       That’s is one of the reasons we all came together: our mutual hope and our belief that everyone needs support and a sense of community and purpose.

Experience our New Delhi caregiver’s event by watching this video:

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Our hosts started the program with a beautiful hymn of gratitude, a perfect way to acknowledge the spiritual aspects of connecting and laughing in the land of dementia. We met in the Salvation Army Church and Community Centre in historic downtown Falmouth, Jamaica, with a group of caregivers and community advocates. During our time together, we shared stories, information, laughter exercises, and creative ideas for taking care of ourselves and staying engaged.

For many, this was an introduction to dementia. For others, who were in the midst of caregiving, this was a time of learning and sharing. 

Ron and I talked about the importance of accepting each other as we are, no matter what we are going through. We discussed the power of having a purpose and how vital it is for all of us to have meaningful relationships and interesting experiences. . 

”When communicating with people who are living with dementia, don’t argue,” Shirley Duncan reminded everyone. “Don’t criticize. Be there to support and appreciate.” 

“When we are kind to ourselves, then we are better able to be kind to others,” one of our attendees said.

We discussed Dr. Cameron Camp’s concept of cognitive ramps, offering people the assistance they need to remain engaged in the activities they love. Here’s one example from our session: Lorna’s mother was a professional cook, completely at home in the kitchen. As her dementia progressed, she could no longer remember the family’s favorite recipes. But she could sit in the kitchen and enjoy the energy of cooking. And when Lorna’s daughter said, “We are going to make your famous stew. Does it have an onion in it?”  the mother smiled and nodded. Ingredient by ingredient, they consulted her, and she smiled and nodded at the mention of the right ingredients. Even though she wasn’t physically creating the meal, she was an integral part of the process.

We talked about the power of music, sharing ideas from Dan Cohen’s Music and Memory program and introduced people to the personal playlist.  We had an impromptu Conductorcise session, using Maestro David Dworkin’s aerobic and ground-breaking program, pretending we were conducting a symphony orchestra. We used laughter syllables to make it even more fun and soon everyone was standing up and conducting and laughing.

We shared a story from Karen Stobbe, reminding us all to affirm and appreciate and to use the improv technique, “Yes and…” to ignite and invite conversation. 

Throughout our discussion, we wove in laughter exercises.

We enjoyed an imaginary laughter swim. We batted around laughter balloons and cooked up a laughter stew that included fish, pumpkin, garlic, carrots, Irish potatoes and okra. 

At the end, we breathed in our gratitudes, closed our eyes and sent our feelings of love, connection, and laughter into the world, hopefully to help and inspire others. 

Click here for a small taste of this lively workshop:

A special thanks for the dementia advocates and community volunteers who brought everything together, including Dundeen Ferguson, Shirley Duncan,  Sandra Latibeaudiere, Elise Thomas, and Lorna Colley. And thanks to everyone who attended.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Thanksgiving changed the year I went vegetarian. I did not mind giving up the tender, moist turkey or the savory oyster-specked stuffing. But giving up the flavorful flow of mushroom-laden gravy was quite another thing. I watched enviously as my family ladled the luscious liquids over their mashed potatoes, turkey and stuffing. As I nibbled dryly on my carrots, green beans and salad, my lower lip protruded. I felt left out and deprived.

My brother, Dan, ever alert to the pouting big sister, came up with a solution.

“Next year I will make special vegetarian gravy just for you,” Dan promised.

Years later, that special vegetarian gravy has become one of my favorite Thanksgiving rituals. I begin fantasizing about it the moment the autumn leaves turn crimson. I know that in mere weeks, my brother and his family will arrive and I will have my yearly boost of family and feasting, highlighted by gravy.

When my brother calls to tell me his travel plans, I write his arrival time and GRAVY on my calendar. The night he comes to town, we make the shopping list together, avidly discussing how many pounds of mushrooms we need for both the carnivore and vegetarian pots of gravy. I relish the early-Wednesday morning trip through the grocery store, where Dan and I and our children carefully select the foods we will be making the next day. We linger in the produce aisle, filling several sacks with gleaming white mushrooms and buying rustling yellow onions.

On Thanksgiving Day, Dan and I and other family members spend long, luxurious hours cooking. Dan mans the stove and I manage the slicing and chopping. Together we snap, peal, slice and dice the vegetables that will accessorize the turkey. I take special pleasure in wiping clean and slicing the mushrooms, then bringing my brother the brimming bowlful. When he has nodded his approval, I get out the old copper pot I bought in Germany in the early seventies. This year, Dan is improving his already amazing gravy. With his new immersion blender, he creates a rich base of caramelized onions, whose flavor surpasses that of the lowly vegetable cube. He adds in a little flour, then gentles the mushrooms into the onion broth. When the pot is bubbling with thickening nectar, he says, “Taste this and see what you think.”

I always think the same thing—“Wow, this is great.”

We are in a state of giddy and satisfied exhaustion by the time our guests arrive. We share grateful prayers with everyone and lay out the feast, including plenty of turkey-based gravy for the rest of the family.

Then comes the moment I have been waiting for: I sit down, my own personal pot of gravy poised by my plate. I cover the mashed potatoes, carrots, green beans, and salad with the aromatic concoction and I savor every bite. But more importantly, I savor the bounty, creativity, and love that have gone into this simple dish. Through this gravy, my brother speaks with his hands and his heart, saying: “I care about you and I am going to make sure you are not left out and that you have something fantastic to eat.”

For that and so much more, I am thankful.

…………

And now, if you’d like to create a Thanksgiving love story, bring home this delicious gravy.

Dan Barnett’s Chicago Style  Never-Enough-Mushroom Vegetarian Gravy

Ingredients

2 large onions (chopped)

2 pounds (or more) white button mushrooms sliced (can add some portabellas for enhanced flavor)

1 cup of white wine (of lesser quality)

Salt & pepper to taste

Olive oil

Directions

To create the gravy base:

In a four -quart pot, pour a thin layer of olive oil and turn the burner on medium.

Add the onions and sauté for10-15 minutes until they are caramelized (golden brown)

Add water until the pot is about half full.

Simmer slowly for 30 minutes.

Blend the onion water mixture using either an immersion blender or by transferring the mixture to a food processor.

Once you have the gravy base

Add the 2 pounds (or more) of sliced mushrooms, white wine and fill the pot with water until it is 3/4 full.

Simmer for 30 minutes and season to taste with salt and pepper.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Laurie Scherrer is a light in the universe. I met her on the radio, when she co-hosted the ground-breaking program Alzheimer’s Speaks, with Lori La Bey. I was instantly inspired by Laurie’s warmth, honesty, humor, and insights. Each time I talk to her, I have fun and I learn from her. Recently, I asked her, “How can I support you in the wonderful advocacy work you are doing?” Laurie answered, “You can repost this blog, What They Don’t Tell You about Dementia.”

Laurie’s post is not just inspiring: it could be life-changing for someone who is newly diagnosed with dementia. After reading it, you’ll want to subscribe to Laurie’s blog. 

What They Don’t tell You About Dementia: by Laurie Scherrer, DementiaDaze.com 

When I was diagnosed with dementia (Early On-Set Alzheimer’s and Frontotemporal Degeneration) the doctors told me and my husband:

  1. My working days were over
  2. I needed to “Get my affairs in order and see an attorney”
  3. The time would come when I wouldn’t recognize my loved ones
  4. For any additional information we should go to the Alzheimer’s Association Website
  5. I may experience “sun-downing” in the late afternoons
  6. Come back in six months to see how rapidly you have progressed

What the doctors SHOULD have told us:

  1. There are many things that can aggravate or enhance the confusion and agitation that comes with dementia. With observation and patience, you may be able to recognize what triggers these symptoms. For example noise, stress, over-stimulation or lack of sleep. These triggers are not the same for everyone.
  2. Once you recognize the triggers you may be able to find ways to lessen their impact. For example, use earplugs when in a store or restaurant to reduce the noise, keep gatherings small to avoid over-stimulation, and when needed take an afternoon nap.
  3. The more independence you give up and allow other people to take care of – the more dependent you will become on others. Change your thought process from “I can’t do this anymore” to “How can I accomplish this task (what changes or modifications can we make to assist me).”
  4. On days when you are using a lot of cognitive reserve your symptoms may be strong (usually in the afternoon). This is your brain saying it is tired and needs a break.  Try listening to some music or taking a nap.
  5. It is OK to take some time to grieve for your losses and accept that life will change. Most people need to experience this after diagnosis and again as their abilities change. In addition to grief, you may experience shock, anger, denial and sadness. These are normal reactions that can help you come to terms with your disease and hopefully help you to move on.
  6. Get involved with others with dementia as much as possible. There are a number of groups that offer video chats with other people living with dementia so you can socialize, ask questions and encourage each other.  dementiamentors.org offers a mentor program so you can have weekly chats with someone living with dementia.
  7. Stay active and socialize with old friends and new. Once you curl up into yourself it is hard to get out.  Enjoy life, friends, family and activities for as long as you can.
  8. Build your passion to fight back! Sometimes it is the passion within us that drives us to continue fighting.  Get involved in advocacy work to educate about dementia. Contact Dementia Action Alliance at daanow.org to get started.
  9. You will have good moments when you feel “normal” and think you should go back to work and you will have bad moments when the world is a fog (dementia daze zone). You may feel confused and disoriented and find it difficult to think.  There will be times when nothing seems to make sense and you can’t remember how to do things and then the fog will go away (at least for awhile).  It’s OK to admit you are having a bad day.
  10. Dementia is more than memory loss. You may experience problems with your balance, lights flickering in your eyes, hallucinations, develop fears, or smell things that aren’t really there. Don’t be frightened, keep track of any changes or strange feelings to see how often they occur
  11. Dementia can progress fast, but in most cases it is a long slow progression. You may want to keep your affairs in order, but by implementing changes and strategies you will be able to overcome many obstacles and live a beneficial and happy life for some time.

Since I’m sure your doctor said about the same thing as mine, I hope you find this helpful.  Now go enjoy life – Live, Love and figure out how to make adjustments to over come your obstacles.

My motto is: I don’t want just to survive – – I want to live and thrive!

Love & Laughter,

Laurie

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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“Here’s some medication,” the neurologist told Mike Belleville. “See you in six months.” The doctor stood up to leave, but Mike just sat there, exhausted from months of struggle and confusion, worn ragged from all the tests and consultations. For months, Mike, age 52, had been “hiding under a rock.” His mind wasn’t working right and he worried he’d make a mistake, so he withdrew from his busy life. Now, he was numbed by the diagnosis he’d just received; younger onset Alzheimer’s.

Those three words seemed insurmountable.

“My wife and I had no connection to support services and we had no idea what to do next,” Mike says. “We felt so alone.”

Without his job as a Senior Telecommunications Technician at Verizon, his community volunteer projects, and his hobby of photography, Mike sank into a depression. After several months, his wife found a program at their Alzheimer’s Association that focused on finding a purpose and living well with dementia.

“From meeting others who had the diagnosis, I realized, I can still enjoy, do, and learn,” Mike says. “But more importantly, I realized that I have a voice. I want to use that voice for as long as I can.”

Speaking Up

Even though he had no experience with public speaking, Mike plunged in and became an outspoken advocate, visiting Washington D.C., and speaking at a number of dementia forums.

“Somehow, I was comfortable discussing dementia,” he says. “Even when I was interviewed in front of 1300 people, I felt like I was sitting in a coffee shop, talking to a friend.”

He joined the advisory board of the Dementia Action Alliance and expanded his speaking and advocacy work.

Cooking Up New Skills

Mike was frustrated that he could no longer contribute financially to his household. So he searched for ways he could help around the house. He volunteered to do laundry and soon learned he did not “know when to fold ‘em.” Then he made a discovery: he could combine his desire to learn, his creative curiosity, his love of technology, and his desire to help through the joys of cooking.

Prior to dementia, hamburgers and hot dogs comprised Mike’s culinary repertoire: he could grill with the best of them.

“Thank goodness for Pinterest and YouTube,” Mike says. He searches for recipes on-line, then scans YouTube for a demonstration video, which he watches several times. He uses an App called Paprika, so he has the recipe in front of him. Then, Gordon Ramsey style, he lines up all his ingredients.

“Through trial and error, I learned to put away each ingredient after I added it in,” Mike says. “That way, nothing gets used more than once.”When his wife returns from work, they put the dish on the stove and cook the rest of the meal together.

“She’s very appreciative of my new talents and I’m happy to be exercising my brain and nourishing our family,” Mike says.

Putting Purpose to Technology

Early on, Mike volunteered at a local senior center, starting a technology group called, Mike’s Google Gals. Once a week, he helped people with their phones, tablets and computers. When he and his family moved, he volunteered to host a free Tech Corner on Dementia Action Alliance’s website, offering his problem solving skills as needed. He helps people get on line so they can participate in a vibrant virtual community.

“I get just as much out of this as I put into it,” Mike says. “The more I stay active, the better I am.”

Mike and his wife share an electronic calendar, so she can support him with his schedule. His vibrating smart watch offers reminders of meetings and appointments.

“Because I’m wearing the watch, I don’t have to worry about misplacing it and missing a text or an email,” Mike says.

Mike envisions home automation devices extending beyond moderating lights and temperature.

“I have an issue with anxiety,” Mike says. “I would like a wearable devise that automatically detects my anxiety. As I become more stressed, the device could turn on my TV, which would be tuned into a soothing video of my wife talking to me.  Or it could turn on a calming musical playlist.”

Mike also envisions sensors that would alert his wife if he turns on the stove or walks out the front door. He would like to help develop these types of products.

Recipe for Living Well with Dementia

Mike views living with dementia as his new career.

“I’m using the same skills I honed in my earlier career,” he says.

His prescription for living well includes staying socially engaged, finding a purpose, and helping others.

At first, Mike saw his diagnosis as the end, but now he’s busy living. He has the Alzheimer’s logo tattooed on his arm with the motto, “Live life today.”

 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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As Director of Operations for a national call center, Paulan Gordon’s work required an intense travel schedule, detailed project management skills, and a rigorous adherence to industry standards. So when she started feeling confused, she attributed the struggles to stress. Some days, she felt so overwhelmed that she locked herself in her office and called her husband to come pick her up early.

She was asked to step down from her position. Initially, the loss of her career was both financially and emotionally staggering.  Suddenly, she had no purpose, no income, and no peer group. She had to reinvent her life.

In 2012, at the age of 57, Paulan was diagnosed with vascular dementia. After a period of uncertainty, Paulan began using her interpersonal, communication, and management skills and volunteering as a mentor and a dementia advocate.

“I’ve learned there’s a lot more to life than success in business,” she says.

Building Friendships

When she was working, Paulan was so busy she didn’t have time to build friendships. Now, through her mentoring, she has developed deep connections with others who are living with dementia.

“The relationships you create within the walls of dementia are so intimate,” Paulan says. “People talk very openly about their personal problems and challenges. I feel enriched, being part of these conversations and having such close friends.”

Her work as a dementia mentor has also given Paulan a sense of purpose.

“I work with four people and all of them appreciate my phone calls and my caring. That appreciation boosts my spirits,” she says.

Through her mentoring and advocacy work, she’s met doctors, lawyers, teachers, entrepreneurs, and others who have applied their intelligence and skills to living successfully with dementia.

Speaking out for Adaptation

When Paulan gave business speeches, her hands grew clammy and her mouth dry. She battled nervousness and worried about getting facts wrong and making errors.

“Now, I don’t get very nervous,” she says. “I’m speaking from my heart about things close to me, so I can’t make a mistake. Plus, I’m motivated: I want to help others and I want people to understand the truth about dementia.”

 

Letting Go of Difficulty

“You’ve asked me that question five times already,” Paulan’s husband says.

“Then it must be really important,” she answers.

Paulan is happy she can laugh at trying situations. She has let go of things she can no longer do. She stopped driving because spatial relationships were difficult for her.  Paulan knows she’s forgetful and sometimes repeats herself. Her husband and family take that repetition in their stride.  She’s also trained her family not to interrupt her when she’s talking, because she can easily lose track of what she was saying.

“My husband doesn’t call attention to my deficits and I forget I have them,” she says.

Proactively, he reminds her about meetings and appointments. She uses a big planner and makes detailed notes, including instructions on how to sign onto the internet, and notes on various conversations.

Changing Reading and Money

Paulan is constantly using her creativity to solve problems. She was an avid reader, but her memory retention has diminished and understanding complicated novels with dozens of characters became a challenge.

“If I put down a book, I can’t remember what happened at the beginning,” she says. “Although there is an upside to the situation: I could save money reading the same books over and over again.”

She temporarily put down her tomes and started reading short stories and magazines. This allowed her to continue her beloved hobby without so much frustration.

She also worked around her reduced mathematical abilities. When she shops, she hands the cashier an extra dollar, so she doesn’t get overwhelmed by counting out coins.

“I hope people are honest when they give me change,” she says.

Stirring up her Spirits

“I don’t worry about dying” she says. “I basically feel positive.”

Many people have a distorted view of dementia. With her speaking and writing, Paulan helps people understand the truths of the disease.

“I like sharing ways to support friends and loved ones who are living with dementia,” she says. “This information helps prevent decline and dramatically increases the well being of both care partners and people living with dementia.”

Meanwhile, Paulan’s advocacy and mentoring work has filled her life with depth, friendships, creativity, and purpose.

 

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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