Three Warning Signs and Three Simple Actions to Soothe Care Partner Breakdown

“I keep thinking I should do more to help Mom as her Alzheimer’s progresses,” a friend recently told me. “I visit Mom in Chicago every month but I worry that’s not enough. Yet I have my work and my family here in Kansas City. I’m torn in two and the stress is eating me up.”  

It’s so difficult to be a long distance care partner. I was lucky: my parents moved close to me when Mom was diagnosed with dementia. Yet even though I was nearby, I shared some of the stresses my friend described. My stomach hurt most of the time. As I dashed around the house, getting ready to go see Mom in the Memory Care Unit, I frequently bumped into furniture. I found myself mentally drifting away during meetings and unable to concentrate when I sat at the computer to write. And even though I had wonderful, supportive friends, I often felt an aching loneliness. Later, I learned these were normal symptoms of caregiver’s fatigue.

I asked my friend Linda Moore, psychologist, community leader, and author of the book, “What’s Wrong with Me?” to tell me more about recognizing and managing such exhaustion. Here are some of her insights.

Three Areas Where Stress Screeches You to a Halt

Physical

“Your body is the early warning system,” Linda says. “But most people try to ignore the on-going tiredness, low energy, muscle spasms, unfamiliar aches and pains, and GI issues.”

Emotional and Spiritual

Often, after I’d spent hours solving problems around Mom’s care, I had a heavy feeling of disconnection and a dull anger. Nothing mattered and I felt sad, rootless, and lonely. But I kept going.

“Care partners tend to push past their feelings,” Linda says.

Behavioral

“Poor concentration is one common sign of stress,” Linda says. When friends say, “You’re just not acting like yourself,” it’s a cue to slow down and drink a cup of soothing tea, read a short magazine article, or phone a friend. Other stress symptoms include procrastination and isolating yourself.

 

Fight Breakdown with the MEE Plan

“Meditate, even if it’s just for a minute,” Linda advises.

Sit quietly, count to four as you breathe in and count to six as you breathe out. Watch your thoughts wiggle around. One minute of meditation calms you, five minutes energize you, and twenty minutes of daily meditation can center you and give you a greater sense of well-being.

Exercise

“Everybody knows it works and no one wants to do it,” Linda says. Even when you’re so tuckered out that your fingernails feel heavy, movement matters. Five minutes just walking around the house or prancing around to “Dancing Queen” can ratchet up your energy. Fifteen minutes of walking can lift your mood. Even a jog up stairs or unloading the dishwasher can shift your energy.

Eat healthy

Is a banana really as delicious as a dark chocolate truffle? Many would say no. But most would agree, the banana is better for you. Even if you often eat on the run, choose fruits and vegetables to snack on. Throw in salads, soups and nuts. And don’t forget the truffle: be sure you indulge every so often in a comfort food you really adore.

Lastly, Linda advises, “Don’t give away your personal power: ask for help when appropriate and learn to say no.”

For more information about keeping your personal power and reducing stress, visit

drlindalmoore.com

Dr. Linda Moore is a psychologist, author, speaker and consultant in Kansas City.  She specializes in the psychology of women, stress management, and leadership.

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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An Old-Fashioned Holiday

This holiday story from Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey celebrates the spiritual aspects of living with dementia.

When I walk through the doors of the nursing home, I find my mother in her wheelchair, right in front of the medication cart, right behind the central nursing station, where nurses, delivery people, staff and family members congregate. Mom is bent over, her baby doll lying across her lap. When I walk up to her, I ratchet up my energy and widen my smile. I am preparing to clown her into a reaction.

Later my father will ask if I think she recognized me.

“No,” I will have to tell him. “She did not recognize me. But she did smile.”

The smile is important.

My hand waving and head bobbing does its work: Mom does smile, and I can tell she is in her own current version of a good mood.

“Music in the dining room,” the activity board reads, so I wheel her in that direction. An elderly man with a red and white trimmed Santa hat passes us in the hallway.

“Look Mom, there’s Santa,” I tell her.

Having been brought up Jewish, Mom never was all that enthralled with the Claus mythology and she has not changed.

A white-haired woman is in the dining room, busily setting up for the music program. Several patients are already gathered. The woman takes out a microphone, a boom box, an illuminated plastic snowman, and a small silver bell. I continue wheeling Mom down the far corridor, liking the sense of companionship I have from this movement.

As we stroll, a nurse carrying a plate of lettuce walks past us.

“She must have been a good mother,” she says, nodding at the way Mom is holding the baby. “She must still be a good mother.”

“She is,” I say.

I have never really said to my mom, “You were a good mother.”

Now I realize she was.

I can see that Mom is enjoying the ride. She loved movement when she was younger and was far more adventuresome than Dad when it came to airplanes, ski lifts, fast cars, and speedy boats. For her, biting breeze across the face was thrilling, not threatening. Until she became a mother, that is. Then she abandoned her pleasure in the heights and speed and concentrated on making sure we were slow, safe, and centered.

We roll back into the dining room just as the show is ready to start. The singer, Thelda, kicks off her shoes and presses play on the boom box. Above the cheerful sound track, she sings Jingle Bells. She dances across the room with the remnants of ballroom steps. She stops in front of Mom and sings right to her. She gets on her knees, so she can look into Mom’s eyes, and keeps singing. Mom notices her and smiles a little. 

Thelda moves on, singing to each of the patients gathered around, so intent on making a connection that she often forgets the words.

“Is it all right for your Mom to come to Christmas holiday events?” the activity director had asked me, when Mom moved from the memory care into the skilled care portion of the nursing home.

“Yes, I’d like her to go to any activities. She likes the extra energy.”

I think Mom would approve of my decision, even though she has never celebrated Christmas. Growing up, her immigrant mother held on to the Jewish spirit of her home, kneading dough for Friday evening challah, observing each holiday and prayer period in her own way. Some orthodox women followed the religious law that commanded a small piece of the dough be burned as an offering to God. My grandmother was poor; she did not believe in burning good food, regardless of tradition. So she sacrificed a portion of the dough to her youngest daughter, my mother Fran. She created a “bread tail,” leftover dough that she smeared with butter and sprinkled with sugar and baked. When Mom used to talk about her mother, she always mentioned this special treat.  

Even when I was growing up, and we were the only Jewish family in our neighborhood, my mother still did not sing Christmas songs. She did not willingly go to Christmas parties. She let the holiday rush by her, like a large train, whooshing past, ruffling her hair and leaving her behind.

Now, I am singing Christmas carols to my Mom for the first time. She is smiling, though really not at me. But I am sitting beside her while she is smiling and that makes me happy. She has moved beyond the place where the religions are different, beyond the place where she wants to separate the dough and make a sacrifice for tradition. Her new tradition is anyone who can make her smile.

With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, nudging her, shaking a bell almost in her face, acting sillier and sillier. Each time, Mom lifts her head and widens her mouth for a second.

For her finale, Thelda puts on a big red nose and sings Rudolph. When she dances in front of Mom with that nose, Mom laughs. For several minutes, Mom stays fixated on the scarlet nose, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed. Then, Thelda dances away and Mom’s face glazes back over.

Two weeks from now, I will bring a menorah and candles into my mother’s room. My father and I will have a short Chanukah ceremony with Mom. She will pick at the shiny paper covering the Chanukah gelt (chocolate candy disguised as money). She will slump over in her chair. But she will come back to life when she sees me, her only daughter, wearing a big red nose as I light the menorah. 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. 

Five Tips for a Terrific Collective Artistic Experience

Twenty years ago, Jytte Fogh Lokvig found herself in a quandary. She was doing a favor for a friend: visiting the friend’s mom weekly while the friend was out of the country for three months. The mom lived in a care facility and the first visit went wonderfully. But the second visit was shocking to Jytte.

“Her mom started screaming and cursing,” Jytte says. “I went to the nurses’ station to figure out what was wrong. The nurse told me she had Alzheimer’s.”

Jytte, who had experience in art and working with at-risk youth, knew nothing about dementia. But she started to learn. Using principles she’d employed with youth, she began offering additional activities at the facility.

“I didn’t view people with dementia as sick,” she says. “Everything I planned was directed at the well part of the person.”

She looked for activities that were collaborative rather than competitive, so everyone could bloom with a feeling of accomplishment.

“I started with a group collage,” she says. “That way, we were all working together.”

Through the process of creating collectively, people relaxed and became comfortable with the materials. This experience was so fulfilling and moving that Jytte began working with families, guiding them in doing projects together.

Jytte suggests collages because they are easy and there is no right or wrong with collage.

“Collect old magazines, buy a few glue sticks, and break down big boxes to use for cardboard,” she suggests. “Engagement and conversation are the important things; if it never gets beyond discussing a picture of daisies that reminds her of her growing up garden, that’s fine.”

Jytte believes the keys to engagement include giving people enough time, letting them work at their own pace, and offering them consistent opportunities for self-expression.

When possible, invite others to join you for the collage experience. Introduce the project by asking the person with dementia for help, saying, “Hey Mom, I really want to do this project. Want to help me?”

If Mom is reluctant, start the project and mention; “I sure could use your help if you don’t have anything else to do.”
Tear pictures out of colorful magazines.
Let Mom direct the artistic action.
Use the pictures to trigger conversation.
Enjoy the process and don’t worry about a finished product.

***

Jytte Fogh Lokvig, PhD, is the author of The Alzheimer’s Creativity Project and Alzheimer’s A to Z, Secrets to Successful Caregiving. She is also a founder of the Alzheimer’s Café.

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

Creating Community for Optimal Aging

Even before my parents moved from Memphis to live near me in Kansas City, they were part of my social circle. We always invited friends to family holidays and I often hosted gatherings when my parents visited. I wanted them to know my friends and vice versa. When they finally moved because of Mom’s increasing memory issues, they had a small community of people who already knew and cared about them.

So I was very interested when I read Martha Stettinius’ thoughts on Aging in Community. Martha lives in a co-housing setting in New York and knows the benefits first-hand. I wanted to share some of her insights.

From Martha Stettinius, author of Inside the Dementia Epidemic: A Daughter’s Memoir

How does aging “in community” differ from aging “in place”? And how can we age “in community” no matter where we live?

Many boomers have witnessed their parents’ struggle with long-term care and they want an alternative to aging by themselves at home and overtaxing family members, or to being placed in a large facility. They seek a network of mutual support among friends, family, and their community, a network that allows them to help others now, and receive help in the future.  

Aging in community can mean living in an intentional community such as in cohousing, or within a network of neighbors who volunteer to help each other, such as the Beacon Hill Village in Boston. Building this community means finding or creating the places and relationships that can sustain us as we grow older and sticking by friends who are living with frailty, dementia, or a disability.

I have lived in cohousing with my family for 16 years, and believe that if we age in community we are more likely to remain healthier longer, stay in our own homes longer, and appreciate the gifts of giving and receiving care. We are more likely to accept our vulnerability and understand that asking for assistance and companionship is not a weakness.

We can also age in community in a facility, if it respects and empowers both elders and professional caregivers and fosters close relationships between staff and residents.

*****

Martha’s ideas resonate with me and remind me to be present for friends, family, and neighbors who might need extra assistance or support.

For more about Martha’s work, visit her website at www.insidedementia.com

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. 

 

Finding Comfort Where You Can

When I was in the throes of sadness following my divorce, my 12-year-old daughter came into my room and handed me a stuffed bear.

“This will help you,” she said.

At first, I had my doubts about the healing power of inanimate objects. But I soon learned that cuddling a soft bear was a calming and healing experience.

My mother created her own soothing experience when she was deep into Alzheimer’s. Here’s an excerpt from this story, from my book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

 

A Doll of Her Own

That afternoon, while my mother is walking down the left-hand side of the corridor in the Alzheimer’s unit, tapping one hand on the handrail, and pressing the other palm on her forehead, she sees a baby doll lying on the floor. Mom’s adult diaper rustles as she bends down, picks the baby up, smoothes its curly hair and carries it with her to the dining room. There she settles in a chair and rocks the baby, talking and singing to it.

“Your mom’s fallen in love with a baby doll,” Leticia, the nurse aide, says when I visit.

Mom is sitting at the table in the small dining room, her head bent over, as if she’s fallen asleep on a long journey. I touch her shoulder once, twice and on the third time, she straightens, notices me and smiles.

I sit beside her and spread out some photographs. She is staring vacantly at a photo of her granddaughters when Leticia brings over the baby doll.

“Here you go, Frances,” Leticia says.

Mom lights up, holds out her arms and says, “You’re cute. You’re so pretty. You’re a good boy. You’re a good girl.”

I look on in amazement. I haven’t seen Mom so animated in weeks. Yet I feel a pang: I had yearned to be the one who jolted her into vivacity.

I listen as Mom continues her conversation with the baby. Maybe the ease of having someone who doesn’t talk back, who doesn’t hope you will complete a sentence, who doesn’t care if the words are missing or not right, maybe that freedom lets Mom flow with her speech.

 

I decide to buy my mother her own baby doll.

At the toy store, the dolls are all full of activities. One laughs when you press her belly. One has a musical bottle. Another takes your picture …

I search the aisles for a quiet doll without too many accomplishments. Finally I find a soft, rosy-cheeked baby, a good size to cradle, who boasts only an open mouth for a pacifier or bottle.

“Some little girl is going to really enjoy this doll,” the cashier says as I pay.

I smile as I envision that 87-year-old little girl who is my mother.

 

Mom sits in a chair in the TV room, eating strawberry ice cream out of a round cardboard container. I know better than to compete with dessert, so I wait until she has finished the last smidgen.

Then I put my hand on her shoulder. She looks at me, her eyes vacant.

“Hi, Mom,” I say. She stares at me and then she sees the baby doll.

“You’re here,” she says, her eyes widening. “My little girl is here.”

She holds out her arms and I hand her the baby.

“Bo bo bupe, tootle ootle, oop. I have my little girl,” she croons.

She smiles at me; she smiles at the doll. Does she know I’m her real little girl or is she imagining the doll as her child? At this moment, as I watch my mother come to life and praise her baby, it simply doesn’t matter.

 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.