Category Archives: Uncategorized

Insider’s Tips for Analyzing Activities Programs

My mother had been an artist in her later years, but she stopped painting when she began living with memory loss. Instead, she took comfort in listening to music and in nurturing a baby doll. Ron’s dad studied architecture as a young man, but never had the leisure time to pursue drawing or art.  When he moved into a memory care community, he flourished in the Memories in the Making painting program.  We worked hard to find care homes that nurtured our parents and my background in healthcare helped us develop a few insider’s tips for analyzing activities programs.

“Families need to share information about favorite hobbies and they also need to be ready for their loved one to try new things and possibly change interests,” says Alisa Tagg, President of the National Association of Activity Professionals. Alisa has helped dozens of facilities build meaningful activity programs.

Here’s an example of how one woman thrived on learning a new skill and giving back:

Mary’s family was amazed when she got involved in a jewelry-making class in the memory care unit.  Mary had never thought of making jewelry and she never even wore necklaces, bracelets, or earrings.  But she loved beading and was thrilled to share her creative designs with others. Producing something beautiful for others motivated Mary. The facility helped her sell her jewelry and she contributed the money to the activities budget and also donated to charity.

Alisa knows how emotionally challenging it is for families to find good care facilities for their loved ones. Here are some of her insider’s tips for analyzing activities program.

See For Yourself

“You have to view what is going on in the activity room,” she says. “See how the staff interacts with the residents. If there’s an entertainer, is the staff in the back of the room, charting and talking? Or are they in the front, dancing, and singing and engaging with residents and families?”

Look at the activities calendar. Visit the facility at different times and on various days and see if the activities in progress match the scheduled events.

Encourage Engagement

Study the schedule to see how often the residents are engaged, rather than just being entertained. Are they invited to contribute to community service projects? Are they going to sing-alongs or helping with baking projects? People with memory deficits need a variety of activities. Look for a variety of programming that balances the four areas of wellness—spiritual, mental, physical, and emotional.

Visit Programs of Interest

Visit the programs you think your loved one might enjoy.

Find out how many staff members assist in the activities program.

Does the care staff seem aware of the importance of activities? Is there one-on-one assistance for those who want to participate and need extra attention?

Watch for Independent Projects

Is there a place for puzzles, games, cards, and other things people can enjoy independently?  Are there opportunities for residents to contribute to their community and to help others around them?

Share Questions and Concerns

“Every facility should have a plan of care meeting, where family can share their expectations and concerns with the nursing staff,” Alisa says. “Ask how your loved one is doing. Share your insights.

A good facility will welcome that meeting.”

Stay Involved

Stay as involved as you can. Helping your loved one connect through meaningful activities may involve trial and error. Get to know the other residents and their families. You’ll stay engaged with your loved one and create a sense of community with a lot of other wonderful people as well.   #

To learn more about Alisa Tagg, BA ACC/EDU AC-BC CADDCT CDP and the National Association of Activity Professionals, visit  https://naap.info

To delve into creative activities do you can on individual visits, read my latest book, Connecting in the Land of Dementia: Creative Activities to Explore Together.

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.

CITLOD very smallLove in the Land of Dementia_cover

Advertisements

Leave a comment

Filed under Uncategorized

Five Secrets for Making Date Night Great

I caught up with Nettie Harper and Kelly Gilligan, co-founders of Inspired Memory Care, Inc. as they were rushing down the streets of Manhattan, off to consult with a client. I loved hearing the city sounds, horns honking, cars edging past, a lone dog barking, as they shared their five secrets for making date night great. (I have changed the names in this story to protect people’s privacy.)

During my mother’s journey through dementia, my father was always seeking ways to stay connected with her. He would have loved the ideas in this article.

Five Secrets For Making Date Night Great!

Margaret slipped on a string of pearls and surveyed herself in the bathroom mirror. Her royal blue silk dress, one that her husband Harold had bought her for their 40th wedding anniversary, still looked good. She fingered her hair nervously and hoped this evening would go well. Their last weekly dinner date had been a disaster. Harold had felt uncomfortable in the restaurant, even though they’d chosen it together. He picked at his food and barely spoke a word. Margaret had to hold back tears as she looked around the brightly lit room and envied all the happy couples and families, laughing, talking, and savoring their food.

Tonight, she vowed, would be different. Tonight, she was prepared, coached by Nettie Harper and Kelly Gilligan of Inspired Memory Care, Inc, in Manhattan, NY.

She’d chosen a quiet restaurant and reserved a cozy corner table, away from the bustle. Harold’s face tightened as they strolled in, but she took his hand and he squeezed hers. After they settled into their seats and ordered their meal, the dreaded silence descended.  She was about to say, “Do you remember the time we took my cousin from England out to dinner…?” but she bit her lip. Harold’s eyes went blank when she prodded him for specific memories.

Instead, Margaret unfolded an article on sailing, one of Harold’s passions, and offered it to him. “Could we read this together?” she asked.  The large print made it easy to see and Harold began reading aloud, weaving in the open-ended questions Nettie and Kelly had written in for them to discuss.

“What does this make you think of?” he read, after a few moments.

“The sea,” Harold said.

Margaret took a turn reading aloud, and Harold leaned forward a little.

“Would you ever go out on such stormy seas?” she asked.

“If I felt strong I might,” Harold said. “I always liked sailing with you.  Remember that time with the snow and the animals? Those big fish?”

Margaret smiled and took Harold’s hand.

“That was our whale watching cruise. I do remember. I really liked the penguins.”

“What did I like?” Harold asked.

“The glaciers,” she said. “And the dancing.”

In their work, Nettie and Kelly often coach care partners like Margaret, offering creative ways to stay connected with loved ones who are living with dementia. Their idea of bringing along an article on one of Harold’s favorite topics transformed the dinner into a time of wonderful sharing. On future date nights, Margaret continued to bring along articles on topics of great interest, as conversation starters.

Nettie and Kelly’s company, Inspired Memory Care, Inc. (IMC), is founded on the belief that older adults, both with and without memory impairment, should have access to life-enriching, esteem-building experiences, sharing their wisdom and pursuing their passions each day.

“We encourage couples and families to commit to rituals and set aside time together, just like you would without a memory impairment,” says Nettie. “Date night is an important part of the week, a chance to do something special and unique.”

“We coach people to ask open-ended questions, such as, ‘Would you rather..’  “Would you ever…’ ‘Tell me more about…’” Kelly says.

“‘Tell me more” is one of the strongest questions you can ask. Frequently words come flooding out.

After posing an open-ended question, they encourage care partners to wait, allow silence, and give people a chance to respond.

“If we jump in and give the answer, we’re taking away the strength of the individual,” they believe.

So what are the five secrets to a successful date night?

  • Bring a conversational catalyst, such as an interesting article to discuss.
  • Ask open-ended questions.
  • Wait lovingly for the answers.
  • Meet people where they are.
  • Celebrate your time together.

Use these five secrets for making date night great and create a meaningful and connective atmosphere — for any couple or family — regardless of cognitive abilities!

To learn more about Kelly and Nettie, please visit http://www.inspiredmemorycare.com/ 

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.
CITLOD very small

Leave a comment

Filed under Uncategorized

Using Creativity to Live Successfully with Dementia

“Creativity is evident in every one of us,” says Michelle Niedens, Director of Education, Programs and Public Policy, Alzheimer’s Association Heart of America Chapter. Every time I hear Michelle talk about the creative aspects of living with dementia, I am moved. I was so honored to have Michelle speak at my book launch for Connecting in the Land of Dementia. I treasured what she said about using creativity to live successfully with dementia and I asked if she would allow me to share her words of wisdom and caring with you. Here is her beautiful talk.

Using Creativity to Live Successfully with Dementia

by Michelle Niedens

It has been said that “we are helped by what is not, to use what is”.    In Alzheimer’s disease, there are some things that are not.   But welcoming this philosophy of using what is allows us to explore all the parts that are.   As part of projects focusing on creativity at the Alzheimer’s Association, I have heard many people talk about how they are not creative.   In one way or another, they find a way to let me know they believe they cannot create art, or stories or a collage or whatever forms of creation lay before them.    Yet if we allow our minds to really think about the place of creativity in our lives, we could make a case that it is evident in every one of us.   Whether it be building book shelves, writing poetry, the way we frame our words in conversation, the way we problem solve, the way we play with children, the way we garden and even the way we convince ourselves of things.  Life is both complicated and simple and requires creativity to survive.   It is almost as ever present as thought and breath.

In the poem, “the Necessary Art of Salvaging”, Barbara Lau writes;

In the dumbfounded middle of loss
We still manage to
Open mail
Feed the dog
Answer the phone.
The letter came the same day
My doctor announced
That the minnow heart inside me
Had stopped pulsing.
Back home I ate the lunch placed in front of me
And when the envelope fell through the slot
I opened it.  The handwriting said
That a poem I wrote months ago
Would be released on a polished
White sheet of daylight.
I will never think of it as a fair exchange
But at least I know how to salvage,
How to search through the rubble
For that one unbroken teacup.
In the earlier stages of Alzheimer’s disease, creativity can serve to challenge the mind in new ways, what some might call brain exercise.   It can allow the expression of the mixture of feelings in more comfortable ways or when there are no clear words to do so.    Creativity can connect people and move our center from the relinquishing to the replacing.
In middle stages, there is something lost in Alzheimer’s disease that many of us only wish we could shut off.  Somewhere in our frontal lobe, there is a part that tells us what we cannot do.    It inhibits us.   The part that tells us we would not like a food even before we try it.   The part that tells us we wouldn’t be interested in a play or movie just because of some small variable.   The part defines what we are willing to do or try or even to direct some interest in.  For some people that inhibition is significant.  It can be deeply embedded by early life expectations, culture, messages or even trauma.  We can appreciate that there are times that inhibition is a good thing.  But one only has to be around a person in the middle stage where such inhibition has been diminished to see the good side of that loss as well.
I remember one woman who would come to a poetry group with me every month.   She lived in a long term care facility due to the significance of  Alzheimer’s disease.   She was an only child, parents long gone.  She never married and never had children.  I surmised from her history that perhaps she had always struggled with understanding and interrupting social cues and likely never had an insight into her emotions that allowed her to sort through the depression and anger that periodically flared.   These tendencies did not disappear in Alzheimer’s disease, but what appeared was a person more open to others, less concrete in her interpretations and increasingly able to find ways to connect – always through creativity.   On her last day attending the poetry group, she brought me a clay pin she had made.  It was the shape of a heart – kind of.  It was lop sided with dents where her fingers had tried to mold the clay, painted red with places missed, and wrapped in a kleenix.   I still can picture her face as she handed it to me.  It is one of the most treasured pieces of jewelry I possess.
Another poem, written by Lois Hjelmstad, perhaps better summarizes the significance of incorporating creativity in the experience of dementia.
Pipe Organ
I am not a large woman
And I am aging
I have been diminished by cancer, surgeries and chronic illness
But when I sit at the console
And my fingers touch the keys
My spirit soars.
Here – in the glorious sound –
My muted voice sings again
My faded beauty sparkles once more
My waning strength shakes the rafters.
What I am trying to say is this.  There are all kinds of important ways that focusing on creativity adds to the lives of those with a dementia.  Creativity brings laughter and fun, which we all need.  Creativity brings connections to others.  It provides a mechanism to share feelings and thoughts when other avenues may not be available or as clear.  It can be the way that unfinished business is sorted and that we grow into someone we wanted to be.   In other words, creativity can add meaning.
When I talk with individuals diagnosed with a dementia and their families, conversations include understanding what is lost and making decisions based on those that are anticipated.  But what is most important is finding a way to successfully live each day.   Finding those pieces that allow the muted voice to sing again.   And let the waning strength shake the rafters.  #
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.

CITLOD very smallLove in the Land of Dementia_cover

Leave a comment

Filed under Care Partnering, Caregiving, Creativity, Uncategorized

Sharing Your Caregiver’s Story

pen and paperMy mother’s Alzheimer’s drove me to write. My writing inspired me to speak. I have received enormous pleasure from connecting with people all over the world, sharing my stories from Connecting in the Land of Dementia and from Love in the Land of Dementia. Now, I’m offering you tips for sharing your caregiver’s story.

 

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.

Every day I went through this:

Visit with mom.

Drive home, wiping tears from my cheeks.

Stumble into the house, walk into a chair or table, and misplace my car keys.

Sit at the dining room table and stare numbly into space.

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestion I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed with me. The next day, I slightly altered my behavior.

Visit with mom.

Drive home, wiping tears from my cheeks

Stumble into the house, walk into a chair or table, and misplace my car keys

Sit at the dining room table and write numbly for 20 minutesimages

 

Pouring Emotions Out & Inviting Understanding In

I poured out my fears, anger, and grief. After doing this for a week,

I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.

I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.

As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.

Sharing Your Caregiver’s Story

How do you take a challenging part of your life and bring it to the page?    Here are a few simple tips:

Pour Out Your Feelings  images-1

Give yourself time to feel your emotions, whether it’s through writing, art, music or other expressive arts. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.

Notice the Details

Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

Uncover the True Story

Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?

Ask for Feedback

Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

Celebrate your Accomplishment

Sharing your caregiver’s story takes courage.  Yet, for me, it is one of the most cathartic and meaningful things I  do.

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.

CITLOD very smallLove in the Land of Dementia_cover

Leave a comment

Filed under Care Partnering, Caregiving, Communication, Creativity, Uncategorized

Finding the Holiday’s Spirit

This story from Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey celebrates finding the holiday’s spirit. Here’s to a season of peace, light, joy, and meaningful connections.
images

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.

santa

“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.

We roll 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 residents 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 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.

CITLOD very smallLove in the Land of Dementia_cover

 

Leave a comment

Filed under Uncategorized