#WordsOfComfort

Finding way to stay connected
during this time of stress and social distancing

Living with dementia can be a lonely experience and that is why Illinois became part of the Dementia Friendly Movement.

Dementia Friendly works to bring communities together to support those living with dementia and to empower community members around them. Now during the spread of COVID-19 and the need for social distancing, we are all feeling more lonely and disconnected. If you are living with or caring for someone with dementia that feeling is even stronger. Both family members and healthcare staff are feeling this stress too.

We began #WordsOfComfort to bring us together. Here is a place to share words of support, advice, and comfort as we move through this time. We hope these words of comfort help each of us to know that we are not alone.

Many of us struggle to know if we are communicating well with our loved ones and if they are able to understand the world around them. Sentences get reduced to a few words, and answers to questions are limited. Do they understand what we are asking?  Are they following what is on tv?  Can they read?

We were in the drive thru yesterday trying to communicate on what to order.  All of the sudden Diane points and says “Rice Pudding”. There was a hand written sign on the window pointing out the restaurant has pudding.  We used to love rice pudding together.

Enjoy the small, sweet things you share.

Eric Lang
Without Warning Member

#CAREGIVERS STRONG

As this crisis evolves I think often about the caregivers of early onset Alzheimer’s disease. One of the great qualities you all have is that of adaptation as we have all learned how to do that over time.  Your abilities and strength will get you through these times. You all are in my thoughts and prayers ❤️

Judy DiFilippo
Without Warning Member

The caregivers at Without Warning are heroes to me because they show such strength and courage in the midst of a devastating disease. And they do this every day without time off. They have to face new challenges and obstacles and still manage to move forward. They not only support their loved ones but others in the group. It is important to me because as a counselor I truly believe the true heroes in life are the ones who find the courage to endure even when life can get really hard.

Johanna Jameson
Without Warning Staff
Memory Farm – Founder

Roly has been with our family for two years. He does so much to help in the care of my husband Kevin and is part of our family. This shirt says it all!

“Some people live their whole life and wonder if they have ever made a difference in the world but a Caregiver doesn’t have that problem.”

Laureen Wysocki
Without Warning Member

The support group meetings were a life-line to me as I was navigating the care of my late husband, who had early-onset Alzheimer’s.  I remember another spouse saying her husband had recently gone on a special day-trip for Alzheimer’s patients.  The spouse said – He doesn’t remember the trip, but he had a good time.”  I was completely baffled.  Why did he bother to go on a trip that he did not remember?  I soon realized that any enjoyable experience contributes to our well-being and is therefore beneficial.  It’s like a good night’s sleep.  We don’t remember it, but it does us good.

Marybeth Devine
Without Warning Member

I thought I could do everything by myself to care for my husband with Younger-Onset Alzheimer’s.  I didn’t want to impose on people by asking for help.  I’ve always been the person who supports others, not the recipient. 

When my husband had a significant medical event, I was very overwhelmed physically, emotionally, and financially.  Family, friends, and co-workers jumped in to support us.  I finally had to let go of the notion that I could take care of him myself, and learned how to ask for help.  When I did, my burden was lessened. I find this quote by Cory Booker to be spot on:

Sometimes asking for help is the most meaningful example of self-reliance.”— from poem “Sometimes” by U.S. Senator Cory Booker

Mary Swenson
Without Warning Member

In moments of great stress such as these, it is impossible not to recognize, appreciate, and be in awe of the tremendous strength of caregivers in putting aside their own worries and facing the ones they are taking care of with calm reassurance and a smile.

Shiza Jeewa
EPI Research Assistant
Rush Alzheimer’s Disease Center

The caregivers I have a met at Without Warning are so amazing: compassionate, loving and courageous. I cannot imagine how difficult their lives must be, and yet they continue to smile.

Karen Paul
Without Waring Staff

Through Without Warning, you have many friends who just want to hold you up and encourage you in every way possible.
At this time of uncertainty may you find unexpected blessings in each and every day.
Sending heartfelt cheer and a virtual hug of support!

Elizabeth Gould
Without Warning Staff

When I think of the caregivers that I’ve come to know and love, I am blown away by the sheer force of their devotion, advocacy and unconditional love for their companions, most often the spouse. I think of how they are taking those marriage vows to heart while at the same time experiencing such profound sadness and loss.

Beth Carey
Without Warning Staff

What impresses me about caregivers is their choice to be consciously selfless and their strength to keep going during the good and bad times. Perseverance takes courage.

Charon Cannon
Social Worker
Rush Alzheimer’s Disease Center

I have worked with caregivers for persons living with dementia for almost 20 years as a family physician/geriatrician at the Rush Alzheimer’s Disease Center.  I always am awe-struck at the transcendence caregivers go through during their journey supporting persons living with dementia.  The dedication caregivers show in recognizing the “human-ness” in their loved ones always humbles me.

Raj Shah, MD
Associate Professor, Family Medicine and Rush Alzheimer’s Disease Center

Sandra Shields, a founding member of the Without Warning support program, had a gift for writing poetry. Along with Nancy Swanson, our music therapist, the song Faith was created. This has become a special song to many of our members. Part of this song seems comforting at this time.

Unexpectedly life brings you to your knees.
Just know that there are those out there
That see just what you see.
No matter what life brings you must believe it’s there.
Just as long as you have FAITH.

Nancy Swanson
Without Warning Staff

On one occasion, I was testing a participant in the Memory and Aging Project who had several physical impairments. Her caretaker was absent on the day of our appointment. While I didn’t meet the caretaker personally, her presence was felt all throughout the apartment: there was a framed photo of the two at the Chicago Pride Parade, the participant used an Amazon Alexa that the caretaker had given her for Christmas, and the caretaker’s warm and giving personality was a recurring topic of conversation.
 It wasn’t until later on in the appointment that I learned the reason behind the caretaker’s absence: her sick family member had been hospitalized the night before. It became clear that this caretaker had been acting as a loving, surrogate family member to the participant, in addition to taking care of others outside of her work.
So many caretakers, like this one, go the extra mile. They don’t simply “wipe their feet at the door.” They carry their work with them, touching the lives of those in need, and forming meaningful bonds along the way—all this on top of the challenges they may be facing in their personal lives.
To this caretaker, and all the others, we owe an endless amount of gratitude.

Zach Benak
EPI Research Assistant
Rush Alzheimer’s Disease Center

During my 23 years at the Rush Alzheimer’s Disease Center,  I have had the honor of working with residential care staff throughout the Chicago area. I am always impressed at the depth of compassion and respect they convey for the people with dementia. They bring joy, structure and love to difficult situations.

With COVID-19, it’s a tough time for residential settings. You all are strong and will help your residents through with that same compassion and respect. We are sending #WordsOfComfort during this time.

And I look forward to being back with you soon!

Susan Frick
Social Worker
Rush Alzheimer’s Disease Center


Add your thoughts to #WordsOfComfort!

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