Why I Walk: Julie Moza

This past spring Julie Moza attended our 24th Annual Education Conference, which featured Alzheimer’s expert, Teepa Snow, but it wasn’t the first time Julie had used the Alzheimer’s Association Central Illinois Chapter as a resource. As an Activities Assistant at Apostolic Christian Restmor in Morton, Illinois, Julie attended the conference as a professional but took away so much more when she learned new ways to communicate with her mother, Carolyn, who was diagnosed with Lewy Body Demenita at the age of 58. Now 70, Carolyn is a resident at the same nursing home Julie works at.

“I went in the conference with my ‘professional cap’ on but I took away much more. That day I was an emotional day for me because it shed a new light on how I may be able to communicate more with my mother.” Julie and her family began noticing her mother going through changes in the early stage of her dementia when she became confused, had night terrors, and made careless mistakes at her job. Julie’s sister scheduled an appointment with a neurologist for Carolyn where she received the diagnosis of Lewy Body Dementia.

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Picture of Julie’s mother, Carolyn, 70

Dementia with Lewy bodies is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function because of abnormal microscopic deposits that damage brain cells over time. Lewy Body Dementia is the third most common cause of dementia after Alzheimer’s disease and vascular dementia, accounting for 10 to 25 percent of cases. Researchers have not yet identified any specific causes of dementia with Lewy bodies. Most people diagnosed have no family history of the disorder, and no genes linked to the disease have been conclusively identified.

A difficult time for Julie was right before her mom needed to move into a nursing home.  Carolyn had been living in an independent living apartment, and Julie often felt stressed due to taking care of her mom in addition to having a family of her own especially with having a young son who was involved in many activities.

Specifically, at the Professional Education Conference, Julie learned how to deal with stress management. Having a younger parent with dementia is an extremely tough job. From attending professional training along with her own personal experiences, Julie offers this piece of advice to others: “Don’t get so involved in taking care of your loved one that you forget or don’t feel like you have the time to check out resources. There is a little bit of everything out there for everyone. I should have looked into resources earlier.”

Now Julie visits our chapter website frequently for information. There are countless resources our chapter provides for families and caregivers. Just to name a few: a 24-hour Helpline, Care Consultation, support groups, educational programs, and a weekly newsletter. “I think the biggest misconception of the Alzheimer’s Association is that they only help those with those with Alzheimer’s disease.”

Dementia with Lewy bodies often affects the person’s motor, memory, and speech, and this is no exception with Carolyn who is often difficult to understand. Along with the speech difficulties, Carolyn can be extremely emotional and have many mood swings. Julie frequently uses Teepa Snow’s phrase “Tell me more about it” to reassure her mom and help direct a conversation.

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Through the resources provided by the Alzheimer’s Association and attending conferences with speakers such as Teepa Snow, Julie continues to learn how to communicate with her mother. “When I walk in the room, she smiles at me and I know I make her feel safe.”  Families with a loved one with Alzheimer’s disease or dementia need to remember that although they may seem different, he or she is still their loved one. Julie summed it up perfectly, “I have to remind myself that we are at a new stage in our relationship now.” Julie looks at her mother’s disease as it is. It’s a disease. It’s not her mother and there’s no way of changing it. “This may not be the parent that raised me, but I have come to terms with it, which took a long time, and I know that the love she has for me is still there.”

Julie pictured with her mother, Carolyn

Julie pictured with her mother, Carolyn

As summer slowly makes its way to the Midwest, the Alzheimer’s Association moves into its Walk To End Alzheimer’s season. Last year Julie participated in her first walk and was on a team with other Restmor employees. This year Julie will have her own team and with the help of friends and family would like to raise $500. If you would like to join Julie in the fight to end Alzheimer’s and are interested in participating in the walk visit alz.org/walk.

Alzheimer’s & Brain Awareness Month

June is a very special month for the Alzheimer’s Association, along with individual chapters all across the country. In June, the Alzheimer’s Association recognizes Alzheimer’s & Brain Awareness Month. The whole month is dedicated towards holding a global conversation about the brain and Alzheimer’s disease, as well as other dementias.

Alzheimer’s & Brain Awareness Month is a part of an effort by the Alzheimer’s Association to increase awareness as well as expand the international presence of the organization while also addressing this worldwide epidemic.

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One way the Alzheimer’s Association is spreading awareness throughout the country is The Purple Pledge. We encourage everyone to Go Purple during the month of June. Taking the Purple Pledge basically means you will commit to raising awareness and support for the 47 million people worldwide who are affected with Alzheimer’s. You can take the Purple Pledge at alz.org/gopurple.

Another event taking place near the end of June is The Longest Day. The summer solstice, the longest day of the year, takes place on June 21. However, those afflicted with Alzheimer’s and their caregivers have the longest day, every day. This event is supposed to represent the difficult journey of those living with the disease and the individuals who take care of them.

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People who are interested in participating in The Longest Day only have to follow five simple steps! The first is to make a team. So grab your friends, family, or co-workers and form a team. You’ll be surprised at how many people are willing to join the fight! Here’s another good piece of news–you don’t even have to live in the same city or state, or even country! The second step is to pick an activity, any activity, to do during the day. The third step is to fundraise. Each team is asked to raise a minimum of $1,600 to further the care, support, and research of the Alzheimer’s Association. The fourth step is to plan your day. June 21, from sunrise to sunset, lasts 16 hours. Divide your day into segments, plan which teammate will participate in each segment, and encourage and cheer on team members throughout the day. Finally, the very last step is to celebrate at sunset; you put a whole day’s worth of effort into supporting the Alzheimer’s Association!

Now, you may be wondering what activity to participate in during The Longest Day. It can really be anything that you love that keeps you both physically and mentally active. Here are some ideas to get you thinking: dance, hike, bike, bowling, crafting, music, gardening… The choices are unlimited! If you are interested in participating in The Longest Day, visit alz.org/tld for more information.

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So, as you kick off June and your summer, remember to Go Purple for Alzheimer’s. Keep talking about this worldwide epidemic. If we get everyone to take the Purple Pledge, we will be so much closer to ending Alzheimer’s once and for all.

Why I Walk: Beth Doolan

Beth Doolan is a Tazewell county resident, Alzheimer’s Association volunteer, wife, daughter and sister. Above all these things, she is someone who has directly been affected by Alzheimer’s disease.

Beth’s brother had always been her best friend. Being the only children, they had bonded throughout their childhood and stayed close into adulthood. Beth first noticed something wasn’t right with Fred when he had gotten lost one day. This wasn’t typical of Fred, a man who had always had a sharp mind; she knew it was a red flag. As time progressed family and friends noticed his focus fading and memory decreasing. Soon after this, Fred was diagnosed with Alzheimer’s disease at the young age of 58.

Fred had always been a light-hearted guy and as the Alzheimer’s progressed, she noticed dramatic changes in his personality. He was mean and hateful and knew her less and less. Beth lived for the moments when his old personality would shine through. One moment stands out to her in particular. As she did on a typical day, Beth went to visit Fred in his nursing home. She walked into his room to see a beautiful embrace between Fred and an aide, but couldn’t help but say, “I wish he’d hug me like that”. With a little encouragement, Fred embraced Beth in a hug and began sniffing her, as if suddenly remembering the scent of her. “That was that last time I felt like he knew who I was,” she expressed, with tears filling her eyes. Her friend who was with her was able to capture this beautiful moment in the picture shown below.

The last time Beth felt like her brother, Fred, knew who he was.

The last time Beth felt like her brother, Fred, knew who he was.

Beth witnessed and lived through the effects of Alzheimer’s and knew she couldn’t just watch this disease effect her brother and so many others. “I can’t sit around and let this eat me up. I have to do something,” she proclaimed. She reached out to the Alzheimer’s Association, Central Illinois Chapter for support and advocacy. Her advice to anyone who is effected by Alzheimer’s is to seek support, get educated and discover what the future will hold. Together we can help #ENDALZ

Fred Laidendorf passed away from Alzheimer’s disease at age 61. She had hated being the youngest kid, but now, she says, it’s worse being the only. Beth participates in the annual Walk to End Alzheimer’s for Team Fred in Tazewell County and looks forward to reaching her goal of raising $1,000.

Interested in joining Beth in the fight to end Alzheimer’s disease? Visit alz.org/walk to find a walk near you. 

My Brain Matters……

A woman’s brain has around 70,000 thoughts a day these women used one of theirs to help wipe out Alzheimer’s. Over 20 local women woman joined the movement by sharing why their brain matters at our Family Caregiver night and Professional Education Conference. Join the movement to Wipe Out Alzheimer’s at mybrain.alz.org

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“My brain matters so I can take care of my husband.” Nikki Vulgaris

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“My brain matters because we can love and serve others.” Karen Leman

Wipe out ALZ 004“My brain matters because I want to keep beautiful memories.” Kathy Landis

Wipe out ALZ 005“My brain matters because I love to learn” Liz Gunty

Wipe out ALZ 006“My brain matters so I can take care of myself as long as possible” Doris Gillespie

Wipe out ALZ 007“My brain matters because I want to enjoy the memories of my friends and families” Kelsey Hogan

Wipe out ALZ 008“My brain matters because it stores everything I’ve learned” Diana Arbogast

Wipe out ALZ 009“My brain matters because I take care of 100 girls” Darlene Powers

Wipe out ALZ 010“My brain matters because I want to remember the joys of today and look forward to tomorrow” Courtney Castillo

Wipe out ALZ 011“My brain matters because I love to teach” Rosalyn Toombs

Wipe out ALZ 013“My brain matters because I love to give back” Kristen Kretzer

Wipe out ALZ 014“My brain matters because it lets me experience life” Sarah Griffin

Wipe out ALZ 015“My brain matters because it lets me express the love I feel” Nancy Roggy

Wipe out ALZ 016“My brain matters because it makes me feel love” Karen Cross

Wipe out ALZ 017“My brain matters because it helps me remember the people I love and how to care for them” Karen Nafziger

Wipe out ALZ 018“My brain matters because it allows me to connect with others and the world” Linda Schutt

Wipe out ALZ 019“My brain matters because it connects me to my loved ones” Danielle Carlson
“My brain matters it connects me to the world around me” Sanicia Pickens

Wipe out ALZ 021“My brain matters because it keeps me connected with my daughter” Hannah Hixon

Wipe out ALZ 022“My brain matters because it is going to help me achieve my dreams” Brittany Namper

Wipe out ALZ 027“My brain matters because I learn something new everyday” Lynette Steger

Wipe out ALZ 026“My brain matters because people need me” Missy Herridge

Wipe out ALZ 024“My brain matter because I can use it to help others” Maureen Murphy
“My brain matters because if I can’t function there is no we…” Roberta Preston

Wipe out ALZ 023“My brain matters because it keeps me alive and happy” Emily Riehle

A personal perspective on Teepa Snow’s April 28 Education Conference


    

Do you need something? Tell me about it.  I will not forget these two sentences. They were presented as the better way to communicate with an individual who is losing their language ability and cannot find the right word or phrase to describe a need. I am not a professional caregiver but for three years cared for my father who has since passed away from Alzheimer’s disease. That journey with him was the most challenging to date in my life, but, in short, I wish I had known so much of the information that was presented by Teepa Snow at the 24th Annual Professional Education Conference just held on April 28, at the Par-A-Dice Hotel.unnamed (5)

The conference room was filled to capacity with those eager to gain new perspectives on how to gain a positive and partnering experience with the person with dementia in need of care.  Most were enrolled seeking a professional certificate, but not all.  I sat next to one elderly woman who said she wanted a clearer understanding of what was actually happening physically to her husband’s brain as the disease progressed. I said I was there because I still had an emotional need and an intellectual desire to understand more about my father’s behavior, even though he had passed several years ago.

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Perhaps to some this lingering need may seem strange, but for someone who had worked in the arts for my entire career, essentially spending my day making aesthetic and creative decisions in a quick turnaround environment, the caregiving world I now found myself in was absolutely overwhelming. It presented completely different life challenges. I was also inadequately informed and emotionally unprepared for what was to come.

In the ongoing journey that is Alzheimer’s, with the constantly changing and diminishing abilities of the person living with Alzheimer’s, the caregiver must be able to evaluate and readjust their care to these changing behaviors. For example, I was surprised when in the earlier stages of the disease, my Dad’s eating habits started to change. It never occurred to me that the diminishing abilities of Alzheimer’s would include radical changes in food preferences and increasing inability to chew and swallow food.

Food that he had enjoyed all his life he would no longer eat.  Many an evening I would cook two completely different dinners. I would fix one selection of food and he would not eat any of it. The good old mid-west meal of his generation, ham, mashed potatoes and corn was not touched. So, I would try again with a different selection of food.  With coaxing he might eat two spoonfuls off the plate then escape into the kitchen and grab and devour an entire box of cookies.  As my Dad had always been fit and a healthy eater, it was alarming to see this occur. It upset my Mother too, of course.  Although she was ill with cancer she was still well enough to want to help and would pipe up, “Oh, he won’t eat that either, quit that last month.”  I felt she wanted to show her expertise, after years of being “the main cook and bottle washer,” a role she took great pride in.

Another behavioral change, among so many that were to occur, happened on Christmas Day. We were all around the tree and I was distributing the presents, because every year I seem to get stuck wrapping them all, so it’s orchestrated that I get to distribute them, as only I know what everyone is getting, and I can place them in some kind of order that makes sense. But this was not to be the Hallmark Christmas card day.

I placed a brightly wrapped silver package with a red and green checkered bow in Dad’s lap, and continued distributing. I looked up, he didn’t touch the present. It just sat in his lap. In the excitement of the occasion I started to say impatiently, “Dad, what are you waiting for, open your present.”

Fortunately I caught myself, when I realized he didn’t know what to do with the gift.  In retrospect, I think that was one of the most telling moments in this journey of caregiving where I realized things were going to permanently change yet again, and I wasn’t sure what the best way of dealing with these changes would be, but I also knew I had better pay attention if I was to be an effective caregiver.

Now back to Teepa and the subject areas that she covered in the workshop. For me every subject area that she presented was information I wanted to know about and wished I had known about when acting as a caregiver.  From the coverage of the brain parts and their functions, to  specific ways of dealing with the behavior that occurs as a result to the physical changes in the brain, keys to identifying the early signs of  dementia, the definition and distinctions between the different types of dementia, plus dynamic demonstrations on techniques used to cope with the challenging and changing behaviors of the individual suffering from dementia were all presented.

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Teepa Snow is a phenomenal teacher. She is well informed, incredibly energetic, and straightforward in her presentation. She imparts factual information with clarity and passion often by using the skills of a seasoned actor. To drive the point home, she brings you right to the moment by recreating the shrill voice, anger, confusion, and fear often displayed by those living with Alzheimer’s. She mimics these behaviors so accurately that the audience’s attention is immediately drawn to her, waiting to see what she suggests as the best practice of dealing with this particular situation.

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Do you need something? Tell me about it.  Learning how to phrase and ask the right questions to communicate successfully is not just a little friendly advice, but like so much of the information presented at the conference they are fundamental skills you have to know in order to provide quality care for someone with dementia. The skills developed and information taught allows the caregiver to sustain a better quality care for the individual with Alzheimer’s and over the long term allows the caregiver to sustain better health for themselves. Yet another valuable lesson, the caregiver needs to take care of themselves as well.

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That was my experience of the day. I would love to hear about yours. Will what you have learned in this conference change how you interact with a person living with Alzheimer’s in your home or work environment?

Written by Christl Harvey, a contracted writer and eNewsletter editor for the Central Illinois Chapter