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.
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.
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.”
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.