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MOMENTS of JOY and SADNESS, but such AN HONOR.

Although I worked in a professional capacity for forty years with dozens of people with dementia and their families, I didn’t realize how much I didn’t know about what it takes to be a caregiver, until one of my good friends was diagnosed with dementia.

After my friend’s husband died, I realized how much he had been covering for her dementia. She had no one she could rely on and lived 100 miles away from me. When she started calling me five to ten times a night we got frustrated — but she didn’t realize she had called just ten minutes before. After weeks of urging, I finally got her to a neurologist. When we came out of the appointment she said, “I know I should be really mad at you but I can’t remember why.” From that day on I knew I’d need to become more involved. No one should have to go through this journey alone.

Long story short, I became her healthcare power of attorney and helped her find a great place to live for three years, only eight miles from my home. Even though it was a difficult journey, we had many great visits and I have great memories of the times we spent together. I think of her often and smile.

When I was first asked to be a part of this group I immediately accepted the invite. Over the years I have responded to calls to our elderly population that I knew had the onset of dementia/Alzheimer’s and we had no resources at that time that we could provide to help out their families’ situation. With this group we have many key people involved to provide the resources to family members and make it hopefully a lot less stressful on the person’s life and hopefully even offer some relief to them and the family.

My extended family meets every year at the lake up north. In 2016, my aunt who lives in another part of the state was talking about how her husband wasn’t feeling well. His vision had decreased, he seemed confused sometimes, and she wasn’t sure about bringing him to the lake where there are lots of hills to navigate and would take him from his daily familiar routine. I offered to stay with him for the weekend so she could go and enjoy her relatives. The second day, I was preparing our lunch when his demeanor changed and he started making comments that were sexually explicit and inappropriate. I couldn’t believe my uncle was talking to me that way. Her son’s girlfriend, who was a nurse, overheard: “Oh, that sounds just like the dementia patients I deal with everyday!” Everyone close to my uncle had been living in denial about the changes in his daily life. After doing some reading, I realized my uncle talked that way because his brain was deteriorating. Since then, I’ve been determined to normalize dementia and memory loss instead of having it be a topic people are afraid to address. I love that our group puts education and awareness at the forefront!

My husband’s mother had dementia. I was not his wife when she was diagnosed or as the disease progressed. I only knew the family slightly through work where I saw Georgia on a very limited basis. Since we have been married, Kim has shared memories of some of the difficulties he faced while caring for his mom at home. It was not easy. Having a group to contact to ask about information or services would have been helpful. The Memory Cafe would have been a welcome outlet and support for him. I am, naturally, aware that Alzheimer’s is a hereditary disease and at some point, Kim, his siblings, or other relatives may be diagnosed with it. This group is an asset to Big Stone County. While we pray I never need its support, it is a comfort to know that the organization is here to help!

“When people have diabetes, we understand it’s a disease caused from a part of their body that is not working correctly. Yet when people have dementia or a mental illness, we may struggle with wondering why they act the way they do. Dementia is a disease of the brain, no different than diabetes is a disease of the endocrine system.”