My mom, Renée, was diagnosed with early onset Alzheimer’s when she was 65. She said having the diagnosis finally made everything make sense. If you met her socially you might not even have a clue that she has the disease but behind the scenes and to a trained eye the evidence is there - the impulsive poor decision making, not being able to tend to her finances, a hard time starting tasks or remembering the sequence, not being able to find the right word or remember the meaning of once known words and the strange 2 year old type melt downs.
She was diagnosed in 2013, but doctors believe it had been going on much longer. The first clues were her missing doctor's appointments - she'd go on the wrong day, forget about it completely, or never make the appointment because she'd simply get lost, forgetting her normal route to get there. She also became increasingly home bound. The doctors said she needed increased exercise, to eat right, and had given her a list of things to do. But no longer being a self starter, nothing was done. I was a Special Agent at the time living across the country and frequently traveling out of the country which made it very difficult to really know what was going on. When I questioned her or asked her if she at least walked around the block, she would say, "I have to go now," and would hang up the phone. Neighbors that checked on her said she was increasingly staying in her pajamas and often didn't know what day of the week it was. On a trip to visit me, I saw how things had gotten out of hand. She wasn't following the prescription check off chart I created to help her remember if she took her many medications. She had the wrong dose of one medication and forgot to bring another. Luckily, I had already set-up access to her medical information so I knew what she should be taking and a quick trip to the 24hr emergency pharmacy got everything straightened out....until, she took double the dose the next day. So, at that point I knew my mom really needed help and I couldn't do it long distance so that road trip turned into her relocating from California to Virginia and us became roommates and starting our Alzheimer's journey together.
I'm not going to sugar coat it, receiving my mom's diagnosis was devastating, but learning all we could about the disease, taking each day as it came and not being too hard on ourselves helped us cope.
In 2014, we relocated to NYC for my job and became acquainted with CaringKind. We were ravenous for their programs. Their workshops for caregivers were invaluable to me and the support groups and specialized programs at their Early Stage Center reassured my mom there was still a lot of quality life ahead and she could live it on her own terms and they provided her with the skills to do just that!
However, the stress of the job and long hours away from her made me pause; I wasn’t as patient with her as I wanted to be. I had eight more years until I could retire and collect a pension but I felt a relentless urgency not knowing how fast the disease would progress. Determined to cherish the time we had and to live our lives to the fullest on our own terms, in 2016, we upended our lives; I left my 15+ year career in law enforcement and we moved from NYC to Savannah, GA where cost of living was lower. LOVE & MOXiE was born from our desire to raise Alzheimer's awareness and money, we donate a portion of every sale to Alzheimer's charities including CaringKind, while enjoying time together doing things we love like creating. Fusing mom's love of color & texture and my love of organization & all things sparkly, I dusted of my childhood sewing skills (as a child of the 80's, pegging my pants spawned my sewing necessity!) and we began creating small batch handcrafted bags and accessories. Today we specialize in utilizing deconstructed vintage and thrifted finds and creating custom bags from our clients’ most cherished clothing items. Mom cuts all my threads, helps with packaging and is well known at markets we attend, most come just to see her. We hope LOVE & MOXiE inspires others living with Alzheimer's.
We have our good days and bad days but all in all mom is doing great! She is on the Exelon patch an Alzheimer's medication which has helped with her symptoms and slowed the progression of the disease. She keeps a routine, exercises regularly attending yoga and line dancing classes, eats well, and keeps social and engaged via lecture classes at Savannah’s Learning Center know as college without the tests for the 55+ community. She also goes to painting classes which is actually a wonderful blessing of the Alzheimer's - you see Alzheimer's can lower ones inhibitions so her fears of trying something new were non-existent. It’s also this same inhibitions that sometimes has her saying the darndest things, think no filter. She's really good too! She might not remember all the line dancing steps or everything in her classes, but she . . . and I . . . have learned to adapt . . . a lot.
I know this won't last. This awful disease will inevitably progress and ravage her mind. She will no longer recognize me and she'll become a person I don't recognize - just a shell of her vivacious self. But, until then, we will live life with moxie!
My best piece of advice is each person's journey with Alzheimer's, whether as the person with it or their caregiver, is different and unique. Don't compare yourself with others, learn what you can, do the best you can (you'll have good days and bad), be kind to yourself, and know that there is still so much life to be lived even with Alzheimer’s.
Thank you CaringKind for the opportunity to share our story and for all the amazing work you do. Cheers, Danielle