Donna
Donna, her husband Mike, daughter Alexis, and son-in-law Tanner met with us at Bonjour Social and Leisure Center. The entire family and extended support network continue to share in Donna’s care so that she is currently able to remain at home. The story below is an account of our discussion before the photoshoot.
It was an unseasonably warm Friday in December when we met Donna, her daughter Alexis, husband Mike and son-in-law Tanner. We were greeted by their huge smiles and warm hugs, first by Alexis, then Mike, and Donna soon followed suit. Albeit they were a much younger group of folks than we typically meet for this project, but her qualifying diagnosis was undeniable. Donna has early onset Alzheimer’s Disease. Diagnosed in 2018 at the age of 56, Donna and her family are, in fact, our youngest participants to date for this initiative. Her story was shared with us by both Alexis and Mike, with compassionate cheerleading from Tanner.
Alexis began by sharing who she feels her mother is, “ a mom, wife, daughter, sister, friend.” Tears well up and her voice cracked as she continued “she didn’t have a specific job or hobbies. Her family is her life. She just is a lover to everyone.” She goes on to tell us that Donna, now age 61, demonstrated signs of the disease for nearly two years prior to being formally diagnosed with early-onset Alzheimer’s Disease. What were the signs? Mike shared it started simply with struggling to find the right word for common objects. “ She’d leave whole pieces of stories out. We had a while where it was subtle, but got worse the year before she was diagnosed.” They went on to share the path to diagnosis was not short. What started as an appointment with her PCP, turned to neurology then neuropsychology and included an MRI, written, visual and auditory cognition tests before the verdict was in. Surely, her youth was initially a factor for the diagnostic process, perhaps causing delay to the result.
With her being so young at the time of diagnosis, it made us curious. Was Donna aware of the changes taking place within her? Did she have a process to be aware of and accept her diagnosis? Alexis acknowledged at the time of diagnosis, Donna was cognitively past the point of being able to seek treatment herself and was dependent on family to make the decisions. However, to visitors and people she’d meet in public, Donna would often say light-heartedly, “Can you believe I have Alzheimer’s?! Me?!” There weren’t any tears or grieving on Donna’s end, per Alexis. As if the diagnosis was just as emotionally neutral an aspect of Donna’s makeup as her hair color or shoe size. “There’s something that happens when you finally have a label put to what you’re experiencing. That label changed everything, our perspective and hers. Our whole lives.”
Since being given that “label” in 2018, Donna’s capacity for self-care and language skills have been the two most affected areas of her life. While still in possession of a full vocabulary, the words she speaks often are not correct for the sentence or conversation. Nevertheless, the family chooses to have a remarkably positive outlook and appreciation for Donna’s loving, easy-going personality to remain unchanged. She still participates in all family functions, gatherings, and activities. Even date night with Mike still comprises of doing one of their favorite things: watching black and white horror films and laughing at the over-the-top dramatics. Mike commented how strong Donna’s demonstration of empathy remains. She responds to conversation with the correct tone, body language, and emotion, only the words fall short. Alexis added how her mom still loves people no matter who they are or whether she remembers them or not. We can attest this to be true.
Despite the great fortune of Donna still presenting fairly unchanged in regard to personality, the Klein family has not been without hurdles in this process. Mike shared on the experience of taking dual roles. All household management has now deferred to Mike who admits has been the hardest adjustment in the process. “I’m mom and dad now. She did so much that I never knew. So much I didn’t even have to ask about, she just took care of it. It’s been a whole new world for me.” For Alexis, the response came after a somber pause. “Just losing my mom.” She inhaled before continuing “Becoming an adult, getting married, and now wanting to start a family of my own. She’s been physically present for all of those things, thank God, but I haven’t been able to talk with her in so long. I have to imagine what I think she would tell me in any of these situations like ‘what would mom say about this?’” She went on postulating how she could start a family when her mother’s care is currently her focus.
The family continued chatting with us, sharing stories of Donna’s experiences in the last 5 years. How they consider it a blessing the “village” they have discovered and built in that time. People going through similar experiences has been solace for the bouts of loneliness, fatigue, and fear as they continue to face a new unknown each day. For those in the very beginning of their loved one’s journey, or even suspicion of a change, Alexis is adamant on her plight for early testing. “Start anywhere but don’t wait. Ask for testing and advocate for yourself. It may not be Alzheimer’s but what if it is?”
The interview ended as they always do. With the question, “What is Donna’s legacy?” The family each looked at one another, assessing who would be the one to respond before Alexis spoke up, “ Mom would want to be remembered for just loving people. From taking care of us, to the cards she’d make for any and all occasions (pictured with one), mom is forever just a carer. “
We went on to spend the remainder of our time with the Klein family with a camera. Besides her family’s encouragement for a smile, the shoot was uncoached. What you see is Donna and her legacy: family and love.
**Alexis recently opened a small gift boutique focusing on Alzheimer’s Awareness entitled “Love, Petunia” The boutique’s moniker being a nod to Donna’s legacy of being a lover of card-giving and her nickname for Alexis. Though being initially a collaborative mother/daughter bracelet-making project, the beads now appear too delectable for Donna to safely participate in the creation of product. However, she holds and endorses each item with love. A portion of every sale goes to local Alzheimer’s Resources.
For more information:: www.shoplovepetunia.com
Dementia Fact:
Early onset Alzhiemer’s Disease accounts for 5% to 6% for cases of AD with being defined as diagnosed younger than 65 years of age.
For more information: Early-onset Alzheimer Disease and Its Variants