Choosing to remember their mother for who she was before the illness, Ana and Lexi has set up the ALZIsFierce (@alzisfierce) Instagram account to celebrate their mother’s life. Ana is the main caregiver to Elena, while Lexi lives out of state, in California. We speak to them about their journey dealing with their mother’s illness and why they started this project.
By Melissa Chan
Elena was always a wild dresser and a huge fan of design and the arts. Having gone to fashion school in California before her two daughters Ana and Lexi Shoemaker were born, she pursued an artist’s career throughout her life. At home, she would often be seen making clothing and art. Her daughters remember how she used to stitch matching dolls and clothes for them as they were growing up. She was diagnosed with Younger-Onset Alzheimer’s and Frontal Temporal lobe Dementia at 56.
Choosing to remember their mother for who she was before the illness, Ana and Lexi has set up the ALZIsFierce (@alzisfierce) Instagram account to celebrate their mother’s life.
Ana is the main caregiver to Elena, while Lexi lives out of state, in California. We speak to them about their journey dealing with their mother’s illness and why they started this project.
Ana: As heartbreaking as it was to hear of mom’s diagnosis, I think that we were relieved that we had an answer to what was happening. After her diagnosis, I moved back to help her through the process, not knowing how long I would be with her. It has been 8 years.
It was a rough road for the family, because we also found out that our grandmother had it too. Alzheimer’s does not have a rewards outcome; it only has more surprise obstacles to take on.
My grandmother’s powers of attorney chose for her a nursing home where she ultimately died alone, but my sister and I wanted to keep our mom at home with us. The decision is different for every person.Caregiving for a chronically ill/disabled person is not a solo job. There were no similarities in my mother’s and grandmothers disease and in both cases it was devastating to see the decline in mental and physical health and the ultimate unrecognizability of each other.
I have experienced everything pretty much by fire; her albeit innocent, but inappropriate public behaviour; to people taking advantage of her during the earlier stages of her illness; applying to all sorts of assistance and the insane length of time it takes to get approval; and alzheimer’s-proofing the house for her wandering and safety; to falls and ER visits.
Occasionally, the speed of decline in mom’s behaviour and health would slow down. That was the biggest relief. But more often than not, something new would always pop up that frays the caregiver’s nerves and depletes the system.
Being with my mom everyday has given me a lot of time to come to terms with her no longer being the independent mother I once knew, it reaffirmed the devotion I have to her, and the support of my family and closest friends.
I had time to grieve her disappearance, because I witnessed every change and had to care for her, and I got to know a new human being in her and within myself. It’s different when you’re just visiting someone with Alzheimer’s. There’s a larger surprise element as the changes are drastic from the last time you visited.
We still recognise her in there. Her expressions are the same. She still adjusts the seam of our shirts to sit right on the shoulder. She still has her sense of potty humour and her sweet and gentle demeanour to everything. We cherish the occasional stares of acknowledgement or trust of our presence.
“You can choose to grieve or you can choose to celebrate but most of the time it goes both ways. It’s just how you deal with it. The series of pictures represents a way for us to celebrate our mom right where she is, to embrace the beauty of change.” – Lexi Shoemaker
Lexi: Growing up, we always connected over art and our childhood was full of support with creativity and the arts. We missed being able to share something with our mom. I was having trouble dealing with the fact that we could no longer connect.
My mom was always trying to make life fun, teaching us to live in the moment, so starting ALZIsFierce (@alzisfierce) is about celebrating her and not just disregarding her.
You can choose to grieve or you can choose to celebrate but most of the time it goes both ways. It’s just how you deal with it. The series of pictures represents a way for us to celebrate our mom right where she is, to embrace the beauty of change.
We believe that as much as this illness is terrible, the individuals with it can still be beautiful and full of life. The pictures say all the words my mom can no longer say.
I think when some one is sick its easy to forget who they were. Its easy to just say “oh she is gone she can’t really participate in anything any more”, but to me, I saw the opposite. I had this vision of dressing her up in the most colourful outfits and celebrating her life. What happened after was amazing. She came to life. My sister and I had found a way to spend time with her together doing something that engaged her.
Ana: Alzheimer’s is a fierce disease and we are fiercely healing from the loss of our mother. This project lets her be who she was in the costumes, be who she is in this moment, and still be freaking fierce at fighting the illness.
The message I connect to is shifting perspective on who a loved one becomes after the Alzheimer’s label. How do we present our loved ones when they become incapable of social interaction and when people stop visiting because the person they once were is no longer there? The other is that this has become an activity that we as a family share. It has given us some very connecting and dear moments to commemorate.
Being in this journey with my mom, I definitely think that there could be more resources for the younger generation. Preparation workshops and ways to creatively and emotionally express the challenges one goes through. I don’t mean just a support group that sits and talks. I think there could be more ways to interact with those with dementia related diseases like Alzheimer’s. There could always be more!
CHECK OUT A SNIPPET OF THE COLLECTION BY ALZISFIERCE HERE: Daughters Photograph Mom Battling With Alzheimer’s In A Series Of Style Shots