A True Love Story – Guest Post with Patti LaFleur

This month we had the pleasure of hearing from Patti LaFleur, former care partner for her Mom. Her story of caring for her mom is powerful, and we know you'll be touched.

Introduce yourself and share about your background. How did you come to be a part of the caregiving world?
I am the former care partner for my Mom, Linda, who had younger-onset mixed dementia. I cared for my Mom for three years in my home after my Dad was no longer able to care for her as her health declined. He ended up getting diagnosed with Vascular Dementia, which required me to provide care for him as well. He moved into an assisted living facility and I provided “long-distance care” to my Dad, while caring for my Mom in her home. My Dad passed in November 2021 and my Mom passed in March 2022, a month after a magical trip to Disneyland. We shared fun, love and joy together every day.

My Mom and I were meant to be. She adopted me and I reciprocated that love back to my Mom as her care partner. Since my Mom’s passing, I have continued to advocate for caregivers and people living with dementia. I also continue to raise awareness on Instagram (@misspatticake) and Tiktok (carepartnerpatti). I do this to raise awareness and change the stigma around dementia and Alzheimer’s disease. I volunteer for the Alzheimer’s Association as a community educator and I volunteer in the art class that my Mom attended. I am a member of Lorenzo’s House Young Professional Board and I am so excited to have an opportunity to share my story here.

How would you describe your journey caring for your mom?
The words I use to describe our journey is meant to be. This was a true love story. It was a story of patience, compassion and love reciprocated. We laughed, danced and connected every single day. Our relationship may have looked very different as the disease progressed, but it was always filled with love. Even as my Mom was unable to identify me by name or as her daughter, she still looked at me with such love. It was clear that she “knew” who I was even when she didn’t have words.

What was one of the hardest things in caring for your mom? What was one of the best things in caring for your mom?
The hardest part of caring for my Mom was the lack of family support. My husband and friends were amazing, but I had little to no family support. It was an impossible journey, but made even more impossible by isolation. In addition, it was challenging to give up so many roles that I had to fully care for my Mom such as quitting teaching to care for my Mom.

The best part of caring for my Mom were the quiet, comforting moments we got to share together. The hand holding, the hugs, the cuddles. We shared the most beautiful moments in some of our quietest times. It was also so special to just share vacations, silly moments and art together.

What resources or support do you wish you had in your care partner/caregiving experience that you now point family caregivers to?
The biggest resources for me were our music and art therapy. She participated in an online music class, and this was incredible for us. It taught me as much about caregiving, as she enjoyed it. It was a beautiful space for us to share music and for her to be able to connect with music. It allowed me to see so many strengths she still had while so much had been taken from us. So I am always pointing caregivers to music therapy. It is truly such a wonderful way to connect and see your loved one living with dementia in a different light. In addition, her art class was a way for her to connect with others living with dementia and have the opportunity to socialize.

What I wish I had: more support from my own family, but I wish I knew about Lorenzo’s House which is for younger onset families and youth caregivers. I also wish that I had known about Brutally Beautiful caregiver retreats, I had the opportunity to go on a retreat after my Mom had passed so it was lovely, but I wish I had gone when my Mom was still alive. It would have helped me to learn to set boundaries and remember that I am so much more than just a care partner.

What are you passionate about? How has your care partner journey changed your outlook on life?
I am passionate about advocating for people living with dementia and their care partners to live a beautiful life! I want to change the stigma around dementia, which includes that people living with dementia don’t think that a dementia diagnosis is a death sentence. There is still love, joy and fun to be had even on this heartbreaking journey. I want to support people living with dementia and their care partners in having access to fun. I continue to share my story to connect with care partners, change the stigma and help care partners feel seen.

The journey totally changed my outlook on life. It has shown me how SHORT life is and how IMPORTANT it is to live in the moment the best that you can. Life is too short to be sad, but it is important to LIVE IN EACH MOMENT. Take the pictures, say yes to vacations, dance in the rain and love your life.

What's your message to caregivers, care partners, or family members of a loved one living with dementia? What advice do you give to family caregivers of a loved one living with dementia?
My message is YOU ARE NOT ALONE. Find your support system. If you don’t have family or friends, find people in a support group or online that get it. It is helpful to have at least one other person on this journey who gets it. A person you can call on a good or bad day and they can hear and see you.