Loni Reginato remembers her mother, Phyllis, as someone who was always ready for fun and adventure. After Phyllis was diagnosed with Alzheimer’s and Walk to End Alzheimer’s® came to Redding, the family formed team Good Ol Phyl. We asked Loni to tell us about her mother and offer some tips for other Walk participants.
How did you learn about Walk to End Alzheimer’s?
We learned about Walk to End Alzheimer’s in Redding through social media in 2010. The following year, my sister and I thought it would be a fun event for my mom and our family to be part of, so we started our team, Good Ol Phyl.
My dad’s sister had lost her husband, Rino, to Alzheimer’s several years before. My aunt and cousins joined us and became part of our team.
What motivated you to participate in the Walk?
Our Team consists of family members whose lives have been affected because someone we loved had Alzheimer’s. My dad’s sister, Virginia, lost her husband, Rino, to Alzheimer’s. He was in his early 50s when he was diagnosed. My dad’s sister, Alice, currently lives with Alzheimer’s in a memory care community. Then there is my mom, Phyllis, who passed in 2014 from complications due to Alzheimer’s. We also walk for so many of our family and friends, who are either directly or indirectly affected.
Mom was in her mid 60s when she was diagnosed, but we started noticing signs when she was in her late 50s. We had no idea what it was.
At the time (early 2000s), the awareness of Alzheimer’s was not as prominent as it is today. It never crossed her/our minds that it could be something like dementia or Alzheimer’s.
The day she received her first medication for Alzheimer’s is a day I will never forget. She phoned me crying. When I asked her what was wrong, she said “I have my prescription. It has the “Ugly A” on it!” From that day on, we have always referred to Alzheimer’s as the Ugly A!
A year after her initial Alzheimer’s diagnosis, she was retested. Her diagnosis was changed to a form of dementia and that eventually, it would become Alzheimer’s. It was almost ten years before the disease took over.
Tell us about your mom
My mom, what an amazing woman she was. She had a smile that lit up every room she walked into and the personality to match it. She was a beautiful woman. Her beauty radiated from the inside. She was always ready for fun and adventure.
Mom lived an hour away from one of my sisters and me. On a Friday morning, I could call her and say, “Mom, I feel a girls’ weekend coming on,” and she would be at my house before I got off work with a bottle of wine opened and ready. My mom, sister and I spent a lot of time on weekend adventures and shenanigans.
Christmas was Mom’s favorite holiday! The house was decorated from floor to ceiling, cookies baking and her famous English toffee. I will never forget the smell of Christmas, or hearing her playing the piano and singing Silver Bells. Recently, my sister sent this to me: “Once the glue of the family passes away, holidays just aren’t the same anymore.”
Mom’s greatest joy was her five kids and grandchildren. She was thankful each and every day for the gift of life and family.
She played the piano by ear, never learning how to read the notes. She could hear a song and then play it. She was a honky tonk and fun. She was stylish and very classy.
Mom was incredibly talented and was always wanting to learn new things: the guitar, stained glass, tole painting, a new recipe. She was funny, incredibly witty, a kick-your-heels up kind of gal.
A few things I miss most about my mom are her laugh, our long talks and her wisdom. Oh, the momisms!
There comes a time in life with Alzheimer’s that your loved one may not remember your name or who you are. I knew that day would come for me, and I dreaded it. When the day came, I was not sure I could keep it together, but I received the best gift.
My mom looked at me with the look that she did not know my name or who I was. My heart sank, but she said to me, “I cannot think of your name, but I know you are someone I love very much and that you love me.” That was enough!
Mom showed us that the “Ugly A” can slowly take away one’s memory and so many things about a person, but it will never take away the love in their heart. Until the end of my mom’s life, she was witty, kind and very loving.
Complications of Alzheimer’s ultimately took Mom’s life, but we will not let it define who my mom was, or what her life meant to her family and so many other people.
How do you get people to join your team?
The majority of the people on our team are family members. That’s the easy part. As we have grown over the years, several of our friends have joined us as well.
Share some fundraising tips
Our fundraising is mainly through generous donations of friends, colleagues and those who have loved ones affected by Alzheimer’s. Several of our team members use social media as a way to branch out to their network.
Our family has a mini mart in McCloud, CA, which my dad still owns and operates. In the summer, we have a friendly competition with the employees, who are also team members, to raise funds through flower donations.
Our local Alzheimer’s Association chapter provides the paper flowers. They are sold and displayed throughout the store. The town of McCloud and our vendors have been very generous and supportive of our Walk team.
For new Walk participants, I would advise them to just ask. Use the tools that the Association provides, especially social media (Facebook). Reach out and do not be afraid to ask. We all know someone, whether it is a family member, or friend, whose life has been impacted.
What is your favorite part of Walk day?
In the past, I think there was a misconception about the Walk: that it would be depressing and not uplifting. It is so much more than that. My mom loved the Walk.
I enjoy seeing people come together with their family and friends. There is so much joy.
What suggestions do you have for other families:
When Mom was first diagnosed, no one talked about it. We were not told about resources such as the Alzheimer’s Association 24/7 Helpline (800-272-3900), support groups or any other assistance that was available.
We did not talk about it. As time went on, we would talk more and we were provided more information.
If I could give anyone advice, I would say this: talk about it. Talk about it as a family. Most importantly, talk with your loved one who is living with dementia.
This disease can be very lonely and many times the person is silenced in a crowd. Spend time with them, build new memories and write down the stories. There are times when you want to cry but you laugh instead. You will not regret taking time with your person, but you will regret that you didn’t.
Everyone has a story. Alzheimer’s should not define your person. Tell their story. Be their voice. Hold your loved one and say I love you often.Loni invites you to join her team, Good Ol Phyl, at the 2022 Walk to End Alzheimer’s in Redding on September 24. Not near Redding? Find your walk at alz.org/walk.
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