By Patti LaFleur, The Longest Day® participant
My name is Patti. I am 35. I am a lover, I am a (former) Kindergarten teacher, I am a fantastic friend, a dog mom and a wife to my amazing husband. I wear my heart on my sleeve and I love sharing my journey with others. My husband, my mom, our two bull terriers (Dakota and Sitka) and our two robotic dogs (Popcorn and Pizza) all live together in Auburn, Wash. I care for my mom, Linda, full time — she is living with mixed dementia and Type 1 diabetes — and I lost my dad this year and he had dementia as well. They are the reasons why I am participating in The Longest Day in 2022.
My parents were total lovers, especially my mom. Her goal in life was to be a mom and she accomplished that by adopting my sister and me. There was nothing in the world she wanted more than being able to share her love and her life with others. My dad was hardworking, honest and made sure we had everything we could need. He valued hard work and education, so he made sure to provide us with the opportunity for both.
My mom was loving, kind and sentimental. She made everything special — especially the holidays! She made every holiday wonderful (even half birthdays and adoption days) and made sure we were doing fun things to get excited about holidays. From baking, crafts, events, movies, songs and puzzles, we celebrated everything
She had a positive attitude, a listening ear and was the best mom. It’s why I truly view caring for her as an opportunity and blessing, to give back the love she shined on me.
My mom also has Type 1 diabetes, so one of the first signs of dementia that we noticed was her inability to manage her diabetes independently. She had taken beautiful care of herself for 50+ years, but she started to miss shots, miscalculate carbs and struggle with tracking. In addition, she was the homemaker and handled the finances in the home, so she started to miss payments and forget to pay bills. At that point, my dad took her to see her primary care physician, who did the MoCA assessment and ran MRIs. They determined she had mixed dementia. She was assigned a neurologist, who we met with yearly. She and my dad were sent home with very little in terms of other support.
Taking on the role of caregiver
My dad was caring for my mom initially, but by 2020 that was not the safest environment for either of them. My dad ended up in the hospital, so my mom came to stay with my husband and me, and from there, just moved in with us permanently. I think it is very hard to be a care partner for your parent, but I think it has even more complications when you are a spouse caring for your loved one in the mid-to-late stages of dementia. My mom was not doing well living there, so moving her in with us was the safest option for everyone.
Being my mom’s full-time care partner was never a role I expected. I have been teaching kindergarten at a wonderful school for the last nine years, so I thought I would keep teaching forever. Then life changed. My dad was no longer a successful or positive caregiver for my mom, so my life took a new direction as my mom’s caregiver.
It has been an adventure to say the least. I have learned so much about myself and caregiving through this process. Every day is filled with fun, laughter and tons of activities (art, music therapy, dancing, laughing, reading, cooking, etc.), but it is also a lot of work. I am up multiple times at night checking on her. I have to lift her in and out of her wheelchair. She needs help with everything: toileting, showering, grooming, getting dressed, meals, medications, appointments, finances, etc. She requires 24/7 care and I have very little support from family, so everything falls on me. I think the decision-making is the hardest part. That and constantly wondering if I am doing enough or doing it right.
The best part of this role is the love we share. It is truly such a unique opportunity to get to give her the love she gave to me by adopting me. It is not very often that someone is able to care for their loved one in the way I am able to — financially, emotionally, physically and mentally. I really truly feel I was made for this role with her and we have so much fun. We go on adventures, we stay in hotels and we love on our robotic dogs.
I first noticed my dad’s dementia when he began having trouble with decision-making. Something he would have done without hesitation in the past, he now called and asked how to do it or for permission to do so. In addition, he was unable to accurately manage finances or medication properly. He made his world smaller as well, withdrawing from social situations as a form of self-preservation.
My advice for other caregivers
- Find a support system. Find people you trust that you can vent with, cry with, laugh with, bounce ideas off of — people who, in general, just get it. I have an amazing group of friends, but that wasn’t enough. My friends don’t “get it.” They were having kids, having their parents babysit for them, and here I was, over here drowning. That is when I found my amazingly supportive online support system through Instagram and my “Young Caregivers of Loved Ones with Dementia” Facebook page. It has seriously been a life changer to talk to people in similar situations who just get it. These people have become real friends and not just online friends.
- Find time for yourself. Take breaks, hire support or find respite care. This has been a game-changer for me. At first, I hired caretakers so I could work, but I didn’t take any time outside of that for myself. Now, mom does respite overnights on a regular basis so I can have time for me, my husband and friends. I don’t have family that can provide this support, so I have hired support to allow that to happen for my own mental and emotional health.
- Do your best to find joy. Let’s face it, dementia is heartbreaking, it’s devastating — but having that mindset does not change what is happening. Every day I get up with my Mom, and even if we didn’t sleep for more than two hours, it is my job to live in the moment with her and make every day the best it can be. We laugh, dance, play, craft, sing and enjoy every day. It isn’t perfect. I wish my mom was my mom, but it’s not her fault and being angry will only get us so far. We need to find the love and share the love every day.
Why I am participating in The Longest Day
I am participating in The Longest Day to honor my parents. They were truly wonderful people, and dementia has stolen so much from them. It changed my whole family dynamic, and I would love to live in a world where no one has to care for their parents and lose them the way I have.
Please join me in raising funds and awareness for The Longest Day. Together, we can outshine the darkness of dementia.