I walk to end Alzheimer’s

I walk to end Alzheimer’s

Caring for her mother, Linda, after her diagnosis of Alzheimer’s was “an opportunity and a blessing to give back the love she shined on me,” said Patti LaFleur.

By Patti LaFleur

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, and our two robotic dogs all lived together in Auburn. I cared for my mom, Linda, full-time while she was living with mixed dementia and Type 1 diabetes. I lost her in March and I lost my dad earlier this year, and he had dementia, as well. They are the reasons why I participate in the Walk to End Alzhiemer’s.

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.

She made every holiday wonderful (even half-birthdays and adoption days) and made sure we were doing fun things to get excited about holidays–baking, crafts, events, movies, songs and puzzles. She had a positive attitude, a listening ear, and was the best mom. It’s why I truly viewed caring for her as an opportunity and blessing to give back the love she shined on me.

 

Mom’s diagnosis, dad’s diagnosis: Life takes a turn

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-plus 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. 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.

My dad was caring for my mom initially, but by 2020 that wasn’t 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.

Being my mom’s full-time care partner was never a role I expected. I had been teaching kindergarten at a wonderful school for nine years, so I thought I would keep teaching forever. Then life changed. It was an adventure, to say the least. I learned so much about myself and caregiving. Every day was filled with fun, laughter, and tons of activities (art, music therapy, dancing, laughing, reading, cooking, etc.), but it was also a lot of work. I was up multiple times at night checking on her. I had to lift her in and out of her wheelchair. She needed help with everything–toileting, showering, grooming, getting dressed, meals, medications, appointments, finances. She required 24/7 care and I had very little support from family, so everything fell on me. I think the decisionmaking was the hardest part. That and constantly wondering if I was doing enough or doing it right.

The best part of this role was the love we shared. It was truly such a unique opportunity to give her the love she gave to me by adopting me. It isn’t 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 truly feel I was made for this role with her, and we had so much fun.

My dad was hard-working and 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.

I first noticed my dad’s dementia when he began having trouble with decisionmaking. 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 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. They were having kids, having their parents babysit for them, and there I was, drowning. That’s when I found my amazingly supportive online support system through Instagram and my “Young Caregivers of Loved Ones with Dementia” Facebook page. It was seriously a life-changer to talk to people in similar situations who just get it. These people have become real friends andnot just online friends.
  • Find time for yourself. Take breaks, hire support, or find respite care. At first, I hired caretakers so I could work, but I didn’t take any time outside of that for myself. So I hired support for my own mental and emotional health.
  • Do your best to find joy. Every day I got up with mom, and even if we didn’t sleep for more than two

hours, it was my job to live in the moment with her and make every day the best it could be. We enjoyed every day. It wasn’t perfect. I wished my mom was my mom, but it wasn’t her fault, and being angry would only get us so far. We had to find the love and share the love every day.

I walk the Walk to End Alzheimer’s walk to honor my parents. They were truly wonderful people, and dementia stole so much from them. I walk to raise awareness, change the stigma around Alzheimer’s and dementia, and raise money for research.

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 walking. Together, we can outshine the darkness of dementia.

 

Patti LaFleur is an Alzheimer’s Association volunteer.

 

YOU CAN WALK, TOO

Separate events for the Alzheimer’s Association’s Walk to End Alzheimer’s will be held in Pierce County on Sept. 24 at Dune Peninsula Park in Tacoma), Kitsap County on Sept. 10 at Dyes Inlet Port in Silverdale), and King County on Oct. 1 at Seattle Center. Information: alz.org/alzwa, 206-529-3861.