Five years into her mother Linda’s mixed dementia diagnosis, Patti LaFleur made the decision to have her mother move in with her and stepped into the full-time caregiver role. A former kindergarten teacher, Patti had no prior experience as a caregiver. What she did have, however, was love and gratitude for her mother and the confidence that they would figure things out together.
Patti’s raw and honest account of caring for her mother has inspired the caregiving community on social media. In addition to care tips, she’s shared her mom’s infectious laughter, their beautiful partnership, and how they’ve overcome obstacles. We sat down with Patti to learn more about her caregiving journey and the insights she has gained.
PicnicHealth: Can you tell us about your mom’s journey to diagnosis and what it was like for her living with dementia?
“My mom got diagnosed with dementia about eight years ago. We were starting to notice she was struggling with managing her diabetes, including missing her insulin shots. For 50 years, she had managed it beautifully. We also noticed she was forgetting to pay bills and starting to withdraw from conversations. At this point, my dad took her to the neurologist, which ultimately led to her diagnosis of mixed dementia.
Mixed dementia means that several areas of her brain showed some brain mass loss in her MRI. She kind of had a combination of Alzheimer's and vascular dementia. She lived in the beginning stages for a really short period of time. For the majority of her time living with dementia, she lived in what I would call the “middle” stages, where she was needing significant support in a lot of ways.”
PicnicHealth: What is one thing you wish people understood about living with and caring for someone with dementia?
“What I wish people knew about people living with dementia is that their life is not over.
Yes, it is a progressive disease. Yes, it is sad, heartbreaking, and challenging, but you can still live and love and laugh and find joy even as the disease progresses.
I think so often we think about dementia with a really negative tone. I'm not saying it's easy, but I'm also not saying it's the end. My mom and I were able to travel together. We were able to do art and music classes and find ways to maintain her independence as much as possible. Just because she had this diagnosis didn't mean she needed to stop having fun and stop living.”
PicnicHealth: Can you tell us about the evolution of your approach to caring for your mom and offer any advice for caregivers who are just stepping into this role?
“I think part of the reason my communication with her was so strong was because of the background I have in teaching. I was constantly thinking about what she was capable of as opposed to what she wasn't able to do anymore.
Of course, I had to recognize that she needed help in the bathroom or she needed help with preparing meals. At the same time, I was constantly thinking about what my mom could still do when we were making a meal and cooking dinner. Maybe she wasn't able to help me cut up the vegetables anymore because using a knife was too challenging, but she could still fold the napkins, stir the meat, and mix together the salad or whatever it was that we were having.
It really, to me, was always thinking about what she could still do, and I think doing that helped me communicate with her. It helped me provide opportunities to do things that she was able to attend to.
The other thing that I always thought about is I always put myself in her shoes. I always thought if this was me and I was in the same situation that my mom was – how would I want someone to treat me? What kind of choice would I want? What kind of agency would I still want? I don't want to live a life where everything is being done to me, so how can I give my mom even a limited choice throughout her day?”
PicnicHealth: What resources out there do you find most helpful in your caregiving journey?
“I would say during my caregiving journey, the biggest tools and resources for me were the Alzheimer's Association website because it connected me to support groups. It connected me to the 24/7 hotline. It connected me to different things in the community, like training and tools, and tips that I didn't know existed.
Another huge tool was my local county Department of Aging. They really helped me in looking into respite care and connecting me with facilities. Respite care was huge. I was able to find a facility in my neighborhood that did memory care and would allow my mom to go there for a weekend. When my mom would go there about every six weeks for a weekend, I got a break. I got to be Patty again. We probably only did that about five times, but that was huge. They were also a huge resource for me when I started to think about hospice.
As far as activities, the two big ones for my mom included an art class called “Opening minds through art,” which was through our local Lutheran Community Services, and it was incredible. It was all via Zoom, but it allowed me the opportunity to be her care partner in the creation of art. I learned a lot about communication and supporting someone living with dementia just through her art class.
My mom was also in this virtual music therapy class with Carla. It was beautiful. I learned about communicating with my mom. I learned about sharing music with my mom. I learned about what I call tricking my mom into exercise by dancing with Carla.
As I've moved a little bit further out of caregiving, I have learned about a lot of tools, like you guys with PicnicHealth. I always struggled because my mom had some doctor's appointments with her general doctor, and then she'd have some with her endocrinologist, and then when she fell and broke her hip, we went to a completely different medical place. None of them were connected. Had PicnicHealth been a tool that I had, it would have saved me so much time and energy trying to combine my own systems.
I would say this online community that I have had the amazing opportunity to find and be a part of has been very helpful. For anyone that isn't on Instagram or Facebook, there are a ton of caregivers out there that are sharing their stories in beautiful ways. They’ve made connections with people who are also caregivers or caregiver advocates out there. There's a huge wealth of knowledge online for people that are trying to connect and learn from each other.”
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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