Joining Suzanne this hour is Lianna Marie, founder of AllAboutParkinsons.com, who has written a new book called "The Parkinson's Path." In this segment, Lianna provides some Parkinson's caregiver advice, talks more about what she could have done different, and what she learned from her 30 years living with her Mom through Parkinson's.
Lianna says, “In my mom's case, she was in her 40s, so obviously it was a lot younger, and she was going to have a longer journey with Parkinson's. So a lot of this depends on the overall length of time that one might be living with Parkinson's. But for me, I really got to see and be a part of this slow, progressing, chronic illness, and one where I evolved from cheerleader to care partnering, which I think is a great term that we use nowadays, because you're the partner not necessarily hands-on caregiving, and then caregiving later, where I was doing some of that nitty gritty stuff, if you will, helping with those daily tasks and things that my mom needed, and then ultimately handing some of that off to professionals who care for Mom in long-term care. I spent a lot of my time advocating for my mom, and really just trying to get the people that were "in charge of her care" to take the best care of my mom, teach them a little bit about Parkinson's, because even though we know a lot more about it these days – in the healthcare profession there's a lot that's missing. I spent a lot of time teaching – if you will, for lack of better word – staff on best ways to make my mom's life easier.”
As the family member who was her mom's power of attorney, Lianna describes how that worked with her siblings, and whether she ever got burned out. “In my case, I have three siblings, and my mom had remarried. I like to call myself a project manager, where I was like, 'Okay, so here's what Lianna is gonna do. Could sister one do this, could brother one do this?' And it works well when everybody's on the same page. Back then we would have Skype calls with my siblings, with me explaining what I think mom needs, and what do you guys think about that? I was fortunate because my siblings and I pretty much were agreeing. From time to time, I'd get pushed back, 'Lianna, that's way too ridiculous. Mom does not need that' My mom had appointed me power of attorney of her care. So I felt like I had this duty to make sure I gave her the best possible outcomes, that's my job – I mean, it's on paper – so I maybe sometimes took that a little too seriously. It's helpful to talk things over and then also for me to see things from their perspective. I did have an implosion, if you will. One or two siblings may have accused me of holding on too tightly to Mom when she was getting far along into dementia. Just keeping her alive is not important if she isn't having some joy or something positive. It's so much easier now for me to talk about it, but at the time, you're letting go of your loved one, your mom."
Lianna has also written "The Complete Guide for People With Parkinson’s Disease and Their Loved Ones," "Everything You Need to Know About Parkinson’s Disease," and "Everything You Need to Know About Caregiving for Parkinson’s Disease." Her books are available at Amazon, Barnes & Noble, and wherever books are sold. The new book "The Parkinson's Path" will be available in early 2023. Hear more of Lianna's podcasts at Answers for Elders, and visit her website or AllAboutParkinsons.com to learn more.
See omnystudio.com/listener for privacy information.
