Takeaways from a Parkinson Caregiver’s Journey

And welcome back, everyone, to Answers for Elder’s Radio Network. And we are here with the wonderful Lianna Marie, and we’re talking about caregiving for Parkinson’s disease. And if you are a caregiver, I think a lot of the information it’s not just about Parkinson’s disease. I think it’s really about what your journey is like, and everyone has their own, Lianna talked about snowflakes, and I think that’s really what it is. It’s a unique situation. Lianna, tell us a little bit more about your caregiving journey. We talked a little bit about what you could have done different or what you’re most proud of, but let’s look get into the nitty gritty of it.

– Yeah, okay, thanks Suzanne. I think earlier I mentioned that when you start out, whether you’re a spouse or a daughter like I was, it’s really gonna depend on what age your loved one has been diagnosed. 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. Some folks are diagnosed in their 70s, 80s even, and so they’re gonna have a shorter time. So a lot of this depends on the overall length of time that one might be living with Parkinson’s. But for me, the journey having been so long, I really got to see and be a part of this slow, progressing, chronic illness, and one that 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. And then, at that time, 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 as many who have experienced know, that Parkinson’s disease is still – even though we know a lot more about it these days – in the healthcare profession there’s a lot that’s missing. And so 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.

– I think for you, in dealing with starting to write a book, being immersed in research and education and all those things, and yet I’m sure your family members were not as educated as you were. So, there was that side of wanting to do right for your loved one, but at the same time not wanting to alienate and disparage your family members. So I’m assuming you had to walk kind of a fine line. How did that work with your family members?

– In my case, I have three siblings, and then my mom had remarried, so she with Dave. So we had different dynamics of me figuring out, well, I like to call myself a project manager, maybe in a way, where I was like, ‘Okay, so here’s what Lianna is gonna do. Could sister one do this, could brother one do this? And could… you know?’ And it works well when everybody’s on the same page, but when people aren’t all on the same page, it doesn’t. So the idea was, back then there was Skype, not Zoom, but we would have Skype calls with my siblings and I, and sort of me explaining here’s what I think mom needs and what do you guys think about that? I was pretty fortunate because my siblings and I all pretty much were agreeing. From time to time, I’d get pushed back, ‘Lianna, that’s way too ridiculous. Mom does not need that’ And I’d be like, ‘But I really want that for her,’ and — sidebar: 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 now. I mean, it’s on paper. So I maybe sometimes took that a little too seriously, I suppose. We talked about perspective, and it’s easier now for me to say this, because I have a few years past the time when we were in that, but I think talking it over with my siblings was very helpful, and explaining my point of view, and then them explaining their point of view was helpful, because… you’re in it all the time, that you don’t realize what you’re doing, the forest for the trees. So it’s helpful to talk things over and then also for me to see things from their perspective. With Dave, when he was spending day in and day out with my mom, sometimes during a couple of those years it became very toxic for their relationship, and so we did eventually have to intervene and help that situation, unfortunately. But yeah, so those are some things.

– It’s like it goes right back to expectations, like what we talked about earlier. We all have different expectations of what the scenario is going to be, and perspectives. In many ways, you were lucky because you had family to be supporting. I didn’t have that, so you were you were lucky, girl friend. But on the other hand, I think that we all make mistakes too, and it’s sometimes hard when you don’t know what to do, but you don’t even know what to ask for, because you’re just so tired and burned out. Did you ever find yourself getting burned out?

– You know what, I did have an implosion, if you will, when I was at a crossroads of my sibling or two may have accused me of holding on too tightly to Mom when she was getting far along into dementia, and that I was trying too hard to keep this life that was no longer a life alive, and that this discussion of what is quality of life to mom? 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.

– And you were also power of attorney, so you had to be her advocate and you had to be that final decision maker about things, which I can only imagine. I had the same issue at the end of my mother’s life that I had to make some decisions, and I had to live with those the rest of my life. When I said it’s okay to start initiating comfort care and letting her pass, and that was really, really hard because they could have kept her alive, but she couldn’t eat any food. She would have been somewhat conscious, but she would have not been living a quality of life. She wouldn’t want to be like this. And so we all go through this process, right?

– And again we’re talking about late, late stage, and I don’t want to dishearten people who are mid stage and they’re like, oh my gosh, because this may not be your life. But I will say that there was a time when Mom was in I believe it was her third long-term care home, and she was in the dementia section of the home, and the doctor who I had a good relationship with is telling me, by the way, your mom is probably gonna starve to death, because she’s not eating, and I was like, ‘That doesn’t sound like my mom. I don’t know if that’s dementia or not.’ And sure enough, fast forward a few months where my aunt and I basically said, no, no, no, I don’t think that this is Mom’s not hungry, because every time we give her food, she’s eating, for example. We made it our mission to make sure that she wasn’t gonna “starve to death.” And sure enough, she didn’t, we moved her to another home and magically she gained 30 pounds back. I want to say that there’s this balance of letting go but also saying, hey, you know what, have we tried everything? Have we given mom every best opportunity to have a bit of a good life? And I felt better knowing that we had. So so these are just things in hindsight, you know that maybe helpful down the road for somebody who has the end of life care.

– So your mom was in long-term care for eight years. What was your experience with the health care providers as a whole?

– We could probably do an entire episode on that, and it is for sure something that is a challenge. To summarize, it was challenging. And whether Mom had an emergency and needed to go into the hospital, or she was in long-term care, it seemed to me that there was a big disconnect between what people thought Parkinson’s was and what it really was. And so I ended up doing, a lot of time, educating nurses that – of course we all know there’s can be a high attrition rate, so I’m continually saying, ‘hey, it’s really important she gets her meds on time every three hours.’ So that would be something that was very common. But because we don’t have a lot of time to talk about this, I would just summarize by saying it was challenging, but at the end of the day, I felt like I did make a difference by advocating and being around and talking to the staff.

– I would love to delve into that a lot more, Lianna, when we have more time, And certainly I think we could do a whole show on that, where we start talking about the beginning, middle stages, specialists and I think what your role is as a caregiver, of how you can you feel like you can advocate, and there’s also resources I think families don’t understand, like care conferences, and why they’re so important. So in the meantime, everyone, I would love to have you check out Lianna Marie, who is the author of “The Complete Guide for People With Parkinson’s Disease and Their Loved Ones.” Her second book is “Everything You Need to Know About Caregiving for Parkinson’s” and the upcoming book is “The Parkinson’s Path.” So Lianna, it has been such an honor to have you with us. Next, we are going to be talking about the holidays, coming up next. It’s that time of year in the Pacific Northwest.