And welcome back, everyone, to the Answers for Elder’s Radio network heard throughout the United States and on local radio here in the Pacific Northwest. And we are here with nationally renowned author and amazing individual, an expert on Parkinson’s, Lianna Marie. And Lianna Marie, I want to first remind everyone to check out Lianna’s books. She’s got several books that are available for you to purchase. If you know of somebody who is in the process of dealing with Parkinson’s disease, I want to remind everyone the names of your books are “The Complete Guide for People With Parkinson’s Disease and Their Loved Ones,” “Everything You Need to Know About Caregiving for Parkinson’s Disease”, and you have an upcoming book called “The Parkinson’s Path”. And so welcome back to this final segment of our show today and it’s kind of timely. We’re going to talk about caregiving during the holidays, which is a kind of a complex situation. There are a lot of families coming together, Lianna, many of our loved ones struggling with memory issues, cognition issues, balance issues. They may be living independently, but they also may be living in skilled facilities, and all of a sudden you’re bringing them home for the holidays. And I’m sure you have done that with your mom when she was in skilled skilled care. Is that true?
– Yeah, for sure. And mom lived actually eight years in skilled nursing, long-term care. We moved a few times. She was actually in four different spots. But you learn as you go, nothing is exactly the way you thought it would be the first time. Hence four different places that she lived in. We finally got it right on the fourth try. For us, that was learning, advocating that I did I think made a difference in the long term. But for sure, Thanksgiving and Christmas, which were really, really near and dear to my mom’s heart, were extra challenging, if you will, just because, well for many reasons, but because you want to capture those warm, fuzzy feelings that you always had with your mom, and I wanted her to have the best possible experiences, which is sometimes tricky.
– Especially because not everybody cooperates.
– No, they don’t.
– I was a primary caregiver from my mom, and I had it in my head that this could potentially be my mom’s last Thanksgiving, or our last Christmas. And I don’t necessarily know what’s in the future. I don’t know what the crossroads are, but I’m starting to see her decline, probably more than others. And so I remember that time of feeling the frustration, because the family members weren’t dialed in to make her a priority as much as I felt they should.
– I totally get that. I love my family, but at the time I would look around and go, can’t you see that mom needs this, this, this or this, she’s sitting over here in a corner and I’d be like, no, no, we need to do this. She can’t walk from here to there, or she can’t be this, or she can’t… but I realized later, I was different, and my role was different with my mom than my other siblings. And they all had their own role. It was just different than mine. And so it wasn’t that mine is more important, at the time I may have thought it was, but I was fortunate that I had siblings that were helpful throughout the journey. And at holidays, they needed sometimes a little bit of like direction if you will, oh, could you guys help mom do this, or could you guys do this? Dave, my mom’s second husband, God bless him. He was in the trenches for some time with her, and it unfortunately – it meaning Parkinson’s – got between the two of them, and they ultimately needed to separate. That’s a sidebar, but all that to say, during holidays, I know I had challenges with Dave because, this is nothing I wouldn’t say in front of him if he were still here, his patience was not as plentiful as mine. And so he wanted things done very quickly all the time, and he maybe wanted a certain way, and we just had to make some adjustments that he may not have wanted to make. The more I could focus on – ‘Hey, this is Parkinson’s, this isn’t Mom that’s doing this to you. Let’s try to remember what really the problem is, it’s not mom.’ – to try to see what is really at the most important right now.
– One of the things that you bring up, I’m hearing kind of a consistent theme from your story to my story, to so many, and that is expectations. We all have different expectations over the holiday season. And I think one of the things we can look at is you and I being the dialed in one, that it educated ourselves. We may be dealing with people around in our circles that may not be as dialed into what’s happening, and so their perspectives are very different. But also so are their expectations. One of the hardest things for me was to learn to let go of the expectations of other people, because I felt at the same time really, really alone in the process of taking care of mom. I’m sure you felt that, here I am with I feel the weight of the world on my shoulders and taking care of her. This is a very important time of year. And what I would really like is for my family to step up and help, but I don’t even know how to ask for help because I can’t see the forest for the trees. And yet everyone has different perspectives. Was that your experience?
– Oh yeah, and that’s why I’m saying, no one is perfect and, first of all, we’re all fumbling, kind of trying to figure out how this is going to work best for mom, and my way isn’t necessarily the best way. I just know this to be true right now for Mom, that this is what she needs. And so I can’t blame anyone, but I certainly relate to feeling alone. Holidays are… we create this massive set of expectations, so then we’re wondering why we’re so let down. Well, how about we just change that narrative and say, okay, just look my mom, what are her favorite things? Things were not things, they were people. They were: surround Mom with her family. Her grandkids for example, were her therapy. We put those in front of her, around her, and she was happy as a clam. We didn’t really need a heck of a lot else. Okay, maybe some turkey, and that was good, some sweets. She loved the desserts. But there wasn’t really a heck of a lot else that we needed to do in terms of making it a happy time for her. I was the one that was complicating things a lot. She wasn’t, she was just there living with Parkinson’s, and as the dementia set in more and more, sometimes, we had to bring the holiday spirit to the long-term care home where she was at. You know, we had to bring the music there. We set things up there. My aunt put on dance time at the long-term care home. She would organize these kinds of things, like the music, with the Christmas music on the piano. She would come in and play piano and bring the music to the people, and stuff like that. So when I felt that I was so alone, I had to remember that A) I wasn’t, that that was just my imagination, that my family was all there, and B) I needed to dial down those expectations of what Christmas once was, that we can still get the essence, if you will, the essence of what made it so special.
– I think you’re right. You bring up such a big point that Christmas doesn’t have to be what it used to be. We can do things different. We don’t have to decorate to the nines anymore. We don’t have to do the over and above. And I’ve watched myself as I’ve gotten older – I do less and less during the holidays than I used to, because I just don’t have the energy that I used to have. I mean, I remember staying up till two in the morning with all the Christmas decorations after Thanksgiving, and doing all this stuff, so everybody could come down after Thanksgiving dinner and here’s everything decorated. That was me, which was crazy, right? I don’t do that anymore.
– But that’s the thing, whether it’s dementia or Parkinson’s, it really did make us slow down and put into perspective what’s most important, and that can be applicable to anyone, really. It’s just Christmas time, and at Thanksgiving. Those are the times when you look at yourself and you look at where am I at my life, what’s most important, and oftentimes you’ll hear “family or friends.” For my mom, at least, those were the most important things to her.
So, again, to each and every one of our listeners out there, if you are caring for someone with Parkinson’s disease, or if you’ve been recently diagnosed and want to know about the process, Lianna Maria is certainly available for all of you on our podcast network. You also have a website AllAboutParkinsons.com. You have a Facebook group, and tell us about your books.
– Yes. The Complete Guide is for people that may be newly diagnosed or someone that knows someone who’s newly diagnosed. The caregiving book, “Everything You Need to Know About Caregiving for Parkinson’s Disease”, is for obviously for people who are caring. And then the upcoming nook, “Parkinson’s Path,” I hope will be available in early 2023, so that we can talk about, and you can hopefully relate to the emotional journey we go on when we’re affected by Parkinson’s.
– Absolutely, Lianna, happy holidays to you. Have a wonderful, wonderful holiday season and many blessings to you and your family.
– Thanks Suzanne.
– And to each and every one of you as we enter the Christmas holiday season, we wish you all the very best this holiday season. Until next week, be good to each other.
