Transcription:
Caring for Your Parents

Scott Webb: Welcome to Happily Ever After 40, a podcast brought to you by ProMedica, where we discuss midlife health and wellbeing. In this episode, we'll learn about what it means to become a caregiver for your aging parent.

I'm Scott Webb, and I'm joined today by ProMedica blogger and speaker Annette Wick. And she's here today to share her experiences, caring for her mother with dementia.

Annette, thanks for joining me. How did your relationship change with your mom as she started to get older after receiving her dementia diagnosis and things progressed?

Annette Januzzi Wick: It's always hard to know where the beginning is for someone who has dementia, because we never want to see our parents as old. And I always feel like you never see them that way until one day it's there right before you. And then all of a sudden, the signs have added up to everything that has brought you to that moment. And for my mom and I, she had been living together with my dad. They were still living in the family home, the large family home, if you will. I grew up with four siblings, so a beautiful family home. They took so much pride in that and it was very difficult for them to even consider letting go of that and making other changes.

My dad was diagnosed with Parkinson's. And of course, he had a lot more awareness of things that were going on in particular. And I live in Cincinnati. My mother was living in Northern Ohio. And one day, I got a call from my younger sister who was living up north and she said, "You know, mom's not bathing," and that was that moment for me. And it crystallized everything that I had thought, everything I had considered. And of course, I'm four hours away by car, thinking, "What am I going to do about this? What can I do about this?"

And I took a couple steps and one of them was really just in my own personal life. I had already been a caregiver to my first husband. And I'm also a writer. So I naturally take to writing when it comes to life's challenging situations. And I had been working with a population of individuals who had some form of cognitive impairment. So I was teaching some writing workshops with those types of individuals, so that I could educate myself and have a better sense of how do I interact or what are my days going to look like? What are her days going to look like at some point in time down the road? And I believe that that experience helped me as well as any other experience in terms of figuring out, "Okay. How am I going to approach this with mom and dad, of course, down the road?" And that was beneficial.

The other steps that I took were really just a matter of making sure that I was spending more time with them. And I know that's difficult for people that don't live nearby. But, you know, calling up my sister, asking, "What are these things that you're seeing? What else is happening?" Witnessing it for myself. One thing we have to keep in mind when we show up at the house, that we cannot start making changes right away, changes that we deem might be necessary. People that we want to bring into the household, maybe someone like a cleaning person or a caregiver, all of it has to be incremental because my mother's life has already been upended. She had a sense of that, although she couldn't put her fingers on exactly what was going on, and my father too. They're at the age, their late 70s, early 80s. And dementia, Alzheimer's not really talked about in so many of their circles because it was like cancer was 50 years ago. It was almost taboo. And there wasn't a lot of body of research and doctors didn't know how to approach family members with it. But really making sure that you are not trying to walk in and institute any sort of change from day one and ensure that it's a soft, gentle landing for your parents, whatever decisions need to be made, whatever changes you think might need to happen.

I'd say those are the two things that were really helpful, observing others and ensuring that whatever modifications that you think need to happen are not going to be drastic for their daily routines.

Scott Webb: Yeah. And of course, you know, dad's got Parkinson's and, as you said, he was maybe just a little bit more aware of what was going on. And mom, you know, diagnosed with dementia, and I know that she eventually moved into a long care facility. So wondering about your relationship after that move and just dealing with your dad, separating the two of them. Your mom being in long care facility. Take us through that. How did the changes impact you, and so on?

Annette Januzzi Wick: There were several moves. And I always tell people that anytime someone is moved into a long-term care setting, that it's only the right place for right now. And for somebody that experiences dementia, for anyone whose physical health continues to decline, maybe at a rapid pace, you don't know, you don't know the state at which they're going to decline or rebound. So they moved to the Cincinnati area and lived closer to me where I could watch over them a little bit more closely and observe a few more of their activities, so to speak. And my dad within maybe six months' timeframe of him moving, his health continued to deteriorate. So he wound up in and out of a couple rehab facilities and he would improve and then his health would decline, then he'd improve and his health would decline. Meanwhile, we have my mom in a dementia unit. It was locked. It's secure. There wasn't much room for her to move and, suddenly, she's almost imprisoned. But we were really unprepared because, again, you don't know when somebody's going to fail or not.

My father eventually passed away due to some other health failures and we moved my mother into another long-term care setting. Again, a lot of instability because of grief and not understanding what was happening, despite my ability to be with her every day, as much as I could to help ease the transition. And I have another sister who lives here in Cincinnati as well. And she was also part of that plan. And still, my mother continued to lash out. There were interactions with other residents and it was becoming very difficult. I wasn't her daughter in that moment. And I didn't even feel like her caregiver. We just felt like we were existing, so to speak. But we had an opportunity to move her one last time. And she wound up in the place where she eventually passed away. And it was a good place for her, and it was a good place for me too, because it was strictly for memory care. And I knew once we got in there that she could settle in and I could settle in and really just focus on her care.

Having both parents is very difficult when you're trying to manage their care, as well as your own life too, right? That's so important too. But you really need to break things down into something that's manageable. And I believe that my mother's previous move had been one where it was almost her way of letting me know that, "I'm not good here. I'm not stable here. We need to find somewhere else in which I feel safe." And really, the instant that we moved her, there were never any other issues, no other interactions with other residents. You know, she had her own physical up and downs as well as cognitive up and downs, but nothing where it was really impacting anyone else. And I believe that was her way of saying that this is a good place for me.

Scott Webb: You know, I watched a video recently, something on social media. So I'm just scrolling through videos and I see this video and it was a daughter and her mom and the mom had dementia and, clearly, most of the time did not know who the daughter was. And so the point of the video was watch this to see the moment here, where mom for a brief instant remembers who she is. It just brought instant tears to my eyes. And I'm wondering, were there any of those kind of moments that you feel comfortable sharing, you know, as this progressed, where you felt for a moment, that your mom was there, like that she knew who you were and, you know, that brought you a little bit of happiness?

Annette Januzzi Wick: Those moments were plentiful. We have to be present for them. We have to show up for them. We have to be open to them. And really, I believe it was a matter of letting my mother lead the way. We think as caregivers that we're supposed to be the boss, that we're supposed to be in charge, that we're supposed to oversee everything. And yet, what they need from us more than anything else is they need us to let them just be who they are. And I watched my mother become who she was meant to be in her dementia. And again, like I said, there were so many beautiful moments. And I keep a quote on my wall in my office. And it says, "She is becoming closer to the perfect state of being." And I felt like if I could keep that in my head at all times, and just remember that every time I walked in to see her, we would have a successful day time visit, whatever, because I allowed her to just be who she was. And my greatest lesson, and I learned this with my husband when he was diagnosed with leukemia, and I practiced it again with my mom, is to always make sure that you give more love than care.

Scott Webb: Very interesting what you're saying, which is that, if every time you walked in with your mom, you were always sort of comparing her to the mom that you had when you were a child, to the mom that you would probably like to have back, right? Then, it would be hard to walk out of there feeling like you'd had those special moments that you'd had successful days. But the minute you were able to just accept her for who she was, who she had become, this was her best self living with dementia, it probably changed everything for you and probably for her, right?

Annette Januzzi Wick: And for others around you, for caregivers, for staff members, for other residents. I spent so much time with my mom that I wound up going to the funerals of a few other residents that I got to know over long period of time. I got to know them because I could see them for who they were in that moment. And I didn't know anything about the life they lived before they came into that care home setting, but I knew who they were within that setting and within the short period of time that we were together. And you can change a lot of energy that way. You can change your day.

And I'll tell you one of the things that I miss the most is that grounding that I would get when I went to visit my mom. And again, reminder of what is important. And just the little things, the little smiles, the little claps, the little lights that shine out of somebody's eyes when they see you.

Scott Webb: That was that video that I was telling you about. The daughter was sort of wiping her face and then you could see it came over her mom. She didn't say a word, but you could see it in her eyes that she realized she remembered who she was. And it's emotional even now just to talk about it.

This has been a really important and meaningful conversation today, Annette. What would be your advice to give someone who is struggling with that sort of new role of parenting their parents?

Annette Januzzi Wick: What's important in that situation is self-care. Support at your home, whether it's a supportive husband, supportive children that understand and finding outlets for yourself, and education. We don't all have to be the experts. You eventually become one anyhow. And so save that for down the road, but arm yourself with the information that you need so that you can make the right decisions when the time comes.

And again, really understanding that this is a long journey and you want to make sure that you are well rested for this because you're going to need every ounce of sleep. You will need every ounce of patience that you have to have the kind of journey that you hope your loved one can have as they transition.

Scott Webb: For me, the takeaway here with you today about this is, you know, you seem okay, like you seem at peace with this. You made the most of the time you had with her in this journey as she progressed, as she got closer to the end.

Annette Januzzi Wick: And I think that's an important question to ask yourself is, you know, I set out to spend the time that I could with my mom, because I said I don't want to have any regrets. And the things that I did for her, I made choices and I said I don't want to have regrets. And if we're honest with ourselves about what's important to us and honest about, "Would you regret it if you did this?" "Would you regret it? If you did that?" You're going to wind up in a better place in the end, too.

Scott Webb: Yeah. I appreciate your time, your story, beautiful remembrances of your mom and your dad and your family. Really amazing. Thank you so much. You stay well.

Annette Januzzi Wick: Thank you so much, Scott. I appreciate it. Have a great day.

Scott Webb: And thank you for listening to Happily Ever After 40. Until next time, stay happily ever after 40.