Living with Dementia: Family and Music Soothe the Soul

This is the second part of our conversation with Janice Swink, the spunky music-loving mom of two, who lives with dementia.

You can view the first part of our conversation here. 

Ben: Your Twitter feed (@JaniceSwink) is pretty powerful. It's full of joy. You have a lot of videos of you dancing – in your kitchen, on the street, in a store. And of course you're also documenting many of your daily struggles. You share both your ups and downs.

Janice: I said that I'm not going to sugarcoat it and that I will share the good, the bad and the ugly. And unfortunately, there's more ugly than anything. But if I'm having an OK day, I try to share that. I try to share what's happening to me throughout the day or what happens at night because I can fluctuate from one minute to the next. And it's just like all over the place - the hallucinations, the loss of balance, bladder and fecal incontinence - which I've had to deal with. This is all stuff that people don't want to talk about, but needs to be talked about.

LIVING WITH DEMENTIA: Felt like getting out for a bit. I hear the music and have to move! 💜 pic.twitter.com/hfyfcJfFu8

— Janice Swink (@JaniceSwink) March 6, 2021

Ben: I have noticed on your feed how your condition can quickly change. How do you prepare for such large daily peaks and valleys?

Janice: You can't prepare for it because I don't know what's going to happen. I could lose my balance all of a sudden, without warning. So I'm prepared in a sense, for surprises all the time.

Ben: You tweet a lot about how you’re feeling. What do you want people to take away from you? What do you want them to learn, or remember?

Janice: I hope that they try to understand all the different things that happen to people with dementia are beyond our control. That we're not doing this on purpose to get back at you or anything. I'm hoping that it helps the caregivers try to understand more. I've had a lot of caregivers tell me that their mom or dad has passed and they wish they had known this while they were still alive.

I want other people with dementia to know that they’re not alone. There are a lot of us out here. I just want to help people. How can I take something so horrible and make something good out of it? When I started out on Twitter a few years ago, I had like two people following me and then I started sharing. And soon a couple thousand people followed me and that just blows me away. If anyone wants to Google Janice Swink, all my dance videos will come up. I used to love to dance. I can't do it much now, but I wanted to show that, even though I had dementia, I could still do something that I loved. It’s frustrating now because I'd like to dance since I was a little girl and can’t anymore.

Ben: What is a typical day like for you?

Janice: I usually wake up pretty early, but if I have something to do that morning, it just totally wipes me out for the rest of the day. I usually I don't go out much anymore and I stay in my pajamas. Sometimes I will wear the same pair for over a week and my husband will remind me when I probably need to change. That's just not something that I think about anymore.

I hate showering now. And I have a lot of medication to take in the morning. My husband writes me reminder notes at times to do things, like take my meds, and he'll put it on my table beside my recliner, and sometimes I don't even know it's there.

Ben: How does all this make you feel?

Janice: My mood can change throughout the day. But at this stage in the disease, I just have no feelings inside anymore. If I'm watching TV, I just feel empty. I know I'm supposed to laugh about something or feel sad. And having a true feeling of that is very hard because for me to feel those things. My son got me a little trinket for a gift and I said something like "oh, that is so nice. Thank you." And but I don't really feel it inside. I know I should feel something but I don't.

Ben: For how long have you felt this way?

Janice: That's probably been going on for two to three years.

Ben: Was it difficult when that started happening to you? Does anything break through and touch you in a way that reminds you of the old you?

Janice: At times I wish I could feel a true feeling. The only time I really can have true feelings is when I listen to music. Because I love music. Almost like euphoria to me. (I'm doing good with these words today, some days it's hard for me to talk.) But music can just reach in me. And I've always loved music. With dementia, Alzheimer's, many people can be non-responsive and you put one of those headsets on them with the music and you watch them come to life. It’s really neat that music is the last thing in me that makes me feel.

Ben: What music do you like to listen to?

Janice: I like any type except for rap and heavy metal. I have such a great music that I love. But it's not just geared towards one type, so I guess I'm kind of lucky in that area because I love Andre Rieu, his orchestra. I absolutely love him. I'm hoping one day to get to go to one of these concerts because it looks so amazing. But then I like Bruno Mars. There's a range.

Ben: How often are you are you listening to music?

Janice: Not every day. I'll forget that my headset is even there some days.

From two years ago! 💜 pic.twitter.com/BATEwmQRN0

— Janice Swink (@JaniceSwink) April 5, 2021

Ben: Can you tell us about your family? I know you have a husband, Eric, and you've got two sons.

Janice: Two sons still at home. Our youngest is 20 and he's on the autism spectrum, but high functioning. And we have a twenty two year old still at home. And my brother, who has vascular dementia, lives with us. Eric is the only one that drives, so he's responsible for getting us to doctor's appointments, picking up our medicine, doing the shopping, the cooking. It was hard for me to give up cooking. That bothered me more than driving because I had been cooking since I was 10 years old and I was used to cooking for my family, making sure that they had good meals.

Before I met my husband, I was very, very independent, single mom with two kids. I was in insurance for around 20 some years as a claims adjuster. I used to negotiate settlements with attorneys. I would speak to judges, doctors, and to go from that to where I am today is pretty unbelievable.

You can't get those pieces back. It's like your brain is just misfiring, it's shrinking, and it’s dying off in places that impact the entire body. It just amazes me. A neurologist went back and forth about whether I had Lewy body as well as a frontal temporal, and I think he decided that I don't have Lewy body. Until my brain is actually looked at under a microscope after I die, we won’t know for sure. The attitude I have is that what really matters is the time I have left; if I do have Lewy body as well, it isn't going to change anything. So I'm not going to get hung up on that.

Ben: You’ve shared on Twitter recently that you’re experiencing hallucinations. How are these hallucinations impacting your sleep, your emotions?

Janice: They mainly happen at night. They can impact my sleep and emotions. I saw a black cat on our floor in our bedroom not long ago. I even told Eric to not step on that cat. Some other night I was seeing black worms squirming all over the floors. And I'm terrified of worms. I just I can't stand them. So when I'm laying in the bed, sometimes I'll see big black blobs and people standing in the bedroom. And I'm paralyzed. I cannot move. My phone is close by, but I usually forget it’s there, so I don’t call Eric for help. So I'm just laying there, paralyzed at times. It'll feel like my legs are going through the floor. I'm being swallowed up. I'll see people walking in front of the window, and but there's nobody there. I’ll see on our bathroom floor tiles different faces of monsters staring back at me. It can be pretty scary.

LIVING WITH DEMENTIA: Oh boy what a night! Right after I went to bed last night the hallucinations started. I was seeing black flying monkeys all over our room! The walls were covered. Then I was seeing the large black blobs all around our room. Telehealth this morning with doc.

— Janice Swink (@JaniceSwink) March 25, 2021

Ben: Are you able to tell yourself that these images aren’t real?

Janice: No, not in the moment, it all feels real.

The third, and final part of my talk with Janice will come released shortly. Please stay tuned.