Welcome To
DANA'S WORLD
A Candid Look at Life, Love, and the Pursuit of Alone-Time with Caregiver and Elder Exercise Instructor, Dana Brock
Part 4:
SHIFTING GEARS
On Caring for Aging Parents
RALPH: You’re caring for your father right now, and you cared for your mother who died of Parkinson’s a few years ago. What’s it been like for you to care for your parents at this stage in life?
DANA: Hmmm, well I can definitely say that it isn’t easy. I would also say that caring for my dad and dealing with his Alzheimer’s has been more challenging than the caregiving I did with my mom. Take today—I woke up with Daddy hovering over me with his cell phone, asking me questions about it. Keep in mind, it’s Sunday morning, and I didn’t get to bed until around two, so it was a rude and weird awakening. Funny, I always think I’m going to catch up on my rest on the weekend, but I don’t know why I think that. I have to hit the ground running pretty much every day, and that includes Sunday.
My mother had Parkinson’s Disease for the last 17 years of her life. She was a strong person, but once she was diagnosed, she had to depend on my dad and me a lot more. Honestly, if she was alive right now, Daddy’s free-wheeling behaviors would just send her over the edge. Trust was always an issue in their marriage, and toward end of Mama’s life when the dementia had taken hold, she would sometimes have delusional episodes in which her fears would get highlighted, and that included her fear of his infidelity. At times, she would walk from window to window, just watching cars, and if she spotted a female driver, she would say, “He’s having an affair! That lady is going to pick your dad up down the street!” God I miss her, but I am just so thankful that she left us when she did, before things started going south with Daddy.
Dana with her parents
So anyway, back to my life here now. On any given day, I usually have a long list of things that I want to accomplish—but everything usually gets derailed by noon, and I have to switch gears and go with whatever is needed. Yesterday, for instance, I got Daddy’s spring clothes out of his closet, and I laid them out neatly on the couch and said, “Daddy, we’ll go through these together!” It was his idea to go through them. But of course he forgot, and he put them all back in his closet this morning. He has trouble recalling things that happened more than 30 seconds ago, and I really can’t trust him to remember much. So if there’s something important that he needs to know, I’ll always leave notes for him around the house. I might put one on his chair, one on his mirror, and one on the toilet seat. But I still can’t count on him to see them and read them. Some days, he even forgets that he has Alzheimer’s. It’s just what happens when you have it.
Okay, here’s another example: earlier today he informed me that his friend had a free night at the casino and they were going there later in the day and he was driving. “Are you kidding me???” I said. “You mean the one on Highway 44?” I’m basically horrified because it’s a confusing route, and they have construction going on there, and I’m thinking, “OMG, there is no way he can do this, what am I going to do?” So my day immediately gets hijacked by this problem. Meanwhile, it’s Monday morning, and I need to put on my happy face before teaching my exercise class, and I just feel torn in different directions. To be honest, though, the work that I do at Eldercare is a great source of joy and comfort for me because the seniors there are wonderful, and they remind me that I am loved and that someone actually listens to me.
Daddy’s forgetfulness is not the only big challenge I have with him. He also has some serious OCD behaviors which could be the result of childhood trauma or his military upbringing. There might also be a genetic component to it because I have a touch of OCD, too, although mine is less pronounced and it looks more like perfectionism. It’s more of a coping mechanism with me, and it comes out more when I’m under stress. There are just certain things that give me satisfaction in life, like having a neatly organized sock drawer. So I might organize that drawer when I really have other things that I should be doing. Thankfully, though, it’s not the kind of OCD where you can’t leave the house without rubbing your head and tapping your foot three times. No, I’m far too practical for that. With me, I think it’s just my way of getting my bearings and claiming a little accomplishment for myself.
At age 10 with her dad
It’s a little ironic that Daddy has these longstanding control issues, and then he ends up with Alzheimer’s where you lose control of your thinking. It’s not easy for him, and he’s definitely going down fighting. But then, he lashes out at me at times, and that’s hard because he triggers things that I went through in my childhood with him—things that I thought were healed enough to lie dormant. Honestly, if you could throw the worst possible curve ball at me, this would be it. Here’s a simple example: during the day, I might get the clothes out of the dryer and initially I might set them on the sofa before I fold them. BUT, because I’m living with my dad, I’ll hear his critical voice in my head and I might decide to go ahead and fold them before he says something about the clothes being out. It’s troubleshooting, but the fact is, even if I do fold them, he still might say, “Dana, you could have folded those better. They would sit better if you’d fold them differently.” I know this sounds small and petty, but it’s a chronic thing with him, and I’ve had to listen to his criticisms since I was a child. It hurt back then, and it still bugs me today.
I should add, though, that people with Alzheimer’s don’t always behave this way. It really boils down to a person’s outlook on life. At work, I’m in contact with plenty of folks who can’t remember much, but they’re still giggling. Sometimes they’ll even come up and say, “What is your name again?” I think it’s so sweet, and if someone asks me my name when I have my microphone on, I’ll usually go ahead and make an announcement about it to everyone. I’ll say, “Hey, if you forget a name, just ask, because we’re all forgetting names and you should never be afraid to ask.”
"To have a good quality of life as an older person, I think it’s so important to have people in your life who come see you regularly. It could be your kids, or close friends and relatives, but it could also be that nurse who comes in and takes your blood pressure every morning and says, “Good morning, Leonard! How are you?” Older folks really need that regular dose of stimulation."
Red hat Friday at Eldercare
So on a typical day at home, Daddy might holler, “Hey Dana, who’s that guy on the TV?” And I might respond with something like, “Oh yeah, I recognize him, but I can’t think of his name right now.” Well, because of his OCD, he’ll want me to look the name up immediately because he needs to fill in that missing gap to relieve his frustration. I do wonder, though, if the act of doing all these things for him, like looking things up and putting the dishes away, is making him a little lazy and feeding his forgetfulness. I mean, if he did those things for himself regularly, his memory might be better. But the truth is, I just don’t have the energy and patience to allow him to do the small tasks that I can do quickly.
I’m juggling a lot of plates these days, but my main focus is always my dad. I just know I need to be here with him right now, despite all the challenges. I can’t imagine how your average 80+ year old can keep up with everything that is required to live independently and safely at home without someone being there to help them. I mean, Daddy has no idea how to turn on the washing machine anymore, and he has no idea what medicine he takes. Honestly, if I lived elsewhere, like in another state, he’d be wearing the same shirt with the same mustard stain on it all week! So there really is a lot to be said for being here with him—to watch over things and just provide a prescence in the house. Like, if my dad doesn’t feel like talking one afternoon and he just wants to sit and watch Andy Griffith, I still like to sit in the room with him for at least 15 minutes so that he knows that someone is there with him. Plus, I do get some good stories from him every now and then, and I’ll say, “Oh wow, tell me more!