Dementia: Having the Conversation

*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.

Welcome everyone to Answers for Elvis Radio Network. And we are here in the month of October, and everywhere around us not only the leaves turning and they’re falling away. I always look at the month of October because it’s also Alzheimer’s month, and I think there’s kind of for me, I’m reminded of a graphic that shows a tree losing its leaves, and as the mind starts to change, for those that are suffering with Alzheimer’s disease, and I you know, we I think we try to bring as much information on Alzheimer’s and dementia as possible because, in my opinion, sometimes it’s I think it’s the hardest situation for a family caregiver. They don’t necessarily know how to communicate. There’s not a lot of education for families on trying to navigate senior care, especially for those that oftentimes can’t speak for themselves because they have memory issues, cognition issues, all different types of scenarios. So we’re talking about Alzheimer’s today, and we’re going to talk a lot about the family dynamic around Alzheimer’s. And we are here with wonderful Kelley Smith, one of my very favorite guests on the entire planet. Kelley, I’m glad you’re here from Care Partners Living.

– Thank you. It’s there’s always a lot of fun. I appreciate being here.

– This is such a monumental topic, Kelley. I talk to families every day — I received an email this morning and the question was, my mom and I went to the doctor and she’s quote unquote on the border of not being able to drive anymore because she is in the beginning stages of dementia, and and her doctor wanted her to to be assessed whether it was safe to drive. Well, the only assessment for somebody to drive would be the DMV. But, you know, it would be concerning to me because obviously I think this is a nice way of a doctor saying, you know, it’s probably time. But I want to be nice. So obviously there’s a lot of differences I think, in your world, about what’s the difference between normal aging and how we forget things, and how we move forward. Where do we draw the line between that what’s normal and what is dementia and Alzheimer’s, and how does that fit into the picture?

– Well, I think one of the things people have to remember is that we’re all gonna get forgetful at times, depending on our stress level, workload, et cetera. You can be forgetful at 20, you can be forgetful at 40. You can be forgetful at 80. What is normal forgetfulness? Forgetfulness is you you’re walking out the door and do you have your keys? Not normal for forgetfulness is you’ve got medications on the counter that are eight years old, but you think that you just got them. My grandfather is a perfect example of this. He could tell me stories from when he was 19 but he couldn’t remember what he had for breakfast. That’s not normal aging. People suffering from dementia will also have periods of depression, periods of aggression, frustration. There may be be some behaviors that might make you wonder, is dad drinking again? You know, all of a sudden, there’s gonna be moments when you might lose three hours, you might lose three days, when a person isn’t making sense and things that are doing are not in harmony with what kind of a person they are, and you’re confused yourself. And that’s when families really panic and start asking, well, what are we gonna do? And the one earmark we always tell families is, the one thing we always look for, is danger. If the person’s becoming a danger to themselves or other people, why are you trying to take things away from them? Let’s let’s focus on what can we do where we’re at at the moment, before we start jumping to a lot of conclusions about things. And the very first thing that is always recommended is get them in to see their doctor to get a proper diagnosis.

– And I think that alone is a big, big part of this. Once you have a formal diagnosis, there are different options for care. But family members may not recognize early warning signs. They may think, oh, well, dad always tells the same story over and over again and he always has and it’s not a big deal. Or, maybe  mom has always been stubborn and she’s just a little more stubborn than she used to be. You know, those those kind of things. Maybe, you know misinterpreted as not being Alzheimer’s or thinking that it’s it’s normal. My question is, if you’re thinking that maybe something’s off, you’re probably right, wouldn’t you say that that’s true?

– That’s that’s usually it, let’s be honest. Unless we have a long-distance relationship with our families, we usually can tell when there’s been a decline that’s significant enough to make a difference. We all decline as we get older. I think the saddest thing to watch is your parents start to slow down. Maybe they don’t do the same things they used to do, or they don’t have people over, and things like that. But pay attention to those kinds of signs as well, because the first thing people a lot of times do with any form of dementia is just become isolated. So that’s something to pay attention to. It’s not just he is she doing physically with her hygiene, and how’s the house looking, but how’s she doing socially? Does she still keep up with her friends and family members? Well, there’s a number of things you have to you have to consider all together.

– Well, and I think you bring up a really good point: look at the surroundings. I went in my mother’s refrigerator and she had little tiny teaspoons of food inside containers that had science projects growing around them that we’re sitting there for months, and something just wasn’t connecting with her anymore. Oftentimes, as a family member, we realize something’s off, and you don’t necessarily know it. So here’s my next question: If you’re sensing that something’s off, as an adult child or as a spouse, what are your recommendations on how to bring that up to your loved one?

– Well, a lot it’s gonna depend on kind of where we’re in the process. Again, a spouse, you’re going to notice things a lot sooner than you would maybe as a parent. And having those conversations is tough. And what I always recommend is put yourself in the other person’s shoes for just a minute before you even start this conversation. Understand that what you’re gonna sit down and talk to them about is scary. It can change both of your lives immediately, to your long term. And so the first thing to do is take take a deep breath and think about what is the message you want to convey, and ask them how they’re feeling. Ask them if they’re noticing things: are you feeling a little bit different, and are you noticing things are a little tougher or harder, or whatever it is you’re noticing in the home? Talk to him about it. And see what they say. They may tell you yes, and I haven’t been feeling right. I just, I’m scared, you know, Or they may tell you I’m perfectly fine, and then you’ll kind of know how to handle it from there. But put yourself in their shoes first of all, and understand that this is not an easy conversation for you to have, but it’s a harder conversation to hear.

– Yeah, The dynamic between a parent and a child is going to be different. When you’re looking at, for example, a mother daughter situation, I don’t care if mom is very weak and using a walker, you’re still the daughter. And there’s that older generation tends to have a lot of pride on their shoulders. They’re not going to show vulnerability to their adult children. Maybe it’s just learning to position conversations in a way that that doesn’t put them on the defensive, and to think it through on how do you best approach those those conversations. Like what you said, are you feeling different, and you know, are you noticing people maybe getting a little bit more annoyed with you when you’re conversing. Something like that so that you can bring them into the communication

– And also keep in mind the family dynamic when you’re having this conversation. I remember one time my mom got really sick. This has probably been 15 years ago, and was in the hospital for a long time, and they said she could go home, but they really recommended she had some extra care. And I said, hey, I’m the oldest kid, I’m the daughter. I’ll come take care of you. And she said, yea, No. My feelings were hurt for just a minute, but then I got it. She did not want our dynamic to change. She didn’t want to become my child. If I had gotten sick with her taking care of me, there wouldn’t have been any dignity issues because she’s already done that from the time I was born. So to change that dynamic, you have to think about that when you’re having these conversations with your loved ones as well. Remember, trying not to put them in a position where their dignity could be a concern. You know, maybe they don’t want you to take care of them, and don’t take that personally, but they know what this could look like. They may not want to have you be the one that does that kind of work for them, and you’re gonna have to honor their wishes as well.

– I want to explore in our next segment a little bit about connecting with them in a new way and with communication and really talking a little bit about how to explore care options together. And I think that’s one of the things that I’m excited to talk to you about. Kelly and I are going to be right back right after this.