How to Talk to Someone with Dementia with Pam Ostrowski

Guest Pam Ostrowski joins Virginia and Steve for a conversation about compassionate communication.  She recalls her own experience caring for her mom with Alzheimer's and relays some of the experiences that she has had with her clients as she helps them navigate dementia caregiving.   Pam emphasizes the importance of  prioritizing being happy over being right when communicating with loved ones living with dementia.  To learn more about what Pam does, visit her website at www.itsnotthatsimple.com. What would like to hear about next? Email us at mwitbrac@uci.edu.

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Steve  0:06  

From the University of California, Irvine, this is UCI MIND’s, Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia  0:24  

Hello, and welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my partner in crime Steve O’Leary. Today, our subject is the best way to speak to and with our loved one with dementia. It sounds easy, but when someone has Alzheimer's disease or dementia, communication is a completely different ballgame. Our guest today will help us understand how to create joy, and avoid conflict, miscommunication, arguments and general bad feelings by communicating the right way.

 Virginia  1:03  

Before we start, I'd like to ask my partner and co-host if he has a tip or two. Steve, do you remember any tips that you learned for communicating with your wife, Patty, who had Alzheimer's disease?

 Steve  1:18  

Yeah, I think the key obviously, the whole, one of the whole keys of the whole relationship is patience but specifically, I think it's the whole idea of go slow. You know, just take your time, it doesn't need to be on a speed that you're used to, you need to remember that the information you're communicating may take a while for it to process and so you need to be patient and relax and not be in any hurry and the more agitated you seem, the more agitated your loved one is going to be as well. So if you're calm, and you're not in any rush, then communications will be really well. And Patty was you know, incredible that way and I just kind of calmed down instead of being Mr. Business Man, I started becoming Mr. Caregiver and it made a huge difference. 

 Virginia  2:13  

A different ballgame. I know our guest is going to touch a lot on that on that subject. I think my biggest problem with communicating with my mom was that it took me so long to understand that her brain was changing. I was fighting that the whole way. It took me a long time to learn that I had to communicate with her and sometimes in a slightly different way. Anyway, our guest today is Pam Ostrowsky. Pam is talking with us today from Phoenix, Arizona. Back in 2000, 2001. Pam didn't know she was in for a 14-year journey with her mom who had Alzheimer's disease. Her father also had dementia for several years before he passed away. She is not only an experienced caregiver for her late mom, she is a Certified Dementia Practitioner or a CDP and is certified in dementia care with a CDC.

Pam has done several wonderful things and one of them is start a business called Alzheimer's Family Consulting. She will hold your hand and guide you through the whole process when your loved one has been diagnosed with dementia. I wish I had that back when.  She also wrote a very helpful book entitled, “It's Not That Simple. Helping Families Navigate the Alzheimer's Journey”.  When I was reading Pam's book, I really felt like we were living parallel lives at the time. She said, “I didn't know what I was doing”. And my thought the whole time was I don't know what I'm doing.  But we both felt at the end of that journey that we needed to share our stories. And we needed to get information out there to help other people. Anyway, it's time we bring on our guest. Welcome Pam and we're glad you're here with us. 

 Pam  4:23  

Thank you, Virginia. Thank you, Steve. It is a pleasure to be here.

 Virginia 4:27

Well, I know that you have so much to tell us and I feel certain that someday you can come back with us again because you have so much to share. Pam, tell us what your mom was like before she had Alzheimer's disease. 

 Pam  4:42  

Well, she was my best friend. And she knew me like a book. So there was no lying. No lying to mom. And we used to I lived in California. We lived apart there across the country for a couple of years. But we every day of my adult life, we would talk for at least 30 minutes, a lot of times an hour just about what was going on the people in my life. So talking and sharing ideas and having that kind of conversation that you would have with your best friend happened regularly. And it's ironic what happened to her with the Alzheimer's disease and her symptoms. 

 Virginia 5:29

We were living parallel lives, I always, I kept thinking, this is so not fair. My mom is such a great person, this is not a good way for her to go. And my husband just kept saying, life is not always fair.  Anyway, Pam, you go ahead and start to tell us about what you learned about how to talk to someone with Alzheimer's. 

 Pam 5:51

Well, with mom in particular, and with those clients that I work with the biggest challenges with us, the family members, so my focus is on working with the family members, to help them understand the complexities of the disease. So something that Steve mentioned about giving your loved one time, as we age, it is natural for the brain to shrink. And that means that natural aging actually includes a delayed response. So for those impatient people, guess what, you know, if you have someone in your life that 60 or over, you need to give them a chance to respond. I was talking to someone in my support group, and it's a couple and she's the one who's afflicted with dementia. And I asked her a question, and he answered for her immediately. And I said, “Wait a minute. I wasn't talking to you. I was talking to her. That was her question.”  And she was about to answer because it gave her time. But he wanted to get the answer out. And we live in a world where it's so immediate, and so focused on, you know, instant gratification and being judged. If you're slow. And in reality, you're not slow, your brain is functioning fine. And I think that's one of the biggest mistakes or errors that people make is that they assume if it takes me longer to respond, I must have dementia, I must not be healthy. I there must be something wrong with me. And the answer is no. That's a natural function of aging. And just let the person respond. Now, if they don't respond, guess what? They're going to turn just like she did turn to him and say, “What was the name of the exercise machine we got?” And I said, “She's capable of asking questions. So if she needs your help, guess what she'll ask for it.” So you know, we think about how we approach anyone, you know, who's aging needs to be adjusted, but then with family members? I've heard so many examples. One of my close friends said, “You know, what do you do when they're wrong?” And I said, “Well, what do you mean? What do you mean?” And she said, “Well, mom keeps we're talking about family memories. And she keeps saying that, you know, Bob was there. And I know he wasn't my sister knows he wasn't my brother knows we wasn't. And we keep telling her No, that didn't happen.” And I said, my favorite phrase. “Do you want to be happy? Or do you want to be right?” And the thing that you and I have talked about is the impact of that type of argument on someone specifically with Alzheimer's is that they get sad, because you're angry with them. You're trying to correct them, and they may get angry with you. So you've got a choice. When the conversation is over with what are they going to remember nothing about Uncle Bob being at the event, they're going to remember that they're sad, and they're going to remember that they're angry, and that you were the person that they were angry with, perhaps. And that really does affect their ability to function that is debilitating to them. Did you see that too? 

 Virginia 9:11

Yes, I did. I remember when mom was pointing at a picture saying, “Oh, isn't that a nice picture of my dad?” And it was her husband. I like I had to think twice about how to how to handle that because I of course wanted to correct her. But what good would that have done? 

 Pam 9:33

And I think that's it and I will give you the disclaimer right now. This isn't easy. This is not an easy journey. On top of everything else, because you're having to make financial decisions, medical decisions, personal decisions, emotional decisions. Lots of decisions overwhelm. You're in this situation where now you've got people like me saying okay, you get a step back. Do you want to be happy? Or do you want to be right? And so I also use the phrase frequently. And it's not that simple, that it's important to let it go. Don't be attached to whether somebody is right, whether this is the right behavior, whether, no matter who you're communicating with, it could be in home care services, it could be your care community caregiver, it could be a social worker, it all comes down to look, this is a stressful situation to be in. And we all understand that. So let's take a deep breath. Let's figure out what the solution is to the specific problem that may or may not be occurring, rather than trying to react emotionally and saying, “Well, that's not right. That's not fair. That's not what we told you to do.”  And that's all coming from anger and fear. You know, it's not coming from a place of love. It's coming from, Oh, my gosh, I can't believe this is happening to In my case, my parent, in Steve's case, his wife, there's, it's human to feel fearful. And it's human to be afraid that this person is disappearing right in front of you and it was someone that you love deeply. 

 Virginia 11:12

Oh, exactly. I remember I went one day to visit mom. And she had removed all of the pictures from her walls, and stack them up, and was starting to pack. And she said, “I want to go home.”

And I was at a complete loss as to what to say to her. “You are home!” at which she didn't want to hear because to her it wasn't home to her home was not Whittier, California, it was Ithaca, New York, where she grew up. So I was constantly trying to figure out how to respond to things like that.

 Pam  11:59  

So I hear that one, probably the most frequently, my mom says two things I want to go home if there already have been moved. Or if I had one individual who wanted to go home while she was still in her home. there's a there's a red flag. But it was the easiest way to explain to the family. It's like,  “so if she's home, what do you suppose home means?” And so that's my first question. When you think about what home is just stop for a second. And when I think of home, I think of warmth, familiarity. I know everybody, I feel safe, I'm comfortable, I can relax. Well guess what, when they're very much inside that body. With a deteriorating brain, that person is still there. And so that's one of the communications tips is not to talk over somebody because they are actually still in that body. But the concept of home, they're asking, “I want my familiarity back, I want to feel comfortable again, I want to feel safe again.” And guess what, we can't do that for them. So home does not mean a physical building. And let's be honest, when we do move our loved one into a care community or a group home or you know, any type of community where they can be assisted. We bring all their stuff with them. Because we think their stuff is important to them. And depending on what stage they're at, they don't know what that stuff is just like the photo. Right? It's maybe vaguely familiar, and at some point in time will be totally unfamiliar. And again, what that does is it makes us feel better when we put all that stuff out there. We feel like we're making an effort, we're feel like we're trying to make it feel like home to us, not to them. You know, and so we get that confused as to who were really doing things for. So that's the first one. 

 Virginia 13:58

So is the best response, something like, “We can pack later. Let's go have ice cream.” 

 Pam 14:06

Redirect. Yes. So redirecting is acknowledging that they've said something and then taking them in a different direction. So exactly what you just said. So what typically what I would say when someone is in that situation is,  “You know, you're absolutely right. You know, I get it. Let's you know, pack later or let's worry about this later. I know that they're having ice cream right now. And I really would love some ice cream.” So they're always going to want to make you happy. So redirecting for something you want and emphasizing that will as well, absolutely. They'll be like, Oh, well my mother would have done anything for me no till the day she died. So if I said I wanted ice cream, I could easily redirect her. Although we didn't have these conversations. She went non-vocal eight years before she actually passed. 

 Virginia 14:55

I did not experience that with my mom. She could still talk.  Steve, could your wife Patty complete sentences, long sentences? Could she communicate in sentences? 

 Steve 15:05

Yeah, Patty, up until maybe six months before she passed, she was still talking or responding to things. But they weren't complete sentences. So I think that kind of went away a year and a half before. And she would almost I don't know, if you experienced this to Pam, she would carry a thought and then stop as if she'd forgotten what she'd started to speak of that. And then I just wait, hoping that she would find a process. Or if she looked at me and said, you know, like, she was hunting for something, then I'd say, “Are you are you referring to this?” And that sometimes was the help she was looking for. 

 Pam  15:47 

Yeah, that's interesting, because with my mom and Alzheimer's is such a bizarre disease. So I do want to let your audience know that it's very individual. So just because my mom went non-vocal, you know, seven or eight years prior to her passing, everybody has a different experience, because we can't control where the amyloid plaques and tau proteins, amplify their growth amplifies and creates the plaques that prevent the synapses from working. So they actually kills the neurons, and then that part of the brain no longer can function. And so that determines, and typically, when you define Alzheimer's, they talk more about not being able to do tasks. So if you told someone, one of the Alzheimer's, the MMSE, the Mini Memory State Exam, says to pick up a piece of paper, fold it in half, fold in half again, move it from your right hand to your left hand, put it on the floor. And that if you can't follow that task, then that's where there's there starting to be a disconnect there. So it can affect, you know, many different functions of the body in the brain. So it is very unique. 

 Virginia 17:00

Right!

 Steve 17:01

That's definitely the case. And in our experience in our Men’s group, it's each story has some similarities. And there's often, you know, experiences to pass on, but when it happens, and how it happens is always appears to be unique. It's a journey that you're on. 

 Virginia 17:18

Yeah, everybody's journey is different. We experience same things at different times. But it really is a different journey. 

 Pam 17:26

Can we talk about showers? Yeah, we went through that one.

 Virginia 17:28

Absolutely.

 Pam  17:33  

Oh, my gosh, I think everybody goes through it. So I just had a client, reach out to me. And so there's two, two parts of the story. But one is, he's a helicopter, child, adult child. So he goes and visits her every day. He interrupts her day sees her then he leaves and so there's a whole other thing about that. But he said, “Well, Mom, you know, needed a shower, you know, and had to have, you know, want to have her shower. And I said, “How often does she shower?” “Well, she should shower every day.” And I said, “So is that what you told the care community?” And he said, “Yep.” And I said, “No.” I said, “What is she doing? I mean, do they have her doing hard labor? Do they have her doing something that she's perspiring a lot, so you know, or that she's gotten her hands dirty, you can wash her hands.” So my tip to your audience is please don't argue with them about showers. So the most they need to be bathed or showered is twice a week. And you do not have to stuffed them in a shower contained area. In order for them to take a shower. You can use a wet washcloth they didn't military during World War Two, we can do it now. So there's it's get the good parts clean and that's about it. And you know the other aspect of that if you do want it to be do want them to go take a shower, make sure that you stay with them and play some quiet music in the shower in the bathroom, light candles or have some sort of aroma therapy is very powerful. So you know maybe it's a lavender candles can be a little dicey with people with Alzheimer's that in most work, they don't mess with fire, but you don't know back to the uniqueness of the disease. So the important thing would be to make it smell nice. Make it comfortable. Have it's really soft, cushy towels, make it a spa experience for them. And then they're much more likely to participate. Did you see that? Or did you try it?

 Virginia 19:33 

Our facility used to print up winning spa tickets.

 Pam  19:42  

Did you did you throw your name in the hat?

 Virginia  19:44  

“You won a spa treatment. Includes a shower.” You know I remember difficulties with brush, she didn't want to brush her teeth.  So my caregiver said, “Go to the drugstore and get bubblegum flavored toothpaste.” Okay, and it worked for a while, and so did holding a basin up to her rather than having her hang over the sink.  You just have to figure things out as you go. But that worked for us. 

 Pam  20:23  

So the thing about the sink is a visual thing. So eyesight goes, and the brain can't process with Alzheimer's, it's the brain can't process depth as well. And so for her, it was a bowl, it could have been a hole to her. And so and then the other thing with brushing your teeth, is that you have to keep in mind that this is again, not something that you want to do it, you want to keep their teeth healthy, especially for gum disease and that type of thing. But you also have to realize that is this something that has to be done right then and there, you don't have to force them to brush their teeth every morning at eight o'clock. brush their teeth at noon, brush their teeth at two, you know, whenever they're in a good mood, make it a game, you know, that's really an important thing, too, is to make everything fun. 

 Virginia  21:21  

Exactly. Um, you commented in your book about the look that should be on your face, when you walk in for a visit. How important is that? 

 Pam 21:34

So it's when you visit. First of all, don't visit if you've had a really long day, you're frustrated, you're angry, you're easily triggered.  You don't have to visit every day. And if you're going to visit when you're irritated or out of sorts, so worse kind of visit, because they pick up on that. And you're doing it because, “Oh, it's Wednesday, I have to go visit Mom.” And then you feel all that guilt, because you really shouldn't feel like you have to do it. But it's one more thing on your plate that day. And so give yourself some grace, and just don't go.  Figure out when you're going to go another time, let it go. This is not, you know, you don't win any medals for finishing the race with the most number of visits. 

 Virginia 22:19

If your mom wasn't speaking, how did you know what she wanted? 

 Pam  22:27  

Well, um, it wasn't a matter of what she wanted, it was a matter of what we did with her more than anything. So you know, she was waited on hand and foot basically. So and then she was on a very regimented schedule for toileting, and that type of thing and food. So when you mentioned about visiting, though, when you greet someone, and first of all, don't bring the whole family because that's overwhelming to everybody. No matter where you are, whether they live it live at home, whether they're in a care community or a group home, don't inundate them with people. And then when you introduce yourself go at eye level. And you'll see this in a lot of dementia care guides. Go at eye level and then introduce yourself as if they don't know who you are. In other words, “Hi, Mom, it's Pam, your daughter, how are you today?” And you can ask them how they are I mean, they're not going to respond, or my mom wouldn't respond, yours might, you know, and then you might end up with them having a bad day, in which point in time, you know, they might say, “Oh, this place is terrible. I want to go home!” you know, they might be grumpy, you know if they are vocal. And again, your best friend is knowing 10 or 12 redirect responses. “Well, I'm sorry to hear that you're feeling that way today.” And then rather than asking him, “What would you like to do?” because now you've opened the door, and they don't know, they don't know what they want to do. So say, “Well, let's go over here and either have ice cream. Let's go check out the pool table. Let's, you know….”  Whatever you, “You know what, let's go, let's go see the you know what crafts are happening. Or let's go look at the newspaper or let's go plant a tree or a seed.” Whatever you can come up with your current situation  gets them out of that grumpy mode. And, and really does help them feel better about both themselves and your visit. 

 Steve 24:24

I thought you were talking about something really interesting about the interaction with at any point in time, whether it's in a community or at home, wherever it might be. And one of the things I hear from the guys on our group and from other people is I'm not getting any reaction. I don't know how to get a reaction. I don't know. And I think you were kind of alluding to that. It's situational.  And so maybe you might talk about that, Pam, it's like these guys are like, you know, there's no communication. They don't know what to do and they feel lost.

Pam  25:00  

There's a couple of ways to look at this. One of the frustrations for them is that they want the interaction they used to have and that's not going to happen. So there's some acceptance and understanding that, you know, this is not a good ending to this story. But, you know, I want some sort of feedback. My mom did not say my name for three years, and I walked in one day, and she said, “Pammy!” And I didn't know whether to burst into tears, or hug her or what, so I did all of the above. So as far as get giving them, you know, advice on, on how to get them to engage, I would say, “Go back to the time when they were between the ages of 20 and 35. We have found that during that period, that's most of the time when we kick off a majority of our big events. We either finish college, we, you know, get a dog, we get a husband or a wife, we have kids, we get a job, you know, all of those things start to happen. And so, if there's, I know, one support group, they were talking about toys, and somehow they ended up on World War Two, and that just took them off in a different direction. So as long as the individual is not trying to put too much of a frame around the interaction, and allows the individual to go in whatever direction, I will tell you, pets are huge for engagement. So whether you bring in someone's dog or cat, if the community allows it, dogs are usually allowed without a problem, cats who can't catch if they get away but animals and my mom loved the baby doll. So bringing baby dolls are huge with the women for some reason. And so the stuffed animals that vibrate, you know, allowing her to pet something is big. If she they like to garden, you know, bringing a gardening tool and some seeds and some dirt in a pot, or tell the activities director you need those supplies, and they'll make it happen for you. But anything that aligns with their hobbies during the ages of 20 and 35 might work better than sitting there trying to talk about current events, or whether the Suns lost to the Bulls or you know what, I have no idea what they're trying to talk to them about. But the worst thing they can do is say, do you lead a sentence with, “Do you remember?” Because that's typically the way we ask questions is, “Do you remember?” You know, and so my dad would say to my mom, “Do you remember that this is your dad or your mom?” And I said, “Why don't we just leave the, “Do you remember part off and just say, look, this is you know, whatever, you know, this is Alan. And you know, that's your dad.”  And my mom used to pick up the photos and kiss them because she knew who they were. So that would be my advice to you. 

 Virginia 28:01

I know it's getting close to the time we need to wrap up. Pam, can you leave us with one of the most important things that you can think of that we need to remember.

 Pam  28:16  

To me there has to be a focus on moments of joy. Every moment counts, and it needs to be a joyful happy one. So no matter what goes on, if you can poke fun at it, like when my mom's seven pairs of pants disappeared. I just joked with her and she was still in there. Like she would kind of like hit her hand on her head like, “Oh my god, I can't believe that happened.”  So she was still able to understand certain things. And we would just laugh and be okay, what what's Plan B. So keeping everything light, and realizing These are your moments, they could be your last moments we never know none of us know when those last moments are. So filling your life and theirs with joy. Instead of trying to explain things to them or trying to get them to do something that is really in the grand scheme of things not going to matter. And then so moments of joy would be focused on moments of joy is my biggest takeaway. And then related to that is please avoid correcting them. There's no reason to try to be right. There's no reason to try to correct them, you are not going to win that at all. And all you're going to do is create a lot of emotional damage. And your relationship is the most important thing that you need to preserve. And the more that you try to be right instead of be happy, the less that relationship is going to succeed. 

 Virginia 29:46

I love both of those final thoughts. They're both really important and very, very true. Well, thank you so much, Pam for joining us today. We love it that you spent time with us.  I want to remind our listeners that they can contact Pam Ostrowski at her business that guides families through this journey. And they can Google, Alzheimer’s Family Consulting. And also I highly recommend her book. I think, Pam, you were calling it a guidebook. And I think that's, 

 Pam 30:19

Yeah, it's a topical reference guide or a guidebook. “It's not that simple. Helping families navigate the Alzheimer's journey”, and it's only on Amazon. It has 77 five star reviews. Sold over 1000 copies in six months. 

 Virginia 30:32

It's the best thing I've read so far. And I'm hoping that you'll come back again and talk to us about more topics. 

 Pam 30:42

Oh, absolutely. I would love to do that. Thank you both. I appreciate it. Virginia and Steve, it was a pleasure talking with you both.

 Virginia  30:49  

We did. And for our listeners. Please join us again soon on Spotlight on Care. Thank you.

 Steve  30:58  

Spotlight on Care is produced by the University of California Irvine Institute for Memory Impairments and Neurological Disorders. UCI MIND.  Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu

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