In this episode, Steve and Virginia interview Kim Bailey, MS, Gerontology who is the Education and Programs Specialist at Alzheimer's Orange County. She provides tips for getting the most out of doctor visits for loved ones with dementia. Kim also discusses her person-centered approach to medication management. For more information about the resources at Alzheimer's Orange County, visit: www.alzoc.org or call the help line at 844-373-4400. What would like to hear about next? Email us at [email protected]
Steve O'Leary 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 Naeve 0:23
Hello, and welcome to Spotlight on Care. I'm Virginia Naeve. And I'm here with my co-host, Steve O'Leary. Today, our special guest is going to talk about some helpful information regarding doctor visits and medication management for your loved one with dementia.
Virginia Naeve 0:43
Since both Steve and I have personal experience in caregiving, we like to share something we've learned before we introduce our guest. So Steve, do you have any helpful tips regarding doctor visits and medication management that you learned when you took care of your wife, Patty?
Steve O'Leary 1:03
Yeah Virginia that's always an interesting challenge you know, I think of the doctor visits as an opportunity to kind of reinforce something. I was very blessed to have Patty, accept her disease. I know that some of our listeners are dealing with the issue about acceptance and denial, and fortunately early diagnosis I think played a role. But I think also the doctor visits, that we continue to have on a regular basis, with a neurologist, and also the clinical trials we were participating in I think reinforced the whole role of doctor visits, So for me, it was, hey, we have another doctor visit coming up, and, and Patty would go, okay, where, and fortunately we moved down to UCI MIND from UCLA and that made life a lot easier. But she sort of looked forward to these visits. And I think it also has something to do with the quality of the physician and the knowledge that they have of dealing with the disease. We found even when she was going to visit. She had some other internal issues and she was dealing with, with her GP and with a another specialty doctor and they knew that she had the disease because she'd been upfront about it, and so they had that kind of cautionary helpful hand, and that would be a piece of advice I would offer is don't be afraid to share your wife or your loved one’s issues with any physician prior to going into see them, it's really a value to the doctor. I think they understand, oh okay now I need to apply this kind of an approach to it. So for me, being upfront about doctor visits talking about them, seeing it as a resource and even reinforcing it with Patty, even if she wouldn't remember, I would go over, “hey, here's what we learned today. Here's why that was a value”, so I don't know if it helped every time but it just seemed like we made going to the doctor part of dealing with the disease, and I think that that helped her and certainly helped me.
Thank you Steve. I remember so many times being frustrated after taking mom to a doctor. I never took her without a good reason for being there. So when the doctor would come in and look at her and ask her what the problem was, I knew we were going to have difficulty. I knew he was trying to be polite. But what I wanted him to understand was why we were there. And he would say, “Well, hello, how are you, Helen?” And she would say, “just fine. Thank you. How are you?” That's when I knew I've got to get his attention. I've got to get his eyes. Anyway, that's my story.
Our guest today can talk about anything relating to dementia caregiving, and I'm sure we will have her back many times to talk about various topics. Her name is Kim Bailey. Kim has a Master of Science degree in gerontology and has worked in the field for 30 years. She's currently the program and Education Specialist with Alzheimer's Orange County. In the past, Kim was the Director of Community Relations and development for UCI ADRC. Along with being a professional in the field, and previously an adjunct faculty college professor, Kim has also been a personal in home caregiver to a woman with Alzheimer's disease. She knows where of she speaks. Welcome Kim. It's great to have you here.
Kim Bailey 5:11
Thank you, Virginia, I'm so pleased to be here on the show with you and Steve, and to have a chance to chat with all of the viewers.
Virginia Naeve 5:20
Well, I know that you're going to be giving us really really good information. Let's start with preparation for the doctor appointment. Let's say your loved one with Alzheimer's or other dementia has a medical issue and needs to be seen by a physician. It's fairly straightforward if the person you're caring for doesn't have dementia, but it can be quite the ordeal if they do. Kim, help us understand the preparation for that doctor appointment.
Kim Bailey 5:50
Yeah, preparation is critical, especially in today's healthcare environment. Because as we all know, we have to really maximize the limited time that we have available in that office. I understand that nowadays, the average length of a visit to the doctor's office is about 10 minutes.
Kim Bailey 5:56
So while that can vary widely, we want to really make sure that we make the most of our time with doctors. So I always advise that we make a list of our top concerns before we go in. Even if it's just jotting down, let's say three top priorities on a Post-it note. That way you avoid that whole parking lot syndrome where you get out of the office and you're out in the parking lot getting in your car and you know, say, “oh my gosh, I totally forgot to ask the doctor about this important matter.”
Virginia Naeve 6:54
I had a lot of those.
Kim Bailey 6:56
Yeah, absolutely. We I think we all get a little nervous. We get that white coat syndrome in the doctor's office. So do make that list of questions and concerns those top questions and concern. And then also, keeping a record of changes I think can be very helpful when you're caring for someone with dementia. Having a list of all medications and that includes over the counter supplements, etc. and making sure that that's always kept up to date. Having that with you, scheduling appointments for your loved one at what you consider to be their best time of day.
Virginia Naeve 7:42
I hadn't thought about that. But that's really a good idea. Some people are not morning people, they do better in the afternoon and some are completely opposite.
Kim Bailey 7:50
Absolutely. For a lot of people with dementia, they're really more alert and lucid in the morning, late morning. As the day wears on, and they get closer to the late afternoon, they might go into sundowning. So take that into consideration.
Virginia Naeve 8:10
Kim Bailey 8:12
Make sure that your loved one has their hearing aids in if they wear hearing aids, wearing their glasses. What else can you do to prepare? Expect resistance. Most people don't want to go to the doctor. They didn't want to leave the house. They're going to probably tell you there's nothing wrong with them.
Virginia Naeve 8:31
Oh, yeah. Oh, yeah. I had a lot of, “why are we going to the doctor?”
Kim Bailey 8:36
Yeah. And keep your response to that limited, brief and low key. Something like, “It's just a checkup. And afterwards, we can go to lunch at your favorite restaurant.”
Virginia Naeve 8:50
Kim Bailey 8:50
Those are just a few tips.
Virginia Naeve 8:53
Oh,I know, it sounds easy to take someone to the doctor. But with dementia. It's just, it's got its complications. So you've arrived and you're at the doctor's office. And you check in and you're told to have a seat. Okay, we all know that waiting is just part of it.
Kim Bailey 9:15
Virginia Naeve 9:15
Do you have any suggestions about making the waiting room experience less painful if your loved one really doesn't want to be there?
Kim Bailey 9:23
Right. And as we said they generally don't. So bring along something to keep them occupied. I used to bring, I had a little packet of my friend's favorite photos.
Virginia Naeve 9:41
Kim Bailey 9:42
Actually, they were her wedding photos. And we had a mini album with her wedding photos in it. And so we would pour over those while we were waiting. And she would tell me all about her wedding day. Which, which, of course I'd heard, you know, 100 times before. But
Virginia Naeve 9:59
Of course, every time was the first time.
Kim Bailey 10:01
Everytime was the first time and it was a favorite activity. Or you can bring a little snack. I'm not sure you can do that now with COVID.
Virginia Naeve 10:13
Oh, maybe not.
Kim Bailey 10:14
Maybe not. But even if you have like a little puzzle or something that they can do to distract them try to bring something that's a distraction.
Virginia Naeve 10:26
Yeah, I hadn't thought about that when I was caregiving for mom. But that would have been a really good idea.
Kim Bailey 10:31
Virginia Naeve 10:32
You are called in and ushered back to the exam room. And you are again, waiting. Nurse comes in to take blood pressure, temperature. And I remember at that point, always praying that they were not going to ask for a urine sample. They did a few times and it's not easy. But anyway, the doctor enters. What advice do you have to make sure the appointment goes well, since Of course, their time is now so limited.
Kim Bailey 11:08
If you have the type of relationship with a physician that permits you to communicate in advance by some mechanism, such as email. That is great, because you can get the gist of the concern, the reason for the visit across to him or her in advance. Alzheimer's Orange County also has a tracking document where you track changes and put your top concerns into that document. If you have something like that they could email in advance that would be great. You're not able to do that with all physicians, but anything you can convey in advance is fantastic but you know, that doesn't always work. But if you can do that, I think that that that's really great. And I wanted to mention too, Virginia, about the urine sample.
Virginia Naeve 12:06
Kim Bailey 12:07
My person's PCP gave me the urine, the cup, the specimen cup at every visit, and I was able to collect that at home, and bring, bring it with me.
Virginia Naeve 12:24
Oh, that would have been helpful.
Kim Bailey 12:25
Yeah. And that can, because it just didn't work in the doctor's office, she just was not able to do that. So I wanted to mention that too.
Virginia Naeve 12:35
So I remember one time, it just wasn't working. And they kind of gave up. And I didn’t know what else to do.
I want you to tell your story about how you communicated in the exam room with the doctor, because I think it's wonderful.
Kim Bailey 12:49
Okay, so you know, the doctor, either, they tend to do one of two things, they either start talking to the patient directly, which is what you were talking about earlier, or they sometimes just talk to the caregiver, which is awful also, because I mean, when they talk to the patient, the patient isn’t able to respond appropriately. So that's bad, right? And when they talk to you, then the patient gets mad. So you're sort of in a really bad situation, no matter how you look at it. But, in our case, the doctor would talk directly to the patient. And she would give false answers. But what I did was I tended to stand either stand behind her, or be seated behind her with my arm across her shoulder. Okay. And so when he would ask a question, like, have you had any falls lately? She would answer No. And I would hold up, like two fingers behind her.
Virginia Naeve 13:48
Perfect. And he saw you because you were right behind her.
Kim Bailey 13:52
Right, I was either, as I said, standing behind her, or I had my arm across her shoulders, and I could off to the side, because she really had no peripheral vision at that point, okay. So I would do whatever I could to mimic or pantomime answers, without her seeing. And the reason that's so important is when you correct them outright. And I have had to do that sometimes, like in the ER, because sometimes it's just unavoidable. What you do is you just destroy their dignity. And if you know, and it's this, we want to be as open and honest as possible, while maintaining their dignity. And we are in the doctor's office, we have to get these issues explained correctly, but we have to do everything we can to preserve their dignity at the same time. So I just had, I just found my, that was the best way for me to try and do that. She had absolutely no wherewithal. I mean, I had her in the ER one time and she had a gaping head wound. And the doctor was asking her questions, and she said, “I don't know why I'm here. Ask her. She's the reason I'm here.” You know, and she was very indignant. And you know, I mean, it's just, this is what this disease does to people. They're just so unaware. So really very sad.
Virginia Naeve 15:16
Completely. Yeah. And it's tough…
Kim Bailey 15:20
And that was from a fall, by the way, just in case, the listeners are thinking, How did she get a gaping head wound? It was unfortunately from a fall.
Virginia Naeve 15:29
Of course, it was
Kim Bailey 15:31
She forgot about the fall. Within minutes, you know, she had no idea why she was in the ambulance or in the hospital. And blamed me.
Virginia Naeve 15:42
Exactly. And sometimes I wonder, you know, if the doctors really get a lot of these situations,
Kim Bailey 15:49
They don't and neither do the hospital personnel, you know, and..
Virginia Naeve 15:54
100% agree. Yeah.
Kim Bailey 15:55
So, but we do what we can with training.
Virginia Naeve 15:59
Did you take a note pad with you for taking notes?
Kim Bailey 16:05
Yes. Always take notes, or even record the sessions.
Virginia Naeve 16:11
That's an idea.
Kim Bailey 16:13
Yeah, on your cell phone because and you just tell doctors so they don't become defensive. And they should invite that because if you don't understand what they're saying when they're speaking doctor-ese. You know, it's high level and for a lay person and you've just keep asking questions until you understand and record it all.
Virginia Naeve 16:37
Okay, we're going to go on now to medication management issues. I first realized that my mom could not be trusted to manage medications by herself when I went to visit her and took a look at her seven days sample pill pack of Aricept, you know with the bubbles and you pop the pill out. Monday, Tuesday, whatever it was, that the doctor had given her the day before. And the pill pack was empty. I said…..
Kim Bailey 17:11
Virginia Naeve 17:12
Yeah. I said, “Mom, where, where are the pills? She looked at me and she said, “I took them.” And I went, Oh my god, I went to I went into a panic. And I, I called the doctor's office. And they found the doctor who was not in that day, but they found him. And he called me back. And I said, “Am I supposed to run her to the emergency room?” And he said, “No, no, but she might not feel very good tonight.” And I thought, Okay, so this isn't working, you know, this is her, she needs a thyroid pill everyday, this just isn't working. So tell us how best to handle medications.
Kim Bailey 18:03
So, this needs to be regarded as a safety issue. And so unfortunately, you know, we deal with this all the time with many of our families. And caregivers are often very reluctant to take this job away from their loved ones who have been doing this independently for years. But it must be done. I mean, we have to monitor their medications, because it's all too easy to miss a dose or take too many, as was the case with your mother. And so it just has to be done. And, you know, the first thing that needs to be done is to use pill dispensers.
Virginia Naeve 18:56
Kim Bailey 18:57
The Monday, Tuesday, Wednesday, you know, so that you can clearly see what you're doing, you have to have those great lists. You know, by the way, make sure all of the medications that your loved one is taking are needed, and that they don't conflict with one another. I mean, we've been telling people for 100 years, you know, take all everything to the doctor, if necessary, in a paper bag, everything and make sure that all these drugs are necessary.
Virginia Naeve 19:29
Kim Bailey 19:30
They're not conflicting with one another. And then keep these medications up to date and keep that list maintained. Keep them in pill dispensers. And if necessary, high dose dispensers, put them up out of reach. Put them in a locked cabinet. You know, it's gonna be an unpopular decision, perhaps, but we have to make unpopular decisions in the interest of keeping our loved ones safe. And when….
Virginia Naeve 20:01
Kim Bailey 20:02
Yeah. And I mean, it's like the driving issue, it's like people get mad. But we have to weigh on the side of safety.
Virginia Naeve 20:10
it's a safety issue.
Kim Bailey 20:12
Yeah, and when we are giving pills to our loved one. And we know, we think we're going to encounter resistance, we want to make sure we give what we call the life sustaining medications first, in case they just refuse, start to refuse.
Virginia Naeve 20:31
Kim Bailey 20:32
You know, like the heart medication
Virginia Naeve 20:35
Kim Bailey 20:36
You know, things that they are essential, like blood thinners or whatever. I'm not a doctor, by the way. So here's my disclaimer, this medication advice, you know. Yeah. And then if they don't, if they're really being resistant, sometimes you can hide the pills or crushed them into food, but it's critical that we find out from the doctor or a pharmacist if the pills are intended to be crushed, because sometimes some you cannot. Okay. Yeah, sometimes it's really imperative that you find out whether certain pills can and they can't. The important message you want to get across is that you have to get these pills away from people who are no longer competent to take their own medication.
Virginia Naeve 21:31
You mentioned how you approach someone and what kind of attitude you go into the pill taking moment.
Kim Bailey 21:42
Virginia Naeve 21:43
What do you suggest?
Kim Bailey 19:25
Yeah, well, like standing. I'll tell you what you should not do first. Standing over someone, you know, hovering over them in an authoritarian stance, and saying, “All right, it's time to take your pills. Let's not make this a big deal.”
Virginia Naeve 22:06
Not a good idea. give orders
Kim Bailey 22:09
Right. You know, coming alongside someone sitting down beside them, maybe bring your own pills over and say, “Honey, it's time for us to take our pills”, and that might work, but your approach should be low key. And you know, your body language should be open and, you know, speak slowly and clearly with a gentle voice and a gentle affect about you. If there have, have them ready, have the water ready.
Virginia Naeve 22:47
Kim Bailey 22:48
And in some cases, when we have resistance, a note from the doctor is very effective.
Virginia Naeve 22:58
Okay, so you can say, Oh, the doc, look, look here. The doctor wrote you a note and said, You need to do this.
Kim Bailey 23:05
Yeah, you can use that note, Virginia, when they say to you, which they often do, “I don't need any pills. There's nothing wrong with me.”
Virginia Naeve 23:12
Oh, absolutely. My mom was very proud of the fact.
Kim Bailey 23:14
I say well, you are very healthy because you never want to say they're wrong. So you can agree with them and say, “you know, you're right, you're very healthy. Nevertheless, the doctor says that you need these pills for your blood pressure. Look, I've got a note from him.” So I mean, it's so hard being a caregiver, you know, it is the most difficult job in the world.
Virginia Naeve 23:42
It’s tough and every day can be different.
Kim Bailey 23:44
But the more tools in your tool belt, I always say the more tools in your tool belt, the better, you know, equipped you're going to be and sometimes a tool, like a note, you know, from the physician
Virginia Naeve 23:56
I was thinking maybe even a note from a grandchild.
Kim Bailey 23:58
Oh, a favorite grandchild. That's a great idea.
Virginia Naeve 24:01
a favorite grandchild.
Kim Bailey 24:03
That's a great idea of Virginia. Yeah.
Virginia Naeve 24:05
Right, and just put it right in front of them and say now it's fine. But when you think about it, that poor caregiver, this has to happen every day.
Kim Bailey 24:14
Yeah. It's that's really tough. It's really tough. That's why, you know, really less is best. I mean, that's why really a great geriatrician will figure out if all of these pills are really necessary.
Virginia Naeve 24:29
Kim Bailey 24:30
Virginia Naeve 24:31
So when I was thinking about this whole topic the other day, I was reminded that it's not just a regular doctor that you go see with somebody, okay, there's the dentist. There's the eye doctor, there's the doctor regarding hearing aids. My mom broke her glasses one day. I didn't have any idea who her eye doctor was. And she couldn't tell me. And then I found out that you can't just go get a new pair of prescription glasses, because the prescriptions expire one to two years generally in most states, so I was stuck with having to take her to the eye doctor and having them put the big machines in front of her face. It was a mess. Do you have any advice regarding that type of a visit?
Kim Bailey 25:27
I do. I do. We actually add Alzheimer's Orange County, we have identified dentists and other types of services that are thought to be more dementia friendly.
Virginia Naeve 25:42
Oh, that's excellent.
Kim Bailey 25:43
And so listeners can call our helpline to get those referrals they can consult through our website, or call the helpline at 1-844-373-4400
Virginia Naeve 26:02
Lovely. Yes, because you have lots of good information. I remember hiring a dentist, a mobile dentist to come to the assisted living facility where my mom was, and it looked pretty scary, but you know what she did pretty well.
Kim Bailey 26:21
And of course, she was home Virginia. So you know, just being in her home setting, you know, half the problem with going out to the doctor or going out to the dentist or the eye doctor is just going out. You know, they get so fearful of leaving the comfort zone. So anytime you can have a practitioner come to them. That's half the battle. It really is. And then you know, just again with the approach and the body language and helping people to stay calm and distracting them with you know, “as soon as this is over, we're going to have some ice cream” or
Virginia Naeve 27:03
Yes, let’s go have lunch
Kim Bailey 27:07
or just offering them something you know, they love you know
Virginia Naeve 27:11
Kim Bailey 27:07
Just adopting sort of a person centered approach.
Virginia Naeve 27:15
Yes, you have to be aware of what you know makes your loved one comfortable and happy again. And if they're anything like my mom, it didn't take her long to forget what had happened during that appointment.
Kim Bailey 27:25
Luckily and that's the positive side of this whole ordeal. Absolutely.
Virginia Naeve 27:34
Okay, well we can't really thank you enough for being with us today for sharing this really helpful information. And I must say that if I read your entire bio at the beginning, we wouldn't have had time for this interview. So, thank you for all of your experience and for all of your advice. And I hope we can call you again for some info on topics we need to know about and we hope you'll come back soon.
Kim Bailey 28:04
Oh, I'd love to come back and visit with you again Virginia and Steve. Sure.
Virginia Naeve 28:09
And to our audience. Thank you for listening today. And please join us again soon on Spotlight on Care.
Steve O'Leary 28:19
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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