Caring for someone with dementia

This week on Sage Aging

Caring for a loved one with dementia comes with its unique challenges. Every situation is different and finding the right resources can be challenging. This week I spoke with Laura Banner of Compassionate Education. I originally connected with Laura online and was really impressed by her passion for educating caregivers. She truly has a heart for people and especially for those with cognitive impairment.

My favorite takeaway this week goes back to a message that Suzanne White also brought to us in episode 15. To put it simply, that message is that self care on the part of a caregiver is vital. We all know that that is important because, after all, who will care for your loved one if something happens to you? But it is also the easiest thing to brush to the side. Laura recommends getting yourself and your loved one on a schedule. A predictable day is better for everyone and though there will always be times that we must change course, a planned day leads to less stress and more opportunity for self care.

I hope you enjoy the conversation. If reading is more your style scroll down the page for a complete transcript of the interview.

Talk next week!

Show Notes

Caring for a loved one who is aging can be difficult and overwhelming. Caring for a loved one who suffers from dementia or Alzheimer’s takes that stress to a completely different level. Having said that, you can have a successful and positive caregiving experience with the right information and tools at your disposal. In this episode Laura Banner of Compassionate education chat about finding resources and the importance of caregiver self-care.

Links & Resources we mentioned
Transcript
Closed Captioning

Sage Aging episode 17

Guest Laura Banner of Compassionate Education

Recorded July 2020

 

Liz Craven  00:00

Support for this episode of Sage Aging comes from PolkElderCare Guide. Designed with families in mind. Polk ElderCare Guide gives you the tools and education necessary to make quality choices about senior care and living options in Polk County, Florida. available in both English and Spanish, you can view the guides and much more online at polkeldercare.com.

 

Liz Craven  00:47

Caring for a loved one with Alzheimer’s or dementia comes with its unique challenges. Every situation is different and finding the right resources can be challenging as a caregiver Where do you begin your search for information? How do you provide good care for your loved one without sacrificing self care? If you’re caring for someone who suffers from Alzheimer’s or dementia, or know someone who is, then you’re in the right place, and this is the podcast episode for you.

 

Liz Craven  01:31

Hi, everyone and welcome back to the Sage Aging podcast. I’m your host Liz Craven. If you’re joining us for the first time, welcome. I’m really glad you’re here. In this podcast we’ll introduce you to experts in the field of aging will provide you with the information you need to make daily life easier. Like all of you, I was a family caregiver myself and as a publisher of a senior resource guide. I understand how hard it is to come by good information. And I know that sometimes you just need to hear that everything will be okay. Our weekly conversations with industry professionals will leave you feeling confident that you’re not alone and empowered to celebrate and enjoy the aging and caregiving journey. Are you ready? Hit subscribe now. Let’s get started.

 

Liz Craven  02:25

Welcome back! This is Episode 17 of the sage aging podcast and I’m so glad you’re here. We have a great episode in store for you today. So grab a cup of coffee or a tall cool glass of lemonade and sit back and relax for a bit while you listen. It’s really important for you to take a few minutes for yourself each day. And remember that self care is not selfish. Caring for a loved one who is aging can be difficult and overwhelming. Caring for a loved one who suffers from dementia or else timers takes that stress to a completely different level. Having said that, you can have a successful and positive caregiving experience with the right information and tools at your disposal. My guest today is Laura Banner, a neurology and dimension nurse practitioner and dementia educator. Through her practice and caring for dementia patients and their families, Laura noticed a rapidly increasing number of people with dementia and found educational resources to point them to in short supply. So she created Compassionate Education to fill the gap. Now she’s going to tell you more about that in a bit. But in the meantime, to learn more about Laura and all that she does, be sure to check out the links and resources section of the show notes for this episode, which can be found in the blog post for Episode 17 at SageAging.us. Or you can find the show notes in your favorite podcast app. Welcome to the show, Laura. Thank you so much for joining me today.

 

Laura Banner  04:03

Oh, thank you so much for inviting me, Liz. I’m glad to be here.

 

Liz Craven  04:07

Well, today’s topic is such an important one. So many families mine included, have been touched by dementia and Alzheimer’s. As a matter of fact, my husband’s grandmother, her Alzheimer’s was the inspiration for the Polk ElderCare Guide, which is a resource guide that we’ve been publishing for more than 26 years now. And like you, Laura, our experiences showed us that there needed to be better access to information for older adults and their families. It’s something that I think is prevalent anywhere you go. So tell me more about your situation and what brought you to create Compassionate Education.

 

Laura Banner  04:47

I would love to thank you for asking. So as you mentioned, I am a neurology nurse practitioner. And when I started in neurology, I started with general neurology. I started in the hospital setting, eventually moving into the clinic setting and seeing patients on an outpatient basis. And I see patients with every type of neurologic disorder from MS, ALS and all types of dementia as well as your chronic migraines and epilepsy, you name it. If it’s neurologic, I go ahead and I treat those patients. But what I found was I had a special place in my heart for the dementia patients. It certainly was nothing that was planned. It just sort of evolved. Interestingly enough, unfortunately for me, I never had grandparents. I am a daughter of two parents who both come from very large families. Both of my parents are the youngest sibling within their family. So by the time I was born, I didn’t have any grandparents. So as a young child, I never had any introduction to Alzheimer’s or dementia. As my Practice grew, I found myself drawn towards this population. I think what first struck me was that families would come in with their loved one for evaluation. And no matter how much time I had for that particular visit, it was never enough time. And what I noticed was that the families were so uncomfortable asking questions out of respect for their loved one. They didn’t want to say anything that perhaps was embarrassing or could be received by their loved one is demeaning, and as a result, the visit would conclude, and they would leave, and then I would get phone calls after. And the amount of time that I spent in the clinic during the visit was matched, actually, by these phone calls in these emails. And it really brought to my attention that these caregivers need more information. Some of its just reassurance some of its guidance. Some of it’s just helping them understand what the future looks like. Out of that, I developed two different things. The first thing was a support group, I co chair a support group that is now approved by the Alzheimer’s Association. And prior to the current pandemic, we would meet once a month in a physical location. And it was for family members and caregivers, or anyone interested in learning more about dementia, but it was not for the person with the memory impairment. When we had to go ahead and make some modifications because of the current virus situation. We went to an online platform and now we actually meet weekly. The reason that we meet weekly and it was never intended to be a weekly meeting was because the caregivers have that need they need to connect. They are more isolated now more than ever, and there’s so many different changes going on, especially in the population. of dementia that weekly meetings were mandated. So we started with the support group, like I said four years ago, that evolved into my carving a clinic out within my clinic. It’s called the Cognitive Clinic within my general neurology practice, and I have other providers within my practice, but the cognitive domain is really where my passion is. That still didn’t meet the need completely. I have gone to local colleges, I have been guest lectures at both nurse practitioner programs and physician assistant programs. I assist with the medical residents within my organization. I do a lot of education of the general public. And out of that came compassionate education, compassionate education, it has many different facets, as the name would imply education is the mission of compassionate education to disseminate accurate information to anyone who wants to understand more about dementia, out of compassionate education in a need to go ahead and reach more people. I started my Facebook platform and put a lot of focus into Instagram. What started to become apparent to me was that for the population segment that I’m targeting, and I would define that really as the 52, upper 60 year olds, because that age range, you’re either the spouse of someone who has been diagnosed with the type of dementia, or you have siblings, family members, perhaps you’re the caregiver of a parent, an elderly parent who has developed some type of dementia or maybe, perhaps even you are concerned that you have some early cognitive impairment. And although social media as popular as it is, it tends to attract the younger generations. So my target population isn’t usually on Instagram, looking for another avenue to reach the people, the podcast called at the window with dementia was created. And the reason for the name At The Window With Dementia. Because what has happened, and I’m sure you’re aware of this, Liz, is that so many elderly people who are in assisted living or in memory care, they’re in these facilities that right now are not accepting visitors in order to protect them from being contaminated with the COVID-19 virus. So what a lot of the facilities are doing is they are making appointments with family members, and they’re saying you can come to the window and visit your loved one through the window for 2030 minutes, whatever on a scheduled basis. And so that’s how the term at the window with dementia came to be.

 

Liz Craven  11:00

What a terrific story behind the name. I just love that.

 

Laura Banner  11:04

Thank you. So, at the window with dementia is a podcast that I put out every Tuesday I put anywhere from two to three episodes that are short episodes. snippets of information that I feel would be very helpful for someone who is trying to really become immersed in the world of dementia and understand the different facets of it. What we are doing now it’s about ready for the launch is we are developing an educational course actually several courses where people can go in and find the type of course that meets their needs. My goal is to put out quality information from a reputable source that will provide the person interested in getting the information, the information that they need that will be useful, and give them tips how to navigate through this journey as you and I have discussed in the past, which is a difficult journey at best.

 

Liz Craven  12:04

Absolutely. That is probably the single most important thing when you are a caregiver is getting to the point where you know where to look for information. There is a lot of information out there a lot of quality information, there is a lot of quality help and more help than people realize is available for all kinds of things. But beginning the process to find those things is a completely different story. If you don’t know where to look, then all of the wonderful programs in the world won’t help you.

 

Laura Banner  12:39

Absolutely. And it’s so overwhelming. And, you know, what I find is that I made the decision to go into healthcare. That was a deliberate decision that I made. But most caregivers didn’t make that choice. And suddenly all of a sudden they’re they’re in the trenches. They are the expert. They are the eyes and ears for the provider for people like me, we rely on them. So you have the person needing the assistance relying on the caregiver and then you have the healthcare provider such as myself, relying on the caregiver to help us understand what the needs of the person actually are. when something has gone awry, when we need to potentially explore the possibility of infection, Is this normal progression of disease? Or is this some other variable that needs to be identified? You’re right there is a lot of information and true a lot of quality information. If you know how to find it. For me, and for you, it’s easy, but the questions that I get on a ongoing basis from caregivers, they are lost. They are overwhelmed. And I liken that to the fact that I had a health scare about a year and a half ago. I think I’m pretty level headed. I deal with life insurance. Situations on a regular basis. So it takes a lot to really rattle me. But when I was the patient, when someone was giving me bad news, all of a sudden it was like that Charlie Brown, wah, wah wah. I, I didn’t, I couldn’t take it in, I couldn’t process it. I just kept thinking this isn’t happening. And that’s what happens to people when they get this diagnosis. And when they go in for these visits, and you know, they wait 6-12 months for the next visit. And then boom, blink of an eye, it’s over. And they forget to ask all the questions that they wanted. So yes, trying to help people get in touch with the information, which is why I love your guide, because it is a one, you know, one stop location for all that they need. And that’s what caregivers and families are desperately in need of. They just don’t know how to find it. We need to help them. Find it.

 

Liz Craven  15:00

That’s exactly right. Gosh, we have so much in common You and I, the reasons that we do what we do, and the purpose of this podcast and all of the social media and your podcasts and all that you’re doing is because we have a passion for helping people to get to good information that can lead to more quality of life for everybody, not just for the person who is afflicted with dementia or whatever ailment they have, but for the caregiver as well. Because what we know is that if you have the right tools and support in place, then your experience can be a positive one. And you can get to a place where loving on the person who you’re caring for is the most important part of your day and not surviving.

 

Laura Banner  15:50

Absolutely. I had a heartbreaking call earlier this week. First time someone reached out to me this particular person and she recently read Located to Georgia, which is where I live, and didn’t have an established relationship with a healthcare provider came up with one of her parents. And in the course of 30 minutes during our conversation, I don’t think that we spoke for more than two minutes uninterrupted. The interruptions were heartbreaking. It was her assisting her parent to go and wash their hands to assist her parent by putting on a blanket because they appeared cold to assist her parent who by the way, doesn’t even recognize that she is their child any longer. So she cannot call them mom, because it is disorienting to them she has to refer to her mom by her first name. I was I was in awe of her that that’s probably the best way to describe it. So these you know, little snippets of time these two minutes or less that we got. This was a picture or a window into her daily routine. This is what her day looks like 24 seven, and we spoke prior to her sundowning. And so I know just like you because of your husband’s grandmother, that’s when things really get dicey. Unfortunately for her, she was so advanced that I think she needed I put her in touch with a higher level of care than what she thought she needed. Because she needs she needs some assistance as the caregiver. Again, you and me, we would know what to do how to tap into those resources. But she is a professional woman who had no idea where to go, what to ask for, how to make sense of this how to get through the day, and I’m concerned about her as well. Not just her mother, but her right. And caregivers you know, I see them on a regular basis and truth is the person With the memory impairment, their aging process, from a physical standpoint is rather slow. The caregiver between visits, they age tremendously the stress of caregiving, because they are not doing it in a way that maximizes their benefits and allows them quality time with their loved one. It’s taking a huge health toll on the caregiver. And I’m sure you’re aware, but caregivers often die before the person they care for because they themselves are under such stress and neglect their own health needs.

 

Liz Craven  18:37

That’s so true. And I think that that is probably one of the other largest challenges is, number one, helping a caregiver to understand that self care is not selfish. It is actually one of the most necessary components of caregiving because how are you to give care if you are broken down yourself. So Self Care making sure that you have a few minutes every day to clear your mind, making sure that you are eating properly, that you’re finding a few minutes to take care of your physical health. These are all really, really important elements and it’s hard. And I get it that there are not always all of the minutes in the day that you need to make those things happen. My father in law lived with us he just passed last year last July. And when you have that situation and you find yourself there, it is very difficult to carve out those moments. But I know from my experience that when I did find the 15 minutes each day to even just walk around the block and give myself a little bit of space that allowed me to be much better for him. Now we were fortunate that he prepared well for his retirement when he was younger and so the funds were there to bring in caregivers and to have hands extra hands around to help him get through his day and make sure that he was physically cared for. So no matter what situation I think that caregivers have to remember that they are human and that they need rest and they need sustenance. So that brings me too. Probably the biggest question, What does everybody ask how do I balance it all, as a caregiver? What are some simple things that I can put into place to give me a little bit of balance in this overwhelming situation I find myself in.

 

Laura Banner  20:35

One of the things that I recommend is a schedule for two reasons, because the person who has memory impairment will do much better if they have a predictable day. It’s a procedural memory. It is something that we all rely on. We don’t give much thought to it. procedural memory is how do we know how to feed ourselves? How do we know how to go ahead and Brush our teeth or walk across the floor to go pick something up. Procedural memories stored a different way than conversational memory. And by having a schedule in place, then not only is it good for the person with memory impairment, but it’s good for the caregiver, because it allows the caregiver, some organization. It allows them to be able to plan to understand what the day is going to look like. So you’re not always playing catch up. It allows them to carve out that 15 minutes here, 15 minutes there. Sometimes I tell people, even if you have to wake up 15 minutes early, just to give yourself that 15 minutes of you time that 15 minutes of quiet, whether you go ahead and you just sit there and you meditate. Maybe you’re just drinking a cup of coffee, uninterrupted, whatever it is, that’s protected time for you. That’s very helpful, doing something that involves some physical activity, because not only is it going to be good for their health, but it is also good for their mind. It has that natural release of endorphins and it improves your serotonin that feel good chemical that we all make sometimes not in, in a large enough quantity. Sometimes you need to even if it’s not daily, because that’s probably unrealistic, but maybe once a week or even once every other week, make plans to go do something that does not involve caregiving. Whether you decide you’re going to book a massage, maybe you’re going to meet a friend for dinner, maybe you’re going to go ahead and go to a movie once the movies reopened. Whatever it is, plan on it, have someone come in if your loved one requires 24 seven supervision, make sure that that is protected time. Because on those really rough days, when you just feel like you are Right, your wit’s end and you don’t know what to do, you have something to look forward to. And that hope. And that future plan, I think gives people the ability to push through some of those most difficult moments. The other things that I recommend is that I believe every caregiver needs to have a conversation with their primary caregiver. They need to let that person know that they are the caregiver of someone, so that if it should arise in the future where they find themselves, all of a sudden, in a very stressful situation, and it didn’t just ease into it. It’s just an overnight sudden turn of events, that they can pick up the phone and call their provider and say, This is what’s going on. I need some help. And because the provider will already understand that their caregiver, they will be able to provide more options whether it is referral to a counselor or perhaps it will be that maybe they need some type of medication themselves, or whatever their provider feels is appropriate for them. But you need to reach out and not feel that you alone bear the responsibility of caregiving. Because what if, what if all of a sudden, you end up in the hospital, who’s going to fill your shoes, who’s going to fill that role? So even though you have taken on this role as the primary caregiver, you need to make plans in case someone needs to come in and take your place, either for a short period of time or perhaps even permanently, but to take the weight of caregiving on yourself and not ask for help, because you don’t want to ask that if anybody else, I think creates more stress within the caregiver. And so even if you never have to utilize That the fact that you have had a conversation with someone, or put a plan B, I’m all about Plan B, Plan C, put it, you know, down on paper, that will provide some relief for you. You have to protect your own health.

 

Liz Craven  25:15

That is really, really good advice. Because I’ll tell you time and time again, here’s probably one of the biggest comments that I hear from people. I’m frustrated, I’m mad at my family. Why do people say, Can I do anything to help? And then when you ask, yes, I need some help, and they don’t do anything. Well, there’s a reason for some of that. Part of it is I think how we’re asking for help. If someone says, Is there anything I can do for you? And this is a good lesson for those offering help and those receiving help. I’m so sorry. You’re going through this. What can I do for you? That’s a really difficult question for a caregiver who’s feeling overwhelmed to answer because Honestly, in that moment, they probably don’t know, they just know that they’re drowning. On the other side, you have a person saying, I really want to do something to help. But I don’t want to intrude on their privacy and I don’t want to intrude on their space and make them feel like I think they’re not doing a good job. So here we find ourselves in a situation. And I know from my perspective, what was very helpful as a caregiver was to create a running list, here are some things that would be very helpful to me, I need my kitchen cabinets organized so that when I go to prepare a meal, I can find everything or I need some basic staples. It would really be amazing. If someone could run to the store for me and keep a running list. You know, maybe it’s that somebody needs to mow the lawn once a week. Whatever those things are. Come and sit with mom for two hours each week so that I can go out and have a cup of coffee with a friend Whatever those things are, make a list. Make a running list that when somebody says to you, how can I help you, you can provide that list, just email that list and let them pick what fits for them and what’s comfortable for them. That’s one way to establish some of those help situations without feeling weird.

 

Laura Banner  27:20

I love that. That is a great idea. And as you’re saying that what I’m thinking is that when people have babies, we think nothing of doing that having a, you know, a food train, where people will bring in meals, because it’s so overwhelming. But here’s the difference. We know that as that baby gets older, they’re going to be able to do more and more for themselves, which takes some of that responsibility, that physical responsibility off the parent. So although we’re still a parent, and we, you know, do everything we continue to do for our children. We know that those first few weeks home from the hospital are the most stressful usually. Now you fast forward to caring for an elderly person, or anyone with memory impairment. Here’s the difference. Instead of getting easier with each successive week, we know it’s going to get more and more difficult. Today typically, is the best day because tomorrow is going to be more of a challenge. So yes, you have to reach out. And also if you’re not already part of a support group, I highly encourage people to join support groups. Sometimes people don’t have the ability to physically go to a meeting. Well, now there’s all sorts of online meetings. You can go to the Alzheimer’s Association, which is Alz.org and search through their site. They can help you find an online support group. My group we like I said, we’ve been meeting for just about For years now, and members have joined, some members have left because they no longer have the need, perhaps their loved one is no longer with us. But we become a family. In fact, I received an email last night from the daughter of one of my regular attendees. And she told me that her father is in the hospital because of COVID. And just the fact that she would think to reach out to me and I’m going to, I got her permission, I’m going to notify the group so that we can all you know, just keep him in our thoughts and prayers and hope for the very best for his recovery. But that’s the power of a support group. It’s a safe place. no judgment. People sometimes will spend however much time they need, just venting in a safe place to people who get it because there’s so much uneasiness for them to go out in the world that is not immediately touched by some type of dementia. To say how frustrated you are, or bitter or angry or tired, they feel judged often. And so they don’t do it, they hold it in. And that’s not healthy. But support groups are so powerful. So I really encourage your listeners. If you are a caregiver and you’re not part of a support group, please explore that option.

 

Liz Craven  30:23

And we will definitely provide links in the show notes and in the blog post that accompanies this episode for anything we mentioned here. And you can also go back to Episode 3 of Sage Aging where the Alzheimer’s Association Sylvia, Leddy was with us and told us about all of the wonderful online opportunities that they have for caregivers right now, including virtual support groups and caregiver college and all kinds of resources and information to help you day to day. Additionally, I recently became aware of a program that AARP has. And it is, I believe it’s called AARP community connections, I’ll provide a link in the show notes to that as well. That’s a program where you can sign up and somebody will call. So if you are still working and caregiving at the same time, and somebody calling the home and speaking to your loved one once in a while would be a good thing and a help. That is a program that I would encourage you to plug into, because that will assist with some of the isolation that’s happening right now with COVID. People are not able to get out maybe not able to go to some of the day programs they were going to before isolation can be a very serious issue. And those types of programs can help to alleviate some of that a little bit.

 

Laura Banner  31:49

Absolutely. Alzheimer’s Association also has a similar service. They have a manned 24 seven hotline by masters prepared trained counselors and As we know, things never go south, you know, between the hours of eight and five, it’s always 2am 3am, where you have really limited options. But it’s a 24 seven hotline through the Alzheimer’s Association. So another great resource.

 

Liz Craven  32:17

I think we could speak all day about all of the resources that are available. Unfortunately, we don’t have time to do that. I would love to do this again. But I think that for today, we will kind of shift that conversation to looking forward. I hope that if you’re listening and you’re caring for somebody with Alzheimer’s or dementia, that you pay attention to the things that Laura said today, I want you to go visit her online. I want you to listen to her podcast. She gives a lot of great information, practical information about things that you’re dealing with every single day. It might just be that bit of encouragement that you need to take the next step and do the next thing we are here, you’re not alone. Reach out, you can reach out to us at Sage aging, and you can reach out to Laura at compassionate education. Let us know what you need. What information are you seeking that you can’t find? We will make sure that we make that available to you. Laura, thank you so much for joining me today. You are amazing. I find you a kindred spirit. And I look forward to collaborating more in the future. All this

 

Laura Banner  33:29

Thank you so much for having me. It’s been an absolute pleasure.

 

Liz Craven  33:32

And thank you for listening. I hope that you’re finding value in the conversations that we’re bringing to you each week. If you’re enjoying the podcast, I have one favor to ask. I’d really appreciate it if you would subscribe to the show. leave us a review on Apple or Facebook and share the show with a friend who might benefit from the same information that you’re getting. If you have topic ideas you’d like us to cover. We’d love to hear from you. Drop us line at info at Sage aging.us. Until next time, have a great week.

Thanks for listening. If you found value in today’s conversation, I’d really appreciate it if you would leave a positive review and share the sage aging podcast with a friend. If you have topic ideas you’d like to share, we’d love to hear from you. Drop us a line at info@Sageaging.us

Liz Craven

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As I’ve been preparing to launch this podcast I’ve enjoyed revisiting stages of my own life and reflecting on how this topic became such a passion for me. While I’ve built my career on helping older adults and their families connect to needed education and resources, my connection to the aging and care process goes much deeper.

Some of my earliest childhood memories are of my own multi-generational family living together in one home. I was 4 or 5 when my grandmother moved into our home to help care for my sisters and I while our parents worked. Soon after, her father and grandfather moved in as well. We had 5 generations living under one roof! That was a beautifully chaotic adventure and knowing what I know now, I have so much respect for what my parents and grandmother did.

Fast forward to age 24. Newly married and pregnant with our first child, I spent several months with my in-laws to help care for my husband’s grandmother who had Alzheimer’s. Fast forward again to about 2009 – Wes and I have two teenagers about to head to college and his mother is diagnosed with cancer. Several years later, my mother is diagnosed with cancer. Several years after that Wes’ stepdad is diagnosed with Alzheimer’s disease and his father is suffering from severe dementia. You can see where this is going right? For the better part of the last 10 years we have been the caregivers. We see it as an honor and privilege to have been able to do that for our parents.

The key to navigating our later years is being proactive about gathering information before we get there and staying engaged once we do. To be sage is to be wise. There is wisdom in taking the time to ask questions, seek solutions and know your options before the need arises.

Each week we will discuss relevant topics of aging with experts who can help us to understand and be better prepared for aging. We’ll also introduce you to some Sage Agers who are totally owning their journeys through life. No topic will be off limits and we will deliver open and honest conversation meant to educate and empower our listeners. Each episode will also be available in video and blog formats.

Whether you are proactively seeking to broaden your own knowledge, a caregiver for a loved one or a professional working in the aging care industry, this podcast is for you. We hope you will join us as we explore and celebrate Sage Aging.