Season 1, Episode 7
The Caregiver Trending podcast features discussions on caregiving topics, interviews with thought leaders, and provides expert advice for caregivers from Homethrive’s in-house Care Guides. Episodes are available on Apple Podcasts, Spotify, or wherever you listen to podcasts.
Valene Campbell founded the home health care agency ReVitahealth, and is a dementia advocate who serves on both the Harvard Medical School Advisory Council for the Dementia Solutions Project, and the Alzheimer’s Society Canada NDG Black Community Working Group. She is also the founder of the Zou Zou Media Publishing House and has written three bestselling children’s books in The Amazing Zoe series since 2020.
Today, we take a harrowing peek into the inequities that still plague our healthcare system (and our bookshelves), discuss finding balance between raising our kids and caregiving for our parents, and ultimately learn to contend with burnout.
Episode Transcript
Ali Habashi: So, I’ve just given a high level overview of your accolades and titles. But like you say on the About Me section of your website, you can’t define somebody by what they do for work.
So, let’s get into who you really are. And why you’ve taken the path that you are still on today as an advocate for dementia and a children’s book author.
Valene Campbell: Well, thank you so much. I like to just start with the normal everyday things, things that I like to do. I love to go out to eat. I love to try different restaurants. I like to be social. I like to speak to people and learn their stories.
And, as it pertains to dementia and the advocacy, this isn’t something that I chose many years ago. It’s more or less something that I fell into given the changes that took place in my own family. Unfortunately, my mom was diagnosed with Alzheimer’s disease in 2016 and there were events that led me on this path based on understanding the dynamics of the disease and also seeing that there just wasn’t enough representation from my community in learning what this disease is all about and how it may affect us maybe a little differently.
I am a person of color. I am black of Caribbean descent. And, over the years, as you continue to read and learn more about the disease, you tend to learn that the Black community is affected at a disproportionate number than any other community.
And from that standpoint, there just isn’t enough literature that speaks namely to the social aspects, the financial aspects of the disease and even how it affects our community and our genetics differently than anyone else.
Ali: I have so many questions, and you know, while I was researching you for this podcast and for this interview, I heard such a concerning quote in one of your posts, and I’m going to quote you directly here: “In North America, the Black community is twice as likely to develop Alzheimer’s than their White counterparts.”
So when it comes to healthcare and the inequities that are still baked into our system, in Canada and the U. S., what are some of the issues that you’ve witnessed firsthand? And what are some of the ones that you’ve learned about since your journey as a caregiver and a dementia advocate first began?
Valene: Thank you for that question. One of the things that I noticed firsthand was a delay in diagnosis. My mother, as I mentioned, was starting to develop symptoms of memory loss and confusion, long before I even recognized it myself. The only reason why I sensed it in my own mother or saw any type of sign in my mom was when we took a vacation to London, England.
It was a hallmark birthday for her aunt and myself. Even though I lived close by to my parents, I would pop in sometimes to raid their closet, raid their pantry, raid the fridge, and you know, we’d have some good conversation. I’d spend an hour or two and off I’d go.
So when we went away, my mom and I, during that vacation I noticed mom’s level of confusion. She wasn’t walking with the group. Also, this is something that was very noticeable to me, she was always a very meticulous packer. She’d pack her luggage, her clothes in the most organized fashion. Color coordination, just everything in the right place.
And when we got to the airport, there was a security checkpoint. And they randomly chose a few of us from the group to open our suitcases. I saw my mother’s suitcase and I was taken back. Clothes were everywhere. There was no sense in the outfits that were packed. Things were just in disarray, and I kind of took it in, I didn’t say much at the time because of course we’re trying to rush through the line.
However, when we got to our hotel, and we were getting dressed to go out, I asked my mother, I said, “Mom, did you notice your suitcase and how it was packed?” and she said, of course, there’s nothing wrong with it. It’s fine. I was in a rush, which I didn’t take very well because again, I’ve only known my mom to be the most meticulous packer.
And in fact, she earned the title Miss Tetris. If you remember the game? She could fit everything, anywhere in the most organized manner. So as the trip went on, again, as I mentioned, she was just repeating questions and just seemingly aloof. That’s probably the only term that I can use at the time.
And when we were heading back home, I spoke with mom and I asked, “You know, mom, these are the things I observed. How are you feeling? Is there something going on now?” Yes, I do have a health care background, but It’s interesting. Sometimes your hat in the clinic or in the professional world doesn’t necessarily work when you’re dealing with your own family.
So, I recognize something. I recognize maybe there’s something cognitive, like some cognitive changes that may be happening. But, for some reason, I myself was delayed in putting two and two together with what was happening with my mom.
Ali: I’ve heard the same thing before too from others.
Valene: Yes, yes. it’s strange. I mean, you’re close to this person, you know their ins and outs and there’s perhaps denial. For some reason, your brain just can’t connect the two moving along. I spoke to my father about it and some of my other family members, my siblings, and we decided, yes, we should start asking these questions.
Now I’m going to get into when we actually were trying to get a diagnosis and then the delay happened. My dad finally made an appointment to go see their family physician. My parents have been married for now about 56 years. And when my father was just explaining some of the symptoms and the signs that he saw, he was questioned and in fact shut down and told that there was nothing wrong without doing a screen, without really speaking to my mom herself.
It was just a terrible exchange between my father and the physician. Now the physician did a light screen, asked my mom to repeat three words, and five minutes later he would return to the conversation and ask what those five words are.
Mom perhaps stumbled through only one word and couldn’t remember the other two. And still at that time, the physician just passed it off as sometimes it’s stress, sometimes it’s age, we just start forgetting things. It was just very passive and not very helpful. So later on, dad got really upset about it and decided that he was going to move on to another physician.
Later on, that new physician happens to have been someone from a different community. He was an Asian doctor, and at that time, he right away sent my mom for tests. And now when we talk about the disparities, in the healthcare system, to me and to our family, that was a blatant situation where we feel my mom was racialized, in the sense that her complaints were not seen and heard right away.
She ended up needing to go to someone who was a physician of color who was able to better understand the symptoms and further direct her care to the next steps.
Ali: I cannot get over 56 years together. And when your father went to the physician and said, “Hey, we’ve been together 56 years and here are the changes in this person that I very much know…” It was just dismissed, especially with the failed test. That seems unbelievable, but it’s not surprising. It’s not surprising in any way.
Valene: Yes, and then, you know, further to your question, after I started to talk about our experiences, and again, this is just happenstance in the sense that I started to speak to some of the people in my own circle.
And when I say that I mean friends, family, my church community, those that perhaps may have parents going through the same situation, I started hearing the echoes of the same conversation. My mom or my father got a late diagnosis. Or no, they weren’t taken seriously. No, we weren’t put on medication.
So that’s how my advocacy started. Because I just said, you know what? We have to start speaking up. And it’s not in a way where we want to ruffle feathers and call into question the knowledge of the physicians.
This is just really saying, Hey, we actually do observe these things.
This isn’t just in our heads and our loved one needs to get the support and care that they need as early as possible.
Ali: Oh yeah. Oh, of course. I know plenty of people who have struggled to get a diagnosis, but ultimately, you or your loved one knows exactly what you need. You can feel what’s happening in your own body and you can see what’s happening in people that you’ve known your entire life, and you know when something’s wrong.
Valene: Yeah. Yeah. And you know what? I want people to trust their instincts when it comes to their observations or their gut feelings. We have that intuition for a reason. And I think once we trust that, it will help guide us better in various situations, not only in the situation here.
Ali: And that preventative care, that early diagnosis, can change the trajectory of an entire life.
Valene: It really can. It really can. Because I mean, needless to say, when a loved one is diagnosed with this condition, of course it’s extremely hard. It’s one of those things where you obviously see the changes in your loved one, sometimes over a very, very short period of time, and your desire is to have your loved one live longer, the highest quality of life as long as possible.
So, in terms of early intervention, I just really am a proponent of that. You want to get in as soon as you can. So that way, as you said, you can change the trajectory a little bit in some way or form as time goes by.
Ali: Now, did this advocacy and this path that you found yourself on, did it lead you to you forming ReVitahealth?
Valene: No, no, that was before. That was a couple of years before, that was home health care. And when I finished school, physiotherapy school, I was always interested in working with the aging population.
And that company was formed to address the needs and concerns in seniors and senior care. So there was not quite a correlation, but funnily enough, it seemed to have helped a little bit in the sense of, just knowing what I’m supposed to be seeing at certain times of my mom’s life, right?
For example, yes, sometimes forgetfulness happens, and I think that happens to anybody. Does it necessarily mean it’s a symptom of Alzheimer’s disease? Not necessarily, but when you start introducing someone repeating themselves or not being able to navigate themselves home from familiar areas, because my mom was still driving at the time.
So things like that I started to call into question. So no, they’re two separate entities, but it just so happened that we’re able to support mom through it at the same time.
Ali: Okay, so another question then. Did ReVitahealth help you with your advocacy?
Valene: Again, separate. Because, yeah, interestingly enough, I actually, paused ReVitahealth for a little while in 2019 because that’s when I had my daughter.
You mentioned in the introduction about being a publisher and author. So that’s actually what took a different direction. So I’ll explain. I had my daughter in 2019. I started looking through her library and I noticed that there just wasn’t enough representation. At that time we’re going through COVID.
And I thought, you know what, it’d be nice to tell a story about what’s happening during COVID. Especially for the little ones, it was really hard for them to grasp what was happening. So that’s when I was inspired for book number one. And then, when the death of George Floyd happened, I noticed that there was polarizing opinions about the situation, so I was inspired to write book two.
But book three, which is about the main character Zoe, who visits her grandmother and notices grandma is a little forgetful. She didn’t bake her favorite cookies or tuck Zoe in bed. And that’s when I started to bring out the story of Alzheimer’s, dementia, through story book number three, right? So that’s where the advocacy started through my writing.
Ali: Oh, that’s amazing. Yes, Homethrive, actually has highlighted one of your books, that one about Alzheimer’s, The Amazing Zoe in Grandma’s Memory Box. And, okay, so that makes a ton of sense. That being said, are you seeing more on the shelves now? Has anything shifted a little bit, and if you’re not, is there anything else you’re hoping to see on children’s bookshelves going forward?
Valene: Yes, I would definitely say that there is a little bit of a shift in terms of the topics that we see, of course, the conversations we’ve heard about the importance of inclusion and diversity, and I think those words aren’t necessarily about race. I think those words also include physical ability, or just different experiences that children may have that we as adults often overlook because how could they possibly comprehend such a complex feeling of being left out or jealousy?
Things like that. So I really want to call into question the experiences that we have every day, the experiences that adults feel, and by extension, children sometimes feel. As much as we think we’re trying to shield them, children are brilliant and they’re perceptive and they’re able to see through a lot of the things that we’re trying to pull back from them.
So, hence the conversation of dementia. My daughter at a very young age witnessed, for example, outbursts that my mom would have as it relates to the condition of dementia. She would see mom getting very angry and maybe sometimes even losing things and forgetting that she had just mentioned something.
So now my daughter’s five, but prior to that she would sometimes be scared by seeing mom’s behavior. So I wanted to tell a story that would help kids understand that there’s such a beautiful relationship between grandchild and grandparents. And I’m starting to see more stories of that being told, maybe a few about dementia, although not many yet.
But at least in understanding the dynamics of the intergenerational relationships and their importance to the entire family. So, there’s slow changes happening on the bookshelf that I see, but there’s definitely room for more.
Ali: Again, not surprising. Okay, so. You’ve got a child, you’ve got a mother with dementia who you are a caregiver for, so you’re part of the sandwich generation. Tell me, how was that, raising a child and also becoming a caregiver for your mom?
Valene: Oh, you struck a chord. You know what? I think if I am going to reflect on my lifespan, I think this section, slice of pie, I’d say, is perhaps the most challenging piece to my life so far. Of course, there are beautiful moments and happy moments, but it’s also matched with its extreme challenges.
You are being pulled in so many different directions. Everybody has their needs. And even when it comes to my mom, and I’m only speaking of my mom, but both of my parents have needs. They’re aging. My father is 88 now. And while he’s still able to manage cooking a little bit and of course dressing himself and we can still have great conversations, but his needs are increasing as well.
And then now, of course, my daughter, who’s only five, she just turned five, not that long ago, her demands have increased or have changed. So I find myself in the middle of the day being pulled to my parents and to mom, and then I have to say, “Hey, my daughter, can you just wait a little while? I’ll be right with you.”
Does guilt come in into play? Absolutely. I feel guilty at times because I feel that I should be able to be a lot more available for my daughter, but also my parents have done so much for me and they’re my parents. I need to be there for them as well.
So when I close my eyes at night, I’d say maybe about midnight, sometimes one o’clock in the morning, sometimes two o’clock in the morning, given the entire day, I’m tired. I’m tired. I’m exhausted. I’m spent, And it’s challenging, getting around it. It’s very challenging. I’ll just even share a story briefly.
And this is when I realized it was all crashing on me. And I felt that I needed to make some serious changes, even just for self, just to make sure that I’m still connected to me. And I’m still able to see and know and respond to the needs that I personally have. So, it was a school morning. And my mom, you know, she’s not home every day.
She goes to an adult daycare program, which, I think it’s phenomenal. I’m glad that such programs exist. In any case, I was trying to get my mom ready to go to her program. Also, manage breakfast with my daughter. And my mom’s upstairs, daughter’s downstairs, and I had to do some cleaning and so forth for her as she was getting prepared to start her day.
And I was at the bottom of the stairs, and I had to stand there for a second. And I was like, my daughter’s calling me, my parents are calling me, and I just stood there for a second. I was like, oh my God. Oh my God.
And I thought, okay, okay, and I started speaking out loud, just like this: I was like, okay, my daughter: you got to get her to school in 10 minutes. Mom, you have a little bit more time. Okay, priority. All right, “Mom and dad, give me a few minutes. Let me go back and talk to my daughter. Make sure she finishes her breakfast.” You know, kids don’t like to get up in the morning. And, I got her off. And then I came back and finished managing mom and then got her off to her program.
I came back and sat down for meetings now starting at work, but I had to just take a moment. I did one thing for work and then I walked away and that was it for the rest of the day. You know, it’s challenging, it’s challenging, but it’s just so important to tap in to self and to put your hand up when you need it.
There’s no shame in asking for help. This is what I’ve learned and I’ve stopped feeling as though I cannot ask for help. Everybody can contribute in their own way. And that is something that I had to learn along the way as well. Sometimes you expect certain help from siblings, from cousins, whomever, family, people, right?
You expect certain things to happen a certain way. And when it doesn’t, you end up getting frustrated. it causes dissension between the relationships, you and that person and what have you. But I had to pull back and think, where are the strengths of, of everyone else? And where are my personal strengths and being able to pull back and analyze hey, someone’s better at keeping appointments.
Someone’s better at preparing dinner. Someone’s better at whatever those things are, call them into action and activate them. And that’s what I’ve needed to do.
Ali: Oh yeah. I mean, I’ve also found that sometimes, the most helpful support comes from the places and the people that you least expect it to come from.
Valene: Absolutely. I rely on my faith, too, and when it comes to, as you said, people who you’d least expect, some of the people from my church, for example, will just call randomly and just say, “I’m just checking in,” or they drop off a meal or, “hey, I just want to pray with you today,” things like that.
I just really appreciate it. And as you said, just be willing to accept no matter where it may come from because if it comes, it comes. If it doesn’t, you’ve got to find it somehow within yourself or even through something else or someone else. But the, the main point is just recognizing that you absolutely can’t take this journey by yourself.
It’s impossible. You just cannot. We need, we need each other.
Ali: Absolutely. Absolutely. All right. So this actually leads me directly into this question that I wanted to ask you, about burnout. And about some of your go to ways to find yourself again, in those moments when you can, in between everything that you’re already doing. Because we’ve gone through a little bit of your history now and I know for sure as a founder slash speaker slash advocate slash author slash mother slash caregiver, you must have been burned out a few times before. So what are some ways that you recharge yourself?
Valene: Great question. It’s so mandatory, but some of the ways I would say…I have to walk away. My family knows now that. There are times where I’ll get to a point and I’ll say, “Hey guys, I got to check out right now” and they accept it. They understand it. I will leave. I will go get my nails done. I will go for walks.
I love going for walks, sometimes with no music at all. I just like to be alone with my thoughts. I go for drives. I will even spend time reading. For example, there are a few books that I like to read that are pertaining to being a sandwich caregiver or just about dementia itself. I think it’s always important to stay informed with care.
Perhaps maybe the changing of, of medications or it may be, you know, new concepts that are helpful in managing dementia or managing the behaviors of your loved one. it could be just spending time with friends or even spending time with my daughter, you know, sometimes as I mentioned. I have to pick and choose who I’m going to be with in that moment.
So I’m very intentional of just saying, “Hey, this is our day today with, with my daughter.” So there are various things that you gotta do, but I think it’s so important again, just tapping in and being real to myself and not feeling as though because you’re tired or because you can’t push beyond this limit that I allow guilt to fester. I’ve stopped doing that.
Ali: Good. I think that’s smart and healthy. And I know we at Homethrive are always, always trying to reiterate, self-care is not selfish. You need to put on your own mask before you help others on the plane.
Valene: Absolutely. Absolutely. It’s mandatory because I find, when I don’t allow myself to have that time, in fact, I do myself a more of a disservice because I’m not organizing my thoughts. I’m not organized when it comes to work or or anything else. Things will slip through the cracks. And I know oftentimes, of course, I can’t afford for that to happen.
I have to look at the long term rest now and work hours later. And you’ll be able to be refreshed and revived and be able to move forward. But then if you continue and just push right through it, then you’re actually putting out fires, which is more work.
Ali: Alright, so I think I just have one more question for you, which is, have you come upon, aside from your church group, any communities, resources, or organizations that have been just so helpful to you as an Alzheimer’s caregiver?
Valene: Yes. Great question as well. So many years ago, before, of course, my mom was diagnosed with Alzheimer’s disease and so on.
I, of course, knew about the Alzheimer’s Association. However, I never tapped in. And I would never tell the clients I’d work with to tap in. It was just never a part of my conversation, simply because, a lot of people in my community, as I mentioned, people of color, we just didn’t see the connection.
But I think over the years, the association has done so much better by implementing more images, even at the very basic level, images that we can relate to. Resources as well on the website that we can also relate to. There are seminars, there are additional groups, and I think that’s a great starting point.
I tapped in, my family tapped in, and they were able to, connect us with a service. Well, of course, it’s called respite care, where someone’s able to come in and just give my family some time to do some errands or just rest. So without knowing that, or without knowing about, that in particular, we would get a disadvantage.
So I think that there are particular influences that I like to follow on social media who also advocate. They introduce particular household items that are helpful, just create a safe space for dialogue about the changing health of our loved ones. And of course, on Facebook, there are a few Facebook groups as well, where we share ideas, pose questions, what did you do to help this situation, things like that.
So the dialogue is perfect. It’s necessary. And it’s also eye-opening because sometimes you may see behaviors in your loved one and you think you’re on your own. No one else could possibly know what you’re talking about. But in fact, when you participate in these groups, you’ll see there are tons of people who actually understand exactly what it is you’re going through.
I also feel it’s, given me a little bit of grace too, because say, for example, there are people in your life that were your friends all along. Now you become a caregiver. There are things that your friends won’t be able to relate to as much as they love you and want to be there for you, but they simply don’t get it.
And you feel as though you don’t want to continue speaking about these topics because you don’t want to feel like you’re a, for lack of better terms, a Debbie Downer. You don’t want to be that way, but at the same time, when you’re able to redirect that conversation to people who are actually experiencing the very same things or close to what you’re experiencing, you feel a little bit at peace, that people have that understanding. So those Facebook groups I find are great as well. And there’s a book that I have. It’s right in front of me. I like this one. It’s called Surviving Alzheimer’s and this is by Paula Spencer Scott.
It is just filled with so many gems. So basically, it gives you a counteraction for every action. So if your loved one does this, maybe you can try this. I really like that. It offers a lot of possible solutions that can help you manage every day.
Ali: Oh, that’s excellent. We’ll, list all of this stuff too in the show notes.
All right. So any last words of encouragement to people in your same position, people that are in these communities, which, by the way, I should mention too, that Homethrive does have a Facebook community as well for working family caregivers.
Valene: Oh, that’s great. I have to tap into that.
Ali: Yeah. Oh, it’s great. It’s lovely to see the posts come through too. But any last words of encouragement for people who found themselves in your position, in those Facebook communities?
Valene: I kind of said it, but I just want to reiterate it that, this is something that is very challenging to approach by yourself. I have spoken to some people who may be the only child in their family so they kind of feel like they are doing it all themselves, but this is where you really try to focus on building that community around you.
And it may be people who you don’t even know, people that you haven’t known for years and years, right? It may be people that you connect with as you start reaching out and finding out these resources and learning about who some people are in this space.
I can really say this: stop trying to handle this on your own. That’s really my biggest advice there. Recognize your boundaries as well. If you’re perhaps speaking with other family members sometimes these are the dynamics that I see all the time. Responsibilities may be heavily weighted on one than another. Again, delegate.
It’s so important to delegate, as I mentioned, when they be stronger in a particular area and let that be their thing. that’s a helpful way of communicating and navigating together. And, lastly, I just want to say that you’re not alone. There’s so many people going through this with you, and you really have to know that you can find and feel the support that you need.
You’re not doing this by yourself.
Find out more ways to support your employee caregivers by learning about the benefits that can help. To receive caregiving benefit insights delivered straight to your inbox, sign up for our weekly newsletter.