Did you know that Millennial caregivers make up nearly a quarter of America’s 44 million family caregivers?  One of them is Atlanta writer and dementia care advocate Aisha Adkins.  An only child and African American who grew up in a predominantly white neighborhood near Seattle, Aisha was bullied in school and had forty operations as a child.  But resentment is not in her wheel house.  In 2017, she founded Our Turn 2 Care, a website that connects young adult caregivers with information, resources and each other.  Aisha helped care for her dad when he had a stroke and she now cares for her mother who has Frontotemporal dementia, the most common form of dementia for people under the age of 60.  Aisha talks about how her childhood prepared her for caring for her mom, getting her Master’s degree piecemeal from Georgia State University and her advocacy work on behalf of her fellow Millennial caregivers.  She also shares her learnings from caregiving thus far, and she tells us why she’s perfectly happy spending a Saturday evening sitting on the sofa with her parents.

Aisha’s website
Learn more about Our Turn 2 Care

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Music: “Save One Another” by Dlay | CC BY NC | Free Music Archive

 

Love Not Lost (www.lovenotlost.org)

Aisha and her parents. Photo courtesy of Love Not Lost.

 

INTERVIEW TRANSCRIPT:

[INTRO CLIP / MUSIC]

JANA – In 2017, after nearly five years of being a full-time caregiver for her mother who has dementia, Aisha Adkins decided to share what she learned through trial and error. She created a platform called Our Turn 2 Care, whose mission is to support and raise awareness about a hidden but growing subgroup: Millennial caregivers who make up nearly a quarter of America’s 44 million family caregivers. Our Turn 2 Care connects young adult caregivers with information, resources and each other. When she’s not fighting for dementia and caregiving awareness. Aisha is busy earning a Master’s in Public Administration at Georgia State University, and she’s Associate Editor for the lifestyle site, The Black Expat. Her writings have been featured on that site as well as on Blavity, Lady Literary magazine and many other publications. Aisha Atkins joins us today from Atlanta, Georgia.  Aisha, welcome to The Agewyz Podcast.

AISHA – Thank you, Jana. I’m glad to be here.

JANA – So let’s get a little backstory here. I understand that you have lived in the metro Atlanta area for nearly 20 years, but you grew up outside of Seattle in a neighborhood you describe as, “the homogenous heart of Microsoft” – which I thought was really spot on.  That really just says so much, right there.  You were one of just a handful of black kids in your school and prime fodder for bullying. I want to know so much more about that. Can you share a bit?

AISHA – Certainly. Yes. Well, you know, it was interesting. My parents certainly wanted to ensure that I received the best education possible and expose me to, you know, the greatest opportunities for success. Unfortunately, you know, in the US, there are still challenges with education being separate oftentimes and not always quite equal. Oftentimes minority communities don’t receive the funding or the quality of instructors you know, needed in order to achieve this.

AISHA – And so, my parents were adamant about placing me in the best schools, which, unfortunately did not always come with diversity. And with that lack of exposure for the other children and lack of education about people who are just different than they are, you know, unfortunately, came bullying and harassment, and lasted for a long time. But I’m grateful that my parents really fought hard, you know, and really advocated on my behalf, you know, whether it was staying in constant contact with the administrators at the school, or, you know, talking with parents individually, and having meetings with them, and just always letting me know that I’m valued and loved.  And they also made sure that my extracurricular activities always included diverse experiences, not just racially but also you know, in terms of being exposed to people with different abilities and persons with disabilities or developmental or physical, and folks who speak different languages.  And so, they made sure that I had a well-rounded upbringing and supported me in any way that they could.

JANA – And how did you all get to Atlanta? Your whole family’s there now, right?  And you’re an only child, as I understand it.

AISHA – That is correct. Yes. My father’s job relocated us to Atlanta in 1999. And we’ve been here pretty much ever since.

JANA – Right.  Aisha, after you moved with your parents to Atlanta your dad had a massive stroke, which was a major interruption in your life. This was after your sophomore year at Georgia Southern. You’d already planned to take a semester off, but then you decided to extend that hiatus. Did you feel as an only child that you kind of had a different set of challenges as a caregiver in that situation.

AISHA – Well, you know, Jana, it’s interesting at the time, I don’t know that I was even familiar with the term caregiver. I certainly you know, would not have identified as such. I was in my early 20s. And I suppose I didn’t give a whole lot of thought – significant thought – to it one way or another because I think the timing happened to work out well for me, in that I was also kind of seeking sort of that respite from school, as well. I think I was getting a bit overwhelmed, so you know taking a step back and spending that extra time with  my family. So I think in a way, extending kind of my hiatus for that year serve multiple purposes. And it just – the timing happened to work out really well. But it certainly wasn’t something that I gave a lot of forethought to in terms of providing care, you know, in the context of being an only child or otherwise.  It wasn’t really something that I considered one way or another

JANA – So were you and your mom caring for your dad? I wonder if you could talk a little bit about what you did during that time.

AISHA – Sure. So after suffering a stroke, you know, my father had challenges. He had to engage with the physical therapy and occupational therapy. So his walking ability and his vision and those sorts of things were temporarily affected. And so, you know, I definitely assisted in some of the simpler activities of daily living, whether it was, you know, making a breakfast or just making sure that he navigated the stairs safely, you know, as he was regaining those skills.

AISHA – And you know, my mother actually was not working prior to his stroke. And so she went back to work while he was on leave. And so I was there with him, you know, throughout the day and would assist him, but I mean he was remarkably recovered, you know, incredibly well. And so the amount of assistance that he required was not significant, I would say, but it was more I think, kind of a comfort in that when someone experiences such a major health event – and the prognosis initially when it occurred, was not good – having me there I think provided comfort, you know, for my mother, but for myself as well, knowing that should anything additional occur, should there be any residual effects, you know, I would be present and so he would not be in the home by himself in the event of an emergency. But certainly, again, you know, he was able, miraculously, to regain all of his faculties and get back to work.

JANA – Wow.  Was that the first time that you had seen your father sort of vulnerable? And what was that like for you?

AISHA – You know, it’s interesting. He was actually injured when I was really young. I believe I was about seven or so.  He ruptured both of his patella tendons. And for, gosh, I believe, maybe about a year, I don’t know, some of those details in terms of timeline are a little fuzzy. But you know, he was in a situation, he had to go through that physical rehabilitation, then was learning how to walk again and all those things. However, even in that state, he maintained kind of this sense of control and strength. Now granted, I think, I was probably shielded from a lot of the perhaps more challenging pieces of that time, given my age. I spent a lot of time with family friends and neighbors during that time, but I do remember the sense of strength that he was able to exude. You know, obviously when someone suffers a stroke, there are moments when, you know, when they’re incapacitated, and so the optics of that are very different.

AISHA – And then with that, the emotions are different. And obviously, experiencing this as an adult child is different as well, you know, you’re very much more aware of life and death and mortality. And all of these things come into play and come to mind when something happens. And so the experience was certainly different. But I think also, because I had seen the resilience that my father possessed, I also had this sense of confidence that eventually things would work out.  And I knew his work ethic, you know, and all of those things, and so being able to keep the event in that context, I believe, really helped me to be of help to him and to my mother.

JANA – So you get back on track, you finish your Bachelor’s from GSU, and then you have another interruption.  Your mom is diagnosed with Frontotemporal dementia, and that’s when you become a full-time caregiver. So what were the signs?  Take us through the diagnosis and your reaction.

AISHA – Sure. Well, the interesting thing with Frontotemporal dementia – which is the most common form of dementia for people under the age of 60 – the symptoms can vary from patient to patient, so, you know, there’s no standard necessarily, but we certainly started to see some changes in behavior. You know, obsessive compulsive behaviors surrounding maybe food or cleaning and things that she had not exhibited before. And for her, which – this is a rarer symptom for FTD, people who suffer from FTD – she experienced short-term memory loss. So initially, we assumed that perhaps it was Alzheimer’s disease.

AISHA – And she went through a series of misdiagnoses. The initial diagnosis was stress, which we thought immediately that that was incorrect.  We were not confident in that at all.  And so we immediately sought a second opinion, and that was the suspicion of early onset Alzheimer’s disease, but there was no confirmation.  And the more research that I did independently, just reading from medical journals and you know the articles there but also on sites like the Alzheimer’s Association website that also covers various different types of dementia, including Frontotemporal dementia, Lewy body dementia, and then all the variants that fall under those umbrellas, I gained more insight into symptoms that went beyond memory loss.

AISHA – And so once I gained that insight, I was able to do some additional research on specific specialists that can better diagnose and better pinpoint the conditions. And so typically, in order to attain a dementia diagnosis, you would visit a neuropsychiatrist. Those can kind of be hard to come by, so your second-best physician would be a neurologist who has experience dealing with this particular type of brain degeneration. So we were able to locate a specialist who almost immediately upon completing some imaging in the form of MRI brain scans and some basic memory testing in a questionnaire, was able to diagnosed her with FTD. So that really matched what our suspicions were.

AISHA – And the reason that it’s important to get an accurate diagnosis, is because that’s going to dramatically affect the way that the disease is treated. There is no cure whatsoever for any form of dementia.  There are some that – depending on the cause –  some of the effects could be potentially reversed or minimized.  Right now, though, they are only medications, obviously, that minimize or manage the symptoms that come with the disease. But depending on the type of dementia that one has, there’s going to be a different course of treatment potentially. And so we were really grateful to get this more specific diagnosis, because that did change the way that we approached at least the medicinal aspects of treatment.

JANA –  And so what was your reaction to all this? I mean, you sound like somebody who’s extremely grounded and measured and well-equipped, but this must have been scary for you.

AISHA – You know, the interesting thing about dealing with a degenerative brain disease is that there’s kind of a continual realization. You know, it’s almost as if you kind of wake up every day and have to kind of pinch yourself, but in the worst possible way, of saying gosh –  is this really what we are experiencing?  You know, because it’s something that no one really can prepare you for. And, you know, I think that the, kind of the academic and the more clinical side of me, you know, my reaction immediately was to kind of dive into research and try to figure out how to manage things and to prepare long-term.

AISHA – I’m a planner, and I like making lists. So I certainly, you know, did that immediately. And then I think, especially prior to getting the right combination of medications, and some of the behaviors were more severe and affected our family differently.  It was very difficult.  And I – me being only 27 at the time of my mother’s diagnosis, there were just so many conflicting feelings.  I think initially, I thought that I would be a caregiver – or that I would care for my mom, I think is the way that I kind of viewed it.  Because I still didn’t identify fully as a caregiver, but I figured, well, you know, I’ll leave my job, I was working a full-time job in health care at the time. And I figured, oh, it’s no big deal.  I’ll leave, but I’ll be at home with my mother for about six months. And, you know, I’m not sure what I thought necessarily would take place at the end of six months. But I think I thought that I would kind of resume a typical Millennial life that I saw my peers kind of living.  And so you know, I would go get this job for a trendy startup or something and, you know, get a condo and you know, get married and all of those kinds of – the Millennial dream.

AISHA – And what I realized really quickly is that, gosh, that’s not going to happen. You know, certainly not in the timeframe that many would associate with, kind of development as a young adult. So you’re dealing with that piece of it in terms of how your life changes and then obviously watching your parents you love dearly deteriorate before you and coming to terms, again, with their mortality. We are a family of faith. We are practicing Christians.  So in the spiritual sense, I was not concerned about what happens to my mother when she leaves this earth. But in just the practical sense of watching a loved one suffer, you know, through confusion and fear and some of the other challenges you can have when your cognitive abilities are deteriorating, was really frightening initially, for me, and still, to this day carries a lot of sadness that I need to continually work through on a daily basis.

JANA –  When you were working, and your mom was diagnosed while you were working, and you went through that period, where you said, you left your job, did you discuss this at all with anyone that you worked with? Did you feel you could discuss it?

AISHA – You know, it’s interesting, and I’m asked that pretty often because so many people don’t know how or if to approach their employer and co-workers with this information. Interestingly enough, the health care facility where I was employed, was actually the same institution where my mother received one of her diagnoses – not the diagnosis of stress, but one of the diagnoses.

JANA –  But was it the incorrect diagnosis?

AISHA – It was incorrect, but it was certainly closer than stress. And that’s actually how I came about the position. During one of her visits, you know, my father suggested that I ask if they’re hiring, because he knew that I was interested in healthcare and the healthcare field, and that I love helping people. And I happened to have my resume on me and gave it to one of the administrators and began working there just a couple of months later.

AISHA – It’s very interesting because working in healthcare, administrators and folks are familiar with all types of diseases and diagnoses, right? So they’re empathetic in that they understand that these are diseases that exist. So you don’t have to explain their existence, because I think for some people, maybe you do not have that medical background and familiarity. Rare diseases, especially, can be difficult to understand as being fact. But what I also find is that because hospital administrators, because they’ve seen it all, and I think that by virtue also of, you’re dealing with larger organizations, there’s kind of a bureaucratic format that takes place… and so it can be difficult, I think sometimes to maintain not only employment, but just to kind of navigate those systems in a way where, particularly if, you know, my mother was a patient there at the time, I felt conflicted initially, that I would not be able to advocate for her the way that I felt was necessary, you know, as also an employee of the organization.

AISHA – But also early on, when we were still kind of trying to figure out how to manage symptoms and coming to the realization that it would not be safe for her to be at home by herself anymore, you know, coming to those realizations. It’s challenging to explain those things to anyone when you have limited time off. Most employers do not have caregiving as a part of their paid family leave policies.  [They] may cover maternity leave, sometimes paternity leave, and then that’s kind of it. And so you’re stuck in kind of this limbo where people say, oh, gosh, that’s too bad. And, you know, I understand that you’re experiencing a family crisis, but we still need you here, you know in the morning.  And you know, interestingly enough, I found that just the stress of being at work and worrying about my mother and all of those things actually created, then, some kind of psychosomatic stress responses in my body. And I became chronically ill.

JANA – I’m not surprised.

AISHA – Yes.  And I became chronically ill, which then required me to take off more work. And this is all in retrospect. At the time, I didn’t know the causes of all of these kind of mystery illnesses.  I experienced hives and digestive issues and severe migraines, and I thought maybe I was contracting something from the patients at the time, because I just had no idea, the mind body connection and the physical toll that stress can have on your body. And, you know, this is kind of my first grown-up job. And so, you know, I think that because hindsight is 20/20, I realized there was so much transformation and change happening in my life as a young adult, and there was a lot to take on.

AISHA – And so I don’t know always if I was able to fully articulate what I needed from the employer or what was maybe missing in some of their policies, or you know even whether the position would be a good match.  You know, sometimes you go in for an interview and you think this should make sense, and then you realize, well, had I known that I would have needed X, Y and Z maybe I would have rethought the offer.  You know, things like that, that you begin to understand, as you look back and you learn more, and you  compare workplace environments.

AISHA – So it’s things that, I think everyone kind of has to assess the type of workplace at which they’re employed. And you know, whether they have flexible leave policies, and looking into their paid family leave policies, and those sorts of things and just, you know, assessing that and if you have an opportunity to do so, prior to starting your job somewhere, I think those are really important things to consider.

JANA – For sure. You did a blog post where you talked about social isolation and forcing yourself to go to a nightclub and then meeting new friends, new friends via Facebook. So were you talking about this with your friends?  Talk about the social picture for you at that time.

AISHA – Sure.  So, at the time it was shortly after kind of the Great Recession. And so because my Bachelor’s degree is in Sociology, with a Social Services emphasis, I was looking into a lot of nonprofit positions. And unfortunately, some of the first organizations to be hit by this crisis were nonprofit organizations, so a lot of them weren’t hiring.  And so that’s how I kind of found myself directly in healthcare. But a lot of my friends, they kind of run the gamut in terms of career, but I have a lot of friends who are in IT and who are physicians and attorneys, and so have kind of more stable careers. And, you  know, these careers that they were able to jump right into following graduation.  And so –

JANA  – right because they weren’t caregiving, either.

AISHA – Exactly. Well, and so you combine that with the fact that now our lived experiences are entirely different.  And I was really hesitant initially to just share because it didn’t sound as cool, you know.  They could get on a plane and travel to Europe for a couple of weeks if they wanted to, or just spend time with friends and family in any kind of capacity that they wanted to do. They had a lot more flexible. And so initially it was kind of embarrassing, to be honest, trying to explain to people why I can’t be as spontaneous with my social outings, why I have to plan as much as I did, why I wasn’t dating, why they’re kind of in these stages of planning families that I’m not in.

AISHA – But what I also realized is that they can’t meet me halfway if I’m not honest with them, and that I had to give them that opportunity. The challenge with that is that I had to kind of weed through some of my friends. And it’s not to say that, you know, anyone who was unable to relate or didn’t fully understand, was a bad friend. It’s just that, you’re put in position where you need to reassess some friendships. So you know, there were folks who just simply did not understand that my time is very limited.  And that just because you send me an invitation to something doesn’t mean I’ll be able to attend, but that that you shouldn’t take that personally. And then you know, my friends who are more understanding of that, I’m able to cultivate a deeper relationship with them. And what I’ve also found is that over the course of the last five or six years, some of those friends have now since become caregivers for parents or grandparents. And so they’ve reached out to me and said, Wow, either I’m sorry or Wow, you know, I can fully relate to what you’re going through now.

AISHA – So it’s interesting that by my being so open with my journey, and just being honest and transparent, we’ve opened up another channel of conversation, and I think enabled them to be a bit bolder, as well. And I think that’s been really healthy. Because I think so many people don’t discuss caregiving.  There’s shame attached with being sick in this country, so certainly anything associated with that and attached to it, there’s also a stigma involved. And so, you know, I’m very, very much an advocate for those who are ill, and those who care for the ill and removing that stigma. Because there was a time when we believed in caring for one another, and really being that village, you know, and I think returning to some of that, but certainly maintaining the new knowledge that we have around whether it be mental illness, or, you know, brain disease, all of those things, I think if we can find a balance there that we can really make some progress as a society.

JANA – And your generation are going to be asked to care for so many more people than my generation, you know, you’ve got your work cut out for you. But I have so much respect for what you’re doing in terms of channeling the lessons of your own caregiving experience into Our Turn 2 Care.  So you suggested some resources that you felt were lacking and some insecurities-slash-shame, which let’s face it cuts across all generations, when it comes to talking about sickness, unfortunately, in this country. What sort of resources do you want to provide with Our Turn 2 Care?  Tell us a little bit about that.

AISHA – Sure.  So, Our Turn 2 Care really highlights kind of the gaps in what is provided in terms of support for young adult caregivers, whether it’s support groups – so there’s one that I’m particularly fond of, it’s part of The Caregiver Collective, which you can find on social media. But there’s a monthly online chat that has been absolutely wonderful. One thing that I discovered early on in my caregiving journey is that though there are a myriad of Facebook groups and in-person support groups, for caregivers, so many of them are predominantly consumed by folks who are 65 and older, which is great, and I think there’s definitely a space to learn from, you know, the boomer generation and Generation X, and even the greatest generation for those who are still with us. But I think that there are unique challenges that folks in their 20s and 30s are dealing with.

AISHA – And so, you know, being able to discuss with my peers, concerns about, you know as we mentioned, trying to maintain steady employment, and pay your own bills and pay off student loans when you’re not fully employed. Or you know, because you’re caring for a loved one, or you may be employed part-time and trying to navigate that and figure out what you will do if you are interested in starting a family, but you don’t have any time to go out there and meet someone.  And being concerned about, well gosh, what if one day I’m in a position where I might need someone to care for me, but because I’ve spent my time caring, I haven’t met anyone, I don’t have children. And that’s obviously not the initial reason that you, you know, get married and start a family, you know, and those things. But it’s certainly something that comes up. People wonder, gosh, you know, where will my life be in 10, 20, 30 years? What would that look like?  Because, right now, there’s just not the ecosystem that is set up for those without families to assist them.

AISHA – It’s really challenging and it can be a scary thing, especially if you are not in a position where you can advocate on your own behalf. And so, you know, those are things that we consider.  And being able to talk with other folks or even just, you know, I think about how sometimes when I interact with care providers, physicians, hospital administrators, etc. I’m currently 34, but I am told that I look younger than I am. And I know I certainly sound much younger. And so kind of demanding respect in those situations, and asserting your own authority and not being kind of condescended – those are things that when you’re older, there can be kind of this, I know it’s a double-edged sword, you can receive great respect, but also great disrespect. But I think that trying to prove my competence and my understanding as a fully formed, grown adult can be challenging. And you know, I’ve had folks hang up on me and you know, all of those things, but then they’ll respond to my father’s phone calls, so-

JANA – [overlapping] Oh wait, you’ve had people hang up on you?

AISHA – I have had people hang up on me.  You know, and then I’ll obviously have to kind of recruit my father to now pause from his full-time job to reach out to folks and, you know, they respond very quickly and you know, are more than happy to interact with him. And so those are frustrations that certainly impede the process, you know, that I could be spending with my mother attending to her daily needs.  So being able to discuss things like that is really important.

AISHA – But in addition to that, I think there are some gaps just in terms of representation for people belonging to minority groups. And so one thing that I observed during my short time working in healthcare, but that I’ve also heard from friends who come from immigrant families, is that oftentimes there’s a language barrier and a cultural barrier.  I have a lot of friends who are first generation Americans, and their parents may speak English, but are maybe more comfortable communicating in their native language. Or if they were caring for a grandparent, they may not speak English at all.  So there are a lot of challenges, and many larger healthcare organizations have translators on hand, it’s not necessarily for every language that exists –  often you’ve got Spanish, and that depending on where you’re located in the country, it trickles off pretty quickly. So that can be a tremendous challenge.

AISHA – Also, just the cultural differences that come into play. So whether it’s the way that different genders interact with one another in a very intimate setting.  If you have a woman who’s going in and she’s seeing a male physician because he’s a specialist and that’s the only when he’s available, but there is a protocol in place about her dressing or undressing, or being in various stages of undress… or eye contact, or physical touch, and those sorts of things that can make it uncomfortable for the patient and the family as a whole, and it can be difficult to explain that to the doctor if they are not open and willing to listen.

AISHA – Or simply the role that a young adult caregiver may play in their elder parent’s life. Culturally, sometimes there are certain things that are not discussed. So it may be overall health or it specifically be sexual health or something like that. I mean, no one wants to have this conversation with their parent or their child. However, despite the awkwardness, sometimes these are questions, whether it’s on an intake form, or you know, something that’s discussed with the physician directly, these are things that may play very important roles in the way that the patient is treated, the course of action that’s taken.  But these are details that may be omitted, whether it’s about their sexual history or activity.  You know, the parent may just say, Well none of this exists.  But that may have detrimental effects. And so being able to communicate those things to physicians and raise awareness about the importance of cultural competency, cultural awareness, is really key as well, because these are things that as the younger generation, we are familiar with, maybe in a different context or different lens, and maybe our parents would be. So it’s been really, really valuable to be able to talk to folks who’ve had similar lived experiences, and who have had similar observations.

JANA – And you’re probably more comfortable talking about certain things that, you know, maybe your parents aren’t.

AISHA – That’s definitely true.

JANA – Aisha, you had over 40 operations as a child, I read, and you were forced to think about your own mortality at a very young age. And as an adult, recently, in fact, I understand you lost a friend to complications from a rare disease: Marfan Syndrome.

AISHA – Correct.

JANA – You wrote about this in a piece for The Order.  You call her Ellie in the piece.  Tell us about this friend and your realization that she was your death buddy, and why it’s important to have these conversations about death, which you so bravely did.

AISHA – Sure, and I’ll continue to refer to her as Ellie.  You know, we were fast friends.  We met in the ninth grade when I transferred to my second high school that I attended here in Atlanta. And you know, we immediately clicked, we just had a similar kind of quirky sense of humor. And we’re both kind of nerdy and artsy. And so we became fast friends, and we both kind of had these gentle spirits and we’re both pretty sensitive.

AISHA – At the time, I didn’t know about any of her medical challenges, you know, these are things that were kind of revealed over time, but she was aware of my challenges and my medical history. But I think that as things developed with her and with myself, we were able to have these discussions. And I think something that really opened up – and I can’t recall if I referenced it in the piece that I wrote for The Order or not – but my junior year of high school, I was experiencing some significant symptoms that are really to this day undiagnosed, but that I again, would probably in retrospect, perhaps attribute to some stress-related and auto immune related challenges.  You know, I experienced blurred vision and kind of uncontrollable shaking and digestive issues and all these things, and also low oxygen levels. And so my junior here, our family doctor said, It’s too risky for her to be in school, she’s got to be home schooled or there has to be some alternative.

AISHA – So during that time, what I experienced, unfortunately, was, you know, a lot of isolation because, you know, teenagers, health and death and all those things can be really scary. But the one consistent friend I had was Ellie. And she showed up for me, she bought me care packages that had coloring books and snacks and VHS cassette tapes, and you know, all of these things.  She even brought her dog over. They had a couple of Vizslas, and she brought Sasha over.  And you know, we just sat there, you know, on our front steps and I petted her dog for a little while – she was just kind of throwing everything at me that she’d ever heard could help someone who was not well, you know, not knowing much about what I was dealing with, or how this feeling. But she showed up for me, you know, and I never forgot that.

AISHA – And so you know, when she started undergoing open heart surgeries, you know, I did not ask to be there for her as well. And so I think the thing that really stands out in our friendship is the openness and the transparency that we had, because we had a relationship that was truly without judgment. Although we were raised differently and had different ideals about spirituality and faith, she didn’t mock me for my Christian faith. And I didn’t chastise her for kind of this more earthy spirituality that she believed in.  We simply supported one another. And, you know, I think we provided for one another a safe space to confide in and to talk with and to share with.

AISHA – And so you know, I think it’s important that –  again, we live in a society that has so many taboos, but you’re right, that’s changing. And I think the Millennial generation in particular, is very much dedicated to removing the stigma surrounding so many different issues, be it mental health, be death and dying, you know, and so I think that, with that development, with that understanding, our exposure to mental wellness and therapy, I think also makes a difference. That’s something that I’ve definitely relied on throughout the course of my life.

AISHA – And so making those opportunities available with trusted friends is something that I think everyone should do, and I think, obviously, should do that wisely and cautiously.  And look at the types of relationships that you already have in your life, whether it’s with a friend or a family member, and really just pinpoint, you know, those one or two people who are really going to hold that space for you, without judgment and with respect.  Respect is a major component to this.  And trust. So we talked about life and death, you know, we’d had many friends who encountered health situations from which they passed away, and other just kind of tragic accidents, that all occurred.  That all took place in our twenties.

AISHA – And so, you know, it was just kind of, it seemed to be a bit of an anomaly in some ways. And so that really bonded us I think.  Going through those experiences together, and going through that grief together.  When I was just having a tough time and needed someone to talk to, needed someone to lean on, I knew I could pick up the phone and call her. And if we did nothing more than just sit there [inaudible] you know? Just be present with each other. That was fine. I didn’t have to do a whole lot of explaining and she didn’t ask me when I would be over it, you know, and I offered the same to her.

AISHA – And so I think that having that in your life is vital, because everyone will experience loss at some point. I have other very close friends who just haven’t experienced close loss yet in their lives. And so I had more difficulty disclosing things to them and connecting with them on that level. But again, as I said before, that doesn’t make them a bad friend, it just makes that part of our lived experience different.

AISHA – That also helps kind of combat some of that resentment or anger that you can experience toward people who aren’t going through the same things.  You know, you can say, you know, this friend is great for this set of experiences.  I know we can talk to each other about that.  And then I’ve got another friend over here, who I may share the same faith as, or, you know, maybe we have the same taste in music.  However, you know, it doesn’t always have to be something very, very challenging and heavy.  But recognizing that all of your friends serve different purposes, really not just friends but every relationship in your life serves a different purpose. You know, the sooner you can recognize that better that you can cultivate those relationships in very specific and particular ways and make the best of them.

JANA – You must really miss her. She sounds like a lovely friend.

AISHA – I do.  She – yeah, she’s really, she was really special. A wonderful artist, and beautiful soul.

JANA – So tell us how your mom is doing now.  I understand you’re living with your parents, and I wondered how your mom is doing?

AISHA – Sure. Well, I appreciate you asking.  And she – well, I’ll say this: Frontotemporal dementia, unlike in Alzheimer’s disease, the stages, rather than being numbered one through seven, are mild, moderate and severe. Right now, I would say that she is toward the latter part of the moderate phase. And what that looks like for her is that she needs assistance with activities of daily living, whether that be bathing, or getting to the restroom and those sorts of things. And you know, the interesting thing with this disease is that it’s not a linear progression, which means that although degenerative disease, it’s expected that there’s some form of decline continuously, the way that that presents itself in her can change one a day to the next.

AISHA – So there are some days when she is very energized and lucid and is totally aware of who I am and who my father is. And she’s very present in this time and space. And then there are other days where there’s a lot of confusion surrounding, you know, maybe where she is and identifying, you know, myself or my father.   Not as much with my father.  They are actually high school sweethearts, married 44 years this fall, but they’ve been together, you know, probably for about five or six years prior to getting married. So he’s pretty cemented in there, pretty well. So she’ll probably remember him for quite a while, so – but her ability to hold utensils, get a firm grip… so her smaller faculties and her fine motor skills are beginning to deteriorate. She’s still able to hold, you know, a toothbrush or a spoon, but a knife or something like that would not be safe.  And so it’s important to observe those changes physically.

AISHA – You know, mentally, it can be challenging.  I think the most painful part of the disease is – the times when she is more aware that there’s something wrong.  Even if she’s not fully able to pinpoint, she’s not necessarily able to verbalize, Oh, I was diagnosed with FTD and therefore, you know, I’m experiencing these things, she’ll recognize if she’s misremembering something or she’s experiencing a delusion. And that’s frightening for her. That’s terrifying. You know, this is a woman who has owned her own business, and has always been a wonderful mother and wife, and who’s traveled and done all these amazing things and had all these wonderful talents.  And realizing that some of your ability is slipping away and there’s absolutely nothing you can do about it is terrifying.

AISHA – And it’s really painful to watch those moments of realization for her because as her daughter, you know, she’s always comforted me, you know, through all the surgeries and the bullying and everything, she’s always been there for me, to be able to comfort me and then to provide respite and peace for me.  And you know, as much as I try, I know that there’s a limited amount that I can do. I can’t change the circumstances. So you know, I do my best maybe to change the subject, to kind of redirect the conversation and try to reassure her, you know, and to remain calm, which is challenging.  And you kind of just want to cry for yourself and for her in the moment. But I’ve learned kind of how to exhibit self-control in those moments and to be strong for her. And then I get with my therapist, and I let it all out.

JANA – Good.  I was hoping to hear something like that.

AISHA – Oh yeah.  That is vital, that is definitely vital. It’s something that I sought out. And there are so many wonderful therapists and counselors and mental health practitioners who offer low-cost or sliding scale services now, and it’s been really instrumental. I certainly wasn’t a stranger to it, you know, having been a victim of bullying and those sorts of things, I had a history of seeking those services out since I was probably about nine or so. But yeah, just off and on.  What people don’t realize with bullying is that the lasting effects, you know, are anxiety and depression and anything that you would associate with PTSD, which is so commonly discussed in the context of, you know, military veterans, can be applied to any traumatic experience.

AISHA – And so, you know, really though, what’s been helpful for me is that, having sought therapy in the past for those experiences, you know, it made it easier now, as an adult who’s in a situation that’s continuously traumatizing – you know, when you’re caring for someone who is on a steady decline –  it made it easier for me to seek out help.  You know, I knew kind of what I was looking for, I knew what pre-existing challenges, you know, I was dealing with, and then I knew these kind of unique circumstances that I was in. And it helped me to narrow down the search. And it helped me to articulate to my counselor, these are the things that I am dealing with and, you know, here’s what I need from you.

AISHA – And so I was able to share it with her, I need to learn how to cope, I need to learn how to push through the bouts of depression that come with being a caregiver, oftentimes. I need to learn what I can do to get a better night’s sleep, because I’m always kind of sleeping with one of ear open, you know, and for a long time, I was dealing with insomnia, because I was so afraid that something catastrophic is going to happen. And somehow my being in too deep a sleep would prevent getting aid as quickly as possible. But through the coping mechanisms that I’ve acquired, and these different kind of methods that I’ve learned, and then also just through talk therapy and talking it out, things have very much improved.

JANA – That’s good. I’m so glad to hear that.  How old is your mom, now?

AISHA – She is 64.

JANA – Okay.  So she was diagnosed in 2013, right?

AISHA – Yes, so she was 57 at the time of diagnosis.

JANA – Oh, that is young.

AISHA – Yes.

JANA – So you’re home now, you’re taking care of your mom, your dad’s working full-time and you’re going to go back to school in the fall?  Is that right?

AISHA – Correct.

JANA – What’s the plan for you?  And how is this going to affect your caregiving?

AISHA – So I started my Master’s program and the fall of 2018. And I started out just part-time, because I wanted to see what the transition would be like. And education has been something, as I kind of alluded to, before, that my parents have valued very highly. And for a long time, I knew that I wanted to get my Masters and probably go on to pursue my PhD. And in my mother’s moments of greatest kind of awareness and presence of mind, she’s always encouraged me to continue on.

AISHA – And she’s expressed guilt, about kind of delaying my schooling or preventing me from pursuing a career that I really want. You know, and I’ve always tried to reassure her that institutions of higher learning will always be there. But it just kind of worked out, you know, I was able to find a program that really suited my needs.  And Georgia State University is really a special institution, it’s really accommodating to students of all different types of backgrounds and with all different types of experiences. And one of the things that drew me to the program, in addition to it being local, is the fact that everyone that I spoke to expressed true empathy for what I was going through.  And that doesn’t mean that you know, my instructors aren’t hard on me, or that I’ve never received a grade that I was disappointed with. But I also received tremendous support. And it gave me a lot of confidence.

AISHA – And it actually was very therapeutic for me to be able to attend classes.  And a couple of the things that allowed me to do that was the fact that their advanced degree programs, many of the courses, are offered later in the day – so after about 4pm.  So that, you know, allows extra time for my father to be able to come home from work. Additionally, his employer, as a part of their Family Medical Leave provisions, there’s a program that he actually enrolled in, that provides him with a certain number of hours per week.  So I believe it’s about ten hours that he can use for the purposes of caring for my mother.

AISHA – So it worked out really well. You know, when he received that information, I said, Gosh, what would I do with that time? Well, why don’t I go back to school?  So it was really, really great to be able to do that. And, you know, it’s been therapeutic for me to be in an environment that I feel like I thrive in, through learning and – it’s interesting, because there was a transition for me going from being in a pretty isolated setting, you know, mostly just kind of being here with my parents, to now being back in an environment where I have to interact with people. And so you know, as a person who, I’ve always kind of dealt with social anxiety, and so now kind of jumping back out there definitely created some anxiety, but again, with the guidance of my counselor, and just also taking it easy on myself, it’s actually been really, really beneficial.

AISHA – And I’ve loved being in an environment where you can have different kinds of conversations and just really kind of remind myself of who I am outside of caregiving. Realizing that caregiving – yeah, I mean caregiving is certainly a part of my identity and it’s an important part, and it’s been informing the work that I’ve been doing, the research that I’ve been doing.  But it isn’t my entire identity. I love learning, I love volunteering, and so being back at school has allowed me to take part in all those activities. And so, you know, it’s something that I’m really grateful for. I know, it’s not indicative of most caregivers’ situations, but it’s something that I am really grateful that I’ve been able to do.  It’s definitely been a blessing.

AISHA – You know, I have about, probably about a year and a half to go in the program, and my hope is to make the best of it.  And there’s so many wonderful instructors on campus who are conducting research in brain health and caregiving. And I’ve been speaking with various instructors about their research and possibly participating in assisting with that research in various capacities. And so, you know, I know my parents are very proud of me, and I know that I’m supported in that way as well. So you know, if I can tap into resources that can also double as help for my family as well – new developments that most people aren’t maybe familiar with – that’s an added benefit. So yeah, it’s been a really great experience.

JANA – That’s awesome. It sounds like you’ve got it in hand. And not to say it’s easy by any means, but it’s a very finely calibrated system you have there, with your folks.

AISHA – I think it is. Yeah, I mean – and you know, I think communication is key. I reach out to the administrators and the advisors there in the faculty. So you know, everyone knows my name. Because, you know, I’m in constant contact. But I think, again, like I said earlier, you can’t possibly receive the support or the help that you need, if you are not transparent with people and upfront.  You know, and I certainly don’t use circumstances as an excuse or a crutch in any way, but being open and saying, gosh, you know, this is what I’m dealing with. People are able to say, well, gosh, you know what?  Given your circumstances, here’s what we can do.  Or here’s what we can offer you.  Or here’s how we can make this the most positive experience possible.  And additionally, here are resources that the university has that can help you in this journey.  Because we want you to succeed, we think you want to succeed. And so let’s work on this together. And so I think the more people that pipe up and say, gosh, you know, this is what I’m going through, the more normalized these kinds of discussions become.  And then the more resources are available, the more policies reflect the need for support systems for family caregivers, and I think it really uplifts the society as a whole.

JANA – Well, I think people really appreciate honest conversations, too. I think there’s such a dearth of it in this society that we’re in now, or else it’s underground. But to your point, I do think that first of all, you don’t know if you can get something unless you ask.  And people really appreciate the honesty that you’re bringing to the conversation.

JANA – Aisha, I was going to ask how your approach to caregiving has changed or how it has changed you, but from talking with you, it sounds like this has been part and parcel of a continuum for you where you’re constantly having to adjust to outside circumstances, or your own health circumstances that have challenged you. But maybe there has been a way that caring for your mom has changed you.  Has it changed you?

AISHA – You know, Jana, there is.  What I found is between the years 27 and 34, I have really been forced to examine my priorities and my expectations – for the better. Some of it is just a natural consequence of getting older and getting a little wiser.  I think everyone reaches some of these same conclusions, whether it’s about the value of certain relationships or your given career path and what you should be doing versus what you decide to do, or all of these things. But I think that my path to understanding these things was expedited, because I had to really stop and take a look at, gosh, okay, what really matters?

AISHA – And a lot of folks in their 20s, you know, wouldn’t necessarily clamor to spend, you know, Saturday evening sitting on the sofa with their parents. Well now, that’s something that I really cherish. And I can really say that.  And it doesn’t mean that sometimes I don’t wish that my life were more social at times, and that I spent different time kind of with my peers on occasion. But what I found, and what I realized is, I’ve kind of had this revelation or this epiphany, that I’ll spend the rest of my life kind of meeting different people and forming different and new relationships with people, but I only get one set of parents. And once that time has passed, I can’t get that back. There’s no reversal of time, you know, I can’t roll back a clock. And that’s a very real reality.

AISHA – And so I think once I realized that and accepted that as truth, and applied that to other areas of my life in terms of, you know, there was initially this rush to be cemented in a career, and to do all of these things – you know, buy a home. Well, they’re building new homes all of the time.  Yes, there are ebbs and flows, and peaks and valleys in terms of job availability sometimes in the job market.  There’s going to be a job somewhere for me. So I think, kind of understanding that, despite maybe what older relatives and other folks who express concern about me not reaching these kind of milestones, you know, within a certain amount of time – when I kind of blocked all of that noise out and stopped and said, Gosh, you know what?  No, I am perfectly content in this moment, sitting here with my parents eating dinner – because again, this is an irreplaceable moment, I can’t get this moment back – I was able to realize that looking forward in my life, 10, 20 years from now, I’ll be able to look back and say, gosh, you know what, they did the right thing. I did the right thing for me.

AISHA – And the right thing, for me may not be the right thing for someone else. Everyone’s relationship with their family is different. But that’s the lesson that I learned. And I am grateful that I didn’t have to learn it hard way. There’s so many people who, at the end of a loved one’s life, sit there and say, Gosh, I wish I would have spent more time, more quality time with them doing nothing.  I wish that I could have them back for just one day just to sit with. So it allowed me to reach that realization.

AISHA – And so I’m able now to intentionally seek out those moments, and to stay present and to not be as distracted by social media or, you know, all of these things that can really detract our attention from what’s really important. And so I think that’s the way that I’ve changed.

AISHA – I’ve grown to appreciate things that I think, without this experience, I don’t know if I would have been able to have the same level of appreciation. I’ve always kind of been an old soul. So I think I maybe would have understood it on some level, but maybe not with the same depth.

JANA – That sounds like a great place to end, unless you have any last thoughts you’d like to share.

AISHA – You know, I would say, if you have found yourself in a position to care for someone, use what you already know, what you’ve experienced in life, and admit what you don’t know. And use that as an opportunity to learn and, you know, just stay present in the moment. And the more that you voice your needs and the ways that you need to be supported, the better the systems that are in place can move in a direction that supports you.

JANA – We’ve been speaking with Aisha Adkins. She’s a writer, caregiver, advocate, graduate student, speaker and founder of Our Turn 2 Care, a new platform that connects Millennial caregivers with information, resources and each other.  We’ll have a link on the Agewyz website to Aisha’s website, and to her website Our Turn 2 Care, where you can access all kinds of useful information, including simple, easy-to-read documents that will connect you to everything you need to give caregiving your very best effort.  Aisha, thanks for being on the show, an d thanks for all that you’re doing to change the landscape of caregiving, especially for underrepresented populations. You’re doing great work. Hats off to you.

AISHA – Thank you Jana, I appreciate your time.