AS: 034 Caring without a Manual: How to be a Caregiver without a PhD

Intro

Welcome to the Accessibility Solutions Podcast, hosted by Linda Hunt, an award winning accessibility consultant, speaker, and author with over 30 years experience in senior management rules and indeed passion for creating inclusive environments, Linda brings us unmatched expertise and credibility to our discussions.Join us as we explore the Transformative Power of accessibility and inclusion in today's world. Through captivating conversations, Linda shares her wealth of knowledge, provides practical solutions, and sheds light on the latest trends and investments in the field. Whether you're a business owner or disability advocate, or simply curious about the world of accessibility, this podcast is your go to resource. Get ready to unlock new perspectives, breakdown barriers, and embark on a journey of empowerment. Are you ready to create a more inclusive world? Let's begin. Welcome to the Accessibility Solutions Podcast.

So welcome listeners to the Accessibility Solutions Podcast. Thanks so much for joining me this week. This week, I am very pleased to have a guest with us and my guest today is Monica Vest Wheeler. And Monica has a talk title captioned "How to be a caregiver without a PhD”. For those of you who are aware, caregiving is something very near and dear to my heart. As a person with a disability who could not live my day to day life without the help of my caregivers, Monica is focused on the emotional everyday challenges of family giving. She is engaged with patients, survivors, families, caregivers, and healthcare professionals nationwide and has written extensively on individuals and families facing catastrophic health events. She has volunteered at 150 stroke and brain injury camps as a discussion leader and photographer, unafraid of asking and answering tough questions. Monica says, allowed what most people are hesitant to address about these life issues. So welcome Monica to our podcast. Caregiving is, you know, such a topic that I don't think gets enough attention and I'm really glad for the work that you're doing. So why don't you just kind of take it away from your perspective in terms of what and how to be a caregiver without a PhD and we'll go from there.

So well, what I have learned is that most people, especially those I work with, a lot of folks were brain related injuries, illnesses and diseases and then other folks with cancer. And when there's a medical emergency or serious diagnosis that a lot of people they're thrown into these family caregivers. The family members are thrown into situations where the medical people are throwing terms at them, this and this and this and this, don't you know this, don't you know that. And then at the end of the stay, which is being shortened more every time by insurance restrictions, they're given this stack of papers and here you go. Let us know if you have any questions. And this is something that I have a lot of time talking to medical professionals such as nurses, physical therapist, occupational therapist, speech language, I can vouch on that one speech language pathologist where what they say and do can really impact the long term recovery or lack of recovery on the part of the individual plus the family. And we've got to understand that, you know, people can't absorb all of these. They are hit with a shock of an incident, a diagnosis that shatters the world. And then all of a sudden they're expected to know and immediately absorb all this information being thrown at them, whether it's medical, legal, financial, and human beings can only absorb so much. And this is where I'm trying to help specific professional caregivers learn to work with more than just the patient that they really did be working with the family for the long term best outcome for everybody. So this is something that I have just really caught on to. And we've had these professionals who volunteer at the stroke camps and brain injury camps and by the time the weekend's over, they view their jobs and their roles so much differently because they've been spending 48 hours with stroke camp, stroke survivors in their family caregiver. And the same with the brain injury camps that they only get to see people in the emergency state or in their therapy in and outside of the, you know, the clinic setting. Life has still got to go on. And this is what is often forgotten. Insurance companies don't think about it. You know, they cut the cord. And that is what is so difficult because I've talked to a lot of folks with the brain issues, injury or stroke where, you know, the patient, they don't even understand what's being, you know, they're being asked to do immediately because of the brain damage and then all of a sudden your 10 sessions are over. And that is you know, that is it. Sometimes if you're not making the progress the insurance companies think you need to make and they just don't get brain issues, they equate it with a broken leg, a heart attack and something else. And the caregiving in this area is becoming a tsunami. I mean, Alzheimer's caregiving loans will bankrupt this nation.

Yeah, I totally agree. And you know, very much of the aging population, we look at caregivers as the kind of that unpaid healthcare provider that is such a vital service because the healthcare system, you know, does not recognize that caregiving is right along the continuum of the so if someone, like you said, if they've had a stroke or they've had a brain injury or whatever, the rehabilitation, all that's required, you know, they'll get you into a rehab hospital, they'll do this and the other thing, but they don't realize all along that continuum is the fact that there's a caregiver associated with that person and quite often an unpaid caregiver because it's family member that is taking on the burden from the healthcare system. This family member is now forced into a caregiving role. And I can tell you from,you know, living 25 years with multiple sclerosis, my family says has been a caregiving family. It's a disease that affects the entire family.

And that's what a lot of people don't understand. And when I lead discussion groups for the caregivers at camps, we have the survivor struck survivors going one group and then the caregivers another group. And most often I lead the caregivers and I'll ask them, when was the last time somebody asked you how you were doing? They're always inquiring about how so and so doing or whatever. And a lot of them kind of stare at you like the deer in the headlights. Some of them can't remember the last time someone asked how they were doing.

Yes. And the health effects that it has on the caregiver is now, you know, another burden on the healthcare system, their stress, their burned out and all because there's not enough supports and services there for not just the person with the diagnosis, right, but the supports that need to be there for the person that's in that caregiving role. And you're right in terms of, you know, not having a PhD. I remember my mom was a nurse, but she ended up with kidney disease and was on dialysis. And it was my dad that was her primary caregiver. You know, he was driving her to dialysis, every other dialysis, every other day, 30 minutes away for our appointment. So here he is five hours every other day, dedicated to being, you know, a caregiver for my mom who, as I said, she was the one that was a nurse. So here they are in their golden years, supposedly enjoying retirement and, and they're in that person that's not well dealing with an illness. And then my dad or usually and it is a significant other that's now, you know, a caregiver forced into that role. And quite often it is the, you know, I was born, you know, an adult child that maybe in what we call that sandwich generation where they're looking after children but they've got aging parents and so they're in a caregiver role for them as well.

Well, one thing I have noticed too, that especially like stroke and brain injury there, you know, a lot of young people in accidents or stroke age is coming down, younger and younger people having strokes. So all of a sudden parents who thought, you know, that they could go on to do their own thing or are becoming caregivers to their adult children just as you mention. And it's more common today because a lot of these young people didn't survive five, 10, 15, 20 years ago. You know, thank God for the medical technology and everything and, you know, the new techniques and the new medicines and stuff like that. But society does not know what to do and how to handle someone who has a long term disability. Okay, well, this doesn't involve me. So, well, you know, why can't you figure this out for yourself? And this is why caregivers, we are in serious trouble here. You know, 13 years ago I lost a dear friend who was an Alzheimer's caregiver. And I watched her over the course of 2009 lose 100 pounds. She finally had to put her husband in an Alzheimer's facility in October of that year. She then had a stroke in one eye which left her blind. And then she entered the hospital in January and died. They could not find a medical reason, specific medical reason under there other than her body simply worn out. She had supportive kids, you know, she had supportive friends, but, you know, the last thing she told her daughter was take care of yourself. And, you know, to this day, I carry that message from Molly that you've got to take care of yourself. And you know that, think of, you know, when in the airplane, the yellow thing comes down with the oxygen in it and everything. This is why it's so important. But a lot of caregivers, too, are putting off their own needs, their spawning annual checkups. I had another dear friend who was a caregiver. She kept putting off going to the doctor, but by the time she went, she had stage 4 cancer.

Yeah, and that's honestly, that's exactly what happened with my parents. My mom passed away and within a year, my dad was diagnosed with stage 4 cancer. You know, he had spent, you know, the last number of years of my mom's life as her primary caregiver. And certainly it's not looking probably after himself and maybe looking at his own early warning signs because they were spending, like I said, five hours a day, every other day at the hospital for my mom's dialysis treatment. So yeah, it is very much, you know, a situation where the healthcare system will help you with that medical side of things, but, you know, the important requirements for someone that needs more than just that primary care. They need a caregiver in their life in order to, you know, activities of daily living. I, for example, can't put myself to bed at night. You know, it falls upon my husband to put me to bed. And that's, you know, that's something is a caregiver role. And as the population ages, so does a person that needs the care because we're, we have an aging population then on, but on top of that, the primary family caregiver, quite often the spouse is also aging. So now you've got, you know, the fact that, you know, they themselves are going to be, as you said, you know, in a role where they too might need a caregiver too. And I, I've talked to people who dealing with, you know, both parents that are alive in their 80s, you know, one's got, you know, dementia, the other one's got chronic health issues and they spend all of their time running to doctors appointments and, you know, therapy appointments and all of this kind of stuff. And it's, you know, for a lot of people, it's like a caregiving as a full time job,

It is. And even if you're not doing a lot of the physical, you are carrying that emotion with you because somebody's life is in your hands. And, you know, I have had in the last 12 years, I've had five family caregiving situations. I oversaw the care of my father in law when he was diagnosed with Alzheimer's and we had to put him in an Alzheimer's facility because it became a danger to himself and others. And that emotional part was draining. I was living by my phone, waiting for it to ring, to find out what shenanigans he was up to now. And, you know, then I lost my mom. She had lung cancer. It was like, you know, 10 months I kept going back and forth between Indiana and Illinois, my home. And it was draining 70% of my time. I was doing that and she said, you don't have to, but somebody's got to be here. And I'm an only child. I mean, it was my mother and everything. And then, you know, other family emergencies came up where I was the only one available and you just carry. So each time I had a different role as a caregiver.

I was fighting with, you know, the medical people out California trying to get my cousin care that he needed. And then I'm fighting with, you know, other people and even with my own mom when she just suddenly said she didn't want any more treatment and she announces this in the doctor's office without letting me know first at least. And but there are so many emotional dynamics going on there. And that's something I really try to encourage families to have some open communication and especially you know, bringing more people in as backup because a lot of caregivers, they were refused to ask for help. And when they're asked, is there anything you need? What do we do? Oh no, I'm fine, I'm fine. I tell them, make a list, put your pocket.

Yeah, and then you'll find out who really is willing to help you. And don't be afraid.

There's also, you know, I, my dad, as I said, primary caregiver to my mom, but they grew up in, you know, that age where they were too proud to ask for outside help, which, you know, they really did need. Whether it was a respect for my dad to give him a break or, you know, some of the stuff that he was, you know, doing for my mom, they certainly could have had another some support worker come in and do that, but it was just a think, a thought process for them that, you know, you didn't ask for help, you could manage or you could do it on your own. And I think a lot of seniors, especially, you know kind of come from that place where you'll handle it, you'll deal with it, you'll, you'll whatever. And that's, you know, not always the way to go either.

Caregivers are afraid to make mistakes. It was on them so much.

I appreciate you coming on the show and bringing forward such a very important topic, especially the work I do in the field of disability and accessibility. Caregivers are just, you know, such a critical component for anyone that's living with a disability to be able to, you know, manage and live their everyday lives with the support that they require. So just as we wrap up at any last thoughts you'd like to share with the audience in terms of, I think I liked your, what do they call that when they give you the airline though, put your own oxygen mask on first. How you said the yellow thing that drops down, I thought before recording, put your own mask on first.

Because it's not sure, and people, they don't believe that until, and that's where I'm just trying to educate generally in a society as a whole that respite care. You do not know, an hour of you going and sitting with someone and giving a caregiver break could keep them alive. And because we got more caregivers who are beginning to die now before the person they're caring with. And I've seen it's increasing. And our society is relying almost too heavily on family caregivers right now. And if we don't focus more on this, we are in a lot of trouble. And if we think it's a pain to nail all persistence, it could be a lot, lot worse.

That's just so true. I mean, the system is just chronically underfunded. You have this entire service being delivered by unpaid caregivers not being delivered by the healthcare system.

And it's like I said, it's a critical service that is burning out people on both ends. People that are caregivers next thing, they're gonna be the ones that are gonna need a caregiver because they burned themselves out.

Exactly. And thank you for highlighting, I mean, this is such a critical area. This is like, so this kind of what I, I preach to that just because of something is happening. Your life's not over. And that's what I tell my survivors. You're still here for a reason.

Yeah, we appreciate that. So thank you again, Monica, so much for joining us to those of you who are listening to this episode of anything that Monica and I have said resonates with you or you think that you know somebody that would benefit from the information shared on this episode. Please share the episode with your friends or family that may need to hear this message or caregivers out there. Please understand that you're not alone. There are resources. And as Monica said, yeah, make sure you put on your own oxygen mask first, because information is in the show notes. As you are reading through those, you feel like reaching out to Monica for further information about the work that she does. She can certainly give you some very valid information in terms of caregiver resources. And until next time, thank you so much for listening, and we will talk to you again soon. Cheers!

Thank you for joining us on the Accessibility Solutions podcast hosted by Linda Hunt.

We hope these discussions have inspired you and provided valuable insights into the world of accessibility and inclusion. If you're ready to take the next steps in creating an accessible and inclusive environment, we invite you to book a personalized Accessibility solutions consultation with Linda. As an experienced accessibility consultant, Linda will work closely with you to develop innovative solutions tailored to your unique needs and challenges. Together, you'll navigate the complexities of accessibility regulations, explore inclusive design principles, and implement practical strategies to ensure equal access for all. Don't miss this opportunity to make a real difference. Visit our website at solutions for accessibility.com.That's the No.4. So solutions for accessibility.com. Schedule your consultation today. Let's transform your space into an inclusive and welcoming environment for everyone. Thanks again for listening to the Accessibility Solutions podcast. Stay tuned for more empowering episodes as we continue our journey towards a more accessible world.