Connecting ALS

Welcome to Connecting ALS. Today we speak with Kristina Woody on the role of family caregivers.

Show Notes

This week, Jeremy welcomes Kristina Woody on to talk about her role as a caregiver to her husband, Lamar, and to reflect on what more we can do to support family caregivers.
 
For more information on how to support caregivers, go to https://www.als.org/navigating-als/for-caregivers
 
Learn more about caregiver needs at https://www.als.org/research/als-focus/survey-results/survey-3-results
 
Read about the Woody family at https://www.als.org/blog/woody-family-living-als

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

What is Connecting ALS?

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

This transcript was exported on Nov 02, 2022 - view latest version here.

Kristina Woody:
There are so many good people out there, whether you have a direct tie to somebody dealing with ALS or you're the patient, that's been just so encouraging. People want to support this and they want to see people living their best life, even under the terrible circumstances of it.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host, Jeremy Holden. The US Department of Health and Human Services estimates that 53 million people serve as caregivers for someone close to them every year, a data point, certainly familiar to folks living with ALS. And while caregivers often talk about the positive aspects of being able to provide care for someone they love, caregiving also takes a toll. 68% of respondents to an ALS focus survey said they spend more than 30 hours a week providing care. When asked to list their major concerns, 44% of respondents cited depression, 56% cited the lack of time to engage in self-care, and 35% cited decreased participation in hobbies. Which leads to the question of what more we can be doing in support of family caregivers?
We may have answers to that important question soon. In September, HHS released a national strategy to support family caregivers. The report details actions that the federal government intends to pursue, in order to support family caregivers in the coming years. The ALS Association's Public Policy Team is reviewing that strategy and we will be talking much more about that in the coming weeks and months. But in the meantime, November is National Family Caregivers Month.
This year the Caregiver Action Network is focusing on the campaign theme, Caregiving Happens, reflecting the reality that for the millions of family caregivers across the country, caregiving needs don't always arise on a predictable schedule. They can arise unexpectedly, they just happen. Or as the caregiver Action Network put it, caregiving happens when you're grocery shopping or in a meeting. Caregiving happens when you're trying to get out the door to go to work, and it happens when you least expect it.
To help us kick off National Family Caregivers Month here on Connecting ALS, I'm joined this week by Kristina Woody. We introduce listeners to Kristina's husband Lamar a few weeks ago. Kristina is a working nurse who unexpectedly found herself in the role of caregiver for Lamar, after his ALS diagnosis. Kristina, thank you so much for being with us this week on Connecting ALS.
Kristina Woody:
Absolutely. Thank you for having me.
Jeremy Holden:
Yeah. Well, listeners had an opportunity to hear from Lamar a couple weeks ago, so they probably have some familiarity, but let's just start and dig into your connection to ALS.
Kristina Woody:
Sure. My husband, Lamar Woody was diagnosed about four years ago. I am a nurse by profession, but that is not usually the particular patient population that I deal with on a regular basis. We know this is a still fairly rare disease, but sort of my professional background with patients is more post-surgical. I've done a little bit of pediatrics, things like that, so my direct connection more so is just through my husband.
Jeremy Holden:
Neurologists could go their entire career without diagnosing someone with ALS or encountering that. It's certainly true of other health practitioners. Your background in healthcare and in medicine, did it inform how you kind of approached the diagnostic process? Do you feel like you started to have some guesses as to what might be going on or how did your background in training inform how you approached both the diagnosis and then life the last four years with ALS?
Kristina Woody:
Sure. Well, I guess professionally, when he first started having symptoms of, mostly what we saw was weakness, occasionally having seizure issues, but really just sort of that physical decline was so noticeable for him because he's always been athletic, very active, and so to just see him drop a lot of weight, lose a lot of muscle mass very quickly, while still engaging in what he had always done, was just a crazy thing to see. But my way of processing things as a nurse is always horses, not zebras. You kind of start looking at what do we know? What can we fix? What are the obvious signs and symptoms to address first before you start thinking of the zebra, something as rare as like ALS that was nowhere in your radar.
I guess he is also been diagnosed with type 1 diabetes, and so we had just started looking into so many things just related to surface issues that we knew about. But just once we saw that his symptoms were getting more complicated than that, and even his physicians were like, "We need to take closer look at this, because none of that is normal behavior or normal..." I think professionally I just stood on the grounds of, let's just work with what we know. But I think as a spouse, it was pretty obvious to me, this could be bad. I've never seen him have some of these symptoms or have this weakness or be fatigued like this. And I think so on a spouse level, I knew we were probably dealing with something bigger.
Jeremy Holden:
Yeah and of course, you get that confirmation that you were dealing with something bigger with the diagnosis. I want to talk about your role as a spouse, as a caregiver. We are approaching National Family Caregiver Awareness Month, an opportunity to reflect on all the work that family caregivers do. Talk to me a little bit about your role as a caregiver for Lamar.
Kristina Woody:
I think we're kind of in a bigger transition of that. Like I said, being a nurse, I work full time still, so that I think in just the last few years, while he's still been able to maintain a good bit of mobility and independence, we've kind of stayed that course of normal life, I'm throwing up my air quotes right now. Normal life, whatever he could do on his own, we let him do that. And being kind of young and still in our working thirties age, full-time work is just kind of necessary for us right now or for me to continue, especially since he left work.
But I feel like just in the last month or so, we've kind of talked about that and some of the limitations that he's had and a little bit of decline that he's had recently that it might be time for me to try to find a way to pull back, work remotely, whatever that may look like, to be more of a caregiver at home for him, just since his needs now are kind of there. I think just I am appreciative that I have that background in nursing and that I have a decade or more of experience under my belt, at least to bring that to the table. But either way, it's hard just to be alongside as a spouse and have to watch that.
Jeremy Holden:
Yeah, well, I wanted to ask about that, because your background as a nurse, I think it'd be easy to sit here and think like, "Oh, you trained for this, you've got this." But this is your husband and so it's a different dynamic. I'm sure that the bedside manner is probably quite a bit different when you're talking about your spouse as opposed to a patient. Not that you don't bring a level of care to patients, but it's different, I would imagine.
Kristina Woody:
Yeah, definitely. Sometimes I joke nurses sometimes were looked at as we're just the overpaid waitresses, sometimes that's how people treat us in the hospital.
Jeremy Holden:
I do not think that, but I'm sure that's how you get treated. It's terrible, but I'm sure.
Kristina Woody:
Right. But at home, yeah, it's different. You can kind of deal with a lot more at the hospital because yeah, you're trained for that, it's not always scary in the moment, even when you have critical patients, because that's your job, that's what you're trained to do and you see it every day. But at home it's different. And I tell him all the time, it's hard for me too, even though there's things I know you're going to go through.
And educationally, I understand that and I know what to expect and maybe how to manage it, but it's still hard because you have a different level of care and compassion for this person that is your family, that is your spouse, and it just hits a little bit closer. But as we go through different things and he's battling different symptoms, I tell him too, I'm like, "I may have all the knowledge in the world of how to help you, but I don't have a CT in the back room. I don't have lab." There's a lot of things, even though I would know what to do, I can't do those things at home, so it still presents its challenges, even having a medical background for sure.
Jeremy Holden:
Yeah, that makes all the sense in the world. You talked about being a spouse, being a working professional, also a working mom. Talk to me a little bit about juggling that ball.
Kristina Woody:
Yeah, I think we had done our interview with the ALS Association and I told him, I was like, "I have the trifecta responsibility. It's like professional caregiver, home care caregiver, spouse, mom. It's all the things." This has just been the crazy transition for us with, if ALS had never entered our life, we would be, again, with my air quotes, our normal just 30 year old, young working family. Everybody, you just think about that in America, it's everybody's busy. Everybody's running the circus when you talk about that.
And then you throw in something as complicated as ALS and it's a three ring circus on fire, basically. My daughter, she's very active and so we try to keep life normal for her, and she loves to play sports. All of those things are time consuming, but I think she bears with it really well and understands that as a family, ALS brings some limitations, whether that's time or physicality, and we just got to roll with it. It's busy. It is definitely busy, and I do feel pulled in a lot of directions a lot of times. And again, that's kind of leading us to, as she's getting older and more active and Lamar's limitations a little bit more now that it's probably time to transition home as much as I can.
Jeremy Holden:
And for folks listening at home, you've talked about being a nurse, but it's more than that, you're a traveling nurse, right?
Kristina Woody:
Yes.
Jeremy Holden:
You're going to different places, so being home is not just being home from the hospital, it's being home from a different city.
Kristina Woody:
Yeah, sometimes. I actually had just finished up an assignment about a month ago in Atlanta, which is two hours from where we live in Auburn. Yeah, I was doing commuting on top of working, it was a lot. And I think just after that assignment I was like, "I do need just some mental rest for myself," so I'm going to take a little bit of time off. And again, we've just had some things lately where I'm like, "Eh, this may be extended time off until I figure out a new plan." There's always like, what's the plan A, B, C, D, E, F, G? We just keep going down the line.
Jeremy Holden:
Yeah. You mentioned your conversation with the ALS Association. You and Lamar have partnered with the Association to try and help raise awareness here through the end of the year. Talk to me a little bit about the decision to share your story and what you hope people who may not have a personal connection to ALS, what do you want them to know about this disease and the fight against it?
Kristina Woody:
Sure. Yeah. I think we've had a lot of conversations about this lately just because since partnering with the ALS Association, just so many new resources and connections have come out of that, and we are just blown away and truly grateful and it has been a fantastic experience and we were always kind of engaged as far as social media or whatever through our Alabama Chapter and things like that. But this has just really kind of opened our eyes to what the community of ALS that is actually out there in the world, and even surprisingly so close to where we are. And so, that's been just incredible to get to know new people and all of that. I think it's just leading us to finding new resources and more so addressing it even in our life.
I think the last few years we've been blessed that Lamar hasn't had major issues up until kind of this point, but it's almost been like ALS is this big elephant in the room that we've kind of just like, "Yeah, okay, it's there. We know we're going to have to deal with it." But it's almost again, with this idea of let's try to live as normal as possible and see what happens. It's kind of been the elephant in the room, pushed in the corner, and now that it's kind of come to the point where we have to pay attention a little bit more, because things and the way that we balance life and the way that we balance and manage his health, is looking a whole lot different now.
It's just been this amazing timing that as all of that is going on in our personal life, gaining these new connections and community with ALS Association is just this perfect blessing. Just that we have that and our eyes are being opened to so much more at a time in the diagnosis and the journey where we need it the most, sort of thing. That's been a great experience and really helped us to work through it a little bit better. The last four years, it's like, "Okay, we're just survive the crazy and whatever happens, we'll deal with it." But now I feel like we're getting a little bit better grip on emotionally and mentally processing that diagnosis a little better, and trying to set in motion, "Okay, what is our life really going to look like on a day to day," and managing the diagnosis a little bit better.
Jeremy Holden:
We talked a little bit about your role as a caregiver, and I mentioned that November is Family Caregiver Awareness Month. What more do you think we could do just as a society, as a culture, to support family caregivers?
Kristina Woody:
Years ago, its interesting, I had posted, I'm a big TED Talk person and I love listening to them and especially sciencey healthcare ones. And there was a great one, I can't remember the title at this point, just about how caregiving really should be seen in our society, in our healthcare system in America, as a full-time job that should be supported and however that looks financially or whatever, but that, that's important for these terminal, chronic, severe illnesses that, that is eventually going to be the best thing for them to have a full-time caregiver at home. And being a professional nurse, we see that all the time. I work in more so acute care settings where it's, even as sick as you can be, the plan is that you won't be here forever. Getting home and how your life is going to, being managed outside of the hospital doors, is huge and who's going to do that for you?
And you're not always dealing with somebody like me who has a medical background and has that knowledge where you can send that patient home with somebody who at least has some medical whereabouts of about them. I think supporting caregivers is so important, not only just for what is that specific caregiver, do they have the knowledge? Do they have the education? Do they have the resources to be able to manage this? Are they mentally prepared to do that? Even just something simple, what does our house look like? We deal with that with total knee patients, "Well, we can't send you home if you got 30 stairs in your house, so rehab, you go and then we'll figure it out." But that's also ultimately going to give, we have better supporting resources or finances for a caregiver role, then ultimately that's going to be better for the patient, for sure, that their care is being managed properly and have the resources that they need out of their caregiver, their full-time attention and everything to be able to stay at home and help them.
Jeremy Holden:
You mentioned the mental preparation, and I know respite care and burnout is another big issue that we hear about from caregivers, something that needs to be managed. Well, Kristina, I know you're wearing many hats and juggling many balls, and I can mix many more metaphors to talk about just how little time you have, and we're grateful for the time that you shared with us. But before I let you go, any closing thoughts as you continue down this road of sharing your story to try and help raise awareness about the fight against ALS?
Kristina Woody:
Oh gosh. We've just been blown away by the community. And I think just my sort of impression is just that there are so many good people out there, whether it's you have a direct tie to somebody dealing with ALS or you're the patient, and that's been just so encouraging, that there's such a strong community, whether you're directly affected or not, that people want to support this and they want to see ALS managed well and see people living their best life, even under the terrible circumstances of it.
And so that's just very encouraging that there are people out there, even if you don't fully understand the illness, they want to help and they want to know and learn. And so I think just to hopefully encourage more people to want to know about it and just care about others that are going through it and that experience and know it's not something that you're just going to be like, "How are you feeling today? You better?" I think that's the worst thing Lamar ever hears, he's like, "Please don't ask me if I'm better."
Jeremy Holden:
I've heard that before. Yeah, it's totally understandable.
Kristina Woody:
Just to want to learn. It's something that probably people have heard about, but just maybe don't know a lot. And so yeah, just always keep an open mind to want to learn about it and how you can support people. You can't fix it, but that doesn't mean you can't be a supportive role to a patient or a family with it.
Jeremy Holden:
Well, Kristina, thank you again so much for your time this week. It's been an absolute joy talking with you.
Kristina Woody:
Thank you.
Jeremy Holden:
I want to thank my guest this week, Kristina Woody and the entire Woody family for sharing their story as a way to help raise support and awareness for the fight against ALS. We will share a link in the show notes to the HHS caregiver study mentioned at the top, as well as a link to the ALS focus survey data on caregivers. If you like this week's episode, share it with a friend, and while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is Citizen Race Car, post production by Alex Brower, production management by Gabriella Montekine, supervised by David Hoffman. That's going to do it for this week. Thank you for tuning in. We'll connect with you again soon.

ConnectingALS_110322_Ready1_YouTube (Completed 11/02/22)
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