Maybe I Can with Debbie Weiss

Ep. 103: Navigating Family Caregiving

• Debbie Weiss

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In this episode, we delve into the world of family caregiving, exploring its roles, challenges, and support systems. We define what it means to be a caregiver and discuss the various responsibilities involved, from physical assistance to emotional support. We address common challenges such as emotional stress, financial strain, and relationship impacts, emphasizing the importance of self-care and the health risks associated with caregiving stress. Practical self-care tips and mental health resources are shared to help caregivers maintain their well-being. We also highlight available support, including community resources, professional services, and organizations dedicated to assisting caregivers. For those new to caregiving, the episode offers advice on building support networks and approaching the role with resilience. 

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Speaker 1:

Hello and welcome to Maybe I Can, exploring possibilities, one sprinkle at a time. If you've ever found yourself asking is this all there is to life, then you're in the right place. I'm Debbie author, speaker, entrepreneur and coach, and every Tuesday I'm here to share a sprinkle of hope and inspiration. Together, we'll uncover the more More joy, more fulfillment, more prosperity, more fun. We'll share stories of transformation, actionable tips and that little nudge you need to take the next step. So let's embark on this journey of discovery and say maybe I can to a life filled with more, ready to find out. Let's get started. The Maybe I Can Show starts now.

Speaker 1:

Hi everyone, and welcome back to the Maybe I Can Podcast. I'm your host, debbie Weiss, and I'm so glad that you landed here today because we are continuing with our November theme on family caregiving. And maybe, if you're new to this show, first of all welcome, and if you're a returning visitor, well, thank you. Let me share with you and tell you why family caregiving is so important to me that I'm devoting the whole month of November to it, and I chose November because November is National Family Caregiver Month. You see, I have been a family caregiver for over 40 years to three different members of my family, to three different members of my family my father for 30 years, my oldest son, who was diagnosed on the autism spectrum at two and then added other diagnoses, including anxiety and depression, and then my husband, who also suffered from anxiety and depression as well as a variety of physical illnesses. And so I've spent the majority of my life caregiving. And the funny thing is and I think I've mentioned this in a previous podcast I didn't even know that what I was doing had a formal name. I never thought to seek out others who were also caring for their loved ones, because I just I wouldn't have even thought where to look. Sure, sometimes maybe you run into someone who's in the same boat and you know you kind of share your stories, but it's not the same. And nowadays I'm so happy to say, like so many things that I think I think about when my son was first diagnosed with autism and he's 23 now, so that was 21 years ago when my son was diagnosed. When my son was diagnosed, literally the doctor said to me he has PDD-NOS, which is no longer a diagnosis in the code book anymore, but it stands for pervasive developmental disorder, not otherwise specified. So it was an autism spectrum disorder and he handed me a pamphlet and sent us on our way. Now, luckily, the resources have grown and the word has gotten out thanks to a lot of people who've been very vocal and have gotten in the press, and I'm hoping now, with mental health, that we are starting as well to get the word out there, and I hope that 20 years from now I will see as much growth in that area as I have in the autism world.

Speaker 1:

What is a family caregiver? Because you might be thinking I don't need to listen to this because that's not me, but here's the thing. Chances are, and I can't. I wish I saved the quote. I know I quoted this a couple weeks ago, but Rosalind Carter said that everyone in their life will either be a caregiver, need a caregiver, be a caregiver currently or in the future, or need caregiving themselves. All of us, in one way or another, will be affected by family caregiving.

Speaker 1:

A lot of things have struck me in that. Until it happens to you, you just can't understand it. And it's that way with everything. The other day, one of my friends was talking to a mutual friend of ours and she was saying you know, when you lost your father and I saw how upset you were, you know. When you lost your father and I saw how upset you were, I understood. But you know, a few months later, when you were still upset, I was thinking to myself, gee, maybe she needs some help, because this seems ridiculous. And then she said and then I lost my mother. And I thought I got to go back and apologize, because now I understand exactly how she felt. And I had the same experience recently with talking about the feelings of being a widow, and when you talk to someone who has never experienced that, they can't relate, even though they want to. And I think caregiving is the same thing. Each of our individual circumstances, of course, are different, but in general, as caregivers, I think that there's a lot of commonality amongst us.

Speaker 1:

First, let me read you what the CDC says. The definition of a family caregiver is A caregiver provides care to people who need some degree of ongoing assistance with everyday tasks on a regular or daily basis. The recipients of care can live either in a residential or institutional setting, range from children to older adults and have chronic illnesses or disabling conditions. And so, as I said, in my case it was my father, who was 46 at the time had a massive stroke and survived. He did wind up living in different institutions I don't want to call them institutions facilities. He didn't live it. They were different facilities and so, even though he didn't live with me, I was still his caregiver. I was responsible for paying his bills I gosh. For a while I did his laundry, I took him to doctor's appointments. When it was a holiday, we went to relatives to celebrate. I picked him up, I brought him back you name it, basically and I did it and I handled his money, and that was tight. So quite often, when money became an issue and one facility would raise their prices that we couldn't pay for it, I would either have to lay out my own money each month to cover the rent or, at one point, when he lost his private disability, I had no choice but to move him to a different facility.

Speaker 1:

Let me give you some statistics about family caregivers, and some of these actually most of the ones that I have they're from 2020. So we're almost four years, five years later, and I'm sure that they've changed significantly, because in 2020, there were about 53 million family caregivers in the United States. 53 million, that blows my mind. That's 21% of the population is currently caring for a loved one, and 24% are caring for more than one loved one at a time. More family caregivers report that their own health is fair to poor, and 23% of Americans say that caregiving has made their health worse.

Speaker 1:

I'm actually shocked that it was only 23%, because many times, caregivers just ignore their own needs. They don't have time. Three quarters of caregivers that's 78% report regular out-of-pocket costs relating to caregiving, with about $7,300 is the average that they spend. And another area that has really come into the forefront lately is how caregivers are suffering when it comes to the workplace. 61% of caregivers are also holding down a job, with 60% of them working 40 hours or more. With 60% of them working 40 hours or more, and many caregivers have to either go from full-time to part-time they have to switch jobs to a place that's more flexible or understanding, or they have to stop working altogether. Also common among caregivers is stress, emotional stress 72% report having to miss a meeting or event, having trouble balancing their work, family and caregiving responsibilities. It is not an easy road. Let me tell you so back when well, it doesn't matter when I was really actually getting a designation in caregiving and learning that there are different stages of caregiving and I never really stopped to think about that, so I've titled them something a little different. This is my own little spin on it. But the first stage is the catapulted caregiver.

Speaker 1:

Either there's a medical crisis or diagnosis that thrusts you into the role of caregiving, and when this happens, we're shocked, we're scared, confused. I mean, they handed me a pamphlet and said go learn about autism. We got a call with my husband from his oncologist, who he was seeing because of some blood work issues, who said you have MDS, mds what the heck is that? Thank goodness for Google. So you read all this, you hear all this, you sit there and you're thinking about all of the possibilities and what's going to happen to them and what will they need to do and will they be able to work, and are they going able to work and are they going to live, and how long are they going to live and what kind of care? I mean it's almost too much to comprehend. And then you start thinking about what's going to happen to my life in so many different ways, right? Especially if it's a terminal diagnosis, as in the case of my husband, obviously with my son as well and my father.

Speaker 1:

I was only 17 when I was thrust into that role. It changed my life significantly Over the 30 years that he lived. You know, it ebbed and flowed and in hindsight I can say that I learned many things about myself in that role. Certainly there were some positives, but more often than not I was a bundle of stress. And then, after you're done being catapulted, you maybe get a chance to catch your breath and get some of this information in your head and try and process everything.

Speaker 1:

You become a critical caregiver. Now you're inundated with maybe different services and agencies and, depending upon your situation, trying to figure all of that out and setting appointments and gathering information, and it becomes overwhelming. Maybe you're not sure who to listen to and you're thinking what? Why did I get placed in this situation? And yet you're so worried about your loved one. Your own life gets pushed into the background. And when you do have a job, when you have a family, it really it makes the juggling just practically impossible, especially in the beginning when you just are overwhelmed. When you finally get to the next stage, you're a cruising caregiver. You kind of get it. Now You've accepted that this is a part of your life. You realize you can't fix everything. You want to fix everything but you don't have superpowers and you can't fix everything and you just have accepted that fact. You've also kind of figured out how to calm all the swirling tornadoes that are running in your head the what ifs and all of those kinds of things and maybe at that point you're at a stage where you're ready to consider your own self-care.

Speaker 1:

And I reached that point when I was in my late forties and my father was at the end of his life. I didn't know how long he was living in a nursing home at that point and my oldest son, who had the special needs, was maybe like eight or nine at the time and you know I had spent I don't know. I think when he was about 15 months old. I knew that there was some kind of delay and since that time he had been in therapy and I had learned by that point, eight or nine. I was practically an expert in IEPs, which stands for individualized education, education plan and case managers and inclusion and so many things that before you know, eight years prior, did I ever think about, did I ever care about, did I ever even hear these terms? No, but family caregivers become experts? No, but family caregivers become experts.

Speaker 1:

And being a mom of a child with any type of special need brings parenting and caregiving to a whole other level. Because if you're a parent, you know I don't have to tell you that the love that you feel for your child is different than any other type of love. And when you see them struggling and you can't do anything about it or you just can't do enough, you don't know what to do. It's a horrible, horrible, horrible feeling. And so caregiving for my son and trying to problem solve all of the time because especially at that age, new social situations were coming up, so new roadblocks for him, that I didn't see, you know, he would hit one milestone and I feel like, ok, you know, great, be so happy about that.

Speaker 1:

And then it was on to the next challenge and having to deal with that along with running my insurance agency. My younger son is 21 months old, younger, so obviously at six or seven, whatever he was, he required a good deal of care. And then figuring out when can I get to the nursing home to see my father to make sure that he's getting the care that he needed, and I knew that I didn't have so much time left with him. So instead of going a few times a week, I really was trying to get there five or six days a week.

Speaker 1:

After that I knew I couldn't do it anymore. My eye was twitching, I had heart palpitations, I would cry or scream at the drop of a hat and I realized I had really come to a low point. As a matter of fact, I think it was it might've been Mother's Day or something and I got annoyed at something to do with one of the boys, including my husband one of the three of them, I don't even remember husband one of the three of them I don't even remember and I freaked out. I freaked out, I was screaming like a crazy person and I was so angry I actually got in my car screaming and crying like this is not who I am as a normal person and I didn't know how I was going to drive and there's a park right behind my house. So I wound up just driving literally around the block, not even parking in the park, and screaming and crying and banging the steering wheel, and once that all got out of me I feel so emotional just thinking about it Once that all got out of me.

Speaker 1:

I said to myself this can't go on. This can't go on. I need to figure out how to prioritize myself. Whether it's asking for help, whether it's taking a break, a whole day off with nobody, nobody needing me, no demands, whatever that looks like, and it'd be different for each of us and it's been different for me at different points of my life. It needed to happen and I did. I did slowly start to incorporate different items of self-care into my life and it did start to make a difference.

Speaker 1:

Unfortunately, then my dad passed away and the last stage of caregiving I'm calling the changeover caregiver. You know it's so funny. It's like it's an acceptance that now I'm not the change over caregiver. You know it's so funny. It's like it's an acceptance that now I'm not a caregiver. And you'd think that you'd celebrate. Now, obviously you're not celebrating, because if you're not a caregiver because you lost your loved one, I understand that you're not celebrating, but let's be honest, there is a form of relief. But what happens is is that you've turned your life upside down, right. You've kind of developed, depending on how long you were a caregiver, you've kind of developed a new normal and a new identity, and now that's gone. And so it does take a little while to kind of get your feet, your footing, back and figure out where, where do I go from here? You've lost your identity as a caregiver and then, needless to say, the grief over losing a loved one.

Speaker 1:

That's a whole different episode, but I can just speak to you know these two things, that feeling, and I'm thinking about my husband when he passed away December 30th 2022. As I record this, almost two years, I'm almost two years a widow, and the last six months of his life were horrible. They were horrible. They were horrible for him and they were horrible for me and for my kids. And it wasn't just the physical illness with my husband, it was really at the end.

Speaker 1:

Those last six months, his anxiety and depression were really really nasty and combative, and it was. It was hard I don't need to go into specifics and so I remember, before he died, thinking, wondering when, what will happen? This doesn't seem like anything's happening anytime soon, and I was not please. I was not wishing for him to die, but mentally he was suffering, so I think he had a great fear of death. That's where his anxiety and depression really kicked in. He would no longer speak to anyone about it and instead he internalized it and it was a misery and I knew physically he was not coming back because I knew it was a terminal diagnosis and I spoke to the oncologist all the time.

Speaker 1:

It was just a matter of time and in one sense I wanted that relief because life was awful, just awful. And then he died and then I thought, oh my gosh, I'd give anything just to have him back. I can't believe he's gone. I can't believe he's gone. How could I feel relief but yet want him back? And it's such a feeling of guilt. It's almost like saying this out loud to you makes me seem like a bad person, because I did long for relief. But that doesn't mean and didn't mean that I didn't love him very, very much and I would give anything to have him back. But I'd want him back as healthy, happy Gary, the man that I married and knew several years before.

Speaker 1:

All right, those are the stages of caregiving. So, because of all the challenges that I just have told you, caregiver burnout is a real thing. It is super common. What's caregiver burnout? Look, it's like any kind of burnout. Really, it's that physical, emotional, mental exhaustion and a lot of times caregivers become depressed. Some of the symptoms that you notice are that caregivers withdraw from their friends and family. They lose interest in activities that they used to enjoy. They're sad, irritable like me, hopeless and helpless. Maybe something changes with their appetite. I unfortunately happen to be one of those people who eats more when they're stressed, instead of less. I'm trying to figure out how to reverse that, but I haven't really. They get sick, more change in their sleeping patterns, and it all comes from this juggling multiple commitments.

Speaker 1:

Sometimes we didn't talk about this. It could be a lack of support from other family members. When you have siblings, or in the case of a parent that aren't supportive, or if you have disagreement about what to do among siblings, this creates a whole other problem that can add so much stress. It affects your relationship with your loved ones. You're you know that are your family members who should be helping you in the caregiving journey, and often you're burnt out because you feel like how are you ever going to succeed at this? How am I going to get good at this? How am I going to help my loved one? Will they ever get better? I can't do. You know it's it's. I can't think of the analogy, but you can't.

Speaker 1:

It's like multitasking, which I'm learning, because you know I used to pride myself on being a multitasker. Now what I've learned is single-tasking is the way to go, because when we multitask do we do a good job with all these different things that we're trying to do at one time, maybe sometimes depending on what it is but focus on one thing is so much better, so much better. And look, this is where self-care comes in, and self-care can be anything from taking time to take a nap or going to a support group. I've said it on this show many times support groups have been a tremendous help to me and last week my guest last week was saying how sometimes you know you might not get the right support group. Sometimes you could get to a support group that makes you feel even worse because of people or their situations or how negative they are for a variety of reasons. That doesn't mean there's not another group out there for you. They don't all. It's not a one size fits all.

Speaker 1:

And if you think that you don't have time because I would say that 99% of the caregivers that you say you know you really need to take care of yourself better and do something for yourself I'm sure that they would say that's a nice idea. I don't have time for that. Who has time? I mean, as it is, I just discussed all the different commitments that you have to juggle and that's why you're burnt out, because your self-care is at the bottom of the list. But I say there is always time for self-care. It really is you deciding how you're spending your time, and even if you're not a caregiver, but you're juggling a lot of commitments and you feel burnt out from whatever from your life, there is always time to take care of yourself. So I want to give you a few examples.

Speaker 1:

If you only have five minutes five minutes Now don't tell me that you can't come up with five minutes in your day to do something for you. What could you do for five minutes? That's a form of self-care. You could do five minutes of deep breathing, whether it's on your own or an app like Calm. You could just step outside for five minutes. You ever do that. I have Yogi, my multi-poo, so I'm outside with him a lot and instead of looking at my phone now I really make a concerted effort when I go outside to just take some deep breaths and look around and appreciate nature. You could hug someone. Think about it. Think how you feel when you hug someone. That's a form of self-care Text someone you love.

Speaker 1:

Buy or pick yourself up some flowers. I started doing that after Gary died. Every time I went to the supermarket I was like you know what? I'm buying flowers and I'm putting them in the kitchen. I can look at them all the time and they just make me happy. That was a form of self-care. And let's say, you have 15 minutes Stretch Journal, do a coloring book. I just came across coloring books that I had in a cabinet. I'm taking them out. I have some Christmas ones I am going to do. Watch a funny YouTube video. I have actually recently found that that is really, really helping me, as long as you don't go down that rabbit hole and now you find yourself wasting the whole day doing that.

Speaker 1:

Clean out a drawer or a closet. You know how, there's never time for that. Go to one of your junk drawers and just clean out one drawer. It takes 15 minutes and you'll be amazed at how much better you feel. All of these things are forms of self-care.

Speaker 1:

Caregiver, I applaud you. I want you to know that you're not alone. You are not alone and I get what you're going through and I beg of you, please take care of yourself, reach out to others, ask for help, join a support group and just know that you're not alone. Thank you all for listening and I can't wait to talk to you again next week. Thanks for spending part of your day with me here on Maybe I Can, exploring possibilities one sprinkle at a time. It's been great having you and I hope you're leaving with a spark to light up your journey to more.

Speaker 1:

Remember every big change starts with a single maybe. If you're ready to kickstart that change but not sure where to begin, I've got just the thing for you. Head over to download my free guide, the One Critical Step to Kickstart Change and take that all-important first step. Let's make those maybes into reality, one sprinkle at a time. Catch you next Tuesday at 4 pm Eastern, 1 pm Pacific, with more stories, tips and that extra push you might need. I'm Debbie saying goodbye for now, but always remember maybe, just maybe, you can.

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Debbie Weiss

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