Jayne Haggen shares her journey of being a caregiver of her husband for the past twenty years. She explains how they deal with independence, managing medical care and taking care of herself.
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Katherine Cocks0:02
Hi, my name is Kathy. I've been a geriatric nurse for over 10 years. Many times when I would meet with family members of aged loved ones, they didn't always know what to do. I started this podcast knowledge for caregivers, to assist them with practical suggestions as they assist their own loved ones age with dignity and grace. Welcome back to the episode today. I have Jayne Haggen on she is a caregiver and Jayne, welcome to this program and tell us a little bit about yourself.
Jayne Haggen0:41
Hello, Kathy, thank you so much for inviting me. I'm truly honored to be able to share our story about caregiving. I've been a corporate executive, I've been an entrepreneur, through most of this time, I've been juggling caregiving. My husband has not been blessed with good physical health. And after our fifth year of marriage, his health conditions or situation started taking off. I have been a caregiver at various levels, depending on what's going on with him for a little over 20 years.
Katherine Cocks1:13
Is your husband able to work? Or does he get like disability,
Jayne Haggen1:16
he does not work. He did have a small business. When I left my corporate world, he had already started his small business, I decided to start mine. So at that point in time, we're very excited. But we were a little bit insane doing that. But in that insanity, all of a sudden cutting your ties with a corporate paycheck. It created flexibility, how about halfway through his illnesses, he was able to maintain his business. And then finally we hit a point in time where he really could not it's not that he's not functional, but the care of a business was just too complicated. Did he go on disability? No. In this may be stupid on our part, but suggesting he goes on disability was him resigning or feeling he gave up
Katherine Cocks2:04
when you talked about juggling work and caregiving. Tell me how that has been for you?
Jayne Haggen2:10
Well, like anything it has its ups and downs. As his illnesses have increased in severity. It's been more and more difficult. In briefly just to give you an idea of of what his illnesses are, in his Gosh, early 50s. He had a horrific heart attack out of nowhere, no normal symptoms. He was actually in the ICU for almost two weeks. That's the level of severity. He came out of it and we were able to get him back in place. Luckily, when that happened, I had been laid off of my corporate job with that flexibility of not having to work I think we got through the most difficult part of him gaining strength and confidence together continued on, he's had a pacemaker on his fifth or six pacemaker I've lost track when his second pacemaker went in, they decided to take him off Coumadin and did not bridge him. After he had the pacemaker, he basically threw a clot and had a stroke. Because I'm flexible. I'd had no real work of the project where I was able to be with him. And he recovered fairly well. But it was a lot of time and effort both of us working on that. He then had a series of a couple smaller strokes. And then the last stroke was again caused by he went on Eliquis he had to go in for any regular colonoscopy, that's fine. I said, we'll come off Eliquis right beforehand, and then you'll go on right after the procedure. And within less than 24 hours, he had a brainstem stroke, that's been as 2014 and we're still working through the brainstem stroke. And he's fortunate. He's incredibly and we are both fortunate. But it's been an incredibly difficult journey.
Katherine Cocks3:50
Definitely you've had to really interact a lot, I guess, with the medical field with different health care professionals. I imagine you've had everything from you know, different types of doctors to physical therapy, occupational therapy, all of that. Do you feel like you're kind of the head person making sure all that takes on? Or does he have like a team that you feel like is helping him
Jayne Haggen4:13
when he does have a team of substantial team. His core team is comprised of roughly about 20, physicians, PT and other things. And so he does manage his health care, I kind of back it up, but he manages all of that he takes care of all that and it is a full time job just doing that. He manages a good bit of it, but he can't really work. And he's gotten better at things. And part of it in my last layoff. This happened in 2014. And I worked through a horrendous contract at that point in time. It was just terrible. But I had come in as an interim director for a company and thank God I had that insurance. It first because this was so awful. I left it all to the medical community to handle it because I just it was too overwhelming. I just didn't know what to do. I was laid off Within a year of him having the stroke, but you get a point in time where essentially the healthcare just turned over, and you have to manage it, and you have to figure it out. And there really isn't a whole lot of help for the caregivers. And you deal with a lot of different physicians, you deal with some people who are incredibly helpful and kind of you deal with some people who aren't trying to be unhelpful or kind, but really aren't connected. And it's really more of an academic, more analytical exercise, what we've learned is you have to handle your medical care, you have to become knowledgeable about your medical care, I take care of the house, I take care of, you know, how are we going to cover this, how we're going to pay for that, and my husband, to his benefit has become an expert on his illness. He challenges his doctors, he comes in with research and articles, he is challenging every doctor, he has to be better at who they are. Because of that our level of care is incredibly high. But we have to work very hard for that level of care
Katherine Cocks6:02
kind of answered my next question, because I was gonna ask this strategies of managing all of your care, you're the head person directing it. What have you found to be successful? So obviously, is one of them is that your husband is doing a tremendous amount of research, and not just going in and going, the doctor says this, okay, I will do it. But he's really pushing back a little bit to make sure it's the right decision. Is that what you're saying? Yeah,
Unknown Speaker6:29
we do listen to the doctors, he exercises every day, seven years, almost eight years later, he exercises every day, he does all the PT x's, he's got a notebook he created. And he works through all of those things, because you can't be on PT 100% of the time, I promise was he was going to rehab and I would figure out the other stuff. And he has stuck to that. And he has a tenacity that I admire. It does drive me a little crazy sometimes when it's focused on me, of course, but he hasn't, he takes his medications as he should. he monitors his weight, I'm in charge of all the cooking, I need to be aware of what he's eating and how he's eating. He's on tremendous blood thinners because of the strokes and everything else. So he can waver off quickly, one way or the other. And it can be very detrimental to his health. So it is like an incredible combined effort to ensure that we have as close as we can. And I think for the first time in eight years, we're actually closing in on something reminiscent to the life we had before the brainstem stroke.
Katherine Cocks7:33
I'm sure that especially when you talk to physical therapists, a lot of the people just you know, they don't do those exercises. And yet he does. So I know it's been really difficult and probably hard when he has been tenacious and you're like I'm just trying to get through the day. But I can see that also, that's a blessing for you in the sense of you don't have to go around going Did you do your exercise? Are you eating healthy? Sounds like he does a lot of that.
Unknown Speaker 7:58
Absolutely. But as a caregiver, you're always watching constantly on alert with the brainstem stroke he had. It's like, if you draw a line through the middle of your body, from your head, you know, all the way down. It's like everything in the middle on his body disconnected. So it has lost some mobility in his hands a bit and his walking, but he totally disconnected. So right side, left side weren't connected. Vision, your life right side, left, I weren't connected. It's swallowing the light side, left side wasn't connected. So he said to reconnect his whole body back together. Because of that. He has some inherent weaknesses with, there's some misses with sight. He has awful neurological pain that has not left, although we are getting at a point where we're finally getting some improvement on that. So you're constantly watching me walk and that's another story. I'll jump into that in a minute cuz this that's so important. He could miss a step on a curb stone and go over into the street and I'll catch him. We'll be walking upstairs is slightly miss a step which norm we all do. We all do this stuff, but we catch ourselves. He can't quite catch himself on things like that. I listened to hear if he can get stuff stuck in his throat, sometimes with swallowing, although it's all improved. So I'm listening. Is that a little stick? Or is he choking? I mean, so you're constantly on 24 hour alert, listening for these little signs staying back because he doesn't need me swarming around him for everything. There are points I need. I know I need to step in. How have
Katherine Cocks9:30
you handled taking care of yourself your own emotional or physical health. As you said, you're trying not to hover, let him live his life but you're like kind of listening. So I can imagine that that's a little stressful
Jayne Haggen9:45
was very stressful and you don't really get used to that stress. I've learned to balance it better. Because the reality is the stroke took over everything it took over our lives. Every aspect of our lives was taken over by the stroke for a while there was There's no other option we had to get through these first phases. And then about, I guess, three, almost four years ago, I needed to start taking care of myself. And then that's a balance. How do you do that, I'm still working with that balance. There could be a day where he has a doctor's appointment in it, bad weather and things like that, I really need to go with him. Because we walk everywhere we moved to the city, get rid of a car, so he could have freedom, we know he will not drive again. So we just got rid of the temptation. So we walk everywhere, which is incredibly important. We take public transportation makes our life so much easier. But if he's going to a doctor's appointment, and it's icy out, then I need to drop what I'm doing and go with him to that appointment, because he won't be able to navigate the ice. Well, he will do a lot of it. But it just depends. If it's high winds, that's very difficult for him to walk in, because it'll throw his balance off. Things, I just have to say, Alright, I've got to stop this. And I need to be with him get to the doctor's appointment, I'll take my cell phone with me or whatever, you know what I can kind of do whatever I need to do. But you do go through a period of time where my did most everybody does when you get angry, because you really, you feel like you can't do anything without checking in. There's no privacy, there's no space for me. Where do I exist in all this, I did get angry. I believe I've got a better hold on that anger. Because really, I found out it was fear. So the anger really is fear. And I've got a better hold on the fear. And it's through a lot of things is meditation it's working on and recognizing that fear, being realistic about what's going on around me and putting life first, I always put work first, the hardest thing on earth for me to do is put life first. Now how does work support life? So I'm at that point now, how do I have something that's incredibly flexible, I feel that we're in a better space. The other thing we've done, which I think is really turned a point for both of us. About two years ago, we started looking beyond the pharmaceutical toolbox. He's been through every test, possibly think of to improve, to get better looking for doctors to help fix him looking for medication to fix him. And the reality is none of that fixes you, you have to heal yourself, they help you. But you run out at some point in time of options, and we ran out of options. So we started looking beyond the non pharmaceutical toolbox. And that's been his greatest improvements. He has changed dramatically. Now we didn't come off with his medications, I want to make sure we're very, very clear because the medications held him in place kind of cocooned him and kept him in place until his body was ready to start healing on its own. Medications don't help heal you, they hold you. And that's important. We keep those but now we've augmented with other things that are really helping his body to heal menace everything from chiropractic to acupuncture to functional movement, we are looking at a lot of things that really work on the whole body, and how the body is healing and changing the disease is being handled. The illness is the healing of the body. And that's mind that's soul. That's everything else around your being. How do you pull all of that together, our paths have been a little bit different, but they've been very similar. We are in the last couple years, calmer than we've ever been more open, more flexible with each other, more patience with each other. It is a much better journey. Now we're feeling like like a weekend where we just sat down and did stupid things like streamed goofy episodes of Downton Abbey. Beforehand, we wouldn't be able to do that because he couldn't sit long enough because he was antsy, there's so much pain going on. He just really couldn't focus. Now we're calm down is the pain hasn't gone. But it's manageable now. And he's gotten over his fears. And we realize there's multiple tool boxes we can use. And unfortunately, insurance companies don't recognize the depth and breadth you need help with for things that do indeed help you heal. I'm hopeful that over time that will start changing. Because it's all about recovery. We're going to get ill we're going to get sick, we're ultimately all going to die. We know that can you recover and how well do you recover? That's where we're focused. We've been healthy the whole time. I mean, when he had his heart attack, we were runners. We just finished like a two a five mile run. When walking home from the track and just having a great conversation. The heart attack struck, but it wasn't the stuff and you normally hear goes with a heart attack when we move downtown since he couldn't drive and then I got laid off when he'd come out of the wheelchair. He was in a walker. He moved into hiking sticks. We moved downtown he so he can get places he can go walk a block to go get a cup of coffee if he wants to. We can do those small things easily. And I just took his hand and we just started walking. We walked every day. We still walk just about every day as we do walk everyday if sometimes sight outside. To me walking is really outside. It is one of the most important activities we do. That gave him his ability to walk by walking. It was very hard for him very difficult. But I was there the whole way. And so we walk together and we continue to do that. I think water is probably the undisclosed, unannounced mirror miracle drug on Earth is water. So having good clean water, we're in an apartment. So I can't put a filter on my pipes. But I have a filter on everything I do. And just so we have clean water, it is amazing. If he's having a bad day, I'll ask him. How much water do you have today, I didn't have enough to drink a couple glasses of water and he feels better. Some of the simplest things actually have been part of the greatest cure.
Katherine Cocks15:42
It's funny you say about water because I help caregivers who are paid, you know, caregivers that go into the home. And I said, if you call me I'm going to tell you sit your client down, give them something to drink, with their blood pressures low or they're dizzy, or whatever. So I said before you call me give him something to drink because I'm gonna take him something to drink. Wait 15 minutes and call me back. So it's funny that you said that because that's I don't always say water. But people just get dehydrated as they get older they forget to drink. And so when you said that I was like, Yep, my caregiver was probably like, yep, that's what Cathy's like, just go get him some water, high blood pressure low, get him some water, give him something to drink, then got me back. So it's kind of funny. You said that. I think it's really cool that you guys moved downtown. So you could be independent. You gave up your car too. So you don't drive either?
Jayne Haggen16:28
Nope. I really honestly care about a car. I really don't. I just don't see it that well never have I'm incredibly nearsighted. And I wore glasses. Since I've been five years old. I just don't like driving. And there's people living in the Boston area. And and those slam the craziest drivers I've ever seen in my entire life, they scare the hell out of me. So I gave the car easily he loves to drive. But it just wasn't right to have a car sitting there that he couldn't drive when I didn't care. And he would love to if we did try to drive early on after the stroke. It was too much you don't realize how complicated driving is. It just wasn't worth it. And I can get a car if I need one thought that.
Katherine Cocks17:09
Yeah. Yeah, the thing that I seem to hear you say, and correct me if I'm wrong, but it sounds like at the beginning, it's hard no matter what, you're just juggling a lot of stuff. But if you manage your care, look at alternative treatments, take care of yourself that it gets better, or maybe not better is the right word, it gets easier. Maybe with time do you find as you're employing those strategies is like if somebody was just starting this journey, what would you say to them?
Jayne Haggen17:39
Well, the first phases are going to be horrific. Just don't be delusional with yourself, allow yourself to be in it. Allow yourself to be guided by the medical professionals. However, you need to ask questions, and you need to make sure you're understanding what they're telling you. You need to make sure you're taking care of yourself as best you can. It's really hard in those first days, because a devastating illness, it takes over. I think the smartest thing to do is not to fight it. But understand you need to learn what this is, was a new learning. And once you can get learn what it is and how it's impacting you, your life, your loved one, then you start seeing ways to work with it. Because it's not going away. So it's something you've got to learn to live with. Because it's going to be part of your life. Now, will it get better. In most instances, there will be always some improvement. But the more you understand about what disease is how it affects not only physically but mentally, the better you are at navigating. Once you start gaining knowledge, you start seeing more options, more opportunities to help yourself. There are opportunities where you need to take a few minutes, whether it's meditation, or if it's a therapy or a group, you do need to figure out as part of options, what do I do for myself, because if you get sick on top of this, it's not going to be good. And there's no reason for you to get sick. If you're looking at options. Because it's part of it, you're in the mix. Now it took me a while to figure out how to put myself into that mix. Because no one told me that it's like as Brene Brown says FFT the first frickin time and you got to learn about it, learn what it is do the research. I know it sounds kind of analytical. But if you don't have the knowledge, you don't know the options, and you don't know how to make choices. Once you get to a point where you're making choices. It gets better, it gets doable. So then it you don't have to think about it all the time. You'd have to worry about it all the time. It becomes intuitive in some instances, and that's when it starts settling down. The more you can take the stress off and have something more intuitive about the way you work together live together. Deal with all the issues together, the easier it is does it go away? Ain't no it does not go away. But that doesn't mean everything stops. Because you're living with this.
Katherine Cocks20:06
You've shared just great insights, you know, where you talked about taking care of yourself how you figured that out alternative treatments, gaining knowledge, research, asking questions, managing it, because in the end, the medical care, um, as a nurse, they're just people to, it's just so easy to get intimidated. I think the medical fields trying more to involve people in choices, but sometimes I know it can be intimidating. And I loved a lot of what you shared, because I think it's ask questions, get in there, but also take care of yourself. Is there any other thoughts you have, as far as being a caregiver?
Jayne Haggen20:44
The thing that I am just now understanding, after all this time is that I cannot know how my husband feels. There's no way I could have total empathy. I could say, oh, I'm sorry, you're feeling bad. Or I'm sorry, you're in pain. I don't know what that's like, I have no idea. I can't feel that I have learned compassion. I've learned not to say, Oh, I understand how you feel. Because I don't I truly don't. I think it's very important to recognize that only thing I know is how I feel it is the only thing I know is how I feel. And if I'm feeling bad about something, what can I do to feel better about it? What I have found when I kind of finally get gotten this in my own head, when I can calm down, and I'm not feeling bad, he's calm, everything around me is calm. If I'm feeling bad, and I'm not taking care of what I'm feeling bad about in myself, then everything is chaotic. So it's really, don't step into your loved ones, shoes, embrace yourself in your shoes. Understand, when you're not feeling good and not happy with yourself. Don't blame the disease is easy to do. I did that for a long time that doesn't get you anywhere, but learn to take care of yourself. And when you do everything else falls into place and compassion, have compassion for something you'll never understand. And thank God, you won't understand it, because you're not there. But we got to remember that. And that's a hard thing to remember, at times. And it's just something I have just now kind of waking up to that understanding. And it helps it really helps to say wow, I can't fix him. Only they can fixes me. And when I fix me, everything else is better. Great words
Katherine Cocks22:23
of wisdom. I think I will end on that. Because I think that was you know, just great. I have really enjoyed talking to you. I love your perspective.
Jayne Haggen22:32
Thank you, Kathy. I really appreciate you allowing me to tell my story. I've not told it before and it's it's been a lovely experience.
Katherine Cocks22:42
I hope you have enjoyed this podcast. If you have found it helpful, then share it. If you wish to contact me for consulting services. You can reach me at www.kathysconsulting.com. Remember, our content is meant for informational purposes only, and not to replace the advice of healthcare professionals.