The Caregiving Soul:

When Marriage is Hijacked by Illness

Dannelle speaks with Terri Corcoran, who married her husband when he was 64. Terri’s story shows the heartbreak of a marriage hijacked by illness, in her case with the added devastation caused by an undiagnosed disease as it was for her husband. Terri had to navigate the loneliness in her marriage as his advocate and caregiver but finding support through Well Spouse saved her. 

Resources

About Terri Corcoran

Terri Corcoran is the Board Secretary of Well Spouse® – a non-profit organization focused on supporting and advocating for spousal care partners. For over 15 years, she cared for her husband who suffered from Fragile X Tremor Ataxia Syndrome (FXTAS), a neurodegenerative illness. She is co-editor of Well Spouse’s Mainstay newsletter and co-leader of the Arlington, VA Well Spouse Support Group. She has published various articles on spousal caregiving, as well as being featured on podcasts and radio shows advocating for other spousal caregivers. In 2022 she published her book, “Marriage on the Cross: Discovering the Reality of God in a Marriage Challenged by a Fragile-X Illness”. She has also served her church in many ministries. 

Transcript

[00:00:00] [Music] 

[00:00:03] Terri: So, we get married in 1999, and a month later he started falling down. It’s not like he got dizzy. He didn’t pass out; he just fell down. What it was, was he was losing his balance, but we couldn’t determine that. At the same time, mentally, things had been happening even before we were married. But you don’t notice that until years later.  

Read More

[00:00:22] Dannelle: Terri Corcoran married her husband when he was a vibrant 64. He was a laser scientist who was passionate about the arts. He even bought and managed a magazine and taught Terri how to write and edit reviews about all of the arts activities in the Washington, D.C. area. What began happening soon after their marriage was something they never could have expected. 

[00:00:51] Welcome to The Caregiving Soul. I’m Dannelle LeBlanc.  

[00:00:59] [Music Ends] 

[00:00:59] Terri: So, after we got married, there were subtle cognitive things going on. He would get apathetic. He would get lethargic. I had no idea there was something cognitive going on. I was focused on that he was falling down and sometimes having trouble walking where he would freeze and then start to walk again. And then with the apathy and all the other things not doing as much of his work, I thought, well, I didn’t think he cared about me. It’s like, you married me and then you’re just gonna sit down and be apathetic. 

[00:01:31] And he wasn’t like that all the time, but, and I had never met anyone with a cognitive illness, so, I didn’t even think of that. I’m just thinking you don’t care about me. I went to the library, and I was looking for books on second marriages [Laughs] and why am I failing and what’s wrong with us? And so, all these little subtle things were going on where he just wasn’t him. Sometimes he was, but sometimes he wasn’t. 

[00:01:56] Meanwhile, after a while, I had him go to the doctor about the falling issues and I told the doctor, I said, “I think he needs to see a neurologist”. And they said, “Oh, I don’t think so. It’s just old age”. I said, “Old age? He’s 64 years old. He shouldn’t be falling down”. She thought he might have Parkinson’s disease, which is a common misdiagnosis of this cuz he had some stiffness and the walking problems. 

[00:02:19] Meanwhile, nobody could have known because it hadn’t been identified by medical science yet. So, really it couldn’t be diagnosed. So, she thought, well, maybe Parkinson’s. And she took all these MRIs of his brain and then I got the results back, and you know, it said all these things weren’t quite right – this signal in the brain and that signal, and I didn’t understand it, and we never heard back from the doctor. And he called her and “How about a follow up?” And she never called back. I guess she just didn’t know what it was. 

[00:02:49] So, then we get to the fifth neurologist like four years into our marriage and I got a new primary care doctor and he said, “Well, I know this really brilliant neurologist”. We went to him and by this time it was the end of 2003.  

[00:03:09] And so, we go in there and the first thing that this neurologist said was, is there anyone in your family with mental deficits? And [Music] I said, “Well, you know, my husband has a grandson with Fragile X syndrome”. And we knew that. And he said, “I think that’s what you have”. And we’re like, what? [Laughs] 

[00:03:27] And he had just read the first paper published on this syndrome where they found that the carriers who only had pre-mutations of this were in fact affected by it later in life. It just, the older they got, the more chance there was of premutation carriers being affected. So, he said, “I think this is what it is based on the MRI reports and the paper I just read”.  

[00:03:55] So, he ordered more MRI reports that were targeted to what he wanted to see, and he said, “And we will get genetic testing to see if this is what it is”. So, we did that, but the genetic testing took two months because nobody in our area knew how to do it, cuz this is like this new thing. Finally, someone came to our house, drew his blood, sent it to Boston, and they said, “Yes, this is what it is”. 

[00:04:20] [Music Ends] 

[00:04:20] Dannelle: Holy cow. 

[00:04:23] Terri: So, he gets diagnosed with this in early 2004, and so the neurologist that diagnosed him said, “I think this is just a mobility problem, a motor illness. I don’t think there’s anything cognitive involved”, so still no one clued me in that there could be some kind of dementia involved. So, I was still struggling with that. So, then I found that first research paper on the internet.  

[00:04:49] I got in touch with the doctors at UC Davis in California, who discovered all this. And I introduced myself to them. And they wanted me to bring him out to California. By that point, I couldn’t. I said, “He just, he can’t walk on his own”. So, I did send a blood sample to them. I sent his MRIs and so they knew who he was and they were in Washington for a conference the following year. 

[00:05:13] I brought him down to that so they could see him for a few minutes, and they had a genetic counselor out in California who said, “You know, if you have any problems, just call me”. And they would suggest over the years any medications or treatments that they thought might help, even though there was really no, no cure. And everybody had different symptoms. 

[00:05:34] My husband lost the ability for any motor coordination. After a while he couldn’t walk, he couldn’t feed himself, total incontinence. And his mind was rapidly going. So, when he couldn’t remember my name, like five years into the marriage, I called this genetic counselor in a panic. And I said, “He doesn’t even know my name. What’s happening?” And she says, “Well, yeah, we’re finding out that yeah, there is dementia involved in this”. So, she said, “You might wanna think about, you know, looking into a nursing home, cuz he’ll probably need that in about three years”. And I was horrified. It’s like, “No, we just got married. We’re gonna be together. There’s not gonna be a nursing home”. 

[00:06:16] I was determined that that wasn’t gonna happen. And as it turned out, it didn’t. Over the years, I hired help at home and I was just determined that this is the only marriage we’re having. We’re gonna be together. But it was really difficult. He just got more and more disabled cognitively and physically. And starting in like 2005, I started hiring help at home, first a little bit at a time, more and more and more and more and more. 

[00:06:40] He died in 2016 at the age of 81. And at that time, I had like 10 hours of help a day of aides coming to the house. I had strong guys who could get him in and out of the shower, and I modified the house. We had our routine. So, basically, we, we made it work at home. 

[00:07:00] It was really hard. He was hardly speaking at all for the past many years of our marriage. He could barely talk at all. Um, once in a while he did tell me he loved me, which meant the world to me. And I kept a journal, and I wrote down anything that he would say to me, which was nice cuz I could look back then and remember it and say, “Oh wow, he really said that to me that day”. He became very peaceful. He seemed to trust me even if he didn’t know my name. And, I had the help so that I could get out of the house. And, we just made it work. It was extremely difficult. It was, it was heartbreaking that we, we never really had a marriage. 

[00:07:40] Dannelle: My God, no wonder you struggled. There’s so much heartbreak in that story. With his brilliance in being so active, and such a vibrant person to lose all of that, and not to know why. And trying to continue to relate based on what bits and pieces of information you had, and for so long thinking, “Does he love me? Does he still care about me?” And so, this speaks to why you are such an effective advocate. 

[00:08:31] So, by the fifth neurologist, you said in 2003, you talked about a genetic counselor, how did they help you navigate the symptoms given there wasn’t a cure? 

[00:08:50] Terri: Well, the genetic counselor I actually only spoke with once or twice. She was part of the team. There was a husband-and-wife team at UC Davis, and they actually discovered this in a strange way. The woman doctor, the doctor Hagerman, is I think a pediatric neurologist and she worked with children who had Fragile X syndrome. 

[00:09:13] So, she noticed at one point the mothers were bringing in their children to work with her, and she overheard these mothers talking to each other about their fathers, who were the grandfathers, who were kind of falling down and acting funny. And she thought there might be something there. So, she asked her husband, who was like a research scientist to try to look into this. And that, that’s how they discovered this, because they realized that it wasn’t just the children who were being born with this, but there were things happening in the carriers that showed up later in life. So, that’s when they started researching it, and then they wrote the first paper on it. 

[00:09:53] I found the research paper after my husband was diagnosed and I contacted these people by email, and they always tried to be really, really helpful. And somehow I got the name of the genetic counselor, and I think I met her briefly when we went to that conference in Washington that they were at. 

[00:10:10] Now there are different places where they do have clinics where they are working with this because it’s not a rare thing. A lot of people have Fragile X syndrome and there are a lot of premutation carriers that were all being misdiagnosed with Parkinson’s or something else. 

[00:10:27] So, the neurologists that diagnosed my husband, he was fascinated by this and very proud of himself that he was able to diagnose this and he was all excited and he thought that my husband’s kind of eye movements might have something to do with how to diagnose it. And he sent us to this special neuro-ophthalmologist just so this guy could see it. 

[00:10:50] And then he asked us to go to Johns Hopkins, which was nearby in Baltimore cuz he wanted the people there to see him. Not that they could do anything, they had just never seen it. So, we took him there and they had the neuro-ophthalmologist and the neurologist do MRIs of his brain and everything. That was just for their information. 

[00:11:11] Dannelle: Oh my gosh. 

[00:11:13] Terri: And it was really all on me. And most of the doctors just, what I call, gave a collective shrug. 

[00:11:23] Dannelle: Which made what you walked through with your husband even more lonely. I mean, I’m hearing a lot of loneliness, being on your own within the medical community, and having to fight for the precious quality of life for your husband and for yourself. And then the loneliness of him not being able to communicate how much he loved you. 

[00:11:58] So, I love that you kept a journal of when he said something to you that reminded you that he did and does love you. I’m also thinking about, Terri, you mentioned that you brought him, for example, to the ophthalmologist to observe his eye movements because there might be some kind of connection there, but it was, the purpose was just for them to observe and learn more about the disease without there being any benefit for your husband’s case. 

[00:12:40] And I would say that, whether you met or know it or not, that you helped other people. There’s no way to know how many. But that, in doing that, in doing all of the work that you did as an advocate for him, that you have helped so many people in unseen and unknown ways. So, I feel that in my heart. 

[00:13:14] So, it makes perfect sense given your story, why you would want to help others, as a representative for Well Spouse. Can you talk to us a little bit about the work that Well Spouse does and how you transitioned?  

[00:13:38] [Music] 

[00:13:38] Terri: I found Well Spouse in 2005. When my husband got sick, there was in the back of my mind, gee, I wish I knew other people that had sick husbands [Laughs] or whatever. I didn’t know anybody like that, you know. I was just out there on my own, and I figured, well, there must be other people like that. 

[00:13:56] And I was taking my husband to a prayer group at that time and there was an older woman in the group who became like a mother to me and it turned out her son was about my age and he was caring for a wife who had MS and so, she put me in touch with him and I actually, I never met him. I spoke to him once on the phone and he was the one that told me about Well Spouse. 

[00:14:24] [Music Ends] 

[00:14:24] And so, I immediately called. It’s a national organization with international members by way of the internet. And there are support groups in various cities and locations, wherever they wanna start one. We had one right here. I called the person, and I went to the first meeting. I got someone to stay with my husband and, oh, it, I was, it was wonderful. 

[00:14:47] There was like these 10 people sitting in this room in the library and they were all spousal caregivers. Everyone’s wife or husband had a different illness, but they were all long-term, chronic things. It wasn’t like something they were gonna get over. It was a long-term illness and some of them had been in it for decades. It, it was wonderful. I, I was so glad to find these people and we just all shared everything and often we would end up laughing because the situations would get so ridiculous that we could just laugh together. And it was just this awesome group. 

[00:15:20] And so, I gradually became more and more active with them. They have a newsletter that comes out quarterly and I would write something once in a while for the newsletter about my experiences, cuz I realized I like to write. And, as the years went by, I took on more and more jobs with them. 

[00:15:38] At one point I took over being the editor of the newsletter. And so, I’m the one that puts it all together and lays it out because my husband taught me how to do that with our arts magazine. And so, I used everything my husband taught me about how to just line things up and get everything right. [Laughs] He taught me well. And so, people send me stories and I just lay it all out and put it together. I’ve done a lot of writing out on the internet about Well Spouse and about my husband’s illness. So, that kind of kept my mind active while I was going through all of this. 

[00:16:11] Then after my husband died in 2016, the, the leader of the support group was retiring, and so in 2017, me and another comember took over the leadership of the local support group. And, then Covid struck, so we moved all of our meetings onto Zoom. So, now our support group meets twice a month on Zoom. And we can also include people from other parts of the country. There are people that come to our group who live in places where there are no support groups.  

[00:16:41] And Well Spouse also supports people after your spouse has passed, or are called a “former Well Spouse”, but a lot of us stay on and support each other through widowhood. So, we have support groups for that. And then they have a Facebook page too called Living After Spousal Caregiving. And that’s also a place where formers can share. 

[00:17:03] I reach out to a lot of people when they become widowed and offer to talk to them, because when my husband died, that’s what I wanted. I wanted somebody to talk to me. I wanted somebody to listen to me. So, I try to do that for other people. 

[00:17:17] Dannelle: I just wanna say how wonderful it is Terri, that what your husband taught you, showed you, revealed to you your talents and skills as a writer and an editor. You’ve been able to use to help others in unexpected ways, through your work with Well Spouse, and it’s interesting because we can think that the work of caregiving is so, is so overwhelming. 

[00:17:51] We don’t have time or energy to go to a support group or to be involved in an organization like Well Spouse, because it can feel like that’s one more thing on our plate, which it is. But at the same time, what you received from it, the emotional support and fellowship, became a way to move from constant state of grief to a place of laughter. And that’s an amazing thing when you’re carrying something so hard. 

[00:18:31] I’d like to get your perspective on some of the other issues that impact spousal caregivers in unique ways. Can you provide any advice on how to navigate a difficult financial situation on top of the caregiving responsibilities that you had? 

[00:18:57] Terri: Yeah, it’s very difficult and it can be catastrophic for a lot of people. We did okay, luckily. I guess my husband had enough savings that I was just very careful with money. I didn’t spend anything that I didn’t have to spend. And I just added help as I really, really needed it. 

[00:19:17] I stopped working to take care of him. Some people continue working, or they, it’s just whatever works for them. But it, it seems like, for me to continue working, I would work just to pay for the help. And this was in the beginning of the end where I could have taken care of it myself. 

[00:19:35] But I mean, it can be financially catastrophic. A lot of people will have to apply for Medicaid if they need resources or if they have to put the spouse in a nursing home and they can’t afford it.  

[00:19:48] Dannelle: Are there any resources available or suggestions, referrals, through Well Spouse for people who are needing more financial support? 

[00:20:04] Terri: Yeah, we share a lot of information like that too at meetings. We share practical information about medical equipment, and we actually have a social action committee at Well Spouse, and they keep people apprised of what’s going on, on Capitol Hill regarding caregivers, and maybe programs you can apply for. I know sometimes you can apply for a respite program where you can get a grant so that you can go off for a week or something and someone will take care of your spouse.  

[00:20:33] Dannelle: I think one of the biggest challenges of navigating the financial impact of caregiving is that there’s not a whole solution in most cases, it’s piecemeal. It’s about saving money with medical equipment here, utilizing this benefit over there. And so I think that it’s important for people to know that upfront, in order to manage the expenses, that it’s a cumulative process and so, that’s great that Well Spouse provides that kind of guidance. What are some of the first steps that spouses who are brand new, or currently in a care partnership, can take to help navigate that kind of new reality? 

[00:21:44] Terri: Well, you know, aside from finding a support group of other people who are doing the same thing, which is extremely useful, I actually employed a, a geriatric care manager who I found out about through Well Spouse, and these are people who you consult with them. I consulted with her one time for a fee, and I just laid out everything that we were doing, and if she had suggestions she would give them. She knows the broader picture. 

[00:22:10] And she was also able to recommend a good nursing agency where I got my aides from. She also recommended a good primary care doctor who I liked. So, you have to pay them for a consultation, but that could be worthwhile. And well, and then there are people, there is a local lawyer everybody would go to see because she would deal with the money matters of looking ahead and possibly applying for Medicaid, and so a lot of people in Well Spouse were going to her. I, I went to one consultation with her. 

[00:22:43] Dannelle: So, that’s another huge benefit of support groups, in addition to the emotional support and like you said, it’s that it saved you in a way that you didn’t expect, but to also provide resources that are relevant to where you live. I’d like to thank you so much for sharing your story and so much for all of the work that you’ve done to carry on the brilliant legacy of your husband, and in helping others in ways that you did not receive when you needed it most.  

[00:23:37] Terri: Thank you. Thank you for having me. Nice talking to you. 

[00:23:41] [Music] 

[00:23:44] Dannelle: Thank you for joining our conversation with Terri Corcoran. 

[00:23:49] Terri’s story is a heartbreak of marriage hijacked by illness with the added devastation caused by an undiagnosed disease. As a result, Terri was confronted by loneliness early in her marriage as his advocate and caregiver. It was finding support through Well Spouse that saved her there. There she found support groups, heard the stories of others, and built new relationships with others who understood the experience of caring for a spouse. Regardless of who you care for, it’s critical to find your people. 

[00:24:31] Check out our show notes to connect with and follow Terri on social media or learn more about Well Spouse.  

[00:24:40] Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links. 

[00:24:52] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod 

[00:25:08] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts. 

[00:25:24] And remember, the right care includes care for you. 

[00:25:31] [Music Ends] 

Read Less

When Marriage is Hijacked by Illness

Dannelle speaks with Terri Corcoran, who married her husband when he was 64. Terri’s story shows the heartbreak of a marriage hijacked by illness, in her case with the added devastation caused by an undiagnosed disease as it was for her husband. Terri had to navigate the loneliness in her marriage as his advocate and caregiver but finding support through Well Spouse saved her. 

Resources

About Terri Corcoran

Terri Corcoran is the Board Secretary of Well Spouse® – a non-profit organization focused on supporting and advocating for spousal care partners. For over 15 years, she cared for her husband who suffered from Fragile X Tremor Ataxia Syndrome (FXTAS), a neurodegenerative illness. She is co-editor of Well Spouse’s Mainstay newsletter and co-leader of the Arlington, VA Well Spouse Support Group. She has published various articles on spousal caregiving, as well as being featured on podcasts and radio shows advocating for other spousal caregivers. In 2022 she published her book, “Marriage on the Cross: Discovering the Reality of God in a Marriage Challenged by a Fragile-X Illness”. She has also served her church in many ministries. 

Transcript

[00:00:00] [Music] 

[00:00:03] Terri: So, we get married in 1999, and a month later he started falling down. It’s not like he got dizzy. He didn’t pass out; he just fell down. What it was, was he was losing his balance, but we couldn’t determine that. At the same time, mentally, things had been happening even before we were married. But you don’t notice that until years later.  

Read More

[00:00:22] Dannelle: Terri Corcoran married her husband when he was a vibrant 64. He was a laser scientist who was passionate about the arts. He even bought and managed a magazine and taught Terri how to write and edit reviews about all of the arts activities in the Washington, D.C. area. What began happening soon after their marriage was something they never could have expected. 

[00:00:51] Welcome to The Caregiving Soul. I’m Dannelle LeBlanc.  

[00:00:59] [Music Ends] 

[00:00:59] Terri: So, after we got married, there were subtle cognitive things going on. He would get apathetic. He would get lethargic. I had no idea there was something cognitive going on. I was focused on that he was falling down and sometimes having trouble walking where he would freeze and then start to walk again. And then with the apathy and all the other things not doing as much of his work, I thought, well, I didn’t think he cared about me. It’s like, you married me and then you’re just gonna sit down and be apathetic. 

[00:01:31] And he wasn’t like that all the time, but, and I had never met anyone with a cognitive illness, so, I didn’t even think of that. I’m just thinking you don’t care about me. I went to the library, and I was looking for books on second marriages [Laughs] and why am I failing and what’s wrong with us? And so, all these little subtle things were going on where he just wasn’t him. Sometimes he was, but sometimes he wasn’t. 

[00:01:56] Meanwhile, after a while, I had him go to the doctor about the falling issues and I told the doctor, I said, “I think he needs to see a neurologist”. And they said, “Oh, I don’t think so. It’s just old age”. I said, “Old age? He’s 64 years old. He shouldn’t be falling down”. She thought he might have Parkinson’s disease, which is a common misdiagnosis of this cuz he had some stiffness and the walking problems. 

[00:02:19] Meanwhile, nobody could have known because it hadn’t been identified by medical science yet. So, really it couldn’t be diagnosed. So, she thought, well, maybe Parkinson’s. And she took all these MRIs of his brain and then I got the results back, and you know, it said all these things weren’t quite right – this signal in the brain and that signal, and I didn’t understand it, and we never heard back from the doctor. And he called her and “How about a follow up?” And she never called back. I guess she just didn’t know what it was. 

[00:02:49] So, then we get to the fifth neurologist like four years into our marriage and I got a new primary care doctor and he said, “Well, I know this really brilliant neurologist”. We went to him and by this time it was the end of 2003.  

[00:03:09] And so, we go in there and the first thing that this neurologist said was, is there anyone in your family with mental deficits? And [Music] I said, “Well, you know, my husband has a grandson with Fragile X syndrome”. And we knew that. And he said, “I think that’s what you have”. And we’re like, what? [Laughs] 

[00:03:27] And he had just read the first paper published on this syndrome where they found that the carriers who only had pre-mutations of this were in fact affected by it later in life. It just, the older they got, the more chance there was of premutation carriers being affected. So, he said, “I think this is what it is based on the MRI reports and the paper I just read”.  

[00:03:55] So, he ordered more MRI reports that were targeted to what he wanted to see, and he said, “And we will get genetic testing to see if this is what it is”. So, we did that, but the genetic testing took two months because nobody in our area knew how to do it, cuz this is like this new thing. Finally, someone came to our house, drew his blood, sent it to Boston, and they said, “Yes, this is what it is”. 

[00:04:20] [Music Ends] 

[00:04:20] Dannelle: Holy cow. 

[00:04:23] Terri: So, he gets diagnosed with this in early 2004, and so the neurologist that diagnosed him said, “I think this is just a mobility problem, a motor illness. I don’t think there’s anything cognitive involved”, so still no one clued me in that there could be some kind of dementia involved. So, I was still struggling with that. So, then I found that first research paper on the internet.  

[00:04:49] I got in touch with the doctors at UC Davis in California, who discovered all this. And I introduced myself to them. And they wanted me to bring him out to California. By that point, I couldn’t. I said, “He just, he can’t walk on his own”. So, I did send a blood sample to them. I sent his MRIs and so they knew who he was and they were in Washington for a conference the following year. 

[00:05:13] I brought him down to that so they could see him for a few minutes, and they had a genetic counselor out in California who said, “You know, if you have any problems, just call me”. And they would suggest over the years any medications or treatments that they thought might help, even though there was really no, no cure. And everybody had different symptoms. 

[00:05:34] My husband lost the ability for any motor coordination. After a while he couldn’t walk, he couldn’t feed himself, total incontinence. And his mind was rapidly going. So, when he couldn’t remember my name, like five years into the marriage, I called this genetic counselor in a panic. And I said, “He doesn’t even know my name. What’s happening?” And she says, “Well, yeah, we’re finding out that yeah, there is dementia involved in this”. So, she said, “You might wanna think about, you know, looking into a nursing home, cuz he’ll probably need that in about three years”. And I was horrified. It’s like, “No, we just got married. We’re gonna be together. There’s not gonna be a nursing home”. 

[00:06:16] I was determined that that wasn’t gonna happen. And as it turned out, it didn’t. Over the years, I hired help at home and I was just determined that this is the only marriage we’re having. We’re gonna be together. But it was really difficult. He just got more and more disabled cognitively and physically. And starting in like 2005, I started hiring help at home, first a little bit at a time, more and more and more and more and more. 

[00:06:40] He died in 2016 at the age of 81. And at that time, I had like 10 hours of help a day of aides coming to the house. I had strong guys who could get him in and out of the shower, and I modified the house. We had our routine. So, basically, we, we made it work at home. 

[00:07:00] It was really hard. He was hardly speaking at all for the past many years of our marriage. He could barely talk at all. Um, once in a while he did tell me he loved me, which meant the world to me. And I kept a journal, and I wrote down anything that he would say to me, which was nice cuz I could look back then and remember it and say, “Oh wow, he really said that to me that day”. He became very peaceful. He seemed to trust me even if he didn’t know my name. And, I had the help so that I could get out of the house. And, we just made it work. It was extremely difficult. It was, it was heartbreaking that we, we never really had a marriage. 

[00:07:40] Dannelle: My God, no wonder you struggled. There’s so much heartbreak in that story. With his brilliance in being so active, and such a vibrant person to lose all of that, and not to know why. And trying to continue to relate based on what bits and pieces of information you had, and for so long thinking, “Does he love me? Does he still care about me?” And so, this speaks to why you are such an effective advocate. 

[00:08:31] So, by the fifth neurologist, you said in 2003, you talked about a genetic counselor, how did they help you navigate the symptoms given there wasn’t a cure? 

[00:08:50] Terri: Well, the genetic counselor I actually only spoke with once or twice. She was part of the team. There was a husband-and-wife team at UC Davis, and they actually discovered this in a strange way. The woman doctor, the doctor Hagerman, is I think a pediatric neurologist and she worked with children who had Fragile X syndrome. 

[00:09:13] So, she noticed at one point the mothers were bringing in their children to work with her, and she overheard these mothers talking to each other about their fathers, who were the grandfathers, who were kind of falling down and acting funny. And she thought there might be something there. So, she asked her husband, who was like a research scientist to try to look into this. And that, that’s how they discovered this, because they realized that it wasn’t just the children who were being born with this, but there were things happening in the carriers that showed up later in life. So, that’s when they started researching it, and then they wrote the first paper on it. 

[00:09:53] I found the research paper after my husband was diagnosed and I contacted these people by email, and they always tried to be really, really helpful. And somehow I got the name of the genetic counselor, and I think I met her briefly when we went to that conference in Washington that they were at. 

[00:10:10] Now there are different places where they do have clinics where they are working with this because it’s not a rare thing. A lot of people have Fragile X syndrome and there are a lot of premutation carriers that were all being misdiagnosed with Parkinson’s or something else. 

[00:10:27] So, the neurologists that diagnosed my husband, he was fascinated by this and very proud of himself that he was able to diagnose this and he was all excited and he thought that my husband’s kind of eye movements might have something to do with how to diagnose it. And he sent us to this special neuro-ophthalmologist just so this guy could see it. 

[00:10:50] And then he asked us to go to Johns Hopkins, which was nearby in Baltimore cuz he wanted the people there to see him. Not that they could do anything, they had just never seen it. So, we took him there and they had the neuro-ophthalmologist and the neurologist do MRIs of his brain and everything. That was just for their information. 

[00:11:11] Dannelle: Oh my gosh. 

[00:11:13] Terri: And it was really all on me. And most of the doctors just, what I call, gave a collective shrug. 

[00:11:23] Dannelle: Which made what you walked through with your husband even more lonely. I mean, I’m hearing a lot of loneliness, being on your own within the medical community, and having to fight for the precious quality of life for your husband and for yourself. And then the loneliness of him not being able to communicate how much he loved you. 

[00:11:58] So, I love that you kept a journal of when he said something to you that reminded you that he did and does love you. I’m also thinking about, Terri, you mentioned that you brought him, for example, to the ophthalmologist to observe his eye movements because there might be some kind of connection there, but it was, the purpose was just for them to observe and learn more about the disease without there being any benefit for your husband’s case. 

[00:12:40] And I would say that, whether you met or know it or not, that you helped other people. There’s no way to know how many. But that, in doing that, in doing all of the work that you did as an advocate for him, that you have helped so many people in unseen and unknown ways. So, I feel that in my heart. 

[00:13:14] So, it makes perfect sense given your story, why you would want to help others, as a representative for Well Spouse. Can you talk to us a little bit about the work that Well Spouse does and how you transitioned?  

[00:13:38] [Music] 

[00:13:38] Terri: I found Well Spouse in 2005. When my husband got sick, there was in the back of my mind, gee, I wish I knew other people that had sick husbands [Laughs] or whatever. I didn’t know anybody like that, you know. I was just out there on my own, and I figured, well, there must be other people like that. 

[00:13:56] And I was taking my husband to a prayer group at that time and there was an older woman in the group who became like a mother to me and it turned out her son was about my age and he was caring for a wife who had MS and so, she put me in touch with him and I actually, I never met him. I spoke to him once on the phone and he was the one that told me about Well Spouse. 

[00:14:24] [Music Ends] 

[00:14:24] And so, I immediately called. It’s a national organization with international members by way of the internet. And there are support groups in various cities and locations, wherever they wanna start one. We had one right here. I called the person, and I went to the first meeting. I got someone to stay with my husband and, oh, it, I was, it was wonderful. 

[00:14:47] There was like these 10 people sitting in this room in the library and they were all spousal caregivers. Everyone’s wife or husband had a different illness, but they were all long-term, chronic things. It wasn’t like something they were gonna get over. It was a long-term illness and some of them had been in it for decades. It, it was wonderful. I, I was so glad to find these people and we just all shared everything and often we would end up laughing because the situations would get so ridiculous that we could just laugh together. And it was just this awesome group. 

[00:15:20] And so, I gradually became more and more active with them. They have a newsletter that comes out quarterly and I would write something once in a while for the newsletter about my experiences, cuz I realized I like to write. And, as the years went by, I took on more and more jobs with them. 

[00:15:38] At one point I took over being the editor of the newsletter. And so, I’m the one that puts it all together and lays it out because my husband taught me how to do that with our arts magazine. And so, I used everything my husband taught me about how to just line things up and get everything right. [Laughs] He taught me well. And so, people send me stories and I just lay it all out and put it together. I’ve done a lot of writing out on the internet about Well Spouse and about my husband’s illness. So, that kind of kept my mind active while I was going through all of this. 

[00:16:11] Then after my husband died in 2016, the, the leader of the support group was retiring, and so in 2017, me and another comember took over the leadership of the local support group. And, then Covid struck, so we moved all of our meetings onto Zoom. So, now our support group meets twice a month on Zoom. And we can also include people from other parts of the country. There are people that come to our group who live in places where there are no support groups.  

[00:16:41] And Well Spouse also supports people after your spouse has passed, or are called a “former Well Spouse”, but a lot of us stay on and support each other through widowhood. So, we have support groups for that. And then they have a Facebook page too called Living After Spousal Caregiving. And that’s also a place where formers can share. 

[00:17:03] I reach out to a lot of people when they become widowed and offer to talk to them, because when my husband died, that’s what I wanted. I wanted somebody to talk to me. I wanted somebody to listen to me. So, I try to do that for other people. 

[00:17:17] Dannelle: I just wanna say how wonderful it is Terri, that what your husband taught you, showed you, revealed to you your talents and skills as a writer and an editor. You’ve been able to use to help others in unexpected ways, through your work with Well Spouse, and it’s interesting because we can think that the work of caregiving is so, is so overwhelming. 

[00:17:51] We don’t have time or energy to go to a support group or to be involved in an organization like Well Spouse, because it can feel like that’s one more thing on our plate, which it is. But at the same time, what you received from it, the emotional support and fellowship, became a way to move from constant state of grief to a place of laughter. And that’s an amazing thing when you’re carrying something so hard. 

[00:18:31] I’d like to get your perspective on some of the other issues that impact spousal caregivers in unique ways. Can you provide any advice on how to navigate a difficult financial situation on top of the caregiving responsibilities that you had? 

[00:18:57] Terri: Yeah, it’s very difficult and it can be catastrophic for a lot of people. We did okay, luckily. I guess my husband had enough savings that I was just very careful with money. I didn’t spend anything that I didn’t have to spend. And I just added help as I really, really needed it. 

[00:19:17] I stopped working to take care of him. Some people continue working, or they, it’s just whatever works for them. But it, it seems like, for me to continue working, I would work just to pay for the help. And this was in the beginning of the end where I could have taken care of it myself. 

[00:19:35] But I mean, it can be financially catastrophic. A lot of people will have to apply for Medicaid if they need resources or if they have to put the spouse in a nursing home and they can’t afford it.  

[00:19:48] Dannelle: Are there any resources available or suggestions, referrals, through Well Spouse for people who are needing more financial support? 

[00:20:04] Terri: Yeah, we share a lot of information like that too at meetings. We share practical information about medical equipment, and we actually have a social action committee at Well Spouse, and they keep people apprised of what’s going on, on Capitol Hill regarding caregivers, and maybe programs you can apply for. I know sometimes you can apply for a respite program where you can get a grant so that you can go off for a week or something and someone will take care of your spouse.  

[00:20:33] Dannelle: I think one of the biggest challenges of navigating the financial impact of caregiving is that there’s not a whole solution in most cases, it’s piecemeal. It’s about saving money with medical equipment here, utilizing this benefit over there. And so I think that it’s important for people to know that upfront, in order to manage the expenses, that it’s a cumulative process and so, that’s great that Well Spouse provides that kind of guidance. What are some of the first steps that spouses who are brand new, or currently in a care partnership, can take to help navigate that kind of new reality? 

[00:21:44] Terri: Well, you know, aside from finding a support group of other people who are doing the same thing, which is extremely useful, I actually employed a, a geriatric care manager who I found out about through Well Spouse, and these are people who you consult with them. I consulted with her one time for a fee, and I just laid out everything that we were doing, and if she had suggestions she would give them. She knows the broader picture. 

[00:22:10] And she was also able to recommend a good nursing agency where I got my aides from. She also recommended a good primary care doctor who I liked. So, you have to pay them for a consultation, but that could be worthwhile. And well, and then there are people, there is a local lawyer everybody would go to see because she would deal with the money matters of looking ahead and possibly applying for Medicaid, and so a lot of people in Well Spouse were going to her. I, I went to one consultation with her. 

[00:22:43] Dannelle: So, that’s another huge benefit of support groups, in addition to the emotional support and like you said, it’s that it saved you in a way that you didn’t expect, but to also provide resources that are relevant to where you live. I’d like to thank you so much for sharing your story and so much for all of the work that you’ve done to carry on the brilliant legacy of your husband, and in helping others in ways that you did not receive when you needed it most.  

[00:23:37] Terri: Thank you. Thank you for having me. Nice talking to you. 

[00:23:41] [Music] 

[00:23:44] Dannelle: Thank you for joining our conversation with Terri Corcoran. 

[00:23:49] Terri’s story is a heartbreak of marriage hijacked by illness with the added devastation caused by an undiagnosed disease. As a result, Terri was confronted by loneliness early in her marriage as his advocate and caregiver. It was finding support through Well Spouse that saved her there. There she found support groups, heard the stories of others, and built new relationships with others who understood the experience of caring for a spouse. Regardless of who you care for, it’s critical to find your people. 

[00:24:31] Check out our show notes to connect with and follow Terri on social media or learn more about Well Spouse.  

[00:24:40] Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links. 

[00:24:52] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod 

[00:25:08] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts. 

[00:25:24] And remember, the right care includes care for you. 

[00:25:31] [Music Ends] 

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