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#58 - Caring for a Spouse: Navigating the Financial, Legal, and Emotional Journey with Sandy Moss Moder

Eric Blake: What happens when the retirement you imagined takes a turn into unchartered territory, like becoming a full-time caregiver for a spouse facing cognitive decline? Today, we're diving into one woman's powerful story of love, loss, and the financial and emotional realities of caregiving.

Eric Blake: Welcome to another episode of the Simply Retirement Podcast, where we want to empower and educate women to live your retirement on your terms. Our guest today is Sandy Moss Motor, an artist, art instructor, and author of the memoir. If I have one more brain thing. She spent six years caring for her husband after his diagnosis of frontotemporal degeneration, or FTD for short.

Her story is honest, emotional, and full of practical insight for women navigating caregiving financial uncertainty and life after Loss. For all the links and resources it's shared in this episode. You can visit www.thesimplyretirementpodcast.com. And with that, Sandy, welcome to the Simply Retirement Podcast.

Sandy Moss Moder: Thank you, Eric. I really appreciate this opportunity to share our story that my husband and I went through.

Eric Blake: Excellent. And I haven't, I just, full transparency. Haven't had a chance to completely read the book. I have got about halfway. Okay. But I will tell you that it's definitely touching just the, the insight that you share.

I it's an amazing story and I really would love for you to start there. Just talk about, where your story began, how that caregiving journey began, and what led you to actually write your memoir.

Sandy Moss Moder: Yes, thank you. When my husband was finally diagnosed with FTD, we will call it that, I started journaling.

The process, my feelings, the emotions, the decline, the various actions and behaviors that he had. And so that started the idea of writing the book afterwards.

Eric Blake: And for those that are unfamiliar with what FTD is and how it, how did it affect your husband? How did it affect you? Can you just tell what that is and then begin?

Getting into a story about how it actually impacted your,

Sandy Moss Moder: yes. FTD is a form of dementia. It is not known very well. Even among some of the doctors that we went to, they remember reading a little bit in a textbook about it, but it is so rare. It's now being diagnosed further. But, so basically it is a disease that affects various aspects of your, of a life.

First of all, for him it was behaviors that was the major manifestation. And that just meant that he could be contentious, he could, be angry, he could be aloof, he could be non-talking non-communicative. So there are various aspects of the disease that can come with language. Too much language, not enough language.

It eventually deteriorates to the point that they're almost like a teenager with his behaviors self-centered, lack of awareness of what he is doing, even lack of awareness that he has a disease. I. And so it's quite complex and some people lose their language. He did not lose his language, but he would often babble at certain moments in time.

He would, be snotty sometimes. I would always say, is he four or 14 today? I didn't know. And then eventually it does affect his motor. It affected his motor skills. He started falling similar to other dementias, but. Mainly the brain just was not able to keep up with the daily needs and functions and he would just stand up and fall over.

So it was quite complex. And he also, through speech therapy testing, we found out that he did not, I. Understand, say in a three phrase sentence, he might get two of them, but not one, and therefore would cause him frustration because he did not know what he was hearing wasn't correct what he perceived.

Eric Blake: That was one of the things I found so interesting is just understanding the journey that it took to finally get the diagnosis. I you, in the book you referenced multiple different neurologists and different doctors that you had to first go to this one and get. Maybe got a dash of what might be going on, but then it took another level and another level, and just the, again, these, just the persistence that you had to try to find a an answer was very admirable to say,

Sandy Moss Moder: Thank you.

I was his advocate and I needed to know what was wrong with him because I didn't know what to do. So basically we started out with our primary care physician and I wrote a list of things he had been doing over the past several months, which were increasing and the doctor asked him if he, this is what he was doing, and he honestly said yes, which was surprising.

So then we had the first MRI. And that showed brain shrinkage, but not much else. And so what we found out later, an MRI does not show up anything for frontal temporal dementia. It just doesn't happen. And so then we were sent to probably a behavioral type doctor, but then all of a sudden he just. Left the office and we found out later he had a severe stroke or something, heart attack.

But anyway, he never came back, so we had to move on. So then we would go back to the primary care physician, and then I'd heard about a neurologist in town, but we couldn't get in for several months. So I took. The next one available in that group. And that's when she sent him to testing, which is neurological testing by a neuropsychologist.

And at that point then we got a diagnosis and that's where we started to educate and see what was happening. There were no medications. He was put on one medication, which is used for Alzheimer's, and it was quite expensive, but we never really saw much happen with that, and I don't think the Alzheimer's medications really work much.

Then they are put on an antidepressant, which helps calm them down. And so we just started every three months going to the neurologist. Then she. Left the practice and then we had to go back to our primary care and get a referral. I tried a, another neurologist, but he basically didn't, knew very little about it and I didn't feel like we would get very far.

I. With what he knew to help. So finally he went to a geriatrics psychiatrist, and that was a person who could give him medications, like Mar GP was not able to give certain, authorize certain medications. So we did that. Then later I just got very frustrated. What to do. What to do, and I had been contacting memory care places for the future, like facilities.

And I heard from this one facility of this doctor, a geriatric internist in Plano. And so I called, got in within two weeks, and that started the journey of working with medications to help him as his symptoms increased, and just his understanding of FTD, and that's what we

Eric Blake: now, Sandy, one of the things you've shared in the book, and relatively early on in the process it seemed is that, one of the biggest fears that you had was that concern about running outta money.

What were some of the steps you took early on that financially helped navigate those years?

Sandy Moss Moder: Yes, I was worried because as you delve into care and cost it's hundreds to thousands per month. So initially, I. What I did was I went to my lawyer and said, we need to set up a trust for him. And he said I'm gonna refer you to an elder lawyer.

And so that became the go-to person. She set up a trust. We redid our wills so that, things would be kosher in case something happened to me. In other words, a, a trust. So then after that, she also guided me about finances at the moment and needs we currently had, and then also what will happen after he's gone with my income.

And so that was the first step we took. Then I also contacted our investment advisor, and so we looked into that. So when I needed money for facility care, it was a simple process and she would go, help me get that done. Then also I contacted my accountant, where are we at now? So we would meet every six months or as needed to make sure that.

I was functioning okay and what could I do? So that's the three major things that I did.

Eric Blake: So it sounds like one of the things, we talk about this a lot, is having that financial team behind you. So knowing Yes. Who do I turn to for specific questions? Was there anybody, any other professionals that were part of the process or were those, you talked about those three key people, you, your attorney, you.

Yeah. Let me look at my notes a minute

Sandy Moss Moder: here just to make sure I've covered everything. Yes, that was pretty much the financial aspect of it, but that's covering just about everything that affected, our current income. I was advised because I was of age, I could take my social security early, that would give us more cash flow for medications and daycare that I eventually used to keep him engaged and busy.

I. Okay. So basically that I did, and one of the things I did do with that money was save it toward a car in the future because I wanted to make sure, knowing I probably couldn't afford a car payment after he passed away, that I would have a new vehicle and it would take care of that need in the future.

Eric Blake: I think that's interesting that you bring that up because one of the things, whether you, I. Unfortunately, a lot of the rules of thumb when it comes to social security are it again, it's more maximizing your social security. So waiting as long as possible or starting as early as possible.

ProudMouth: Yes,

Eric Blake: but I think the optimiz optimization in your case, that becomes such a critical decision about saying, okay, I'm making this decision because it is going to positively impact or financial decision, not because I don't know how I'm gonna long, I'm gonna live. But putting yourself in a position to give you some flexibility and maybe help you make smarter decisions either today or down the road.

Sandy Moss Moder: Yes, it was a good future plan and I really appreciate that offer of doing that. Basically what I was told and did become true because he was the made more money, the main breadwinner. Once he passed away, I would get a high percentage of what he. Received for social security at that time, and then I would lose mine.

So I would gain so much and then I would lose all of mine. So then I knew after he passed away that my income would go down a certain percentage.

Eric Blake: Do you mind if I ask just age wise, that's one of the things I didn't ask about before. So age wise, getting in general how old are you when this process started?

How old was he? And had he already started his social?

Sandy Moss Moder: Yes, he had started social security. Okay. So he passed away at age 73. So minus six years. He was in his middle sixties, had decided due to corporation changes and encouragement for older men to retire. He had, yes. He then went on to work, contract work for several years.

Okay. So my age, so when I decided. To take my social security, I was 67.

Eric Blake: Okay, so you were still, you're a little bit over full retirement age at that point? Yes. Okay.

Sandy Moss Moder: And so I was going to be the one to hold out till 70, but then when it was recommended, it was very helpful to pay for, certain things and as well as saving for a vehicle.

Eric Blake: Yeah. And I'm so glad you to hear that advice was given or that you were aware of those options. 'cause unfortunately, so many situations where that's not the case and I almost always encourage, the wife should always be I almost gotta almost make the argument the wife should be the decision maker when it comes to social security and when it should start, because as you experience, the wife will typically outlive the husband.

And you just wanna make sure you've made the proper decisions or the most effective decision when it comes to social security benefits. Espec, espec.

Sandy Moss Moder: Yes. And I was, that was probably one of the most important major things besides setting up a trust that I was told Yes. And yes. And I followed through.

And again, that was putting a good elder lawyer, not just a regular lawyer, which there's nothing wrong with that, but an elder lawyer who specializes. And then also, just having also even the geriatric internist working with me because of funds such as. His medications were very expensive and basically you can over a year's time hit that what they call donut hole, where then you have to pay in your Medicare pharmacy aspect.

Then you have to pay full price for, this one drug was a thousand dollars a month full price. And basically, the physician could then look at other derivatives of the same drug that was less expensive. So I had. Help all along the way from various professionals.

Eric Blake: Now I know eventually you, you made the decision to move your husband into a care facility.

Can you talk about what that process was like? What did you learn that might help others as you went through that process?

Sandy Moss Moder: Yes. First of all, through the elder lawyer, she recommended Joyce Logan, who now recommended to you, and so I appreciate that so much. I'll just say that first because I, yeah, she was so helpful.

So I went online. I started looking at questions to ask, okay. A facility, and believe it or not, there's, even from Medicare, there is this long pages of questions to ask. So I checked out other sites and I put together my personal list, what I was interested in. Then I would make an appointment with a facility and I would go and interview.

Some of them did not appreciate that quite so much because I had my pages and I would write my answers. As we talked Mo, most of them listened and did give pretty good answers. Sometimes they didn't have all the answers but I was also looking for not a, just a nice looking facility, but. What was the interaction between the staff and the patients?

What was the dietary aspects like in a facility? What kind of activities did they do and et cetera? So I looked at some got very discouraged. Some of them would just flat out when. They asked me what his diagnosis was, would say, we don't do, we don't take FTD patients. And it was mainly because of their behaviors.

They said, so sometimes I just left very, discouraged. So that's when I had Joyce Logan from Ruby Care come in and we set aside a week and this was when I had to definitely make, I had made this decision. And so we went to various places and some were quite interesting, some were quite scary.

Some were smaller homes, home situations, which we thought might be better for Norm. But at that point, most of the patients were further along than he was physically, and we felt it would be discouraging for him to be in a place like that. So we ended up going to a place that I had. Gone to and checked about but had not interviewed.

And so last of the end of the week, the last, option, and we found this wonderful place in which the director said, of course we take FTD. And of course I understand. And she was educated in understanding. What FTD behaviors were like, and so they had a memory care and an assisted living, dual aspect memory care.

I just still felt like he was. More intelligent, too far, not along that far. So basically then the director walked in, I was talking with the salesperson, the director walked in the door. She came up knowing that there was an interview, and she shook norm's hand. And she started talking to him and he's talking to her just like a regular person.

And she looked at me and said, we have to talk. And I said, oh, yes we do. So we got. We talked, oh, I think she grilled me for an hour or two about what are his behaviors, and that's fair because, she has a responsibility of all the patients there. And we got he looked at the only apartment available that day and he had been wanting his own apartment for years.

And so basically. We signed him up, he agreed to it, and a couple months later, or a couple weeks later, then we he entered into. The care facility.

Eric Blake: And I wanna just step back just for a second. 'cause Joyce, Logan, you and I both know, she's a great resource. Yes. Joyce is what's known as a senior living advisor.

I actually had her on episode 21 of the podcast. So we will share the link to that episode In the notes of this episode, is it, again, it's there. A lot of people don't know that's a, that somebody's out there that can help you navigate these decisions and I think at least what I've taken from what you've said is just having somebody to have your back.

Knowing where to find the right places or what to ask, what the questions to ask. So I am so glad you've, you found Joyce. I'm glad I know Joyce as well.

Sandy Moss Moder: Yes. And she, it just was a game changer for me 'cause I was trying all this on my own. Everything was on my own and I was exhausted by this point.

This is, five and a half years in. And it also was a. Huge decision to make. So to have Joyce there, just that calm, steady person who's knowledgeable and who, if I don't ask all the questions, she'll chime in and ask. Okay. And just emotionally have her support. I don't know if, I think probably Joyce is aware of how emotional this is for family members, making this decision.

But I must say once we got through it all, that it was the best decision to make and it. Brought peace of mind for me.

Eric Blake: Yeah. And now after you, after your husband passing if you wouldn't mind sharing, what are some of the challenges you faced in taking over everything? The finances, the household paperwork, all those types of things that go into tying, trying to tie everything together and live your own life at that point?

Sandy Moss Moder: Yes. So in the middle of the loss, okay. After, we get everything settled and it took a month, we had a memorial, not a funeral. And so we were waiting on his ashes to come back. He had done, had donated his brain and his body to two different medical facilities.

So that one itself was a very giving thing for him to decide. So basically then I'm sitting here and grass needs mode, which he always did all the hard work and I had to change over all of the accounts, like utilities, your banking accounts. Oh, just on and on. Plus also apply for. His life insurance policy.

So I needed to start that process. And I had always done the bills. I had always paid the bills and did the financial parts like that, but then he always knew what was going on. We had a monthly discussion about that. Each month I. So then he basically had, as I say, done the yard work. So then I'm out there cutting limbs.

Luckily not mowing the grass. I had a neighbor to assist, which he still does, but taking over everything was daunting. Yes. And so I made a long list of everything I needed to change. I also, because we had no funeral home, I needed to go to the courthouse to get the death certificate. And that was one of the hardest things I had to do after he passed away was go there and sit and wait my turn in line and then get everything done and pay for the, certificates.

And then on my way home it was, I was like inside just a zombie, just feeling the sadness of this is a final decree. Yeah. I think you need to be aware too that a lot of things you take over, sometimes it requires computer usage, and I am somewhat adept at it doing office work in the past, but there were more things I had to adjust to putting more accounts now required into, com online computer.

And so I had a huge learning curve in that I had to figure out. Yeah. What I'm supposed to do to manage all of these cha changes in my life. So basically I would say you have to do everything. Then it's, you're not divvied out, he does this, I do that. It was now you had to take care of everything.

And that was, I'm capable. I realized that, but it was also daunting to start that process.

Eric Blake: So I'm gonna, I'm gonna reverse my questions that I had originally planned because, just because of what you just talked about. So if you think back. What advice would you offer to women who may just be starting off on this caregiving journey?

What are there any, a couple of things. Hey, here's what I would suggest you do if you're just initially starting that process.

Sandy Moss Moder: First of all, once you get a diagnosis, educate. Educate yourself. Okay. FTD was not highly known. There was one book out there that talked about it. It's called, so If It's Not Alzheimer's.

And so I read that and it's very technical oriented, doctor oriented, but it helped me know where he was, along the journey. So I would say educate myself also, don't be afraid to stand up. For him and yourself with doctors and various testing facilities, just to ask questions, stand up to get it done.

Stand up to asking questions so you understand more. 'cause initially when you're told, they don't tell you very much. It's oh okay, we've gone into the appointment, we know something's wrong. And then when we heard about it and then they said there's no cure, there's no medication, there's no nothing.

It was like a huge shock. So education to me. Also reading books about other people who are going through similar problems. So I started, I'm a reader, so I started looking for books that would, and I hear from this person, oh, I read this, or I'd look online. Or the elder lawyer recommended a couple books for me to read.

And so knowing that I could identify with other people going through these situations just made it like you had a friend going along with you. Yeah. That it just made it more bearable.

Eric Blake: And that's what I, leads me. So that was a perfect lead into the next question I wanted to ask and give you a chance to share.

How Art, how writing helped you get through a lot of this and how you're using your story now to help others?

Sandy Moss Moder: Yes, so basically journaling I had done since junior high and when I was feeling frightened alone, scared, scared for him not knowing what to do every evening before bed I would journal and I would just write whatever I thought.

Could be good, bad or ugly. It didn't matter. No one was going to see it. And so I journaled, okay. And then after he passed away, during COVID, I needed a project and I started this was a journals on manila paper. So I started putting everything into my computer and moving things around and looking at the timeline, and I thought, oh, I have something to say.

Yeah. And so basically it took me about a year to work on that because I had some duplications, like sometimes the feelings came up every day, the same thing, the worries. And so basically I started putting it in some kind of order. Then I thought I had a book, right? And so I have friends who are avid readers.

Educated, say in English, grammar, have a degree. And I sent it out to friends that I trusted, to be honest with me. And they're going, yeah. You got something, but it's not in great form. And so then I hired an editor and from there the book developed and we worked a year and a half, very diligently, and the book started to develop.

I had creative writing in college for one semester and I started remembering all these things and my editor was a stickler on grammar and the Chicago style of writing. And so we used that as in agreement as our premise and making chapters and just evolving everything into a readable, progressive follow through form for the book.

And what I hope from the book is that. Other caregivers will see they can do it. It's hard. I did not say, oh, I sailed through this. I had all the answers. No, you have hardly any answers. And so you take it day by day and you're an advocate for your loved one and basically. Write it down, whatever you think feel.

The other thing is I wanted to document the manifestations of this disease in him, because so many times I'll hear, whoa, it's behaviors. What were those behaviors? And as it progressed, they changed. They could change every day. And so I wanted to document a good section to say, look, this is what he did.

This is what he said. This is how I tried to. Handle the situation. This is how I try to be on point for every moment that is going, through this disease. Then the final aspect is I think this book would also be, I. A good book for medical personnel to read since I did give time to documenting the, different manifestations, the different aspects that he experienced.

And at that point then I thought, wow, I. Medical people need to know. 'cause even the best doctor who hasn't lived with someone with it or only knows it from a textbook, has no idea what the day to day is like. And I think that was why I wrote the book. I want people to know what the day to day was like for both of us.

Eric Blake: That's perfect. And where, just to make sure we get this out there, where can listeners find your book and how can they connect with you if they'd be interested in doing

Sandy Moss Moder: so? Yes, I have a website set up and you can find me at Sandy. Moss motor.com and the website will come up and there if you want to communicate with me is an email address and a way to order the book if you're interested.

Eric Blake: That is perfect fan. Sandy, thank you so much for your honesty, your strength. Your story is one so many women can relate to but often feel like they have to face all this alone. Obviously you give them a voice, and I'm so grateful that you, we had you on the podcast. We got the, to make this happen.

To our listeners, if you find yourself stepping into that role of caregiver navigating life after a spouse's illness or somebody trying to make sense of whatever's next just know this. You're not, you don't have to go through it alone. Whether you're need of help connecting to a trusted financial professional, elder law attorney, senior living advisors like Joyce Logan even free financial coaching, just to kinda get your bearings on where, what your resources are and where you're at.

We have a tremendous network of amazing professionals. You can reach out to us directly. We're glad to share our connections and support to help you get through whatever you might be facing. That is it for today's episode, again, for all the links and resources that Sandy mentioned. These, some of the episodes that we've referenced in this episode as well, you can visit www.thesimplyretirementpodcast.com.

Until next time, please remember, retirement is not the end of the road. It's a start of a new journey.

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