Woman Shares Her Struggle Caring for Husband's Ex Wife Suffering With Huntington's Disease

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Call 866-WINASIA or to see chickens and other animals to donate, go to CritterCampaign.org. Welcome back to Hope of the Caregiver on American Family Radio. This is Peter Roseburger. This is the nation's number one show for you as a family caregiver. How are you feeling?

How are you holding up? As we talked about last week when the Israelites were camped at Kadesh Barnea and they were told to go in and the report came back that there were giants in the land. Yeah, there are giants in the land. There are things worthy of being afraid of in this world. That's why Scripture tells us over and over and over to fear not, to remind us. And it's hard to see that.

It is hard to see that. And that's why we do this show. It's because we're going to mutually help each other, remind each other of these things, anchor ourselves, and work that muscle of faith and trust. 888-589-8840, 888-589-8840, if you want to be a part of the show. Terry in Texas. Good morning, Terry. How are you feeling? I'm okay. How about you?

Well, you know, I've done a mental inventory and most of them is here, so I think I'm okay this morning. Tell me what's on your heart. Okay, um, right now I've been living with my husband's ex wife taking care of her. She has Huntington's, and she's only 51 years old. And I've been with her three and a half years, and I feel like I keep giving stuff up and keep giving stuff up like I've had to recently shut down my business because she's getting worse and worse. And she really needs to be in a nursing home but at this point, we're not going to put her in the nursing home because we don't want to feel like we dumped her in there and deserted her, because we can't go in and visit.

So, I guess I just need some prayers, and a lot of loving. Well, let's back up on Huntington's disease I'm very familiar with this I have worked with the HD community, many times, and HD had a presence in my own family. And on my dad's side, and it is a for those who don't know what a Huntington's disease is it is a very very ugly disease that has all the, the heartache of Alzheimer's Parkinson's and ALS wrapped up into one, and it is, it is genetic, and it is fatal.

And it is a brutal disease. I don't. I don't know how to advise you as far as what to do with it but I think there's, there's the point where you make the decision. Am I going to compromise everything else by doing this, I don't know the dynamics that go on with your husband's ex wife, and you're taking care of her, where's your husband in this. But he, he works out of town, he's gone two weeks and he's in one week. He works eight hours away. Now how did, how did this just out of curiosity and you know, don't feel like don't feel obligated to share it, but just how did you come about taking care of your husband's ex wife. We've been dating, we've been dating for a while and he had a situation where his son had been taking care of his mom but he also he's been diagnosed with the disease he has it.

And he told us that I can't do this anymore because it's just reminded me where I'm going. So, I offered to step in and help until they could find somebody and three and a half years later I'm still here. How active is your husband working on finding somebody.

We have called and asked and every way. I mean I have some help during the day but it's like at night, she's losing control of her trunk. So it's much harder to like take her to the potty and get her in bed and what is your husband, what is your husband doing to solve this problem.

Or not solve it but addresses. Okay. Yeah, he's, you know, he realizes she needs to go into the nursing home but he won't send her there yet. But, well, he's got you to do it for him.

Sounds like. How's that working out for how's that working out for you. Oh, it's not. And how's that working out for your marriage? Oh, our marriage is still good. I mean, it's, I understand where he's coming from and he's honoring the promise he made to her when they were married which to me is, I mean, I understand that. You know, and when he's.

Technically, technically you're honoring the promise that he made to her. Well, true. True.

Where do you think this is going to go? I mean, HD is progressive and it's going to get worse, it's going to get harder, and you're bearing the brunt of this week in and week out while he's out of town two weeks out of the year out of the month. Right. I think it's time, maybe that, well, my opinion is irrelevant. Do you feel like it's time maybe you and your husband had a different kind of conversation. If he wants to honor the promise that he made to her that's fine that's his decision to do. And I've however noble that is but that's not your responsibility. That's his responsibility according to him. And it's what he's out of the house two weeks out of the month, HD is not HD doesn't take a vacation. Now, and I would, and I would imagine that you don't either. Now, and. And so when he comes home, does he help with all the things that you do. Oh yeah, yes.

Okay, well there is that. And, but this is your life now. Week in, week out.

And it's only going to get worse. And I appreciate the fact that he wants to, you know, care for her and not abandon her, but he kind of has put this on you it sounds like to do you're the you're the answer to this problem for him at least two weeks out of the month. And I do you feel comfortable with that I mean is that sustainable for you.

I don't know how long it's going to be sustainable because I am getting tired. I mean, yeah, I, I had lost two husbands to cancer and thought cancer was bad but Huntington's is so much worse. Oh, and I gotta tell you Terry my heart hurts for you because I this is a, this is a. I remember hearing the president Huntington's Disease Association say when I spoke at one of their conventions and, and she said it's a crappy disease.

It really is it for those who don't know it. You have to imagine the magnitude of what this woman is doing and then the emotion she's doing of taking care of her husband's ex wife in this and what this can do caregiving in a situation like this with somebody that you love that you're in a committed relationship with can strain the best of bonds to do it for your husband's ex wife is to me it's it's beyond the pale. I applaud you for what you're doing Terry I really do affirm that you are trying to do something extraordinary. I think you, you have said it yourself. We both know this is really unsustainable. And in the face of this disease that is not going to get better. The hard decisions are going to have to be made and go back to what we said okay that word is a lamp into my feet and a light into my path, I don't know how this is going to manifest itself without all I can tell you is this is unsustainable.

I could say that it is unsustainable HD is too big for you to do this with only a two week reprieve every when he comes home. And you've taken care of other people with cancer you've done this thing, it is aging you the stress on you, all these kinds of things, and I applaud both of you for not wanting to put her in a nursing home where she's abandoned. How far along does she have dimension now.

It's starting to get there. She doesn't know where she is and she's getting really really hard to understand when she asked you for something, you know, and, and as their son increases in his thing, it's, you know where this is going to go with him. We've talked about that. And, and you're going to be right back here in the same situation and they could overlap. And these are hard choices to make, I mean really hard choices, and I don't, I don't castigate him. I'm not, I'm not doing any of those things I'm just simply saying the reality of what you have put out here today is about as hard as it gets, Terry.

It's about as hard as it gets. And you're going to need some some real professional guidance on this on what this looks like to move do you have the resources to put her in a facility. Yes, we do. Do you have the resources to have home care. We have home care. But as you know this is a 24 hour disease and home care 24 hours. So, I'm not gonna be able to I can't tell you where to go with this thing that would be inappropriate and and that is punching above my weight class I tried not to dispense advice, I could just affirm I think what your heart already knows this is unsustainable and this will cause you to, to go down some very very tough places, physically and emotionally. And, yeah, and it's, it's, it's not going to get better. Next week will not see an improvement in this, because we all know where this is going with her The question is how much time is it going to take, and then what's going to be left of you in the process. Have you guys sat down with any kind of counselor on this. Now, you think that might be a good idea.

It probably would be. Do you know if somebody does, who is her. Do you have a treating physician neurologist involved in this, I would assume you do sent hospice took over now. Okay. When's the last time you saw your doctor. Just recently because I ended up with diverticulitis from the stress of the situation.

Can you maybe get a referral from your doctor to somebody that you could sit down and talk with and kind of lay these things out and see what your options are and how that may work in the, in the coronavirus world. These decisions become even more painful, and they're, they're, they're not going to get less painful by just putting it off to next week. And I hate that for you, Terry, I really do. And my heart hurts for you because I know this is, this is beyond the pale.

How about the first step is maybe seeking seeking a counselor to sit down and look at your options. How about that. Would that be, would that be a good first step. Terry I want you to call back in fact stay stay on the line Terry I want to get your information I want to send you something, stay on the line Jim's gonna get your information okay we got to take a quick break. Thanks for the caregiver.

This is Peter Rosenberger, we'll be right back. And then she had this vision for using prosthetic limbs as a means of sharing the gospel to put legs on her fellow amputees and that's what we've been doing now since 2005 with Standing With Hope we work in the West African country of Ghana, and you can be a part of that through supplies through supporting team members through supporting the work that we're doing over there you could designate a limb, there's all kinds of ways that you could be a part of giving the gift that keeps on walking at standingwithhope.com Would you take a moment to go out to standingwithhope.com and see how you can give. They go walking and leaping and praising God, you can be a part of that at standingwithhope.com Welcome back to Hope for the Caregiver this is Peter Rosenberger this is the show for you as a family caregiver and I want to just touch back on something before we go back to the phone lines with Terry in Texas, I, I, I, I have seen too much of the devastation of this disease. And what she's dealing with is just herculean at best, I mean it is it is it is an excruciating task of what she's doing. And then the fact that they're facing it with her stepson down the road these are these are brutal brutal things. And this is why I do the show. I can't offer advice I can't say you should do this you should do this and if I ever do that I want you to just stop listening to the show. Okay, because I've gone off the rails.

I, I, that is highly inappropriate for me to say that. All I can do is speak to the train wreck that's in our heart as a caregiver and the fear and the the weirdness and the despair and even the resentment that lurks in those places and try to anchor us back in Scripture clear the room so that we can make healthy decisions. And I think in Terry's case that it's a time for her to sit down with a trained mental health professional who can look at this thing for what it is and give them viable options of how this is going to proceed I think she already knows where this is going.

And I think her, her husband knows and certainly I think your son stepson knows it doesn't make it easier. And so I'm also asking you all today to lift her up in prayer. Okay, you don't have to know all the scenarios, you just go to the Lord on her behalf, just like we do with the President, just like we do with anyone these others put this put this woman on your prayer list.

I don't know how many hundreds of thousands of people are listening on a fr right now. But we can all lift her up and pray I will do that right now Lord I just thank you for this woman who is selflessly doing this to take care of her husband's ex wife, she's already done this through cancer for cancer patients for previous husband. Her, her, her body and her heart and her soul is weary. She's afraid. She knows the reality of this disease. And she's fighting this thing on multiple fronts.

And two weeks out of the month she's doing it by herself. We would ask for her to be strengthened today for clarity as they make decisions hard decisions on what to do in this situation, and that whatever decision they choose to make father that they do this with with clear guidance from your word. And whatever path that you lead them on father that they had that assurance that you are guiding them in this, that that next right thing that you've called him to do is the place for them to go.

And I know that there are people all over this network that are agreeing with me in prayer right now about this. And this is a hard place for this woman, and for this family father, and we recoil at the brutality of this world, and the heartache that we have. But we also know that you didn't. And you stepped into this, and you took all of this on you. And that even in this father you're working out something that's extraordinary.

We just can't see it. And so we trust father we trust with with tears filling up in our eyes, knowing that this is this is not an easy thing to do. But you didn't shy away from reaching into the mess that is our sin filled world.

And you took this on yourself. And I ask that that you infuse Terry and her whole family with this level of courage and strength and wisdom father give them great wisdom on what to do about this, about the situation. And we thank you for that in Jesus name, Philip in Texas, Philip. Good morning. How are you feeling Philip. I am feeling excellent.

Thank you, sir. The Lord has been blessing me and healing me. And one thing I wanted to call in today about is for your encouragement.

The last time I spoke to you. I was just having a great big city party and you helped to bring me out of that after the lady that I was caring for had finally passed away. She was needed more in heaven than she was here. I'm so grateful for that. I'm so grateful for the hope that this radio show has brought me and bring me through all the different things that I've been through with my own health. I think that you're doing a remarkable job, encouraging people, lifting people up, praying for us, helping us to get through these bouts that we have in these present vessels that we have as frail as we are.

We're failing left and right, and the Lord is so righteous and true and powerful to pick us up and help us. And I thank him for his angels like you and people supporting this. Well, I'm not an angel. I'm not an angel.

Not by any stretch of the imagination. You may be unaware of it. I'm pretty aware that I'm not an angel. I'm grateful to be passing on what I've learned and things that people have invested into me.

I'm highly convinced I am no angel on multiple levels, theologically and just on other areas. But I do appreciate your call and I appreciate the fact that this show was able to be a source of encouragement to you as you were dealing with some tough realities yourself there. What are you doing now that your wife has passed away? How are you living your life?

What's next for you? Well, it wasn't my wife that passed away. This is probably the one woman I've respected the most, but we had been great friends for the longest time. Her family was like, it reads like who's who in national defense.

There's FBI. Don't give me her biography. Tell me what you're doing now. What I'm doing now is I'm just now opening the shop and going to work. My wife, when I got ill, she decided to divorce me. She booted me from the home and I became homeless for a while there. I was actually living in my truck and utilizing the parking lot next door. Do you have a home now?

Yes, I do have above ground dwelling now. That's good. And you got a career path? Yeah, at 62 years, I should be retiring. I haven't had time to Well, I don't ever plan on retiring. I have no plans to retire. I'm going to work through lunch on the day of my funeral and so I have, I have no plans to retire with me, but that's okay.

Well, let me ask you a question. Would you do me a, would you, would you, would you consider something for, for me? Would you consider focusing from here on out only working on right now, building up your business and your health and your life and your wellbeing and not taking on non-family members to care for, for a season? Would you consider that?

The Lord puts it on my heart. Would you consider that maybe the Lord is putting something on your heart to maybe focus on not ever being homeless again and losing your business and so forth, but focusing on your business to not take on any more caregiving responsibilities for a season? Not forever, just for a season. Would you consider that maybe a better path for you?

Uh, yes, I do believe that would be a better path for me and that's, that's path I'm taking for now for the season. I have, because you're not, you're not in much of a position to care for people if you're homeless. Right. Well, I'm not homeless now.

That was my ex-wife put me in that position and I've, with the Lord's help, I've worked my way out of it. That is, that is great news. So, you know, healthy caregivers make better caregivers and part of being healthy is being financially healthy, emotionally healthy, spiritually healthy, physically healthy, all of these things. And so it may be a season now that this lady has passed away.

Now that you've not homeless and you're building your business, maybe a season for you to kind of tank up before you take on any more responsibilities that are not yours out of, out of commitment. Tell David I said, good morning. Listen, I got to run here, but thank you so much for the call, Phillip and all the best to you. All right. This is, this is part of our journey as caregivers is learning when to not overextend ourselves and get ourselves in situations where we're obligated or we're somehow running to the rescue of people.

There are a lot of sad situations out there that we can't always address and it's not always appropriate for us to address. And one of the things I've learned is they have a savior and I'm not that savior. Now if God brings something to my life that is clearly mine, like in my situation, I'm married to a woman who is my covenant partner. She's my wife. I'm going to care for her. I have parents that are elderly.

They're listening right now. Yes, mom and dad, you are elderly. You know, I don't know if you consider yourself elderly, but the rest of the world does. But I have parents who are elderly and I am commanded by scripture to honor them and to care for them. That's that's part of the journey as family members. But I don't have to overextend myself in this thing because what happens then I start depleting the resources that I have and I end up compromising the care of the ones I'm charged with. And these are these are important things for caregivers to learn is it's called stewardship. Stewardship. And that's a word that we don't think about a lot in our in our society and our culture. We're twenty five trillion dollars in debt.

Clearly our our government is not concerned with stewardship. And I want to end on that note. We've talked about fear today. We've talked about trusting God and these brutal things.

We talked about God seeing us and seeing his power working in us. And the last thing I just want to leave you before we go is understand the stewardship of what we have as an individual of our own health, of our own well-being, of our own clarity of thought, spiritual health. And also as a citizen of this country, you have a stewardship responsibility to vote and to participate in the freedom and the democracy that we're blessed to have. That's being a good steward. Are you a good steward of the liberty you have?

Something to think about. This is Hope for the Caregiver. Hope for the caregiver dot com. If you want to be a part of the show, go out there right now, spend some time looking what we have to offer and see if you can participate today. Whatever's on your heart to do, we're grateful to have you. Hope for the caregiver dot com.