They Raised Two Children With Huntington's Disease

You don't have to worry. Don't you be afraid. Joy comes in the morning.

Troubles they don't last always. Welcome back to Hope for the Caregiver. This is Peter Rosaburger. This is the program for you as a family caregiver.

That is my wife Gracie from her CD Resilient, singing that my life is in your hands. And that message is particularly poignant for my guest on the program today. You know our program is designed specifically to help those who are caring for chronically impaired loved ones. And in my opinion, nowhere is that more brutal than caring for somebody with Huntington's disease. Those of you who are regular listeners to the program, you've heard me talk about Huntington's disease several times. I've spoken at several conferences, national conferences dealing with this particular disease and this disease was in my father's family. I'm so grateful that it wasn't passed on to him and subsequently to us. It is a horrific disease.

And no one knows this more than the couple I want to introduce you to today, doctors Laquita and Elton Higgs. Their new book is called Shattered Dreams, but Hope, encouragement for caregivers of Huntington's disease and other progressive illnesses. Now, for those of you unfamiliar with this disease, it is a genetic disease that is loosely the combination of Lou Gehrig's, Alzheimer's and Parkinson's and maybe a little bit of schizophrenia all rolled into one. It is a horrific, horrific disease. You don't necessarily know that you have it until you're of age.

They can test for it now at 18, but symptoms don't start showing up until you're much later oftentimes, sometimes into your 30s, maybe even early 40s. If you have this disease, you have a 50-50 chance of passing it on to your children and they won't know until they're of age. It doesn't diminish over time. If you get it, you get it in all its full force. Now, once it's broken, it's broken and the family can go on without having this looming over them. But it is always fatal once contracted.

My guests today know this all too well. They adopted a little girl when she was just a baby and she developed this and it took the entire family into a very dark, dark place. This daughter, her name is Cynthia, eventually had a child and the grandchild developed Huntington's disease as well.

But when the grandchild was a little baby, Cynthia, by that time, her Huntington's disease was already going and she couldn't take care of this baby and so they adopted their grandchild and raised two girls with Huntington's disease. They're here to share their insights, things they've learned, the painful journey, but ultimately the hope that has sustained them. So Elton Laquita, welcome to the program. Thank you. Good to be with you.

Absolutely. I wanted to start off with you, Laquita. As I was reading your book, there were certain things that just leapt out at me. And one of those was on page 32, you over and over kept trying to change Cynthia's behavior to hold her accountable. And you became so puzzled that she was able to make choices. So why couldn't she choose to be reasonable?

You would watch her become agreeable and kind around people she wanted to impress and then become very rude and sullen with you and abusive with you. And as you share in the book, Huntington's patients, and by the way, it's called HD, Huntington's disease is called HD, they can choose to be reasonable at times, but they can't sustain it. It's fleeting for them.

Talk a little bit about that, Laquita. Well, that's one of the, I think, the most baffling thing it was to me for this disease because you do try to keep teaching them, especially if it's your child, and yet that doesn't work. And it takes a good while to learn that. It took me a long time to realize I've got to just accept her as she is, whether I like it all or not, and just love her. But it's hard to get to that point, and I made so many mistakes in trying to get there and trying to understand it all.

I was just going to interject. There have to be boundaries sometimes, but they're to be necessary boundaries and not just preferable boundaries. I remember so well when a pastor, this was after we had been through an awful lot with Rachel, the second one, and he said to us, I see you now. She had just graduated from high school, and we've had such a time. And he said, I see you now as a caregiver, not a parent. And that may sound simple, but it made a big difference to me because I could just accept her and love her and not try to change her because it was counterproductive when I tried to stop her from doing so and so. Just go ahead and accept it if it's one of those things you can accept. It's only, what is it, property or, in one case, I thought, this is only a plant.

Just go ahead and let her tear it up and cut it all to pieces. It's okay. You reference this in your book, and you said that they have childish behavior, but they can't grow and learn as a child. They are locked in that place, and they have serious consequences for their behavior.

Whatever they desire at that moment is unleashed without any thought to safety or common sense or consequences or other people. And this is where you found yourself for many years, and I don't think people quite understand the heartache that's involved with HD. You all had to have law enforcement come to the house and other first responders come to the house numerous times.

They have berserk behaviors, childish tantrums with adult consequences, violent, destructive adult consequences where you were concerned about her life and your own. And I want to pause for just a moment and point listeners to HDSA.org, Huntington's Disease Society of America.org. It's a wonderful resource for you to go and learn more about this and see what's going on. May is HD Awareness Month, and this is an appropriate time to go out and learn more about this disease and what's going on with it, what's new in treatment and how families are coping with it, families like the Higgs family that we're talking with.

There are about a quarter of a million people in this country, I believe, that are struggling with this and their families. And it starts off, it's a progressive disease, so you'll see twitching and so forth. It used to be called Huntington's Chlorea, and you would see sometimes the body acting very spastically, and then the cognitive component starts kicking in, and then it just descends into just horrific circumstances for these families. Until, I think, 1993, there was no way to diagnose what this was unless it was just through observation. There are now tests that they can do to identify this disease, and there are resources being developed every day. But as Laquita, as you stated in the book, unlike Alzheimer's and some other diseases, progressive diseases, you can kind of wrap your mind around some of that. But with this disease, it kind of comes at you from every front, and there are young people dealing with it.

They're not elderly people. Rachel was diagnosed when she was still a teenager. Cynthia, I believe, was 25 when she was officially diagnosed with this. Is that right?

Yeah, 25, uh-huh. So you're dealing with someone who is vibrant and young and has an exciting life, and then this thing takes a hold of them. And in fact, there was one place in the book you related a story where first responders had to come and literally haul her away. And you went out to meet with them first to plead with them to be gentle because she has a disease. Talk about that. Yes, Elton is the one who went out to the police.

You want to mention that, Elton? Yeah, I felt they really needed some preparation before coming into the house, because I'm sure that there are a lot of cases that they're called out to take care of domestic violence. That's not the frame of reference that they needed in order to handle the situation with Rachel. It's so painful to see your child being tied to a gurney.

I'm sorry, but it's so painful, and we just wanted better treatment for her if possible. And we got it. And thankfully, we have brochures now that the Huntington's Association publishes that we can give to your local law enforcement to help them understand, too. One time, Cynthia was almost arrested for drunkenness because the policeman saw her walking down the street and thought she was drunk. And those things happen when they're out in the community, too. We expect a lot of our law enforcement, and I know quite a few sheriffs, deputies, and cops. And they all echo that going to a domestic event, some type of situation going on in a home, can often be the most dangerous call for law enforcement.

And the more education we can provide them, well, for example, I got a friend of ours who has a son with significant mental issues. He's like six, three, or four, and by like almost 300 pounds. He's a huge guy. And one particular event, he came to the door with a paintball gun, and that could have gone really, really bad.

I mean, think about it. Police are called, and the big hulking guy shows up at the doorway looking like he's carrying a weapon, even if it's just a paintball gun. That's a recipe for disaster.

And in your case, you had both daughters. Law enforcement was called numerous times for both of them, at different times, of course. And they don't know what to expect. They don't know.

They just see somebody that's out of control, and it's not meth, it's not cocaine, it's not heroin. It is a disease, a disease that is beyond what most people can really wrap their minds around. There was one scene you mentioned in the book, and the reason I'm spending so much time with this is, and we're going to spend some more time as the show unfolds, because I want people to understand what a disease of this magnitude does to the family so that they can offer more encouragement and compassion and not lecture or try to preach it. And there was one particular passage in the book, Laquita, where you stated, and it broke my heart, because you said, I just got tired of talking about it.

I didn't want to have to keep explaining what HD was to people. It was just exhausting to you. Talk about that a little bit. Yes, it was frustrating, because you might want to share, because we all need to share things, and would try to do that, but they would just sort of pass it off as, oh, that's normal. But we all have that at times, and it's not true. I knew it was not normal, but there we are.

I just began to be quiet and not try to help people. We're going to talk about this some more in the next several blocks of the program. We're talking with doctors Laquita and Elton Higgs and their journey with Huntington's disease, with their daughter and eventually their granddaughter, who they ended up adopting and cared for both of these women through this horrific disease. This is Hope for the Caregiver.

We'll be right back. We've been working with the teams over to West Africa. We've been working with the country of Ghana, several clinics over there now, and each week more people walk because of Gracie's vision. In 2011, we launched a new program outreach to family caregivers. Drawing on my now 36 plus years as Gracie's caregiver through a medical nightmare, I offer insights.

I've learned all of it the hard way to fellow caregivers to help them stay strong and healthy while taking care of someone who is not. If you want to be a part of this, go out to standingwithhope.com slash giving, standingwithhope.com slash giving to help us do more. At Standing with Hope, we're reaching the wounded and those who care for them. Standingwithhope.com slash giving. My hands lean on me. We will stand. There's a treasure at the end of this narrow road I'm traveling and it gives me a purpose for my life. Welcome back to Hope for the Caregiver. This is Peter Rosenberger. This is the program for you as a family caregiver.

If you want to be a part of the program, there's a form out there you can fill out. Let us know what's on your mind and heart. I am talking with Drs. Laquita and Elton Higgs. Their new book is Shattered Dreams, But Hope, Encouragement for Caregivers of Huntington's Disease and Other Progressive Illnesses. And while their journey describes their interaction with two daughters with Huntington's disease, the insights and the principles they've learned, they apply across the board to all of us as caregivers. So I wanted to take a little bit extra time with this. Huntington's disease, by the way, is called HD.

But let me get right back to this. Elton, in the book, you referenced an online posting that you did to an HD group. And here's what you detailed. You said, I think that what we all experience as Huntington's HD caregivers has at its core the disappointing expectation that our loved one could do better than she does, or he does. Caring for an obviously handicapped person or crippled or mentally deficient from birth or even Alzheimer's seems so much more straightforward since there's no perception that the person could do more. And you went on to share that even taking care of a baby, even though the baby seems to consume all this time and everything else, we don't look at the baby as being perversely selfish.

It's a baby. We understand it. But with HD, they act perversely selfish, but at the same time, they're able to reason certain things out. It seems like they're very selective of what they will do, what they won't do, what they can do, what they can't do. And it causes a great deal of confusion with the caregiver.

Talk a little bit about that. I'm a person who spent my career in an academic setting, and an academic setting is supposed to emphasize the use of reasoning and logic and so on. And you try to proceed on the assumption that if you just speak calmly and with common sense that you're going to be successful in whatever relationship you're trying to manage. And all of that is out the window when you're dealing with a Huntington's patient, because the Huntington's patient may not even herself be able to understand the lack of logic in what they're doing.

And if they don't understand it, then how can somebody outside their minds pretend to comprehend it? And so that was a big adjustment in thinking and approach that both of us had to accept, as Laquita has already expressed. You exercise your responsibility to keep the environment safe and to put whatever boundaries need to be in place to do that.

But in matters of pure preference or convenience, always be prepared to yield some ground. And those expectations were very much alive for our Rachel, our 28-year-old daughter, who was diagnosed just before her 18th birthday. And she knew what Huntington's was and looked like, because she watched her mother die, her biological mother, of it. And so that's where we got the title, Shattered Dreams, those expectations she had of a normal life to eventually be married and have children and whatever career she wanted. But no, she knew that was all gone and it was a very painful time for her.

She became severely depressed. You wrote in your journal, and I'd like for you to talk about how important it is to keep a journal. And I'd like for you to talk about how important it is to keep a journal for those who are going through not only this, but other things. But you wrote in there, not only was she acting like a child, but unfortunately she was not trainable like a child. That must have been a very painful thing for you to write. And I imagine you have a lot of tear stains in your journal.

You're absolutely right. And I agonized, too, over my role, and I knew I wasn't doing it well. And so it was therapeutic on Minicount for me, but it also was very, very useful, because later we could look back and trace some of the behavior. And that was especially important with social services when we began to be hooked up with them to document certain behaviors and, well, just appointments, visits to the doctor and so on. But it was the anecdotal journal that I kept. I kept two.

I kept one for the official appointment. And then medical history. Yeah, but the anecdotal journal told of the day-to-day episodes or activities, and that was so useful. Of course, useful when I wrote the book. I had read and reread it, and yes, I cried over it. I'll let whichever one of you wants to address this, but I want to read this from the book.

And then you wrote this line. Yes, love sometimes means that we have to do some very hard things. You wrote that, Laquita, but whichever one of you wishes to unpack that, please do. Every time we had to call the police or something for help, it was so painful. It was so difficult, because that wasn't the way we normally operated. And to see that happen to our child, it was devastating. I think we need to interject here, though, that we, in our present situation, see the hope side of it. We went through the period of our living together and being there firsthand to see the shattered dreams.

Not to be able to fix it, we just had to sort of find ways of putting parameters around it, and as Laquita says, love to the best of the ability that God gave us. But we were just in a counseling session today commenting. With Rachel. Yeah, with Rachel. Her speech is very difficult to understand now, and so the counselor asked us to continue being with her in that. But we were able to tell him that things at present are working well between us and Rachel.

Yes, in both cases with both daughters, the behavior became so extreme that we couldn't handle it, and so both were placed into adult foster care. And especially with Rachel now, and I think it helped that we had learned a lot, we have a wonderful relationship with her now. Because we're not the mean parents trying to keep her on the straight and narrow, but we just enjoy each other.

We have her home with us three days a week, and she's here right now, in fact. And that's beautiful experience now. And so, you know, I think with all... I'm sorry, go ahead.

No, no, go ahead, go ahead. Well, with all these shattered dreams and expectations that will never be met, we're better people for it. And I'm thankful that the Lord led us onto this path.

He did, very specifically, we felt we were to adopt the older one, Cynthia. And I know we're far better people than we would have been otherwise. Well, that's something I would like to spend a little bit of time with you all. You write in this, the Lord was teaching us the meaning of true love. You love when you're even receiving nothing.

Not even a smile or a kind word in return, nothing. And I don't think anything describes better the love the Savior has for us. Paul said He loved us while we were yet enemies. You two have had to walk in that type of love where your child was screaming at you, abusing you, beating you, tearing up your stuff, cheating you, everything. And you've had to walk through this and love. And I wanted to give you an opportunity to share how you've tapped into the inexhaustible love of God to do this for your daughter that you adopted and then your granddaughter who you also adopted.

Elton, would you take that one? One of the practical things that we learned in very tense situations with both daughters was just to stop right in the middle, Laquita and I, and to say a prayer. Sometimes just mostly a silent prayer, but we need to do that. You know, we're at the end of our wits, we really don't know how to react, Lord. If you'll pardon me for interrupting, let me interject. Both of you are PhDs, but I'll bet you those prayers weren't very academic, were they?

I bet they were. Not publishable prayers, I think. I certainly get that. But you know, I think those are the best prayers and I think they reach the heart of God because we don't know what else to do. Dear Lord, help us.

Lord, help. Help is a complete prayer. Yeah, and time and time again, He came through.

We were able to find some way of resolving the situation, whatever it was. Yes, He's marvelous. He is so good. His mercies never end, they are new every morning. Even in the face of something so horrific as Huntington's disease. I was just going to say, I like to say, the longer we live, the better the Lord's record.

Yes, indeed. We're talking with doctors Laquita and Elton Higgs and their new book, Shattered Dreams But Hope, Encouragement for Caregivers of Huntington's Disease and Other Progressive Illnesses. If you want to know more about this disease and how you can navigate through it, if this is in your family, or how you can help others do it, go to hdsa.org. That's Huntington's Disease Society of America dot org. There are a lot of resources there, materials, education, community, and so forth.

This is a horrific disease. These are very highly trained intellectuals, academics who came up against something that was beyond their imagination of difficulty and pain and sorrow, but they persevered through it and established a beachhead for hope. We're going to talk more with them when we come back. This is Peter Rosenberg and this is Hope for the Caregiver. Hopeforthecaregiver.com. We'll be right back. Welcome back to Hope for the Caregiver.

This is Peter Rosenberg. This is the program for you as a family caregiver. We're so glad that you are with us. Healthy caregivers make better caregivers.

Part of that journey to healthiness is not doing this in isolation, which is one of the most crippling things we as caregivers can do, and that's why I do the program. And I want you to go out to Hopeforthecaregiver.com. You can see more information of what we have, our free podcast, our blog, writing music.

You'll hear stuff from Gracie that you just heard coming back from the break. That's from her CD, Resilient. All of this is available at Hopeforthecaregiver.com. We're talking with doctors Laquita and Elton Higgs and their new book, Shattered Dreams, but hope encouragement for caregivers of Huntington's disease and other progressive illnesses.

It's available out on Amazon and other places, I'm sure as well. This disease is a brutal disease with massive complications to those who are involved with it. And their journey not only spans one individual but a second individual. What happens oftentimes, as they share in the book, the disease affects the cognitive and reasoning part of their patient and they become uncontrollable.

They act out, sometimes sexually. And this is what happened with their daughter that they adopted and she got pregnant. She was not able to take care of the child and Laquita and Elton adopted their granddaughter, who they knew had a 50-50 shot of contracting this disease.

That's the nature of this disease. And their oldest daughter has passed away and their youngest daughter is still living, but she's in an assisted facility because she's very difficult to take care of, as many patients with Huntington's disease become. There's one particular part of the book that you all reference where you had to stand in front of a judge.

And law enforcement, sadly, is very much involved in a lot of family members with Huntington's disease. And you guys basically stand there and this judge is accusing you all of being bad parents. Yeah, and that was really hard to take.

Talk about that. The judge had not done her homework sufficiently to know what she was dealing with. To her, this was just an adult child engaged in disorderly conduct and the parents should have done a better job. You couldn't speak back to the judge, you couldn't say, judge, you need about 20 minutes to understand. You just have to swallow it and go on. And when you're out in public and people stare, you know, there too you can't stop and explain what's going on. You just have to assume it's going to take place and go your way and be a little bit thick-skinned.

That had to be painful. But translate that experience, that experience in front of an earthly judge, to your coming to understand yourself before the heavenly judge, our heavenly Father. And how he views you all through this and how that's changed in your life.

That's a good way to approach it. I think I would say that as we look at our heavenly judge, we don't presume to say, well, Lord, we finally got it right. All we can say to him is thank you for being faithful and not giving up on us as caregivers and continually renewing our strength and giving us sources of getting new information that would help us in the process of dealing with those we're caring for. Sometimes as caregivers, the judge that we stand before each day that condemns us is ourselves. And we pass judgment on ourselves. You've referenced this in the book several times, that you both have done this yourselves and you're judging yourself.

And you've had to wrestle with that concept. Okay, why am I putting this on me when my heavenly Father is not? And I think this is where we all, well, actually, I think it's the human condition. This is who we are as human beings, but we just deal with it extensively and relentlessly in the crucible of caregiving. But what would you say to others who are getting up every day, looking at the mirror and judging themselves without mercy, very much like that judge that you all stood before who just railed on you and had no comprehension of what she was dealing with. We treat ourselves that way, and yet our heavenly Father does not. He's a God of mercy who sees us in our distress and He provides for us in this, reveals Himself to us. These are things you've learned along the way in your journey.

LaQuita, Elton, what would you say to someone who is getting up in the mirror every day and passing judgment on themselves? You know, I really have come to believe that one of our failings as Christians is to fail to trust God for His love. That He loves us so very much more than even we think we love our children just as much as possible. And we do, but He loves us even more. So when I hear people talking about being afraid or something or having a hard time, I think, oh, trust Him for His love. Because He loves you. He's going to be with you and give you strength and help you.

You're alright because you can trust Him. I think I would say to people, first of all, we're all in the same boat and we need all of us together to be continually reminded that our standing before God doesn't come from anything except the blood of Jesus that covers all the bad stuff and makes us stand before Him as His children. This amazing idea of being a child of God and His treating us with the compassion that we know how to treat our own children. Why should we think anything less of God? And also, can we really think about God as one who not only expects us to bear the burden, the intolerable burden sometimes of caregiving, but suffer guilt for not doing it well enough?

I can't conceive of God being the kind of person who would subject us to that double jeopardy. I remember when we had to put Cynthia, the first one, into foster care. I prayed so often that the Lord forgive me. I did such a bad job.

Forgive me. I wish I could do it over. Well, then finally Rachel came along and I got to do it over. Which I thought, well, the Lord has a good sense of humor too, but He's been so faithful all the time teaching us, showing us, and helping us. Even now at our stage of life when we're more limited in energy than we used to be, He still enables us to do what we can in regard to Rachel. A lot of people may say the words that you just said about the faithfulness of God, but they don't say it with the resume of caring for someone with Huntington's disease. When you say this, there's a weight to it, and I understand that because I have a small taste of the journey behind you as a caregiver.

You know, that's one of the reasons for keeping a journal too, I think, is that as we record things that go on and how the Lord has helped us through this and that, that means a lot. So often we've looked back to when we first chose to adopt Cynthia, the first one that we were offered. Well, we'd said we would take a handicapped child. We already had one child who was perfect.

When I read about Huntington's, there wasn't much back then, but when I read about it, I thought, no way, I'm not going to get involved in that. They talked about psychiatric changes, but then we did continue praying, and the good Lord let us know, yes, you are to adopt this child. And going back to that, we've gone back to that more than once, that this is the Lord's will for us. And I've come to believe that whatever circumstance we're in, we're to be thankful, as He told us on the morning of Cynthia's funeral, to be thankful for the Thessalonians 5, 18, I think it is, but to be grateful for where He's put us. Even though it's so hard, there's reason for it. It gives us the opportunity to care for one of those little ones that's mentioned in Matthew 25.

For as much as you've done it to one of the least of these, you've done it to me. And so it really helps to think on these things and to remember we're doing it for Him and there's purpose. In the last minute or two that we have, I'm going to give this quote, there is a need for all HD caregivers, this is from your book, there is a need in all HD caregivers not to give Huntington's disease any victories. But in addition to that, for believing caregivers, there is the need to trust and praise God for the abundant life that He is so willing to give both to us and our precious loved ones.

Let God love you. And I think that's an appropriate benediction to this message that you have brought to us today. It is a sermon from your life, your life is a sermon and it is a testimony to what God can do in such harsh circumstances. I want to encourage folks to get your book, spend some time with it. And if you know someone who is dealing with Huntington's disease, please be willing to reach out to them. After you read the book, don't do it until you've read the book to get a real understanding.

It's available out on Amazon and other places. And it shattered dreams but hope, Dr. Eldon and Laquita Higgs. I want you both to know how much I appreciate you coming on the program today and sharing your heart, your insights and your journey. Well, we appreciate the privilege of being with you. It is a tough journey that you all have had, but I marvel at what you've become through this and what you're able to do for so many others. I want you to know how much I appreciate you being here with me. This is Peter Rosenberg. This is Hope for the Caregiver. Hopeforthecaregiver.com.

We'll see you next time. The views and opinions expressed in this broadcast do not necessarily reflect those of the American Family Association or American Family Radio.