Allison Bulat lost her husband to ALS in 2016, just 13 months after his diagnosis. Since then, she has dedicated herself to advancing research and treatment options for families affected by ALS.
Allison sits on the board of directors at The ALS Association Arizona Chapter, serves on multiple committees at The Healey Center at Massachusetts General Hospital, and is the first-ever patient advocate to serve on the executive committee at the Northeast ALS Consortium (NEALS). |
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"Caregivers are just ordinary people
who are asked to do extraordinary things."
who are asked to do extraordinary things."
What were your lives like before your husband’s symptoms?
In hindsight I think I had the perfect life before ALS, but you don't know it because you're just going on about your business and taking care of the kids and worrying about things like, "Oh my gosh, the line at Target was so long."
Then all of a sudden life changes and your perspective changes and you look back and realize that maybe you didn't appreciate the things that you should have appreciated about your life before.
We were in technology. Jeff and I worked for the same company and had the same friends, so our lives were completely one. We were corporate America people raising our kids. I was that home room mom that probably drove everybody crazy.
Then all of a sudden life changes and your perspective changes and you look back and realize that maybe you didn't appreciate the things that you should have appreciated about your life before.
We were in technology. Jeff and I worked for the same company and had the same friends, so our lives were completely one. We were corporate America people raising our kids. I was that home room mom that probably drove everybody crazy.
What was the diagnosis process like?
We’d heard all these stories of people who spent years and years trying to find an answer and I just wasn't having that. So with the help of our primary care physician we went very quickly through all those tests to rule everything else out. We went to a regular neurologist for all of the muscle tests. From start to finish, it was just under four months for us.
It's such a scary thing. It's a game of finding out what it isn't. You know that negative test results aren't good. And you kind of already know what you're dealing with because you've probably been looking on the internet. The longer you delay knowing almost makes it harder to come to acceptance and it doesn't change the progression because it's already happening. So as scary as it is, I would say face it head on.
It's such a scary thing. It's a game of finding out what it isn't. You know that negative test results aren't good. And you kind of already know what you're dealing with because you've probably been looking on the internet. The longer you delay knowing almost makes it harder to come to acceptance and it doesn't change the progression because it's already happening. So as scary as it is, I would say face it head on.
How did you get the news?
Well, it was horrible. The first neurologist didn't want to say the words, so he actually sat us at his desk and started printing out information about neurological disorders and told us to go home and read it.
Then we got handed to an ALS neurologist who came in, looked at all our paperwork, and very quickly said, "Yep, I'm sorry. You have the worst disease known to man today. You're probably going to live about two years. Go get your affairs in order.” |
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He literally stood up from behind his desk and walked out of the room, and we sat there by ourselves. Eventually Jeff left the room. I didn't know if I was supposed to leave. Then the nurse came in and handed me a card for The ALS Association and told us to call them. It was a very lonely process. I remember walking out of that doctor's office and going down the elevator trying to process, holding this card in my hand that was going to give us the answers we needed and having to face Jeff at the bottom of the elevator.
Part of the tragedy is how that whole diagnosis happens for people. I'm sure there's never a good way, but there are definitely worse ways.
Part of the tragedy is how that whole diagnosis happens for people. I'm sure there's never a good way, but there are definitely worse ways.
How can neurologists better relay the news?
A couple of years ago, I would have said, "Be human. Don't be a scientist. You're telling a whole family that their life is about to be destroyed." But now I have a very different perspective because I work with so many neurologists. Now I think, "How do they come in every day knowing that they can't save the lives of the people that they're treating, or that they're going to have to tell people?”
Having stayed in the ALS community myself, I also know that it is possible to kind of get numb to what you deal with, and that's the truth. Every once in a while somebody says something that makes me remember how it felt to be in that moment and puts my perspective back in place. But for neurologists, they don't necessarily have that perspective. They probably haven't been given that diagnosis themselves. So it's difficult to expect people to understand that.
The person on the other side of the table has no way of comprehending what you're feeling, so be patient. I think the key is finding that good partnership with the right doctor. It's never going to be easy, but it can definitely be softer.
Having stayed in the ALS community myself, I also know that it is possible to kind of get numb to what you deal with, and that's the truth. Every once in a while somebody says something that makes me remember how it felt to be in that moment and puts my perspective back in place. But for neurologists, they don't necessarily have that perspective. They probably haven't been given that diagnosis themselves. So it's difficult to expect people to understand that.
The person on the other side of the table has no way of comprehending what you're feeling, so be patient. I think the key is finding that good partnership with the right doctor. It's never going to be easy, but it can definitely be softer.
How did you ultimately accept the diagnosis?
I was that person who said, “Nope, nope, you don't know what you're talking about.” I would stand in the kitchen and say, "Jeff, prove them wrong, prove them wrong. They can't tell you what it is. They can only tell you what it's not."
I spent every waking hour on the internet. I called so many drug companies about compassionate use that they'd pick it up and say, "Allison, please stop calling us. We don't have anything for you." |
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I was sure nobody had tried hard enough because if they had, there would be an answer, there would be something to do. It wasn't until Jeff told me to stop. He said, "You're spending the time that we have obsessed on creating a wheel that doesn't exist. We need to look at this a little differently.”
So, acceptance for me was very hard because I had so much hope in my heart that we're such capable people we could figure this out. But then I started hoping for something a little different. You don't lose hope when you accept a terminal illness. You just hope for something different: you hope for good time together, you hope for no pain, you hope for less suffering, you hope for peace, for support. So you don't lose hope when you accept a diagnosis like this, but what you hope for definitely changes.
So, acceptance for me was very hard because I had so much hope in my heart that we're such capable people we could figure this out. But then I started hoping for something a little different. You don't lose hope when you accept a terminal illness. You just hope for something different: you hope for good time together, you hope for no pain, you hope for less suffering, you hope for peace, for support. So you don't lose hope when you accept a diagnosis like this, but what you hope for definitely changes.
How did Jeff accept the diagnosis?
Jeff reached acceptance before I did. To put it in perspective, our journey was 380 days long from his diagnosis to him getting his angel wings. So his approach was, "I can't change what it is, I can only change how I make the people I love around me feel about it."
In hindsight, I'm so grateful for that. He was the rock of the family and he maintained that role until the very end. He went into business mode. He made sure I would be taken care of going forward. He had things he had to get done because he didn't know how much longer he would be able to do them. And once all of that was in place, he was ready to stop that constant fight and just be in the moment. So, we made the choice to stop thinking about time.
Luckily, we were fortunate enough to be able to do that. I can say that after 20 something years, I never felt closer to Jeff than those very last few months together when we stopped thinking about all the things we were losing and what was to come and we just lived in that moment in this little time bubble where we read books and then we'd talk about what that book was. We had our own little book club. Coming from corporate America and the career fields we were in, that would have never happened. We would have never spent the time doing those kinds of things.
So we ate when we wanted to eat. If it was 3 a.m., that was dinner time. We just lived in our own bubble for as long as we could and I'm really grateful that we were able to get to that point. And I think that's definitely due to Jeff being able to accept the diagnosis early in the process.
In hindsight, I'm so grateful for that. He was the rock of the family and he maintained that role until the very end. He went into business mode. He made sure I would be taken care of going forward. He had things he had to get done because he didn't know how much longer he would be able to do them. And once all of that was in place, he was ready to stop that constant fight and just be in the moment. So, we made the choice to stop thinking about time.
Luckily, we were fortunate enough to be able to do that. I can say that after 20 something years, I never felt closer to Jeff than those very last few months together when we stopped thinking about all the things we were losing and what was to come and we just lived in that moment in this little time bubble where we read books and then we'd talk about what that book was. We had our own little book club. Coming from corporate America and the career fields we were in, that would have never happened. We would have never spent the time doing those kinds of things.
So we ate when we wanted to eat. If it was 3 a.m., that was dinner time. We just lived in our own bubble for as long as we could and I'm really grateful that we were able to get to that point. And I think that's definitely due to Jeff being able to accept the diagnosis early in the process.
How much did you try to plan for what was coming?
I wanted to know how to get rid of ALS but I didn't really want to know what I was going to have to deal with. If I knew what I would have had to deal with, it would have been overwhelming and I wouldn't have been able to deal with what I had to at that moment because I would have tried to be 15 steps ahead of it. That's why I was so grateful for The ALS Association chapter in our area.
When you need something there's going to be somebody there to help you. You'll figure it out when you get to that point. Because the journey can be so different for people, you may end up worrying about things you never had to and using that energy on things that you maybe shouldn't have. I would just tell people to focus on one day at a time, because I don't know that you can plan for ALS.
I could only take the attitude that I'm going to do the very best I can and when I look back at this, I'm going to forgive myself because I did the best that I could and that's all. That's what I expected of myself.
When you need something there's going to be somebody there to help you. You'll figure it out when you get to that point. Because the journey can be so different for people, you may end up worrying about things you never had to and using that energy on things that you maybe shouldn't have. I would just tell people to focus on one day at a time, because I don't know that you can plan for ALS.
I could only take the attitude that I'm going to do the very best I can and when I look back at this, I'm going to forgive myself because I did the best that I could and that's all. That's what I expected of myself.
Did you get caregiving help?
One of the things that Jeff asked me to do was to take care of him. He didn't want nurses or family members coming in. He wanted it to be something that he and I experienced together and that was really hard. It was very lonely. I stepped out of my life completely and stepped into that role 100%. But I have no regrets. I wouldn't have wanted it any other way. That's what worked for us.
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People will always have an opinion and they will always share it with you. I don't know why, but they do. Not everybody will understand whatever choices you make along the way. So you have to be really confident in what you've done. I can look back and say, "I did exactly what we needed to do," and that's what I would wish for everybody.
Some people say being a caregiver 100% of the time is going to destroy the relationship I have with my spouse. It's going to pull us apart, not bring us closer. They bring in somebody else to do some of those things that a caregiver would do to allow them to just have the relationship a spouse would have. In families with younger kids, that can let the parents still be the parents. So I think the dynamic and what roles people want to play is a very personal choice.
Some people say being a caregiver 100% of the time is going to destroy the relationship I have with my spouse. It's going to pull us apart, not bring us closer. They bring in somebody else to do some of those things that a caregiver would do to allow them to just have the relationship a spouse would have. In families with younger kids, that can let the parents still be the parents. So I think the dynamic and what roles people want to play is a very personal choice.
What type of outside support did you receive?
I was fortunate to have wonderful neighbors who are custom home builders. They brought in ramps when we needed ramps so Jeff could get outside. I don't recall ever needing something that didn't show up.
I don't know how things showed up to be honest. I think if you interviewed my sister she'd have a whole list, but for me, it was like magic. I guess I just trusted in other people and it came through. |
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My sister went through the whole thing with me as close as any other human could. At the time she lived about 45 minutes away and drove over every day to make sure that we had food and that my child had what he needed. I don't think I could have made it through without that kind of support. She was one of the few people on the inside of the house of ALS, if you will. So that break and that help allowed me to make it through those times. I'm really grateful for my neighbors and my family.
And I’m so grateful for The ALS Association here in Arizona. I found it to be so beneficial to create relationships and trust people to give you the information you need when you need it. That's one of the hard lessons I learned as a caregiver: trust the people who actually know.
And I’m so grateful for The ALS Association here in Arizona. I found it to be so beneficial to create relationships and trust people to give you the information you need when you need it. That's one of the hard lessons I learned as a caregiver: trust the people who actually know.
What did you do to take care of yourself?
I didn't do anything for myself as a caregiver. In fact, I would be really offended when people would say, "You have to take care of yourself." I would think, "You have no idea what I'm doing. I'm booked 28 hours a day before I can get to myself."
In hindsight, what I did for myself was allow other people to help, which allowed me to take care of the other things I needed to do. For example, my sister was wonderful and would cook all the meals and bring food over so I always had something to feed Jeff. I still had to feed Jeff and that was my goal, but I got support and I was able to do that.
I think what makes people feel like they're taking care of themselves is different for everyone, and that's okay. I want to stress that if what you need to do is go get your nails done, girl, go get your nails done. You've earned it and it's okay to step away. If you feel like that's not where you are and you don't want to do that and you want to be at home, then don't let anybody make you feel you have to do something else, because you're taking care of yourself the best way that you can.
In hindsight, what I did for myself was allow other people to help, which allowed me to take care of the other things I needed to do. For example, my sister was wonderful and would cook all the meals and bring food over so I always had something to feed Jeff. I still had to feed Jeff and that was my goal, but I got support and I was able to do that.
I think what makes people feel like they're taking care of themselves is different for everyone, and that's okay. I want to stress that if what you need to do is go get your nails done, girl, go get your nails done. You've earned it and it's okay to step away. If you feel like that's not where you are and you don't want to do that and you want to be at home, then don't let anybody make you feel you have to do something else, because you're taking care of yourself the best way that you can.
What would you say to family and friends who want to help?
If you're a friend or a family member, I would say this is a perfect time to show that you are completely open to doing whatever somebody else needs you to do, even if it’s not something you want to do. Follow it through because it's hard for that person to ask for help and they've told you what they need.
I remember when people would call and say, "How are things going?" They mean well and they want to support you, but the last thing I wanted was to relive what I already barely lived through that day to keep people up to speed. So I would say to people on the outside of the house that's actually living ALS to be respectful of the message that comes from inside the house, whatever that message is. Don't judge it, don't agree or disagree, just decide if you're going to support it or not.
For us, it was a very private journey. Jeff didn't want people around, he didn't want to be a part of a lot of things and so out of respect for that, we became very segregated and my communication was really those texts or those emails that would come in. And honestly, I didn't answer all of them. So this is my official, “Please forgive me everybody who texted me or emailed me.”
I would say keep reaching out. Even if they don't respond to you, they got your message and it might have been at just the right time that they needed to know somebody was there, but they may not have had time or the emotional energy to respond back and get into a conversation. But keep trying because it does make a difference.
I remember when people would call and say, "How are things going?" They mean well and they want to support you, but the last thing I wanted was to relive what I already barely lived through that day to keep people up to speed. So I would say to people on the outside of the house that's actually living ALS to be respectful of the message that comes from inside the house, whatever that message is. Don't judge it, don't agree or disagree, just decide if you're going to support it or not.
For us, it was a very private journey. Jeff didn't want people around, he didn't want to be a part of a lot of things and so out of respect for that, we became very segregated and my communication was really those texts or those emails that would come in. And honestly, I didn't answer all of them. So this is my official, “Please forgive me everybody who texted me or emailed me.”
I would say keep reaching out. Even if they don't respond to you, they got your message and it might have been at just the right time that they needed to know somebody was there, but they may not have had time or the emotional energy to respond back and get into a conversation. But keep trying because it does make a difference.
How were you able to rise to the challenge of caregiving?
People would say, "I don't know how you do what you do Allison. You're so strong! Jeff is so strong." Look people, we didn't want to be strong. I wasn't strong. I didn't know what I was doing. I was doing PTO parties the week before. Let's put this in perspective. Caregivers are just ordinary people who are asked to do extraordinary things.
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Every single thing that your loved one can no longer do is one more thing that you're taking on. The ordinary person that you used to be doesn't exist anymore. Caregiving changes your perspective and turns ordinary people into superheroes overnight.
The physical demands on caregivers are what you would expect. You need to physically help people meet their basic needs when they're unable to do that for themselves. At one point I fractured my ankle, but you can't give into that. The ordinary person before would have been in the hospital having breakfast brought to me. But as a caregiver I was like, "Yeah, that happened and I’ve got to keep going. I'm just going to have to lean on my other leg because he needs me to do this."
People can kind of imagine the physical demands on caregivers, but I don't think there's any way for people to understand the emotional and mental demands unless you've walked in those shoes.
The physical demands on caregivers are what you would expect. You need to physically help people meet their basic needs when they're unable to do that for themselves. At one point I fractured my ankle, but you can't give into that. The ordinary person before would have been in the hospital having breakfast brought to me. But as a caregiver I was like, "Yeah, that happened and I’ve got to keep going. I'm just going to have to lean on my other leg because he needs me to do this."
People can kind of imagine the physical demands on caregivers, but I don't think there's any way for people to understand the emotional and mental demands unless you've walked in those shoes.
What are some of the tough emotions caregivers deal with?
One thing that people don't want to talk about is that forbidden guilt that we as caregivers feel about having to think about what our life is going to be like after we lose that person that we love. In all of my advocacy work, I’ve seen a pattern of that. Caregivers get very into themselves because they feel ashamed that they're thinking about intimate things that we're not supposed to talk about. If your husband is terminally ill, you can’t expect a 40 year old to not think about the rest of their life. And I think it's totally okay, and totally normal and totally the human thing to do.
And part of that whole acceptance process is to understand that there may be a time when your loved one isn't with you anymore and you need to see yourself in a new life and know that you're going to be okay. And there shouldn't be guilt associated with that. But I know that there is. Everybody is going to have an opinion on what you should or shouldn't do or you should or shouldn't feel.
If you’re a caregiver and have guilt about those feelings, talk about it with your loved one. They might be able to relieve some of those feelings of guilt. Jeff and I were able to talk about what he wanted for me moving forward. It doesn't mean that you don't wish that your loved one can be here with you forever, because you do. But if that isn't the case, you need to think through whatever you need to think through to know that you're going to be okay. And you shouldn't feel guilty about that.
I've also come across a lot of caregivers who are secretly angry. And I get that because in hindsight I think I was too because I had this perfect life and everything was great and now it isn't. You get so mad because you see it crumbling and falling apart and then there's one more thing that you have to do and I shouldn't feel angry about having to do it. I should be happy to help but darn it, I am angry because I'm exhausted, and I'm tired, and I'm scared and I'm sad. All those things build up into feeling angry—and that's okay.
I hear of caregivers and patients who don't say the nicest things to each other all the time. If that happens, forgive yourself and forgive each other because behind anger is a billion other emotions that boiled up and you have no choice but to feel them. So if that's your outlet and that happens, I think forgiveness is a big part of dealing with those feelings.
And part of that whole acceptance process is to understand that there may be a time when your loved one isn't with you anymore and you need to see yourself in a new life and know that you're going to be okay. And there shouldn't be guilt associated with that. But I know that there is. Everybody is going to have an opinion on what you should or shouldn't do or you should or shouldn't feel.
If you’re a caregiver and have guilt about those feelings, talk about it with your loved one. They might be able to relieve some of those feelings of guilt. Jeff and I were able to talk about what he wanted for me moving forward. It doesn't mean that you don't wish that your loved one can be here with you forever, because you do. But if that isn't the case, you need to think through whatever you need to think through to know that you're going to be okay. And you shouldn't feel guilty about that.
I've also come across a lot of caregivers who are secretly angry. And I get that because in hindsight I think I was too because I had this perfect life and everything was great and now it isn't. You get so mad because you see it crumbling and falling apart and then there's one more thing that you have to do and I shouldn't feel angry about having to do it. I should be happy to help but darn it, I am angry because I'm exhausted, and I'm tired, and I'm scared and I'm sad. All those things build up into feeling angry—and that's okay.
I hear of caregivers and patients who don't say the nicest things to each other all the time. If that happens, forgive yourself and forgive each other because behind anger is a billion other emotions that boiled up and you have no choice but to feel them. So if that's your outlet and that happens, I think forgiveness is a big part of dealing with those feelings.
Why did you decide to stay in the world of ALS?
After Jeff passed, I realized I was still standing in that same spot where I couldn't see anything familiar behind me and I still couldn't see anything in front of me.
I knew I couldn't just go back to the world that I lived in before with Jeff. I tried, actually, and I didn't want to be a part of that. It wasn't me anymore. That person was gone. So I decided that I wanted to stay in the ALS community, mainly because it's the only place where I felt like I could relate at that moment in time. Not that I thought I was going to save the world, but I didn't know where else to go, or what else to do.
And so I went back to school and got my graduate studies completed in clinical research and just really jumped into the community. I soon realized that not many people do that. I'm almost an anomaly. I’ve become very close with the very few people like me in the community. We don't really fit in on the patient and caregiver side anymore, and we don't really fit in on the science side necessarily, but we have this really unique perspective. And for the first time in a long time, I feel like I'm right where I'm meant to be.
This community needs people who understand, who can bridge the gap between science and emotion. Our role is to open doors for people who are drowning in emotion and don't know how to make sense of what clinical trials really mean and what steps they can take. We all serve a different role in this community. I’ve started calling everyone my brothers and sisters. I have a huge family right now. It's a family we never all asked to be in, but we're here and we each have a role that we can play.
I knew I couldn't just go back to the world that I lived in before with Jeff. I tried, actually, and I didn't want to be a part of that. It wasn't me anymore. That person was gone. So I decided that I wanted to stay in the ALS community, mainly because it's the only place where I felt like I could relate at that moment in time. Not that I thought I was going to save the world, but I didn't know where else to go, or what else to do.
And so I went back to school and got my graduate studies completed in clinical research and just really jumped into the community. I soon realized that not many people do that. I'm almost an anomaly. I’ve become very close with the very few people like me in the community. We don't really fit in on the patient and caregiver side anymore, and we don't really fit in on the science side necessarily, but we have this really unique perspective. And for the first time in a long time, I feel like I'm right where I'm meant to be.
This community needs people who understand, who can bridge the gap between science and emotion. Our role is to open doors for people who are drowning in emotion and don't know how to make sense of what clinical trials really mean and what steps they can take. We all serve a different role in this community. I’ve started calling everyone my brothers and sisters. I have a huge family right now. It's a family we never all asked to be in, but we're here and we each have a role that we can play.
Tell us more about your ALS advocacy work.
I am a member of the board of directors for The ALS Association Arizona Chapter. I am the co-chair of the Patient Education and Advocacy Committee for NEALS, the Northeast ALS Consortium. I also sit on their retention and recruitment committee and just found out that I was elected as the first-ever patient advocate to serve on the executive committee of NEALS.
I am also part of the patient navigation team for the Healey ALS Platform Trial at the Healey Center at Mass General Hospital. I sit on their retention and recruitment committee, patient advisory board, and expanded access program committees as well. My heart is with The Arizona ALS Association because those are the people who helped me through the journey, but I am all about the big picture and fixing this for everybody.
I am also part of the patient navigation team for the Healey ALS Platform Trial at the Healey Center at Mass General Hospital. I sit on their retention and recruitment committee, patient advisory board, and expanded access program committees as well. My heart is with The Arizona ALS Association because those are the people who helped me through the journey, but I am all about the big picture and fixing this for everybody.
Do you have any advice for current caregivers?
I know it's scary and I know you don't know how you're going to do it and don't even know what you're going to be asked to do, but you’ve got this. You're not alone. There's a lot of support and a lot of people that will help you.
If you doubt yourself at any point, or you don't know what to do, trust yourself. Trust your intuition. Be confident that you’re doing the best that you can with what you have. If you're doing the best you can, you're enough.
If you doubt yourself at any point, or you don't know what to do, trust yourself. Trust your intuition. Be confident that you’re doing the best that you can with what you have. If you're doing the best you can, you're enough.