9 min read

Mental health coping mechanisms for caregivers with Dr. Lindsey Matt

By Jennifer McNary on Dec 23, 2020 1:12:43 PM

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The following text is a truncated version of Medable Patient Advisory Council Chair Jenn McNary’s interview with psychologist and Patient Champion Member Dr. Lindsey Matt. Jenn and Lindsey were kind enough to film parts of their conversation for inclusion with this blog. Thus, we're pleased to present and recommend viewing the remaining portion of their interview using the videos placed throughout the article. 

 

2020 has been a tough year for us all, with many spending time away from their families and feeling isolated this holiday season. This is especially true for caregivers of chronically ill children. In fact, research indicates that 40% to 70% of caregivers have had clinically significant symptoms of depression with nearly a quarter to half meeting the diagnostic criteria for major depression. Additionally, 35% of parents with chronically ill children meet criteria for clinical depression with 57% meeting criteria for what is considered anxious symptoms. .

With that in mind, Medable Patient Advisory Council Chair Jenn McNary (JM) spoke with Patient Champion Network member and licensed clinical psychologist, Dr. Lindsey Matt (LM), to discuss coping mechanisms and considerations as a caregiver for chronically ill children that can benefit many of us and our relationships with others this holiday season. 

LM: I would love if you could start by introducing yourself and telling folks a little bit about you.

JM: Sure. I’m Jenn McNary. First and foremost, always in my introduction is that I’m a mom because I became a mom at 18. That is what I always introduce myself as. I have three sons that live with rare diseases of different kinds and I also have a healthy nine year old daughter. 

LM: Thank you! Speaking to that piece, when you think about becoming a caregiver, how was that for you or can you speak a little bit more to that process or transitioning to mom and to caregiver? 

JM: Yeah, so, it’s interesting because I’ve always been a really responsible person. I was a nanny; I was a babysitter, and, so, the transition to mom was pretty easy for me surprisingly...even at 18. I found that my mental health status of sort of dealing with a lot of anxiety and dealing with depression and things like that actually made me a better and more understanding parent. I understood when my kids were throwing tantrums. There were no pre-existing expectations for behavior. So, when I had a colic-y infant, I could really empathize with him. I found, even for me transitioning as a caregiver to sons with a rare disease...my sons were diagnosed when I was 21. Austin was three years old and Max was three months old. I didn’t have any preconceived notions of what it was going to be like to raise children so I just became the person who was raising children who were fatally ill.

LM: Speaking to that piece, just coming into motherhood and then learning it sounds about the illnesses that were going on with your children, what does the road of a caregiver look like for you from diagnosis and then over the years? Being in their lives and through that process?

JM: It’s interesting because, at first, it didn’t look any different than just being a mom. Very quickly it becomes being a protector. Being an advocate. There are doctors that don’t necessarily mean well or maybe they mean well but they’re just not having your child’s best interests in their mind. I had a lot of doctors say that there’s nothing you can do; just take them home and love them. All the way to doctors saying you may not want to get attached. You’re looking at a newborn baby and they’re saying, “That child is going to die. Don’t get attached.” So, I became an advocate for them to find the best care and a lot of it was external. In my mind, you know, just standing there blocking bad things that were gonna happen and then also moving into schools and being protective about what was gonna happen to them physically; whether they were being treated kindly; whether they were being picked on...and, so, it was a lot of defense. That was really our early years. As they’ve gotten older, it’s been raising them to be decent human beings so that other people will want to be around them because it’s harder to make friends; and have friends; and be in relationships when you’re disabled. When you need somebody to take care of you and it’s not your mom, that person doesn’t have to take care of you. And, so, teaching them really how to behave towards caregivers and how to be respectful. Sometimes, it’s tough love and really teaching them to be good citizens first and I think that that’s rare. I think that, a lot of times, these folks that depend on care can be really difficult to care for and I didn’t want that because I’m also a human and so, even though I have the best of intentions, I get irritated if I get woken up in the middle of the night over and over. 

LM: And you had mentioned, I think, something so important. At some level, having some anxiety, things like that, coming into motherhood, coming into parenthood, can actually make you well suited for the job. I’m curious, for you, as you added on this caregiver role, what were some of the, I suppose, advantages and disadvantages of that? You mentioned the irritability. Sometimes it can be a little bit much. You’re a human being. I wonder, for you, some of the ways this impacted your mental health over the course of time.

JM: A lot of times I have said in the past, and I maintain, that having the boys really saved my life. For some people, it can be a pet; it can be a plant that you have to water at least once a week. Just knowing that I really don’t have the option of just losing it, especially as a single mom. Even on the days where, and certainly with bipolar disorder, I have days where I’m super mom and I’m super functional and our house looks amazing and immaculate and I’m playing boardgames and I’m really, really good. Then, there are days where I’m like, “I don’t even want to leave my bedroom.” I don’t have that option. So, in a way, being forced into reality has been good for me and I think that also having realistic expectations about moods has made me a better parent sometimes. We yell. We’re a family of yellers. I’m a yeller. My kids are yellers. We all swear but we’re all pretty good at apologizing. Being somebody with a mental illness, you become pretty good at apologizing. You apologize for forgetting something; you apologize for not showing up; and you apologize for being irritable. So, all of my kids know that forgiveness is an option and they know that people are human. I think sometimes that takes the pressure off of the people in your life.

 

 

LM: You mentioned your boundaries, things you do to look after yourself and I think that’s a very, very important part about this conversation about what it means to be a caregiver. I wonder are there resources you have found helpful for supporting your mental health or areas where it’s been hard to have the support you’re looking for?

JM: I guess the resources--Facebook and support group, please where people get it--and that doesn’t mean that everybody with a child with a rare disease gets it--and so I have an ongoing chat group with about six women that have children with Duchenne of varying ages and we’re in constant contact every day. We have Zoom calls. We live across the country but that’s where I go when I want to vent so, making sure you find your people. Also making sure you find your people that don’t have anything to do with rare disease, totally don’t get it, don’t understand it, don’t want to understand it, and so you don’t have to talk about it. I have a couple of those friends and, in fact, I have friends without children. Those are my favorite friends because we can be really selfish and self-centered and they don’t even know that it’s happening. Those are the resources. Also, of course, advocacy organizations and things like that are great if you’re struggling. For me, the biggest thing I’ve done for myself is keep myself strong since I have to do a lot of lifting. My kids are heavy. So, I’ve invested in exercise. I don’t love exercise but yoga; Peloton; treadmill; you name it is here and it’s in my face staring at me in my room and in my office. Making sure that I’m taking care of my health has been incredibly important.

 

LM: Thank you so much for speaking to all these different areas. Is there anything else that you would want to add or other things that we haven’t talked about already that are really important in this area?

JM: I think that it’s just important for everybody to realize, again, if I were speaking to caregivers or to people who both struggle with their own mental illness and then also are trying to take care of another human being, I’d say what I just said to a mom who wrote in a chat group about completely losing it on her kid in the middle of the night. Like, completely losing it. We’re talking screaming; crying; she may have even punched a hole in the wall. I remember that the comments were so unkind. “Get help. Get help. Get help. You’re a psycho.” Even from our community. I remember commenting and saying, “If these people are saying that they’ve never felt that way, they’re lying to you.” I really want to remove the stigma of struggling and that martyrdom, you know? None of us is built to care for people exclusively forever. That is not the way that we are made. We’re not those kinds of people. We’re not superhumans. I really want to work to removing that barrier, you know, to feeling what you feel.  

LM: That’s an excellent point. Thank you so much.

JM: Thank you!

 

Resources

  • If you or a loved one is receiving medical treatment, start by asking your hospital, center, clinic, or provider if they are aware of mental health resources for patients and/or caregivers. 
  • If cost or provider availability is a concern:
    • Search “university counseling center” to locate low cost clinics in your area where therapy is provided by graduate students. These students are supervised by licensed professionals and often provide evidence-based care supported by current research.
    • Search “sliding scale therapy near me” to locate therapists whose session cost is negotiable based on income. Many therapists are also currently practicing via telehealth, so consider searching outside of your town or city on sites like Psychology Today or Good Therapy to access a greater number of available providers.
  • If therapy feels out of reach or you prefer the support of a group, robust communities for patients and caregivers alike exist within organizations and  across Facebook, Meetup.com, and Instagram. These can be found by searching for “support group” or “caregiver support group” along with the name if you or or your loved one’s condition. Examples include:
    • Family Caregiver Alliance - A list of support groups for adult and young adult caregivers of those with chronic health conditions
    • The Cancer Patient - An Instagram community that takes a satirical look at life as a cancer patient or survivor 
    • The Dinner Party - A peer community for those in their 20s or 30s who have lost someone close to them 
Topics: life sciences caregivers mental health
8 min read

Profiles in Caring

By Paul Kidwell on Nov 30, 2020 1:35:45 PM

Former First Lady, Rosalyn Carter, is attributed to a quote that perfectly sums up the impact and the deep reach of caregiving in all of our lives.

"There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."

There are over 50 million people in the United States who care for adults and children afflicted by some type of medical condition, with illness preventing these individuals from caring for themselves. Whether caring for an elderly parent, a seriously ill spouse or child, or some other special person in need, those individuals who are on the front lines of caregiving put themselves second as they immerse themselves in a life of personal sacrifice of time, energy, and income. 

In this Medable blog we celebrate November as National Family Caregivers Month and highlight the lives of four individuals who are caregivers.  Legions of people call themselves caregivers and do so in quiet strength and without expecting anything in return for their selflessness. It is an isolating existence; one that often produces a sense of frustration and despair. We live in a culture where a growing contingent of Americans are thrust into this role - we call upon everyone to support them during this month and always. 

Daniel Zahn
Project Coordinator, Medable

My Son Ethan was born with CHARGE Syndrome in 2017, so my wife and I have had to take on the caregiver role as well as being new Parents.  Caregiver duties include drawing up daily medications, giving meds, g tube feedings, trach care, suctioning, and transportation to numerous Doctor visits per month at Children’s Hospital. 

Q: How do you balance your two lives; caregiver and non-caregiver?

My Son Ethan has a Physical Therapist, Occupational Therapist, Speech Therapist, Vision Therapist, and Hearing Therapist that all come to our home during the week.  During the pandemic, the home visits have stopped, but the therapy sessions continue via zoom meetings. This is not ideal, but my wife and I have become a ‘jack of all trades’ to help continue Ethan’s progress. Juggling work and therapy sessions has been challenging and tiring.  We do what we have to as parents and caregivers to make it work the best we can.

Jennifer McNary
Consultant. Public Speaker. Advocate. Non-Profit Leader
Manager, McNary Consulting

I was 18 when my oldest son Austin was born. He was a normal healthy baby but by age 3, following my second son Max’s bith, it was apparent something was wrong. Austin and Max were diagnosed with Duchenne about 3 months later. My now 13-year-old youngest son was diagnosed three years ago with primary immune deficiency at 10. So, I am a mom and caregiver to three sons with rare diseases.

I have always tried to separate being a mom from day to day caregiving by having daily help with Austin and Max's physical needs. At 21 and 18 they need total care, lifting, bathing, grooming, everything. I have had to work and have additional clients to earn enough money to supplement the personal care budget afforded to us by state medicaid. It's important to me that Austin and Max have care from professionals- I don't like the dynamic of being the only caregiver. That said, I don't have 24/7 care for them- so much of it still falls on me. James needs weekly infusions, which I have to provide him. That can be a battle- what 13 yr old wants his mom pushing needles into him every week. It's hard to even get them to shower at that age and take a multi-vitamin. Caring for the boys’ healthcare alone can be a full time job - from juggling specialists visits, appealing denied medications and durable medical equipment, to making sure they have all of their specialty meds. So much paperwork. It's mentally draining and there aren't enough hours in the day. I often joke that I need an admin, just to deal with that piece. 

Q: How has the pandemic impacted the emotional strain that already existed as a caregiver?

Worrying about bringing the help we need, PCAs, nurses, etc into the home has weighed on me. On one hand, I can't do this alone- it's been almost 9 months.  For the first month, I didn't have anyone come into the house. It was way too much work for me to do alone while working full time and juggling my 9-year-old daughter's remote schooling and care. On the other hand, my sons likely wouldn't survive COVID. There would be so much guilt on my side if someone I brought in gave the virus to one of the kids. Their immune systems are all compromised- I have seen James be intubated when he caught paraflu at age 9. I think I have a fair amount of secondary medical trauma so we live in fear of people. I'm also totally alone with the kids. As a single mom, I used my work travel and time away as a time to recharge - it’s going to be a long time before that can happen again. 

I've also had to give a lot of thought to what we would "do" if one of us got COVID. What would the kids do if I was sick and couldn't care for them? What if I didn't survive? It's crazy, maybe, but it took this pandemic for me to buy life insurance, and to start on a will. I realized they really only have me. These terrifying thoughts are what keeps us isolating as long as entirely possible. 

Q: How do you make sure that you have “me time?” Describe those private moments.

I am a huge believer in maintaining a sense of self even with kids, especially with kids with health conditions. I take what some might call excessive amounts of time to myself. I set reminders on my calendar to exercise on my spin bike or do yoga daily- I walk the dogs, I take time to read and write when I feel the urge. My kids are as independent as they can be, and I encourage them to find ways to do things themselves if possible. I also have regular help, as I mentioned. I don't believe in being a martyr - I don't think it helps your loved ones to believe you're the only one who can care for them either. With any luck, they will outlive me and need to learn how to have others do things for them as well. I used to add a few days or sometimes just hours to every work trip - just to explore. I love to travel - I love to try new foods and see new sights. The kids and I travel a fair amount together, but that's usually exhausting. Where traveling alone or with a colleague is energizing. I hope we can get back to that life soon!

Rasmus Hogreffe
VP of DCT Innovation, Medable

When my dad was diagnosed with Prostate cancer eight years ago. It was a shock for the whole family, and due to my medical background, I was the obvious choice to support him where and whenever needed. He passed away three years after his diagnosis and my role as caregiver expanded during that time as the disease progressed. The most challenging part of being a caregiver is realizing that you are about to lose a significant person in your life. In the last days of his life, you live in constant fear of the next call, is it now, is he dead, is he dying? This phase took out all my energy, making it difficult to cope. Unfortunately, I didn’t cope as well as I should because I kept all my feelings of sadness and impending grief inside without sharing with others. The experience made me think that I needed to be more open with my feelings, something I hope to improve upon in a future and similar situation. 

Q: We talk often about how our healthcare system needs to account for indirect costs of being sick, such as lost productivity and the emotional toll for both the patient and their caregiver. Can you expand on what these indirect costs mean to you? What are you doing to help offset these costs?

I believe that you only have 100% mental capacity. When you are a caregiver, you allocate a big amount of this mental capacity in taking care of your loved ones. This directly effect productivity, which can and will result in increased frustration and loss of focus. We are all unique and we all have different ways to measure the value of a treatment. There is definitely room for improvement in this area. I do not believe that we will be able to measure this 100 percent accurately. But by utilizing technologies where the patients and caregivers are, we would be able to collect precious data that could help us calculate a more precise value of a treatment. As the shadow of the patient, a caregiver will rarely be recognized, but the importance of this role is a fact and will never disappear. The value, however, comes mostly from the patient and not from others outside that experience. The industry must recognize the value of caregiving and that behind a patient, there is nearly always a caregiver/caregivers involved. It has taken far too long to put action behind the words “patient centricity”, let’s not make the same mistake with the patient caregivers. 

Ching Tian
SVP, Strategy and Solutions
Medable


In February 2019, my dad was diagnosed with late-stage gastric cancer. A month later, my mom found out that she has breast cancer. My brother and I barely had time to absorb the shocking news before we had to spring into action. My brother lived in northern California, near my parents, while I lived across the country on the east coast. We immediately started looking into treatment options and reaching out to doctors for second opinions. We had to make difficult decisions to try to balance their quality of life while not giving up the fight. For almost a year, my dad and mom not only went through chemo, surgery, and radiation therapy but also dealt with multiple emergency room visits and hospitalizations in between. In January, my dad lost his battle with cancer and passed away. My mom has now been cancer-free for a year but is coping with the progressive symptoms of Parkinson's disease.

Q: The term “patient-centricity” is often used to describe how biopharma companies involve patients in each element of the drug discovery/development process. How would you define “Caregiver-centricity?”

Over the past few years, I have been working on patient-centric clinical trial solutions with the key objectives of expanding patients' access to clinical research and reducing patients' burden of participation. The focus has been almost exclusively on the patient, and the caregiver was only brought up occasionally. Through undergoing the intensive caregiving period for my parents, I realized the importance of the caregiver role. For some patient populations and diseases, many patient care activities are handled by the caregivers. Some caregivers participate in making treatment decisions. The burden on the caregivers can be immense, and sometimes a patient has to rely on multiple caregivers working together as a team. Their ability to support the trial participation, in person or sometimes from a remote location like in my situation, can determine whether the patient can participate in the trial. Therefore, we have to incorporate caregiver-centricity in our solutions. Making caregivers aware of research opportunities and providing tools for convenient study information access (e.g. managing visits, medications, reporting events, and communicating with the site team) can ultimately help the industry achieve patient-centricity. 

Topics: PAC PatientCare caregivers caregiving awareness