The Brain You Can’t See, Part 2: Caregiver Support for Dementia, TBI, MS, and Cognitive Changes

How do you support someone living with dementia, traumatic brain injury, multiple sclerosis, Parkinson’s disease, epilepsy, Alzheimer’s disease, ADHD, or another neurological condition without losing yourself in the process?

In this continuation of The Brain You Can’t See, Michele Weston shifts the conversation from what cognitive symptoms feel like on the inside to what it means to stand beside someone experiencing them.

In the previous episode, Michele shared her own experience living with multiple sclerosis and adult ADHD, including brain fog, executive functioning challenges, memory lapses, and invisible cognitive symptoms. In Part 2, she speaks directly to the spouses, partners, adult children, siblings, relatives, friends, and unpaid family caregivers who quietly carry much of the responsibility when someone they love begins to change.

Caregiving does not always begin with a dramatic diagnosis.

Sometimes it begins with a phone call after a fall.

Sometimes a parent starts forgetting familiar names.

Sometimes a spouse needs more help managing medications, appointments, transportation, or daily routines.

And sometimes the changes are so gradual that no one realizes a caregiving relationship has formed until it is already part of everyday life.

Michele explains that supporting someone with a neurological condition is about far more than attending medical appointments or keeping track of prescriptions. It is about showing up consistently, creating structure, reducing confusion, offering comfort, and helping the person maintain as much dignity, independence, and quality of life as possible.

Drawing from her work as a patient advocacy navigator and her family’s experience caring for her father after a traumatic brain injury, Michele shares practical caregiver strategies that can make daily life more manageable for everyone involved.

She discusses the value of:

• Keeping a diary of symptoms and behavioral changes
• Maintaining an updated medication list with dosages and timing
• Tracking appointments, therapies, and follow-up care
• Using shared calendars, whiteboards, and family group messages
• Creating predictable daily routines
• Preparing questions before medical visits
• Updating relatives so responsibility does not fall on one person
• Finding rehabilitation, support groups, and respite-care resources
• Asking healthcare professionals to explain what may happen next

Michele also shares the personal story of her father, who experienced a traumatic brain injury after open-heart surgery. His brain swelling led to a long recovery that changed daily life for the entire family.

Her mother became his primary caregiver, showing remarkable patience and devotion throughout more than a decade of rehabilitation and adjustment. Michele reflects on how her parents temporarily moved to New York so her father could participate in programming through NYU Langone’s Rusk Rehabilitation.

The familiar routines many of us take for granted, such as getting dressed, brushing our teeth, preparing breakfast, going to a restaurant, or attending a movie, may need to be relearned or supported after a neurological injury.

That experience taught Michele how much patience, repetition, structure, and compassion can matter.

This episode also explores dementia and cognitive decline.

Michele explains that dementia is an umbrella term for cognitive impairment. It is not the same thing as Alzheimer’s disease, and it is not simply a mental illness.

Dementia and other neurological conditions may affect:

• Memory
• Judgment
• Language and word retrieval
• Motor skills
• Awareness of time and place
• Mood and emotional regulation
• Personality
• Daily routines
• Recent-event recall
• Independence

Caregivers may begin to notice increasing forgetfulness, repeated questions, irritability, confusion, difficulty completing familiar tasks, personality changes, or an inability to remember recent events.

One of Michele’s most important messages is that these behaviors are not necessarily intentional.

When someone repeats a story, they may not remember telling it.

When they forget an appointment, they may not be careless.

When they become agitated, frustrated, or emotional, they may be reacting to changes they cannot fully understand or control.

The behavior may be difficult.

But the behavior is not the person.

Michele encourages caregivers to pause, breathe, speak calmly, avoid unnecessary arguments, and separate the person they love from the condition affecting them.

She also reminds listeners that caregivers often become the stabilizing force in someone else’s life.

They remember the appointments.

They track the medications.

They repeat the instructions.

They help organize the day.

They offer reassurance.

And they often carry the emotional weight of trying to keep someone else afloat while wondering who is supporting them.

That invisible labor can take an enormous toll.

Caregiver burnout is real.

There may be no paycheck, no scheduled time off, little recognition, interrupted sleep, cancelled plans, medical stress, financial pressure, and constant uncertainty.

Michele shares the story of a devoted husband who began snapping at his wife during a medical appointment. The doctor recognized that he was not uncaring. He was exhausted.

The solution was not shame.

It was respite care.

That time away allowed him to rest and return to the relationship with more patience and presence.

Reaching that point does not mean someone has failed as a caregiver.

It means additional support is needed.

Michele strongly encourages caregivers to protect their own health by:

• Keeping their medical appointments
• Prioritizing sleep and rest whenever possible
• Scheduling regular breaks
• Maintaining friendships and personal interests
• Asking family members to share responsibilities
• Exploring caregiver support groups
• Speaking with doctors about respite care
• Making room for joy without guilt
• Using breathing and mindfulness techniques
• Seeking counseling or therapy when needed

Taking care of yourself does not take care away from the person you love.

It strengthens your ability to remain compassionate, attentive, and present.

There is no perfect caregiver.

The needs will change.

The challenges will change.

There will be moments of frustration, sadness, exhaustion, grief, love, humor, and deep connection.

The goal is not perfection.

The goal is to keep learning, ask for help sooner, protect both people in the caregiving relationship, and create the best quality of life possible.

Michele closes with a message of gratitude to every spouse, partner, family member, and friend carrying responsibilities others may never fully see.

Your patience matters.

Your compassion matters.

Your willingness to keep learning matters.

And your health matters too.

Resources Mentioned

Alzheimer’s Association Caregiver Support
https://www.alz.org/help-support/caregiving

Alzheimer’s Association Caregiver Stress
https://www.alz.org/help-support/caregiving/caregiver-health/caregiver-stress

Parkinson’s Foundation Care Partner Resources
https://www.parkinson.org/resources-support/carepartners

National Multiple Sclerosis Society Care Partner Support
https://www.nationalmssociety.org/managing-ms/for-carepartners

NYU Langone Rusk Rehabilitation
https://nyulangone.org/locations/rusk-rehabilitation

NYU Langone Brain Injury and Concussion Rehabilitation
https://nyulangone.org/locations/rusk-rehabilitation/condition-focused-rehabilitation-services/brain-injury-concussion-rehabilitation

Epilepsy Foundation
https://www.epilepsy.com/

National Institutes of Health
https://www.nih.gov/

Mayo Clinic
https://www.mayoclinic.org/

Cleveland Clinic
https://my.clevelandclinic.org/

Connect with Michele Weston

Subscribe to Michele’s free Substack:
https://micheleweston.substack.com/

Learn more about Michele’s coaching and patient advocacy work:
https://michelewestoncoach.com/

If this episode helped you, share it with a caregiver who needs to know that their work is seen, their health matters, and support is available.

Transcript

0:02

Hello, this is Michele Weston with Beyond My Diagnosis. The last episode I talked about neurological conditions and what happens with patients not only with MS like me or having adult ADHD, but it could be epilepsy. It could be traumatic brain injury, which we'll explore more in the next episode because even though there's neurological challenges and there's cognitive issues, you can help your loved one very much. And I had a personal experience with that in my family. But you're also talking about how you take care of you as the caregiver. Because how do you support loved ones and how do you do it with love, and also with love for yourself as the caregiver, as the spouse, as the family member, as the friend? So imagine waking up one morning to find that a parent is having trouble recalling familiar names or they're receiving a phone call that a loved one has fallen or that your friend needs more help regarding support getting around. Many times with caregiving, it starts with this major event, but just as often it also unfolds more quietly with small changes to everyday life that becomes part of a routine for you and for the patient, for the person. So supporting a loved one with a neurological condition is far more about just managing meds or attending appointments with them to take notes. It's about showing up, showing up consistently and making a difference in their daily life. But with the right mindset for you and them, with the right tools and support, caregiving can move beyond that day-to-day responsibility and for you, hopefully, become more rewarding. So if you found yourself in that position of being a caretaker for a loved one without prior experience, because most of us haven't, no, you are not alone. Here's a great fact. Did you know that in the United States, it is estimated that one in five people have taken on the unpaid responsibility of caregiving for a family member or a spouse or a child with little to no formal training or experience. Now, there are support groups. There are programs now here in the United States that are happening. But wow, that's a lot to take in. And for many, this new journey comes with a learning curve. And you know how I feel about learning curves. So learning curves are a good thing. We all are on learning curves and with chronic conditions even more so. So learning to navigate the ins and outs of new responsibilities as a caregiver and all these dynamics that change and becoming more self-educated and whether you're going to have to organize transportation to adopt a appointment, whether you're going to have to prepare meals for them, whether you're going to have to find therapy for them and maybe for you as the caregiver and just sometimes simply sitting together with your person and offering comfort to them. Every act of caregiving matters. And it's not just about medications and appointments. Seriously, if you can recognize that the responsibility of caregiving is not about seeking acknowledgment,"I did this. I have learned how to do this." It's really simple. It's about understanding that even the small, everyday moments offer extraordinary comfort and strength to that person. You're their person. And caregivers often become that anchor that helps their loved one, that navigating their daily challenges, they need you as that anchor, as the driver of the ship, as paddling with them. And consistency is really important. Though it may not be unnoticed by others around, creating a structure that supports healing, that supports stability, that supports hope is really important. So when you're talking about caregiving, you also have to add a word to that. How about healthy caregiving? Now, we want to work smarter, not harder. So when you're caring for someone with a neurological condition, you got to keep in your toolbox knowledge about their condition and staying organized. That can bring so much more structure and peace of mind for you when a situation comes up. So what are your strategies? Educating yourself, keeping a diary of symptoms for appointments so that you can talk about things they may forget. Keeping a care calendar for tracking appointments, for their therapy sessions, for medication schedules is also important. Also, maintaining updated medication logs with dosages and timing. And using something like a whiteboard or a shared app to keep all the caregivers, because sometimes there's a number of them. In my family, it could be my sister with my mom. She was our anchor because she was in Michigan, in Detroit, near my mom, near our mom. My brother was in Chicago and I'm here in New York. And having that together really, really helps. But you want to gather as much support as possible for that patient, for your person's medical team, for telling your family and keeping them updated. My brother was amazing at that. He would text us all, all three of us. He would add my aunt, my mother's sister. He would add people when that was necessary. And this helps you navigate in this unique role you've taken on. And even really small adjustments like helping them prevent confusion and clarifying for them. And how do you lower stress? Not just for them, but for you. It's really important in the long run. And no two caregiving journeys look the same. Absolutely. Even under neurological cognitive issues, it looks different. And that's something that people forget. With memory loss, if you have Alzheimer's or dementias, that requires more close supervision. Harkinsons is in there. You have to have more patience. You have to count to 10. You have to use things like John Cabot Zinn's MDSR, mindfulness-based stress reduction. But I love the tools I've offered before from Andrew Weil, counting down with your fingers underneath the table so nobody sees but just for you, and letting yourself take a breath. Now, in those situations where memory is fading, leaning into those familiar activities that you do and reinforcing their daily routines really, really reduces friction. My mother found that with my father, who had open-heart surgery his second. And when he came out of surgery, he had traumatic brain injury. His brain swelled. And it was a very long road for over a dozen years. So in those situations, you want to learn how to handle familiar activities. How do you reinforce daily routines? Getting dressed, brushing your teeth, having breakfast, planning breakfast, making breakfast, going to a restaurant, being at the movies. And there's amazing programs that my mom found here in New York. And I'm not just tooting their horn, but I am. The Rusk Institute at NYU Langone for Traumatic Brain Injury is pretty powerful. And that's another plan to look into. In fact, my mom moved here with my father for a year, and they were active in that program. And my father learned a lot of skills. He really, really did. I was lucky because they lived a few blocks from me, and I got to see my mom and dad more, which was nice. I got to be at my father's graduations when he was learning things. And it's a lot, but you can do it with more grace and more patience because it's important. And that's coming back to you've got to protect your well-being as the caregiver. I mean, oftentimes, now we get wrapped up in the day-to-day caregiving. And it's easy to forget about your own emotional and physical health. Taking care of you. Taking care of yourself improves your resilience, and it supports your ability to be there when it matters most for that person. So I'm going to give you a couple steps, simple steps, to help possibly ease that pressure. Make time for activities that replenish your energy and your joy. I mean that. We have joy in our lives. We have joy in moments. We have joy with people. We have joy reading a book, being at the beach, feeling the breeze come across us. You need to replenish that. And guess what? You have to prioritize sleep and rest when possible. Figure out how you're going to renew and revive yourself. And you need to stay connected to those interests that you have personally and those relationships with your friends, with other members of your family. Are you in a bridge group? Make sure that can happen. Make sure you have someone who can be with your loved one, who may need to be there if they've got Parkinson's or Alzheimer's or TBI, and they need another person. And please allow space for your own autonomy and your own reflections. Without guilt, you have the hardest role. Most people who are caregivers never expected to have this role. And I want you to remember this. When caregivers prioritize their well-being, they're better equipped to offer their loved ones more patience, more kindness and presence. It's easier for you to be there to hear things. And there's a lot of programs so you can stay informed and connected. There's the Alzheimer's Association. It's an organization online. The Parkinson's Foundation. And they even have Parkinson's Foundation Caregiver Portal.org. With MS. The National MS Society Caregiversupport.org. There's many groups out there. Even epilepsy has groups to help the caregivers. And if you can find just one resource that fits your needs and helps lighten your journey, I hope so. That you can find more, better, newer solutions to help you. And there's no way to be the perfect caregiver. The challenges change. And so do the needs. So I hate to say that, but many of you may know this. And if you pass this on to somebody who's a caregiver, there are no days off. There's no paycheck. And there's often no little recognition. And while you are hard work may not always be visible to others, it means everything to the person receiving it. So if you feel overwhelmed, know that support is available. There's resources out there. There's guidance, encouragement. They are within reach in every state, in every city, in every area. So if you feel overwhelmed, know that support's out there. Go on to Align. This is when I love Google. And now we have all these chat GPTs and other websites to help us with AI. And that can help you too. I remember hearing from a doctor who I was working with a patient, and I really appreciated what he had to say. He said that whenever he's talking to families about caregiving, he always includes a personal story of a patient who's extremely devoted to his wife who had chronic illness. And he loved her and was attentive and kind and doted on her. But one day when that husband visited the doctor in his office, he was snapping at his wife. Now, it was clear to this doctor that he was overwhelmed. He was exhausted. And he had had just about enough. And then this is really important. Sometimes a doctor can send the patient for respite care. And then the patient's spouse can get back to being their loved and devoted self. But that husband just needed time, time out. And they had no idea how to ask for that. So doctors can be really, really helpful with these chronic neurological conditions, the cognitive issues that may frustrate you. And so ask your doctor if they have tools to do this. And reaching out is not a sign of weakness. It's a way to offer the patient and that caregiver the best way to support their loved one. Easier said than done. It is challenging, really, really challenging. When you're looking at cognitive decline, dementia, that's a word that carries huge emotional weight. You know that there's all these stigmas that come with that word. And, God, it's millions of years for families that this has happened. So when you struggle with cognitive challenges, supporting a family member or a friend experiencing changes, know again that you're not alone. Another statistic, the Mayo Clinic is great for statistics, great for finding things out. Look at National Institute of Health, NIH.gov. Look to the Cleveland Clinic. They are amazing there. NYU Langone Rusk is terrific for that. So the statistic that I had scribbled down years ago is, well, years ago, a couple years ago, nearly one in 10 Americans over the age of 65, they currently live with some form of dementia. And while some symptoms are irreversible, with support, there can be more successful management. So let's talk about that because we've talked about cognitive changes. But when you hear the word dementia, sometimes those cognitive changes are the loudest. So throughout the ages, and I'm serious, ages, decades, centuries, dementia has earned this reputation, this negative reputation for its unpredictable nature. So we fear mental illness. You know that. Well, I know that here in New York, mental health still has not been handled in America the way it needs to be handled. You see people on the streets shouting at themselves, talking to themselves. Very difficult. Difficult for the person and the people around. And they'll say that person's mad. They're insane. The origins of the word dementia, inland, means madness. It means without a mind. So that's where that came from. But today, in the 2020s, knowing into the 2030s, we know better. And dementia syndrome affects your mental health and affects your mood, but it's not a mental illness. It's a brain condition that results in cognitive limitations. So you'll hear in the medical universe, dementia is an umbrella term to describe brain impairment. I mean, imagine being a spouse, a caregiver, a friend, and being in an appointment and hearing them say to your friend or your loved one, well, now you have dementia. And it's a brain impairment. It's a decline in your cognitive abilities. And as we talked about last episode, that can be memory loss. That can be finding words. That can be some motor skills, being able to do things with one's hands. And I often see people that, when I'm at, when I was going to Rusk to get some help with stress management, there's people that they wax away about their thinking. This goes on because it develops. And when we need more research about dementia, we need to look to those organizations like Alzheimer's. Alzheimer's is always the first thing that comes to my mind when referring to dementia. And even though the Alzheimer's disease accounts for many dementications, the two are not interchangeable. You can't say Alzheimer's and dementia are the same. Nope. Alzheimer's disease and Huntington's disease are currently in the medical fields, the two most common diseases that promote dementia. So dementia has all of those qualities in it. It generally comes about, not just after 65, because you may have repeated brain injuries. And, God, think about football players. Think about what happens to their brains. Hockey, but definitely football. And most often it's happening because, as you get older, there could be repeated strokes. You could have falls. You could have that TBI I talked about that my father had, traumatic brain injury. And it's important to just keep remembering that what you want for that person is to help them be as productive and as able to function as they can. What are you looking for in signs and symptoms? Well, it also starts, well, let's say it this way. It starts normally with behavior that are warnings, like memory loss, and it can then become cognitive decline and more impairment. So I'd say that what would you see in changes in your loved one's behavior? You'd see more moments of frustration, more bouts of being more irritable. They could have inconsistent memory patterns. I don't remember that. Well, I told you I knew that. Those are the things that happen. And sometimes it's visible personality changes. My father became much easier. He was always a definitely, I pay personality as a surgeon, as a doctor. And my sister and I work for him in his offices. And you'd see that. But when he developed TBI, he almost became that softer side of him, except when he got really frustrated. And that was scary because the person doesn't know what to do. They may lose a sense of how to navigate themselves. They may lose a sense of how to navigate themselves outside. You have to be careful. They could have confusion in time and space. And you'll also see changes. Maybe they'll forget where their keys were. Maybe they'll forget they were supposed to do something like take out the garbage or even simply just brush their teeth. And sometimes, which is very sad, an inability to recall recent events. Anything that's new is harder to remember for some. And sometimes they will be in a familiar place doing a familiar activity and they won't remember that they know how to do this. It could be a hard game, playing spades. So it's also something that I've experienced with my dear friend who lives in my co-op building. And KB, she's known me for 20 years and she's developed dementia in the past two years. And sometimes she'll look at me when I go visit her upstairs and she'll say,"What's your name again?" You have to have patience. You have to just repeat it. You have to also get used to them repeating things, stories that they love, and also you repeating things and not losing your cool, as I talked about that husband in the office with the doctor. It's important to remember this. So dementia commonly affects, as I said, people who are 65 and older, but it's not just a senior person's disorder. Okay? It can happen. Statistics give us that females are twice as likely to develop Alzheimer's. It can also lead to, dementia can lead to things like hypertension. It can lead to, this was an interesting statistic that I got from the NIH. It could be the CDC.gov. 50 plus individuals that are Hispanic and Black ethnicities will develop dementia earlier. So 50 plus. What happens if you're socially isolated? Dementia can set in. What happened during the pandemic led to a lot of that. But it's never too late to help people change, to help people grow and learn what they need. And I want you to take care of yourself. I want you to remember that you are always just as important as the person you're helping. And try to help yourself and remember that you need to separate the person that you're helping from the disease. Because cognitive decline and emotional dysregulation, fancy word, can lead to frustrating behaviors. Really frustrating. And you may not have ever seen them nor expected them. So take a breath, count to five, maybe 10. But recognize that these symptoms of cognitive illness and also with ADHD are happening. They're not willful. The person's not doing it on purpose. And you're also, as the caregiver, a very stabilizing force. You are a statue that they can lean into. That's really, really important. So make sure that you speak calmly. Try to avoid arguments if the person becomes agitated or confused. Again, count to 10. That helps reduce your stress. And avoid burnout. AriGiver stress is serious. It's a serious clinical reach. You've got to look, as I said, to MBSR, Mindfulness-Based Stress Reduction. John Kabat-Zinn, who's a professor in Boston, developed this. And Andrew Weil, Dr. Andrew Weil is in Arizona doing amazing integrative care to partner with medicine for conditions. And I'm going to remind you, schedule daily breaks for your own respite care, for their respite care, and maintain your own health care appointments. Don't cancel them because something else is going on. You can always have somebody come in and stay with that person. There are organizations that have people to help you. So look it up. Use the internet for those kinds of things. And make sure that you actually, when you're talking to the health care professionals, ask them, "Please tell me about...", okay? Because they can't explain it to you. It may be the nurse practitioner, not just the doctor. They may be a better person to explain. The physician's assistant may be a better person to explain. But find that person in the medical practice that you can hear, that can help you. So before I sign off on this episode, I want to speak directly to the spouses, to those partners, the family members, all the caregivers that may be listening. Thank you. Won't you, for all you do? Yeah, it does make me feel clamped because it's so important. The way that my mother was with my father was breathtaking. They were together 65 years. It's a long time. And she was so patient with him. And she was so good with him. I learned a lot from her. And I know caregiving isn't easy. Remember, I'm also a patient advocacy navigator. So I'm with patients in appointments, not normally for dementia, normally for chronic conditions like MS, fibromyalgia, rheumatoid arthritis. But having the ability to listen and sit back and take a breath is one of the things that I was taught. You really need to listen. As my grandmother said, and I've said many times on this show, we have two ears and one mouth, so listen twice as hard. Whether you're a caregiver for someone with MS or epilepsy, Parkinson's, TBI, Alzheimer's, ADHD or another neurological condition, you're carrying responsibilities that many people never see. Your brother or sister, your cousins, their sister or brother may not see what's going on because they're not with that patient, that person all the time. And remember, all the things that you are doing, they don't see you remembering appointments. They don't see you keeping track of medications. They don't see you helping organize the daily lives of people who are going through this with cognitive changes, dementia, all these neurological symptoms. And sometimes you're even carrying their emotional weight or trying to keep someone else afloat while wondering who's helping you, and that is a lot. So one thing I hope today's conversation has helped explain is that cognitive symptoms are often invisible. Yeah, we know what visible illness is, but you as the caregiver, they don't see everything that's going on. So just remember, when your loved one forgets something you told them yesterday, take a breath. When they lose track of time or miss the beginning of a family important event, they didn't do it on purpose. That's what's going on. So when they react emotionally in ways that don't seem to make sense, that's how they're feeling. Don't take it on. Just observe it. Just support it. And please remember, these aren't symptoms. They're not character flaws. This is what's going on for them. I want you to be able to live your life and have an incredible, incredible experience with the person you love as you help them. Your compassion, your patience, and even your willingness to keep learning matters more than you probably realize. I hope you have a great week, and I'll see you on the other side, and we'll continue to talk about chronic conditions and how we can help. Thanks for listening. Thanks for tuning in to this episode of Beyond the Diagnosis. If something we talked about today resonated with you, if you're craving deeper understanding, better support, or just want to know you're not alone on this journey, make sure to subscribe to my free substack at Micheleweston.substack.com. M-I-C-H-E-L-E-W-E-S-T-O-N.substack.com. That's where I share personal insights, expert takeaways, and extra resources to help you stay informed, empowered, and one step closer to the clarity you deserve. And if you found this episode helpful, leave a review or share it with someone who needs to hear it. Your voice helps this message go further. Until next time, keep asking questions, keep trusting yourself, and keep going Beyond the Diagnosis.