Hi, everyone -- This is such a thought-provoking topic. It makes me think of a new-to-me term: "compassion fatigue." (More on that further down.)
I've scanned through several responses here and agree that the experience of caregiving evolves, changing over time as we become more experienced, competent, etc.. It also changes in response to the person/people we are caring for.
In my experience, I wouldn't say caregiving gets *easier*. Rather, it gets more predictable. I bring more knowledge, resources and perspective to it as time goes on, and, as another contributor said, I have gotten better at knowing when to panic and when not to.
I write the Sandwich Season substack, about my experiences providing various types of care for my aging dad and my young adult son, who has special needs, and also about my experiences with my mom, who had dementia and passed away in 2023.
- Avoidance and not wanting to be around your loved one (choosing to work late, daydreaming about no longer having to care for them, etc.)
- A decrease in patience and tolerance
- Angry outbursts that are uncharacteristic of your behavior
- Cynicism and hopelessness
- Heightened anxiety
- Impaired ability to make care decisions
- Difficulty sleeping
- Physical symptoms, such as headaches or gastrointestinal issues
The day I first read Bursack's post, I saw myself in 7 of the 9 warning signs. I had been thinking of finding a counselor, and this spurred me to finally do so. I've had two sessions so far, and our conversations have focused on recognizing and setting boundaries. After our first session, I set some boundaries about when I answer my phone and check messages. I'm still evolving in this area, but it was instantly helpful.
I find boundary-setting especially challenging when I believe my family members might need my help and that I could let them down if I don't respond instantly. But changing how often I check/answer my phone has helped me recognize something important: Many of the calls I receive from family can be taken later, when I'm not in the middle of something else.
And I would say that this change is actually starting to make caregiving a bit "easier" -- or maybe, to put it more accurately, "more sustainable" -- for me.
I'd be curious to hear about the boundaries others have established to make caregiving "easier" or "more sustainable" for you.
Thanks, Sarah. I agree that compassion fatigue is a reality for long-term caregivers—and being aware of it is important. We love our loved ones and want to do all we can for them, but we’re only human and get tired, too. I’m grateful you’re finding ways to create boundaries and better care for yourself.
For me, an important way I learned to create boundaries was to let go of thinking I was the one who needed to do everything. In this context, being a nurse wasn’t helpful, because I thought I should take care of more than was realistic or good for my own health.
Unfortunately, I know the reality is that some caregivers actually do need to do everything if there’s no back-up available. But when there is, I’ve found what a huge difference it makes to step back and let someone else lend a hand.
Sarah, this is such an important point. I wish I had set more boundaries with my mom. I think it would have been good for both of us in the long run even though she would have come along kicking and screaming.
I’m better at setting boundaries with my dad and my neighbor. When my dad wants me to help him with something he wants it immediately. But it’s rarely something that requires my immediate attention.
My neighbor is looking for me to fill an empty space that will never be possible for me to fill.
I’m can set the boundaries (most of the time), but it’s not easy.
You make two especially insightful points here: First, that it is easier to set boundaries for certain people than for others. There is such a chemistry to it! Second, the fact that setting boundaries takes energy. I think for a long time I thought it was just easier to do the thing that was asked rather than set a boundary. Now I've recognized it's no longer sustainable to respond and respond and respond. So I'm transferring energy into boundary-setting in the hopes that eventually this will make everything easier … or at least that I'll feel truer to myself. I'll take either outcome.
I think it’s natural to think it’s easier to just do the thing, but you’re right—that’s not sustainable. Setting boundaries is something you have to practice.
Sarah, this is very intriguing and I recognize quite a few when I was in caregiver crisis mode. "More sustainable" is a good term to use.
When I'm asked to do anything, I take that pause and say I'll get back to them. I have always been the go to person to fix problems in my family--mainly because I didn't mind and I'm a problem solver. But when it dis-ables them from helping themselves, I have to step back.
I'm going to mull over the boundaries some more. thanks for sharing!
The pause is an excellent strategy, Janine. Thank you for that.
Also, I relate to what you say about being the family fixer. It's one of those qualities that feels like a gift … until it doesn't. And yes, it can dis-able others. I've been telling my dad lately that I'm trying to “empower” him to do certain tasks on his own. I'm not sure he's buying into it, but we'll keep trying!
Sometimes I jump right in and I always wonder why didn't I pause?! I often will write in my journal to get to the why and how this ask is aligned for my highest and best good. Almost like a pro/con list.
It's a balance of trying to do more for them to keep them safe and also empower them to keep doing as much as they can on their own.
My mom just told me that she does laps with her walker around her apartment into the kitchen, dining room, living room and back.
The power of journaling, yes! It has gotten me through some of my most challenging times—helping me see situations more clearly. I have long dry patches in the journaling department, but when I get it out again, it is so helpful. Thanks for the reminder. :)
I am Kaeli and I currently live in Ecuador with my husband Kurt. I have cared for grandparent-in-laws, my mother-in-law, and 2 husbands along with friends who were like family.
In over 30+ years of caregiving, it has never gotten easier. In fact, im some.ways it's harder. I am.not sure if I can articulate why but caregiving can wear you down physically, emotionally, mentally. The question of whether caregiving gets easier would've have triggered me too!
Caregiving isn't a performance based endeavor complete with smart goals but rather a constant improvisational dance depending on the needs of your loved one and the needs of the moment. Every situation is unique and different. And what is asked of you goes far beyond intellectual knowledge but it also demands that you respond from your heart and soul.
As you pointed out, it's not a unidimesnional task but so much more complex and rich in its nature.
“A constant improvisational dance” is such a lovely way of putting it. I wrote about dancing with Dad in one of my posts when trying to help him onto the commode. There are times when we have to dig deep and get creative at making the tough bits more palatable. And as you say it has more to do with the heart and soul and our relationship with the other person than anything else.
Sally, I love it that you described helping your dad as a dance! I remember when my husband was in rehab post-stroke, I got him to take a step by "dancing" with me.
“Caregiving isn't a performance based endeavor complete with smart goals but rather a constant improvisational dance depending on the needs of your loved one and the needs of the moment. Every situation is unique and different. And what is asked of you goes far beyond intellectual knowledge but it also demands that you respond from your heart and soul.”
I love this: “Caregiving isn't a performance based endeavor complete with smart goals but rather a constant improvisational dance depending on the needs of your loved one and the needs of the moment. Every situation is unique and different. And what is asked of you goes far beyond intellectual knowledge but it also demands that you respond from your heart and soul.”
Jodi here, caring for my mom with dementia for 12 years, the last 8+ in my home. Doesn't it get easier? Well, I let more slide than I used to, I know more what's a big deal and what's not, I've learned better how to handle the medical community, but you know what else? I'm 12 years older. That's 12 years of not taking proper care of myself, not getting enough sleep, regular old aging that happens no matter what. I'm tired. My expectations keep getting dashed and I have to constantly deal with my resentments because as much as I volunteered for this—and I'm lucky because we have daytime help—and we can afford a facility if I change my mind at some point or it becomes really overwhelming, but when I volunteered, when I said come live with me, we all (including the doctors) figured her for a year, two at the max. Eight years later, she's fine.
Easier? She becomes more physically dependent with each day. And I get older. She forgets me and the world more each day. The days when she knew what was happening were awful, so it's easier now that she doesn't realize what she's lost.
I've become an expert on DME and what Medicare (in the US) will cover and what it won't. An expert in dealing with the Veterans Administration and managing medications, and blah blah blah. But easier. No. Only in the way if you've worked on a factory line for 10 years you don't really have to think about a lot of the steps in a daily routine. The dialogue is the same, over and over.
Easier? No. Just more rote. (I know this all sounds awful and that I'm waiting for her to die and I am and I'm not. The her I knew has been gone a long time. What there is now is mostly a shell. I don't wish that on anyone and the next person who says, "It's a blessing." or "You're a saint," is going to see how much of not a saint I am.)
I love her. But knowing what I know I don't think I'd make the same choices if I could go back.
Hi, I am Debbie. I am a caregiver to two and I have been a caregiver for 24 years.
My son is Disabled and even though he is 24 because he has Down syndrome he ages a bit faster than someone who doesn't. He needs 24/7 supervision and is non verbal. I also care for my mother in law. If I am honest, she wears me out more than my son. She has complex medical needs including severe type 1 diabetes, and early dementia.
Years back I cared for my mom who had cancer, it was so different than now. Each person has individual needs, they each have their own personalities. It is like comparing apples to oranges.
Have I ever been ‘swirled’ by a question?
The one I hear a lot is, "How do you do it all?"
My answer is simple. It isn't a choice; it's just part of life.
As a Christian, my first thought is always, *What would Jesus do?* My son is a gift, not a burden. My mother-in-law needed someone, and I couldn't claim to live my faith while turning my back on someone who needed help.
Debbie, I’m with you. Yes, caregiving can be challenging—but it’s also a privilege and a blessing. And unless the Lord brings us home suddenly, we’re all going to need help at some point.
Kirbie, thank you for sharing so honestly about both chapters of caregiving for your parents. I'm grateful for both you and your dad that his journey was so positive. And my heart aches that the current journey with your mom is so challenging.
What's sticking out in my mind is to encourage you to somehow find a way to take care of you in the midst of it. And to say how much I admire your love and grit in doing what's needed to care for her. But please try to care for yourself as you do. I don't say that lightly, since I've been on the receiving end of that advice plenty, and I know it's usually easier said than done.
HI, Janine here. I care for my mom, along with my three siblings. She's independent in her own apartment and we take turns caring for her and have specific responsibilities along with a professional coming in once a week.
My caregiving experience spans from caring for my 12-year-old son when he was diagnosed with cancer. Even though it was only a 4-month journey before he died, I completely lost myself trying to help him heal. I didn’t eat well, I was sleep deprived, overwhelmed, and tried to do everything. I needed to have control, because I feared missing something.
That loss physically and emotionally impacted my body. In order to walk a path of healing, I had to learn to take care of myself on a physical, emotional, and spiritual level.
Looking back at my journals, I saw that my mom’s care really started 10 years ago with going with her to the doctors, downsizing, eventually no longer driving. Having a flexible work schedule, I took on more than my 3 siblings.
When she fell and had major surgery in 2023, her care increased exponentially. She stayed with me during recovery, and once again I let everything go. Really it was because my mom was in crisis mode 24/7.
Once she went back to her apartment, my care for her continued, but I had to put my health first. That doesn’t mean that I ignore my mother or that she isn’t cared for in the way needed. My siblings balance the support.
I learned I had to take care of myself first. (I’ll expand and share more about this next month and look forward to discussions.)
Janine, I also want to offer my support and send you love for the loss of your son. To go through that is more than enough, but to balance that while being your mum’s caregiver, takes it to another level. Through it all you have understood the need to take care of yourself at every level. That is a gift, even though it came at such a heartbreaking price. Your words are encouragement to us all. Thank you for sharing this with us.
I appreciate that. There was a gap between knowing I had to take care of myself and being forced to, but it's something that is now non-negotiable to me.
Thank you and I think that's where it gets difficult. Of course we wish to care for and love our parents, but it's a constant push and pull and trying to balance on a rocky ship.
Thanks for sharing, Janine. Hugs. I think there's a piece that you point to between the lines about 'losing yourself' - in addition to learning how to take care of our mental well being and health...we're also evolving our sense of self.
These health and life events change us. We keep learning and recalibrating what we need for ourselves.
Janine, my heart aches for you in losing your son. I can't imagine the depth of pain within that journey, and it's no wonder you lost yourself in the process.
But I'm also grateful that you've learned to take better care of you while caring for your mom, and I'll look forward to your sharing more about that next month.
Hi, I'm Sue, and my husband and I live in Central Florida. I was the primary caregiver for my mom, and then helped my husband care for his mom.
After hip fractures six months apart, my mom sold her place and moved in with my husband and me. She lived with us almost 10 years. For the last four years of her life, she needed lots of help and hands-on care. But for my mother-in-law (Tina), we sold our place and moved in with her. We cared for her for about five years. One had dementia, while the other didn't. Mom stepped into Jesus's arms in 2015, and Tina did the same in January 2026. My husband and I were blessed to get to care for both of our moms for many years. I'm a former hospice nurse, so that helped us navigate both of these journeys.
Have I been swirled by a question?
Yes, usually one related to trying to explain the daily details of caregiving to someone who's never done it. :) So, I usually try to keep things general and light—unless I know I'm talking to someone who "gets it."
What have I learned about myself over the years of caregiving?
Oh, boy. I could be here all night. :) But what pops into my head are the many individual experiences I've had that have fueled an important overarching lesson: I need to let go more.
With my nursing experience, I often had unrealistic expectations of how much I could/should do— which was especially true with my mom. Gradually, I learned the importance of accepting more help, sooner.
Thanks for sharing, Sue. Thanks for reading the earlier drafts ;-)
I can relate to the 'I need to let go more' as an overarching lesson...more in hindsight. It's not easy to determine 'the when' we're in the journey of caregiving and moving forward...I think the lesson has 'tuned up' my gut instinct and given me more confidence in the choices I make.
Hi, I’m Kirsten. I live in Colorado and write a SS and have a podcast about navigating life with older parents. I have been “swirled” by so many questions on this caregiving journey!
@Adrian and I were having a conversation recently about the “practice of caregiving.” I think that is relevant here because it never gets easy and we never reach perfection. We’re always learning, onboarding new knowledge, new skills, new challenges to navigate. So it’s constantly a practice. Having a sympathetic and supportive community to lean on is so helpful. Actually, it’s critical to your own mental health.
I think it’s so easy to be isolated and sometimes we just need someone to say “I see you and all that you are doing to support someone who will never fully appreciate it.”💛
Kirsten, yes! Caregiving can be very isolating and finding the support we need is critical. I've been blessed with a handful of friends who've been there for me just when I needed them most. Since they either are or were caregivers themselves, the support goes both ways.
So true, Kirsten. The people we care for change as do the challenges. Plus, our life situations change as well It's a dynamic practice and community is absolutely key. It doesn't get easier because of the constant change.
Thanks Kirsten - I am so grateful for the community we're creating here on Substack and remind ourselves that we're not the only ones tackling the challenges of care.
You're right that we're always learning and refining our practice of care. And I've definitely learnt some much from you as well as the other contributors here! Appreciate @Victoria for bringing us together!
The tiniest gesture can be so big to another person. I appreciate your words, Kirsten. Even if someone doesn’t experience what you have (yet, I always say yet bc I feel caregiving will become one’s journey one day), i think it’s ok to expect those closest to us have sympathy for us.
Hello, I'm Helen, and I was caregiver for my mom as she slid into dementia before her death several years ago. I never found caregiving "easy." As with anything, you learn as you go, but you are also traveling a constantly changing landscape. It's more about keeping your loved one safe and keeping yourself from falling apart than evaluating "easy" or "hard."
Helen, I agree that the "constantly changing landscape" of caregiving is such a challenging part of this journey. That's especially true when caring for someone with dementia, since so much can change from minute to minute.
You summed it up right there with “keeping your loved one safe and keeping yourself from falling apart.” It’s a balancing act and often the days bleed into each other as we switch to survival mode. We become so hyper vigilant about their needs we neglect ourselves. It’s imperative that we don’t. Easier said than done!
Thanks for reading, and sharing, Helen. 'travelling a constantly changing landscape' is a great phrase. And definitely "keeping yourself from falling apart"!
Kirbie, my heart goes out to you. My mom was my best friend, but our relationship was complicated. It sounds like yours has bigger challenges than mine had. She’s lucky to have you, and I hope the two of you make some good memories during this time, and that it helps you heal in some way.
Hi, I’m Tina, and I care for my dad. But that’s not where my caregiving journey began. Twenty-five years ago, I moved across the country to help care for my grandpa after he was diagnosed with dementia. Responsibilities were shared that time. Then my parents were in a car accident, my dad suffered a TBI, my mom became almost paralyzed with fear, and they moved in with me. When work transferred me, they came with. Twice. Then my mom was diagnosed with late-stage terminal cancer. I took care of her. Alone. Now it’s just Dad and me, and I take care of him. I’m a great caregiver. I’ve figured out a lot in 26 years and through various caregiving needs. I have systems, processes, and tools. But caregiving never gets easier. I think it gets harder because as whatever diagnosis they have progresses, we get more run down. And it creates a relationship that neither of us were meant to have. I’ve had to do things and say things to my parents that no daughter should have to, and they shouldn’t have to receive. I would do it again. I would care for them again. Every time. But that’s not the point.
In many ways, Dad is the easiest person I’ve cared for, but that also means it’s harder for my relationships and conversations with others. He doesn’t look like he needs as much help as he does. I get a lot of blank stares when I try to explain, so I don’t. I get a lot of patronizing pats on the back when I turn down invitations. But the worst was when someone said, “You’re single. Your life is easy. You don’t have any responsibilities.” It took everything in me not to punch her in the face. That was said while my mom was sick. I don’t mean to sound like I’m complaining because I’m not. I have a good life. Not the one I would have chosen or expected, but good. There’s just a reality about caregiving that you can’t understand unless you live it.
Tina, I'm really glad you didn't punch that lady in the face since your dad needs you. :)
But I'm with you. Insensitive comments are usually from those who have no idea what it's like to love someone so much you'd do anything for them—as you did for your mom, and now your dad.
Thank you for sharing your story - you really are incredible and have shown up every step of the way. I'm sure your parents have cherished you throughout the journey as you clearly love them deeply. And as for the naysayers, let them be water off a ducks back — nothing to be gained from talking to them!
Tina, 26 years. Wow. You’re amazing — moving with your parents, twice. I feel moving is one of the hardest things to do and to do it with your parents.
I am sorry to hear someone even said that — it’s obvious that person has no idea and their own perspective of what single is or how difficult their marriage is. Either way, I am sorry you had to be in that receiving end.
Thanks, Viva. I’m don’t think she meant it the way it came across, but it was a huge assumption on her part. It’s made me more thoughtful about my own words.
This sounds incredibly difficult, Tina. I don't see how that insensitive person could possibly assume that your life was easy. It's so true: you can't understand caregiving until you live it.
Thank you, Helen. She said this several years ago. Ironically, she now has to care for her mother (with help from her husband and grown children), and she’s really struggling.
"I’ve had to do things and say things to my parents that no daughter should have to, and they shouldn’t have to receive. I would do it again. I would care for them again. Every time. But that’s not the point." - SO true for me too, Tina.
There are many many moments where, without walking inside our skin as us (shoes aren't enough!) , in that specific context...it feels we need numerous qualifiers to explain choices/decisions/actions to someone else, even caregivers sometimes
Whiskey Tango Foxtrot!!! - “You’re single. Your life is easy. You don’t have any responsibilities.” It took everything in me not to punch her in the face. That was said while my mom was sick."
Bravo for your restraint. That's definitely from someone who doesn't have an empathy gene...or perception. I mean 'read the room'!
Assumptions and stereotypes are the worst. We need an article/note on "the best one-liner comebacks for when..."
The only one I can think of right now, "I'm sorry, love, but whoever sold you that superpower of being all-seeing, all-knowing, got it confused with all-judgment, no empathy aka 'how to alienate everyone around you and end up alone! - Bye'
Wow, Tina. I admire your restraint regarding that comment. You are definitely not complaining. Rather, caregiving places us in an alternate reality other people cannot fathom.
Hi, I’m Sally. I returned to the UK after 25 years overseas to look after my father. We had two years together before he passed at the end of February this year. I am still processing the whole experience.
There is so much to say about this week’s discussion. I would like to begin with a general observation regarding questions that hit us sideways or comments that lack compassion and insight. I have noticed throughout my caregiving journey that while some people mean well, there are those who might ask how we are doing as carers, but are completely incapable of understanding our experience. There have been times when after being prompted I have shared some of the realities of care, only to meet with a rebuttal of not counting my blessings enough. Over the past few months I have gained some clarity and can see these conversations for what they are. There are people who just don’t get it, and no amount of words will help them get it. They will have to walk in our shoes to understand. This is one of the reasons why I began sharing on Substack. It was a great outlet to be able to share the reality without being accused of complaining about how hard that reality is.
With regard to Kerbie’s experience, my heart aches when I read about the difference between caring for your dad and your mum. Your dad sounds so similar to my precious daddy. I feel for you when I read your words about your mum. It must be so confronting trying to care for her while having all those other feelings bubbling up at the same time. Like you said, you have no idea which version of your mum is going to turn up on any given day. All I can do is cheer you on from the sidelines, offer you words of support and prayers of comfort and tell you that you are doing an amazing job. You are doing what most people choose not to do.
"There have been times when after being prompted I have shared some of the realities of care, only to meet with a rebuttal of not counting my blessings enough."
Sally, yikes. I'm so glad you're seeing those unhelpful conversations for what they are. There are many who will either end up being caregivers down the road or needing care themselves who will be looking back on comments like those with regret.
Those ‘counting your blessings’ people aren’t caregivers. Are there blessings? Yes. Do they get overrun by hefty schedules, hallucinations, answering the same question twelve times in ten minutes, needing to make dinner while operating on fumes? Yes. They can co-exist, but one usually sort of ‘buries’ the other, at least temporarily. I think I saw the blessings of caring for my dad more after he was gone and I could look back. During, not so much. Now, definitely not so much.
Caring for someone is one of the most altruistic actions anyone can do, alongside parenting. It requires a lot of work, self awareness and sacrifice. For someone who hasn't experienced or witnessed it firsthand, these might seem very foreign. Sometimes we have to just meet people where they're at versus where we hope they would be. Today they might be dismissive and not understand, but maybe down the line when their own parent ages, they might be confronted by it and think back to the conversation you had.
A friend of mine is a wonderfully empathetic sounding board for me, even though she didn't understand or experience it.
Now she's beginning to understand because her parents are aging with health issues. As I told her--we aren't here to fix anything. We simply hold space for one another and that is everything.
My best friend tried to understand, but I could tell that she didn’t always get it. Then her MIL moved in for a few months. Lightbulbs went off. My other best friend cares for her parents long distance. We have a lot to talk about. 🙂
That’s so true. It’s too ‘uncomfortable for them to feel.’ You summed it up in those words.
And you have created a space of public awareness regarding these issues. I appreciate you because you’ve created a space for all of us to be able to share the things we’ve experienced openly and honestly without judgment. Thank you, Victoria. 🙏
Thanks, Sally. Exactly. I'm also hoping that our articles can shape public awareness and conversations moving forward. Whether that's through people's memoirs or our collective voices on Substack itself.
"it’s isolating. It creates a distance between ‘them and us’. It drives disconnection, is divisive….I’ve experienced it SO many times!
For me, it’s usually not about good intentions; it’s because the painful situation we’re going through is too uncomfortable for the person to feel - they’re choosing not to sit in the pain with us (intentionally or subconsciously).
It’s othering disguised as applause, setting us up on that high-up pedestal. of sainthood or superhuman, far away from them."
Hi! I'm Adrian, living in the US West coast and I write about the invisible work of caring for an aging parent. I've been doing so for over a decade with Mum and I write about our experiences in a long-distance situation.
You're absolutely right to be frustrated by that question. I feel the word "should" can be quite loaded as it anchors around an unvalidated expectation versus letting the person being asked to describe their situation.
Some individuals don't realize that care changes over time — like anything it isn't static and I'd say that someone with multiple health conditions is more likely to worsen or have moments where acute attention is required. And nature of aging means that at each stage, the situation asks something different from you. To both your and Kirbie's situations, care also looks very different by the individual you're caring for as well as the people around you. I recently had a conversation with a friend about her mother's cancer diagnosis and how she's watched her brother and relationship with him evolve during their journey. The human and relational element goes beyond caregiver-recipient dyad.
I think what does happen is you get better at handling the situations that come your way. After some time you've been through enough to know how to respond and not be thrown into a panic. You might become tougher, perhaps a bit more detached, and are better at handling your emotions. I'm not sure if I would define that as 'easier' - but perhaps just the effect of being more resilient.
"I'm not sure if I would define that as 'easier' - but perhaps just the effect of being more resilient."
I like that, too, Adrian. Resilience can play out in so many ways. And I think that along with caregiving challenges, that changes, too. What's needed on any given day (or season) evolves—both for our loved one and for us.
You’re absolutely right and highlighted one missing piece — us. That our needs evolve too and it forms part of the caregiver-recipient dyad. I think back to when I first started caring for Mum which was a lower lift and I was single and moving around the country — to now married, settled etc. Nothing stands still!
Time has taught me what requires panic and what doesn’t, but the hyper vigilance keeps my nervous system in overdrive. You never know when…. I admire you for being able to manage that.
Hypervigilance is no joke. I never even realized that's what I was going through until a few months ago. For seven years (almost since moving in), my chronic sinus infections were worse - I've had every test in the book and the sinuses aren't an overriding problem. Now, I understand it's the hypervigilance. I try to do more deep breathing and I spend less time 'around' Mom. We live in the same house, but if she's in 'a mood', we spend it on different floors....part of me hates that and part of me needs it.
Agree. My hyper vigilance was making me ill. For me, journaling and meditation have been life changing, but sometimes it's easy to let those practices fall off. It's a balance.
Oh I hear you about the hyper-vigilance and the toll it takes on your nervous system. Perhaps because Mum is at a distance it is easier for me to disconnect but I imagine the proximity encourages our minds to race when we recognize patterns a mile off.
Thanks Adrian! Yes, all relationships change after any diagnosis.
I think, for me, "panic' is still 0 to 100, perhaps even in a shorter time - but yes, on the outside, to someone else, I probably look tough, resilient, in control and calm. To your point, experience has taught me the processes and actions I need to take in a crisis or if a problem arises. I've gotten faster and more adept at responding in a crisis and I've MANY workarounds/creative solutions to draw on.
From one perspective, that's being more capable as a caregiver, from a personal perspective beyond being ' the carer' I need to actively reapply or find more tools to process emotions to recalibrate me as myself again - because we're the daughter/son. That's my version of resilience.
Burnout happens when I don't process/avoid my own personal experience. Like a doctor - there's only so much clinical detachment we can do as their adult child/spouse/parent-caregiver. So yep, I've become better at handling my emotions, but it's an active practice of resilience and recalibration, not an automatic outcome of repeated experiences.
Does my personal experience resonate with what you were thinking?
My thinking was more from the everyday experience of recognizing patterns and habits, and learning how to make the system work for you. A friend who cares for her grandfather that requires regular transfusions shared how she has come to recognize when he needs to visit a clinic sooner, as well as how to bring clinicians up to speed so he gets the treatment he needs. These are things that come with time and familiarity.
But you raise a point about the emotional toll and being able to manage that. It’s interesting how you recognize that burnout can stem from not processing your personal experience. You’re right that unlike clinicians who leave their work in the consultation room, we are intimately connected to our loved ones and the work of care is right there at home. And perhaps that self awareness is part of how you stay out of trouble, by recognizing how you handle stress, refresh your cup, create space for yourself, and allow yourself to disconnect. I think there are both active and passive elements to maintaining an internal equilibrium.
Would also love to hear your many workarounds/solutions!
I think there is a difference between systems that help us manage the day to day and the hyper vigilance that comes from not knowing what will happen next or when the next thing will arrive.
Dear friends, please join me in offering Kerri our heartfelt condolences for the loss of her Mom: https://otherparenthood.substack.com/p/in-loving-memory Sending you hugs and strength, Kerri. xo
❤️🙏
Hi, everyone -- This is such a thought-provoking topic. It makes me think of a new-to-me term: "compassion fatigue." (More on that further down.)
I've scanned through several responses here and agree that the experience of caregiving evolves, changing over time as we become more experienced, competent, etc.. It also changes in response to the person/people we are caring for.
In my experience, I wouldn't say caregiving gets *easier*. Rather, it gets more predictable. I bring more knowledge, resources and perspective to it as time goes on, and, as another contributor said, I have gotten better at knowing when to panic and when not to.
I write the Sandwich Season substack, about my experiences providing various types of care for my aging dad and my young adult son, who has special needs, and also about my experiences with my mom, who had dementia and passed away in 2023.
So back to compassion fatigue. I self-diagnosed myself with compassion fatigue after reading these "warning signs of compassion fatigue in family caregivers" from Carol Bradley Bursack's post (You can find the post at: https://www.agingcare.com/articles/compassion-fatigue-caregivers-beyond-burnout-196224.htm):
- Feeling overwhelmed, exhausted, and drained
- Avoidance and not wanting to be around your loved one (choosing to work late, daydreaming about no longer having to care for them, etc.)
- A decrease in patience and tolerance
- Angry outbursts that are uncharacteristic of your behavior
- Cynicism and hopelessness
- Heightened anxiety
- Impaired ability to make care decisions
- Difficulty sleeping
- Physical symptoms, such as headaches or gastrointestinal issues
The day I first read Bursack's post, I saw myself in 7 of the 9 warning signs. I had been thinking of finding a counselor, and this spurred me to finally do so. I've had two sessions so far, and our conversations have focused on recognizing and setting boundaries. After our first session, I set some boundaries about when I answer my phone and check messages. I'm still evolving in this area, but it was instantly helpful.
I find boundary-setting especially challenging when I believe my family members might need my help and that I could let them down if I don't respond instantly. But changing how often I check/answer my phone has helped me recognize something important: Many of the calls I receive from family can be taken later, when I'm not in the middle of something else.
And I would say that this change is actually starting to make caregiving a bit "easier" -- or maybe, to put it more accurately, "more sustainable" -- for me.
I'd be curious to hear about the boundaries others have established to make caregiving "easier" or "more sustainable" for you.
Thanks, Sarah. I agree that compassion fatigue is a reality for long-term caregivers—and being aware of it is important. We love our loved ones and want to do all we can for them, but we’re only human and get tired, too. I’m grateful you’re finding ways to create boundaries and better care for yourself.
For me, an important way I learned to create boundaries was to let go of thinking I was the one who needed to do everything. In this context, being a nurse wasn’t helpful, because I thought I should take care of more than was realistic or good for my own health.
Unfortunately, I know the reality is that some caregivers actually do need to do everything if there’s no back-up available. But when there is, I’ve found what a huge difference it makes to step back and let someone else lend a hand.
Yay for Mom, and for you for recognizing her accomplishment.
Sarah, this is such an important point. I wish I had set more boundaries with my mom. I think it would have been good for both of us in the long run even though she would have come along kicking and screaming.
I’m better at setting boundaries with my dad and my neighbor. When my dad wants me to help him with something he wants it immediately. But it’s rarely something that requires my immediate attention.
My neighbor is looking for me to fill an empty space that will never be possible for me to fill.
I’m can set the boundaries (most of the time), but it’s not easy.
You make two especially insightful points here: First, that it is easier to set boundaries for certain people than for others. There is such a chemistry to it! Second, the fact that setting boundaries takes energy. I think for a long time I thought it was just easier to do the thing that was asked rather than set a boundary. Now I've recognized it's no longer sustainable to respond and respond and respond. So I'm transferring energy into boundary-setting in the hopes that eventually this will make everything easier … or at least that I'll feel truer to myself. I'll take either outcome.
I think it’s natural to think it’s easier to just do the thing, but you’re right—that’s not sustainable. Setting boundaries is something you have to practice.
Sarah, this is very intriguing and I recognize quite a few when I was in caregiver crisis mode. "More sustainable" is a good term to use.
When I'm asked to do anything, I take that pause and say I'll get back to them. I have always been the go to person to fix problems in my family--mainly because I didn't mind and I'm a problem solver. But when it dis-ables them from helping themselves, I have to step back.
I'm going to mull over the boundaries some more. thanks for sharing!
The pause is an excellent strategy, Janine. Thank you for that.
Also, I relate to what you say about being the family fixer. It's one of those qualities that feels like a gift … until it doesn't. And yes, it can dis-able others. I've been telling my dad lately that I'm trying to “empower” him to do certain tasks on his own. I'm not sure he's buying into it, but we'll keep trying!
Sometimes I jump right in and I always wonder why didn't I pause?! I often will write in my journal to get to the why and how this ask is aligned for my highest and best good. Almost like a pro/con list.
It's a balance of trying to do more for them to keep them safe and also empower them to keep doing as much as they can on their own.
My mom just told me that she does laps with her walker around her apartment into the kitchen, dining room, living room and back.
I applauded her because that movement is key!
The power of journaling, yes! It has gotten me through some of my most challenging times—helping me see situations more clearly. I have long dry patches in the journaling department, but when I get it out again, it is so helpful. Thanks for the reminder. :)
Of course! I have seen and felt the benefits of my journal practice. But that's what it is--a practice that we can always come back to!
I am Kaeli and I currently live in Ecuador with my husband Kurt. I have cared for grandparent-in-laws, my mother-in-law, and 2 husbands along with friends who were like family.
In over 30+ years of caregiving, it has never gotten easier. In fact, im some.ways it's harder. I am.not sure if I can articulate why but caregiving can wear you down physically, emotionally, mentally. The question of whether caregiving gets easier would've have triggered me too!
Caregiving isn't a performance based endeavor complete with smart goals but rather a constant improvisational dance depending on the needs of your loved one and the needs of the moment. Every situation is unique and different. And what is asked of you goes far beyond intellectual knowledge but it also demands that you respond from your heart and soul.
As you pointed out, it's not a unidimesnional task but so much more complex and rich in its nature.
“A constant improvisational dance” is such a lovely way of putting it. I wrote about dancing with Dad in one of my posts when trying to help him onto the commode. There are times when we have to dig deep and get creative at making the tough bits more palatable. And as you say it has more to do with the heart and soul and our relationship with the other person than anything else.
Sally, I love it that you described helping your dad as a dance! I remember when my husband was in rehab post-stroke, I got him to take a step by "dancing" with me.
Beautiful ❤️
“Caregiving isn't a performance based endeavor complete with smart goals but rather a constant improvisational dance depending on the needs of your loved one and the needs of the moment. Every situation is unique and different. And what is asked of you goes far beyond intellectual knowledge but it also demands that you respond from your heart and soul.”
I’m with Tina, I love that, too, Kaeli. :)
Thanks, Sue! <3
I love this: “Caregiving isn't a performance based endeavor complete with smart goals but rather a constant improvisational dance depending on the needs of your loved one and the needs of the moment. Every situation is unique and different. And what is asked of you goes far beyond intellectual knowledge but it also demands that you respond from your heart and soul.”
I am happy it resonated with you. Victoria inspired it. So it just flowed. 💛
Victoria is so good at that. ❤️
She is! <3
Aw thanks, Tina!
Thanks Kaeli, beautifully said and a lovely metaphor.
I'm happy to see this piece resonated and inspired you.
<3
Jodi here, caring for my mom with dementia for 12 years, the last 8+ in my home. Doesn't it get easier? Well, I let more slide than I used to, I know more what's a big deal and what's not, I've learned better how to handle the medical community, but you know what else? I'm 12 years older. That's 12 years of not taking proper care of myself, not getting enough sleep, regular old aging that happens no matter what. I'm tired. My expectations keep getting dashed and I have to constantly deal with my resentments because as much as I volunteered for this—and I'm lucky because we have daytime help—and we can afford a facility if I change my mind at some point or it becomes really overwhelming, but when I volunteered, when I said come live with me, we all (including the doctors) figured her for a year, two at the max. Eight years later, she's fine.
Easier? She becomes more physically dependent with each day. And I get older. She forgets me and the world more each day. The days when she knew what was happening were awful, so it's easier now that she doesn't realize what she's lost.
I've become an expert on DME and what Medicare (in the US) will cover and what it won't. An expert in dealing with the Veterans Administration and managing medications, and blah blah blah. But easier. No. Only in the way if you've worked on a factory line for 10 years you don't really have to think about a lot of the steps in a daily routine. The dialogue is the same, over and over.
Easier? No. Just more rote. (I know this all sounds awful and that I'm waiting for her to die and I am and I'm not. The her I knew has been gone a long time. What there is now is mostly a shell. I don't wish that on anyone and the next person who says, "It's a blessing." or "You're a saint," is going to see how much of not a saint I am.)
I love her. But knowing what I know I don't think I'd make the same choices if I could go back.
Thanks, Jodi. I hear you
Thanks for sharing more depth and details. I'm so glad you've got daytime help.
For anyone reading - I recommend reading Jodi's Letter from a Caregiver: https://www.carermentor.com/p/you-each-deserve-your-own-life-by
Hi, I am Debbie. I am a caregiver to two and I have been a caregiver for 24 years.
My son is Disabled and even though he is 24 because he has Down syndrome he ages a bit faster than someone who doesn't. He needs 24/7 supervision and is non verbal. I also care for my mother in law. If I am honest, she wears me out more than my son. She has complex medical needs including severe type 1 diabetes, and early dementia.
Years back I cared for my mom who had cancer, it was so different than now. Each person has individual needs, they each have their own personalities. It is like comparing apples to oranges.
Have I ever been ‘swirled’ by a question?
The one I hear a lot is, "How do you do it all?"
My answer is simple. It isn't a choice; it's just part of life.
As a Christian, my first thought is always, *What would Jesus do?* My son is a gift, not a burden. My mother-in-law needed someone, and I couldn't claim to live my faith while turning my back on someone who needed help.
Debbie, I’m with you. Yes, caregiving can be challenging—but it’s also a privilege and a blessing. And unless the Lord brings us home suddenly, we’re all going to need help at some point.
Thanks for sharing, Debbie
Yeaahhhh I hear that one a lot too. Love your answer
Kirbie, thank you for sharing so honestly about both chapters of caregiving for your parents. I'm grateful for both you and your dad that his journey was so positive. And my heart aches that the current journey with your mom is so challenging.
What's sticking out in my mind is to encourage you to somehow find a way to take care of you in the midst of it. And to say how much I admire your love and grit in doing what's needed to care for her. But please try to care for yourself as you do. I don't say that lightly, since I've been on the receiving end of that advice plenty, and I know it's usually easier said than done.
HI, Janine here. I care for my mom, along with my three siblings. She's independent in her own apartment and we take turns caring for her and have specific responsibilities along with a professional coming in once a week.
My caregiving experience spans from caring for my 12-year-old son when he was diagnosed with cancer. Even though it was only a 4-month journey before he died, I completely lost myself trying to help him heal. I didn’t eat well, I was sleep deprived, overwhelmed, and tried to do everything. I needed to have control, because I feared missing something.
That loss physically and emotionally impacted my body. In order to walk a path of healing, I had to learn to take care of myself on a physical, emotional, and spiritual level.
Looking back at my journals, I saw that my mom’s care really started 10 years ago with going with her to the doctors, downsizing, eventually no longer driving. Having a flexible work schedule, I took on more than my 3 siblings.
When she fell and had major surgery in 2023, her care increased exponentially. She stayed with me during recovery, and once again I let everything go. Really it was because my mom was in crisis mode 24/7.
Once she went back to her apartment, my care for her continued, but I had to put my health first. That doesn’t mean that I ignore my mother or that she isn’t cared for in the way needed. My siblings balance the support.
I learned I had to take care of myself first. (I’ll expand and share more about this next month and look forward to discussions.)
Janine, I also want to offer my support and send you love for the loss of your son. To go through that is more than enough, but to balance that while being your mum’s caregiver, takes it to another level. Through it all you have understood the need to take care of yourself at every level. That is a gift, even though it came at such a heartbreaking price. Your words are encouragement to us all. Thank you for sharing this with us.
I appreciate that. There was a gap between knowing I had to take care of myself and being forced to, but it's something that is now non-negotiable to me.
I’m so sorry for the heartbreak you’ve had. It really is such a balancing act. It’s good that you have help with your mom, but it’s still hard. 💙
Thank you and I think that's where it gets difficult. Of course we wish to care for and love our parents, but it's a constant push and pull and trying to balance on a rocky ship.
Thanks for sharing, Janine. Hugs. I think there's a piece that you point to between the lines about 'losing yourself' - in addition to learning how to take care of our mental well being and health...we're also evolving our sense of self.
These health and life events change us. We keep learning and recalibrating what we need for ourselves.
Yes, and need to take that time and do what our body, mind, and soul need.
Janine, my heart aches for you in losing your son. I can't imagine the depth of pain within that journey, and it's no wonder you lost yourself in the process.
But I'm also grateful that you've learned to take better care of you while caring for your mom, and I'll look forward to your sharing more about that next month.
I appreciate that, Sue. I think life sometimes teaches us what we need for the next experience.
That’s true. Each challenge and difficulty makes us stronger if we let it.
Hi, I'm Sue, and my husband and I live in Central Florida. I was the primary caregiver for my mom, and then helped my husband care for his mom.
After hip fractures six months apart, my mom sold her place and moved in with my husband and me. She lived with us almost 10 years. For the last four years of her life, she needed lots of help and hands-on care. But for my mother-in-law (Tina), we sold our place and moved in with her. We cared for her for about five years. One had dementia, while the other didn't. Mom stepped into Jesus's arms in 2015, and Tina did the same in January 2026. My husband and I were blessed to get to care for both of our moms for many years. I'm a former hospice nurse, so that helped us navigate both of these journeys.
Have I been swirled by a question?
Yes, usually one related to trying to explain the daily details of caregiving to someone who's never done it. :) So, I usually try to keep things general and light—unless I know I'm talking to someone who "gets it."
What have I learned about myself over the years of caregiving?
Oh, boy. I could be here all night. :) But what pops into my head are the many individual experiences I've had that have fueled an important overarching lesson: I need to let go more.
With my nursing experience, I often had unrealistic expectations of how much I could/should do— which was especially true with my mom. Gradually, I learned the importance of accepting more help, sooner.
Thank you for sharing, Sue. 💙
Thanks for sharing, Sue. Thanks for reading the earlier drafts ;-)
I can relate to the 'I need to let go more' as an overarching lesson...more in hindsight. It's not easy to determine 'the when' we're in the journey of caregiving and moving forward...I think the lesson has 'tuned up' my gut instinct and given me more confidence in the choices I make.
Thanks for sparking that thought
Hi, I’m Kirsten. I live in Colorado and write a SS and have a podcast about navigating life with older parents. I have been “swirled” by so many questions on this caregiving journey!
@Adrian and I were having a conversation recently about the “practice of caregiving.” I think that is relevant here because it never gets easy and we never reach perfection. We’re always learning, onboarding new knowledge, new skills, new challenges to navigate. So it’s constantly a practice. Having a sympathetic and supportive community to lean on is so helpful. Actually, it’s critical to your own mental health.
I think it’s so easy to be isolated and sometimes we just need someone to say “I see you and all that you are doing to support someone who will never fully appreciate it.”💛
Kirsten, yes! Caregiving can be very isolating and finding the support we need is critical. I've been blessed with a handful of friends who've been there for me just when I needed them most. Since they either are or were caregivers themselves, the support goes both ways.
So true, Kirsten. The people we care for change as do the challenges. Plus, our life situations change as well It's a dynamic practice and community is absolutely key. It doesn't get easier because of the constant change.
Thanks Kirsten - I am so grateful for the community we're creating here on Substack and remind ourselves that we're not the only ones tackling the challenges of care.
You're right that we're always learning and refining our practice of care. And I've definitely learnt some much from you as well as the other contributors here! Appreciate @Victoria for bringing us together!
The simple act of someone noticing goes a long way.
The tiniest gesture can be so big to another person. I appreciate your words, Kirsten. Even if someone doesn’t experience what you have (yet, I always say yet bc I feel caregiving will become one’s journey one day), i think it’s ok to expect those closest to us have sympathy for us.
Thanks for sharing, Kirsten.
Hello, I'm Helen, and I was caregiver for my mom as she slid into dementia before her death several years ago. I never found caregiving "easy." As with anything, you learn as you go, but you are also traveling a constantly changing landscape. It's more about keeping your loved one safe and keeping yourself from falling apart than evaluating "easy" or "hard."
Helen, I agree that the "constantly changing landscape" of caregiving is such a challenging part of this journey. That's especially true when caring for someone with dementia, since so much can change from minute to minute.
You summed it up right there with “keeping your loved one safe and keeping yourself from falling apart.” It’s a balancing act and often the days bleed into each other as we switch to survival mode. We become so hyper vigilant about their needs we neglect ourselves. It’s imperative that we don’t. Easier said than done!
Absolutely! Then we're forced to take care of ourselves.
Well said.
Thanks for reading, and sharing, Helen. 'travelling a constantly changing landscape' is a great phrase. And definitely "keeping yourself from falling apart"!
Kirbie, my heart goes out to you. My mom was my best friend, but our relationship was complicated. It sounds like yours has bigger challenges than mine had. She’s lucky to have you, and I hope the two of you make some good memories during this time, and that it helps you heal in some way.
Hi, I’m Tina, and I care for my dad. But that’s not where my caregiving journey began. Twenty-five years ago, I moved across the country to help care for my grandpa after he was diagnosed with dementia. Responsibilities were shared that time. Then my parents were in a car accident, my dad suffered a TBI, my mom became almost paralyzed with fear, and they moved in with me. When work transferred me, they came with. Twice. Then my mom was diagnosed with late-stage terminal cancer. I took care of her. Alone. Now it’s just Dad and me, and I take care of him. I’m a great caregiver. I’ve figured out a lot in 26 years and through various caregiving needs. I have systems, processes, and tools. But caregiving never gets easier. I think it gets harder because as whatever diagnosis they have progresses, we get more run down. And it creates a relationship that neither of us were meant to have. I’ve had to do things and say things to my parents that no daughter should have to, and they shouldn’t have to receive. I would do it again. I would care for them again. Every time. But that’s not the point.
In many ways, Dad is the easiest person I’ve cared for, but that also means it’s harder for my relationships and conversations with others. He doesn’t look like he needs as much help as he does. I get a lot of blank stares when I try to explain, so I don’t. I get a lot of patronizing pats on the back when I turn down invitations. But the worst was when someone said, “You’re single. Your life is easy. You don’t have any responsibilities.” It took everything in me not to punch her in the face. That was said while my mom was sick. I don’t mean to sound like I’m complaining because I’m not. I have a good life. Not the one I would have chosen or expected, but good. There’s just a reality about caregiving that you can’t understand unless you live it.
Tina, I'm really glad you didn't punch that lady in the face since your dad needs you. :)
But I'm with you. Insensitive comments are usually from those who have no idea what it's like to love someone so much you'd do anything for them—as you did for your mom, and now your dad.
Thanks, Sue. I never would do that, but I’d be lying if I said that it didn’t cross my mind. 🤷♀️
Tina, you have had a vast caregiving journey. Your love for your family shines through.
Whatever our choices, no one can truly walk in our shoes. Nor can we judge those choices in others.
Empathy and care can still be shown even if we don't understand.
Thank you for sharing your story - you really are incredible and have shown up every step of the way. I'm sure your parents have cherished you throughout the journey as you clearly love them deeply. And as for the naysayers, let them be water off a ducks back — nothing to be gained from talking to them!
Tina, 26 years. Wow. You’re amazing — moving with your parents, twice. I feel moving is one of the hardest things to do and to do it with your parents.
I am sorry to hear someone even said that — it’s obvious that person has no idea and their own perspective of what single is or how difficult their marriage is. Either way, I am sorry you had to be in that receiving end.
Thanks, Viva. I’m don’t think she meant it the way it came across, but it was a huge assumption on her part. It’s made me more thoughtful about my own words.
Exactly! So much is said without a thought about the impact of words.
Agree to this! So important what we say.
This sounds incredibly difficult, Tina. I don't see how that insensitive person could possibly assume that your life was easy. It's so true: you can't understand caregiving until you live it.
Thank you, Helen. She said this several years ago. Ironically, she now has to care for her mother (with help from her husband and grown children), and she’s really struggling.
"I’ve had to do things and say things to my parents that no daughter should have to, and they shouldn’t have to receive. I would do it again. I would care for them again. Every time. But that’s not the point." - SO true for me too, Tina.
There are many many moments where, without walking inside our skin as us (shoes aren't enough!) , in that specific context...it feels we need numerous qualifiers to explain choices/decisions/actions to someone else, even caregivers sometimes
Whiskey Tango Foxtrot!!! - “You’re single. Your life is easy. You don’t have any responsibilities.” It took everything in me not to punch her in the face. That was said while my mom was sick."
Bravo for your restraint. That's definitely from someone who doesn't have an empathy gene...or perception. I mean 'read the room'!
Assumptions and stereotypes are the worst. We need an article/note on "the best one-liner comebacks for when..."
The only one I can think of right now, "I'm sorry, love, but whoever sold you that superpower of being all-seeing, all-knowing, got it confused with all-judgment, no empathy aka 'how to alienate everyone around you and end up alone! - Bye'
Wow, Tina. I admire your restraint regarding that comment. You are definitely not complaining. Rather, caregiving places us in an alternate reality other people cannot fathom.
Thanks, Janine.
💙
Hi, I’m Sally. I returned to the UK after 25 years overseas to look after my father. We had two years together before he passed at the end of February this year. I am still processing the whole experience.
There is so much to say about this week’s discussion. I would like to begin with a general observation regarding questions that hit us sideways or comments that lack compassion and insight. I have noticed throughout my caregiving journey that while some people mean well, there are those who might ask how we are doing as carers, but are completely incapable of understanding our experience. There have been times when after being prompted I have shared some of the realities of care, only to meet with a rebuttal of not counting my blessings enough. Over the past few months I have gained some clarity and can see these conversations for what they are. There are people who just don’t get it, and no amount of words will help them get it. They will have to walk in our shoes to understand. This is one of the reasons why I began sharing on Substack. It was a great outlet to be able to share the reality without being accused of complaining about how hard that reality is.
With regard to Kerbie’s experience, my heart aches when I read about the difference between caring for your dad and your mum. Your dad sounds so similar to my precious daddy. I feel for you when I read your words about your mum. It must be so confronting trying to care for her while having all those other feelings bubbling up at the same time. Like you said, you have no idea which version of your mum is going to turn up on any given day. All I can do is cheer you on from the sidelines, offer you words of support and prayers of comfort and tell you that you are doing an amazing job. You are doing what most people choose not to do.
"There have been times when after being prompted I have shared some of the realities of care, only to meet with a rebuttal of not counting my blessings enough."
Sally, yikes. I'm so glad you're seeing those unhelpful conversations for what they are. There are many who will either end up being caregivers down the road or needing care themselves who will be looking back on comments like those with regret.
Those ‘counting your blessings’ people aren’t caregivers. Are there blessings? Yes. Do they get overrun by hefty schedules, hallucinations, answering the same question twelve times in ten minutes, needing to make dinner while operating on fumes? Yes. They can co-exist, but one usually sort of ‘buries’ the other, at least temporarily. I think I saw the blessings of caring for my dad more after he was gone and I could look back. During, not so much. Now, definitely not so much.
Caring for someone is one of the most altruistic actions anyone can do, alongside parenting. It requires a lot of work, self awareness and sacrifice. For someone who hasn't experienced or witnessed it firsthand, these might seem very foreign. Sometimes we have to just meet people where they're at versus where we hope they would be. Today they might be dismissive and not understand, but maybe down the line when their own parent ages, they might be confronted by it and think back to the conversation you had.
You’re exactly right. They can’t understand what they haven’t experienced.
A friend of mine is a wonderfully empathetic sounding board for me, even though she didn't understand or experience it.
Now she's beginning to understand because her parents are aging with health issues. As I told her--we aren't here to fix anything. We simply hold space for one another and that is everything.
My best friend tried to understand, but I could tell that she didn’t always get it. Then her MIL moved in for a few months. Lightbulbs went off. My other best friend cares for her parents long distance. We have a lot to talk about. 🙂
That’s so true. It’s too ‘uncomfortable for them to feel.’ You summed it up in those words.
And you have created a space of public awareness regarding these issues. I appreciate you because you’ve created a space for all of us to be able to share the things we’ve experienced openly and honestly without judgment. Thank you, Victoria. 🙏
❤️💕 Thanks Sally. xo
Thanks, Sally. Exactly. I'm also hoping that our articles can shape public awareness and conversations moving forward. Whether that's through people's memoirs or our collective voices on Substack itself.
@Amy J Brown wrote a great note that I responded to about what I call 'Carer Othering' https://substack.com/@carermentor/note/c-290773262?utm_source=notes-share-action&r=a9y7d
"it’s isolating. It creates a distance between ‘them and us’. It drives disconnection, is divisive….I’ve experienced it SO many times!
For me, it’s usually not about good intentions; it’s because the painful situation we’re going through is too uncomfortable for the person to feel - they’re choosing not to sit in the pain with us (intentionally or subconsciously).
It’s othering disguised as applause, setting us up on that high-up pedestal. of sainthood or superhuman, far away from them."
Hi! I'm Adrian, living in the US West coast and I write about the invisible work of caring for an aging parent. I've been doing so for over a decade with Mum and I write about our experiences in a long-distance situation.
You're absolutely right to be frustrated by that question. I feel the word "should" can be quite loaded as it anchors around an unvalidated expectation versus letting the person being asked to describe their situation.
Some individuals don't realize that care changes over time — like anything it isn't static and I'd say that someone with multiple health conditions is more likely to worsen or have moments where acute attention is required. And nature of aging means that at each stage, the situation asks something different from you. To both your and Kirbie's situations, care also looks very different by the individual you're caring for as well as the people around you. I recently had a conversation with a friend about her mother's cancer diagnosis and how she's watched her brother and relationship with him evolve during their journey. The human and relational element goes beyond caregiver-recipient dyad.
I think what does happen is you get better at handling the situations that come your way. After some time you've been through enough to know how to respond and not be thrown into a panic. You might become tougher, perhaps a bit more detached, and are better at handling your emotions. I'm not sure if I would define that as 'easier' - but perhaps just the effect of being more resilient.
"I'm not sure if I would define that as 'easier' - but perhaps just the effect of being more resilient."
I like that, too, Adrian. Resilience can play out in so many ways. And I think that along with caregiving challenges, that changes, too. What's needed on any given day (or season) evolves—both for our loved one and for us.
You’re absolutely right and highlighted one missing piece — us. That our needs evolve too and it forms part of the caregiver-recipient dyad. I think back to when I first started caring for Mum which was a lower lift and I was single and moving around the country — to now married, settled etc. Nothing stands still!
Adrian, I do love the idea of resilient. It's a matter of find a positive way to engage and care for your parent and yourself.
Time has taught me what requires panic and what doesn’t, but the hyper vigilance keeps my nervous system in overdrive. You never know when…. I admire you for being able to manage that.
Hypervigilance is no joke. I never even realized that's what I was going through until a few months ago. For seven years (almost since moving in), my chronic sinus infections were worse - I've had every test in the book and the sinuses aren't an overriding problem. Now, I understand it's the hypervigilance. I try to do more deep breathing and I spend less time 'around' Mom. We live in the same house, but if she's in 'a mood', we spend it on different floors....part of me hates that and part of me needs it.
Agree. My hyper vigilance was making me ill. For me, journaling and meditation have been life changing, but sometimes it's easy to let those practices fall off. It's a balance.
Oh I hear you about the hyper-vigilance and the toll it takes on your nervous system. Perhaps because Mum is at a distance it is easier for me to disconnect but I imagine the proximity encourages our minds to race when we recognize patterns a mile off.
That makes sense.
Thanks Adrian! Yes, all relationships change after any diagnosis.
I think, for me, "panic' is still 0 to 100, perhaps even in a shorter time - but yes, on the outside, to someone else, I probably look tough, resilient, in control and calm. To your point, experience has taught me the processes and actions I need to take in a crisis or if a problem arises. I've gotten faster and more adept at responding in a crisis and I've MANY workarounds/creative solutions to draw on.
From one perspective, that's being more capable as a caregiver, from a personal perspective beyond being ' the carer' I need to actively reapply or find more tools to process emotions to recalibrate me as myself again - because we're the daughter/son. That's my version of resilience.
Burnout happens when I don't process/avoid my own personal experience. Like a doctor - there's only so much clinical detachment we can do as their adult child/spouse/parent-caregiver. So yep, I've become better at handling my emotions, but it's an active practice of resilience and recalibration, not an automatic outcome of repeated experiences.
Does my personal experience resonate with what you were thinking?
My thinking was more from the everyday experience of recognizing patterns and habits, and learning how to make the system work for you. A friend who cares for her grandfather that requires regular transfusions shared how she has come to recognize when he needs to visit a clinic sooner, as well as how to bring clinicians up to speed so he gets the treatment he needs. These are things that come with time and familiarity.
But you raise a point about the emotional toll and being able to manage that. It’s interesting how you recognize that burnout can stem from not processing your personal experience. You’re right that unlike clinicians who leave their work in the consultation room, we are intimately connected to our loved ones and the work of care is right there at home. And perhaps that self awareness is part of how you stay out of trouble, by recognizing how you handle stress, refresh your cup, create space for yourself, and allow yourself to disconnect. I think there are both active and passive elements to maintaining an internal equilibrium.
Would also love to hear your many workarounds/solutions!
I think there is a difference between systems that help us manage the day to day and the hyper vigilance that comes from not knowing what will happen next or when the next thing will arrive.
Thanks, Adrian. I hear you and agree. Yes good catches.
It would take hours to share my own workaround, but also these are situational, and bespoke. I'll write about them sometime but they're woven into my articles: https://www.carermentor.com/p/care-for-the-carer-a-toolbox-of-learnings