Since beginning to write a love poem a day to myself last September, I regularly write about caregiving on my substack. For the last several months, I’ve been compiling my essays and poems into a book — this is the link to the Introduction. The book isn’t finished yet — neither is my caregiving. My husband of 11 years lives with late stage COPD and Emphysema. I live with a reality I never expected.
Hello. I was excited when I found this group and forgot to actually introduce myself! I live on Gabriola, a small Gulf Island off the west Coast of Canada in the Salish Sea. We only moved here two years ago - mostly due to my husband’s health. Sea level makes it easier for him to breathe. The beauty makes it easier for me to be his caregiver. He lives with late stage COPD and Emphysema. I live with the reality of being an unexpected caregiver. Last fall, after realizing I wanted to throw his dinner tray onto his lap and run out the front door, I realized I desperately needed an attitude adjustment. The, what I call Noble Lies, of caregiving were killing my joy, my peace of mind, my love of life - and myself. I didn’t feel noble, or like being his caregiver was a sacred honouring of our love. I felt angry, bitter, resentful — this was not what I signed up for, my critter mind kept hissing. So, I started writing a love poem a day to myself. 300 plus days later those poems and essays have lead me home to myself. To him and to our marriage. Because the truth is I love my husband. I hate the disease. And I was allowing the disease to kill the love. Now I walk with compassion, care and love because in having dismantled the noble lies through writing myself home to myself, I know that to survive the mission I must live what is true for me - I give care, I do not give myself away.
Thank you for this incredible insight, Louise. Your words, and your generosity in sharing this, is priceless to me and I'm sure so many others in this community. XO
Welcome. I am so sorry you are a part of the club no one wants to join. I am glad that you have something that can address some of your husband’s symptoms. Your honesty about your situation will go a long way towards acceptance. We pick our thoughts. You are a stellar example of how we can perservere even in the face of tragedy. Sending love and light.
It’s in the community we build that strength, courage and hope grow. Thank you for the warm welcome into this club no one wanted to join - yet here we are! Sending you love and light as well. Thank you. <3
Welcome! I love your expression "noble lies" that says it all. It's great that you used the creative expression of writing to find your way to "compassion, care, and love." Nice to meet you.
Nice to meet you too Kaeli! The Noble Lies are what held me trapped in resentment, bitterness, anger… Speaking them. Acknowledging them. Seeing them for what they are has freed me to be both present within them and free of their bitterness. Hugs
Hello, Louise. I love your words and your approach to how you got your heart turned back around. So wise. So wonderful. I’m learning we can fight this every step of the way, which will only make it harder. Or we can accept what is happening and find a way to make the best of it all. I look forward to reading more from you. 👏
This " So, I started writing a love poem a day to myself. 300 plus days later those poems and essays have lead me home to myself. To him and to our marriage. Because the truth is I love my husband. I hate the disease. And I was allowing the disease to kill the love. "
Wowser what an insight and action, Louise! I need to explore more of your articles!
Your words, remind me what Pat Snyder said about Lewy Body Dementia in her YouTube series. She gave the disease a name "Louie" to personify it and separate IT from her husband.
"I give care, I do not give myself away'...that resonates with me.
Thank you Victoria -- it has been a long journey to come to the place of recognizing the essential nature of giving care without giving myself away. I'm grateful it resonates within you too!
I once said to someone, “I am getting so tired of people crossing the boundaries I refuse to set.” LOL — the naked truth of that statement took me by surprise! But it was so true! :)
Thank you Kaeli! I'm grateful to have discovered this wondrous place (Thank you Viktoria!)! Caregiving is hard when we feel alone -- community eases the burden and lightens the path.
Thank you for this vital support group. I'm a caregiver to my husband in Los Angeles, California. In 2020, he suffered a hemorrhagic (brain bleed) stroke--paralyzed on his left side, but fortunate to be able to speak. He had to start over, learning to walk and use his hands again. He has progressed. I hope to share that hope with others.
Victoria invited me here after reading a post I wrote about needing humor after so much trauma. I know we're fortunate to find some laughs. But those lighter moments are so cathartic after all the sobbing and stress.
When my husband and I met, we laughed and ate tasty food. His dry wit has kept me laughing for forty years now, along with our love of cooking and dining. That all changed after his stroke. We sobbed. We talked, focused on health, AND... food no longer brought joy. His initial medications (we realized two years later), changed his appetite. He went from 200 lbs down to a skeletal 130. He's gotten better since cutting out those medications (sleeping pill) and switching to CBD.
I wrote about that experience in a story called "Gutted," which I haven't shared yet. That title refers to the state of our house--we're so nutty in all this stress we decided to have our home remodeled. The name also applies to how I felt, emotionally.
Thanks for sharing, Michele! Yes, humor is vital to staying afloat sometimes and helps balance out the sadness we feel. I love the name of your story; it's really fitting for many of us. <3
Have a read through the comments, Allie's husband had a massive stroke, Kaeli has had a traumatic brain injury, as did Kalee's husband. You'll discover we've shared many stories already. xo
Thanks for starting this discussion, Victoria. What a godsend you must have been for your parents when they were navigating such complex issues. And what a sad sign of the times that your dad's day hospital is now a car park. One that charges a fortune too, I don't doubt!
It's so nice to feel in community with other people who are carers fro spouses, and so many different experiences within that.
So I am Rachel and I became a caregiver for my husband Den in 2019, when he was diagnosed with advanced, inoperable oesophageal cancer. My caregiver role, like many of you, has varied over the years, from giving physical help when he was tube fed and weary on chemo-radiation, to driving him to the hospital, to sitting with him in the intensive care unit, to simply providing companionship and company when he was too ill to really take part in life outside of home. All the health admin of course, and for me, most of all, advocating for him with his hospital teams.
One of our big recalibrations was me taking the lead (I'm a doctor so naturally wanted to do that) but needing to respect his need for control. There were some huge dilemmas at certain points in the journey. We are both control freaks and we found our way through this, with me giving him the facts and potential outcomes of decisions, but very much him making those decisions. I was acutely aware of the need for him to maintain control when so much of his usual abilities were being taken away from him.
The other big recalibration for us, which we have had to do a number of times, was our relationship with work. We both had to step back from work in 2022 when he had a recurrence and needed major salvage surgery. This was not a difficult decision, although I struggled with guilt at leaving my GP partnership of 20+years. But it was a no-brainer as Den needed a lot of support and we knew this would be for a long while. We did some tricky financial wranglings in order to achieve this. We treated it as temporary, holding on to hope of a return to health for him. But we lived with uncertainty as the possible outcomes were him dying, him living but with ongoing care needs, or him surviving well and regaining function. The latter outcome was the least likely by a long way. It took two years for him to recover from the surgery, but he is currently cancer free, living with some difficult consequences of his treatment which affect his energy levels, his breathing and his nutrition. And he has setbacks from time to time, requiring hospital admission, and many hospital appointments and tests due to the treatment affecting almost all of his systems. BUT he is functioning well and so much better than we ever dreamed, and in 2025 we both managed to return to work part-time as, once his physical state improved, and my carer role receded, we both had an identity crisis and needed a purpose. So we have both returned to work part time and have a lovely work-life balance which allows us to continue to navigate his healthcare, and have plenty of quality time together.
The hypervigilance never ends and he is well used to me asking him how he is every day, and I am well used to him saying he is fine even when he is not, and having to reframe my questions or just quietly watch him. Anticipatory grief still rears its head from time to time, and work provides a good distraction from this.
I am mindful of others' stories here and know that I am one of the lucky ones as he has been given a second ( probably third actually! ) chance at life, and my carer role is currently quite small.
Hi Rachel, cancer and its treatments are like dancing with a bear. I agree from my experiences with cancer caregiving that the "hypervigilance never ends," as you say. Anticipatory grief is hard. I had that, and I think for me it was a defense mechanism, as if I could prepare myself for losing the love of my life, but my mind does those things sometimes. One day, a voice came from my heart saying that I should not grieve the living, and somehow kept me out of that place for the most part, but it is a true struggle. It sounds like you and Den are really resilient and can navigate whatever changes come your way. Thank you for sharing your inspiring story here and for your supportive comments. <3
I found my anticipatory grief to be helpful, in that it allowed me to explore options and ask questions. Like, “Do you want to be burried or creamated?” and “I wrote your obituary. Do you like it? Did I leave anything out? Should I add anything?” With the help of my sister, I found a funeral home, identified the services I wanted, and confirmed the cost. But I’m 3.5 years in to this journey, and have been able to shift my focus back to gratitude, knowing my “post passing obligations” have been sorted.
That's beautiful that you could do that. My husband, Sean, refused to speak of dying because he was so focused on healing. It wasn't until near the end that he would speak of final arrangements, and by then, I'm not sure he knew what he was asking of me. I managed to do it with the help of his parents, but wow, it was difficult to transport his body back to his home state, find a plot, arrange a funeral, and 2 additional celebrations of life for him. That's why I advise people to arrange these things before they get sick, if at all possible. Congrats on focusing on gratitude. That will carry you. Each day is a blessing.
I have a friend who's husband died unexpectedly. They hadn't had those types of conversations. I am grateful I have been put "on notice." Although I would have prefered a simple email rather than a brain degeneration kind of notice.
Kaeli, I can really relate to the anticipatory grief you experienced. For a while, like you, I needed to go there and imagine it so I could mentally prepare for it, until I realised it caused more suffering than preparation.
And is there ever enough preparation for the grief? In my experience, the answer was no. But I think it is only natural to go there at least for a while.
Definitely, Kaeli. At the times when his odds looked very bad, it was necessary, to prepare myself and know how to talk to the kids about it. We always said, hope for the best, prepare for the worst.
Yes, Rachel, that's understandable. I had not realized how alone I felt in all these feelings until participating in this discussion. It's good to be among others who understand. Thanks, Victoria!
Kaeli, I am quite certain the answer IS no in many respects. It's not like Mr. J is going to die and I will say, "Well, I'm fine because I've done my grieving." But it is nice to take care of some housekeeping items.
Yes, Anne, of course. I think it's a great thing to take care of the housekeeping items. I was replying to Rachel about anticipatory grief. I found myself grieving my husband, Sean, while he was still with me, which was something I had to move myself out of over time.
I, too, grieved in advance. sometimes I still do. But that first year after Mr. J’s diagnosis, I felt the pain of grief every hour of every day. I could barely breathe. It took me a long time to get to a spot of (mostly) peace with enjoying today. Of course, it helps that Mr. J has improved exponentially in the years since the diagnosis.
Many thanks for sharing your experience here, Rachel. I've said this before but I really feel for you, knowing what you know medically but relinquishing the 'Q&A' control to Den. When someone you love is suffering it's hard not to jump in. Enabling their agency and esp in my case supporting them to sustain their dignity aren't skills we pick up at school!
I think the fact that you say 'the hypervigilance never ends' underscores the fact that while things have changed, your carer role is still ever-present, it's perhaps morphed as a new constant that flares periodically...I didn't mean to use medical-like terms!
I know your big empathetic gene makes you 'mindful of others' experiences - but as many people have said to me - "lets not do comparative suffering" (Comparative suffering is the psychological phenomenon of measuring your pain against others - it can invalidate your own struggles!). It's how experiences are muted in favour of another.
Thank you for sharing all these details. I was impressed at how you returned to NHS work - I've sure the patients are relieved you're there!.
and I should add, as despite rambling on so long, I did not address Victoria's question about recalibrating, when we were ready to return to work, our returns really varied - for him, when he felt physically well enough, return was easy as his old boss had something just right for him. My return was more complicated as I needed to find the right practice and jump through a few NHS hoops. And he was ready before me, despite being the actual patient. I could only start to heal myself once I knew he was OK, and then it was my mindset that needed some work. I think that more than anything showed me the toll that caregiving had taken.
That's a really good point, Rachel. Caregivers have to think for 2 people or more at one time. I can imagine that our caregivers' minds are focused on others' needs first, before our own. It's no wonder Den was 'ready' first...I'm sure you enabled his return to work too.
Even on respite I needed to check my parents were ok before I could enjoy the day. We're conditioned to make sure they're ok first. I'm okay with that because I knew I could do things more fully knowing they were ok...Peace of mind is tough for us, I think.
I hope your managing with the work (we all know how overworked doctors are in the NHS) and that Den is enjoying being back at work too?
Rachel I can so relate to the pros and cons of having healthcare expertise. I was a nurse practitioner in oncology/palliative care and I once said to my daughter “I wish I could download what I know to a hard drive and then misplace it.”
Thank you to everyone engaging with this post and sharing their own stories. It's evident that each of us has such a bespoke experience as a caregiver to a spouse yet the common ground is tangible. To feel you all stand on it with me brings immense strength. I hope you can draw on it, knowing this group "gets it." We are not perfect caregivers. We are all stumbling down an unchartered road. But I see you all. You're among friends. ❤️
Thank you Victoria for all that you do to bring awareness.
Hi everyone, I’m Allie. I live in Gloucester, Massachusetts, and I’ve been caring for my husband, Glenn, for a 41/2 years now. Glenn suffered a massive stroke that left him paralyzed on the right side and unable to communicate due to aphasia.
When looking at the prompt, I found myself gently pushing back on the word "recalibration." To me, that sounds a bit too tidy and mechanical for what we went through. What we experienced wasn't an evolution or a minor adjustment; it was a seismic shift.
Before Glenn’s medical crisis, so much of my life was anchored in a completely different kind of energy—running a restaurant and moving through the world with a particular sense of autonomy. When the crisis hit, the foundational ground of our partnership moved entirely. It completely disrupted our roles, our communication, and the unwritten contract of our marriage. It’s the heavy, daily work of learning how to stand on entirely new, unfamiliar terrain, carrying a profound amount of the daily weight on your own while the old version of your shared life has fundamentally altered.
Things were rocky before the stroke and are worse now because there is no way to get through to him. I had to become Glenn's guardian and conservator which I never knew what kind of special nightmare that could be (I advise everyone to go get you POA before it's too late!). After his stroke I had to learn take care of every single thing including Glenn. I had to manage and ultimately sell our restaurant. Our home was a fixer upper. The pellet stoves need their weekly cleaning in the winter. In the summer I'm mowing the way too large yard. To squeeze by financially I became a part time waitress. This is not how I imagined my empty nest years.
You are so right about advance directives and clear guidance for DPOA. I have written about this a lot in the setting of dementia. Even though my husband had a dementia specific addendum to his advance directives it was excruciating for me to let him go. It’s easier looking back to say of course that was the right thing, but people that haven’t walked in our shoes can’t know the mixed bag of emotions!
That does sound like a seismic shift, Allie. I appreciate your honesty and how well you have described the relational stuff in so few words! It's very relatable.
Hi Allie, I understand that shift to having to do everything. We had a fixer-upper, too, and were working on it the day before my husband had his strokes.10 weeks later, I brought him home, and wow, how things had changed. I agree with you on getting a POA and making advance directives before it becomes necessary. I am sorry you have to go through being his conservator. I can only imagine how hard that must be. Sending hugs.
Feel free to disagree on anything - it's why I believe having space to share personal experiences is so important. There is no 'right' or 'perfect' definition of caregiving. I've found some words can really trigger a reaction out of me...like when someone cliché calls carers 'heroes' (uggh).
I hear the hard physical and emotional labour you're experiencing, and the weight of it all.
I'll keep reading your articles and I hope you'll keep connecting with others who get it, here/elsewhere. You're not alone. I see you and all you're doing!
Hi! Thank you Victoria. its not really a disagreement! In my life I just feel like I needed a stronger word. I am sure that word is perfect for others.
Carol, I am so sorry for what you’re going through. In all these stories I feel like I find pieces of my life in them. Feeling like you can’t make an emotional breakthrough with your mate any longer is painful. The silent stares as you express yourself - you almost feel like you’re speaking to a wall. That is so hard. Then the fear of who will take care of me when you need it can be heavy too. Keep trusting and keep your faith strong. 💛
I’m Carol and I live in southwestern Pennsylvania. My husband was diagnosed with Alzheimer’s a few years ago, but it was a year and a half after I had started noticing and keeping a journal. His neurologists keep saying he does not have Parkinson’s, but he has no use of his right hand. So he can’t write, has trouble getting dressed, has trouble with eating utensils, as well as losing his words. Sometimes he knows he can’t do things, and sometimes he is oblivious.
I am always anxious that he will go out and start using a dangerous tool. (He used to be a contractor; we have tools!) I’m just trying to trust and keep my faith strong.
It’s so hard to have our conversations limited these days. He stares at me blankly when he can’t get what I’ve said; I stare at him blankly as I try to decipher his word salad.
My counselor just asked me yesterday what percentage was I his wife and what percentage was I his nurse. I said 80-20.
Thank you Victoria for starting this. And thank you all for telling your stories. There was something I identified with in all of them. (I’m supposed to have a knee replacement—how will that ever happen??)
My guy was a major woodworker and outdoorsy guy. We had a near miss with the chainsaw and a serious talk with his dementia doctor and she literally said no chainsaw, table saw, other big stuff but he could do electric hand tools and skillsaw with safety bar. Plus we put a camera in the shop. He was unhappy of course but I just repeated “doctors orders.”
Thank you for sharing, Carol. I am sorry things are so hard. I have had spells where Den has been confused and had speech issues, so have had glimpses only of this aspect of caregiving. When it is permanent and deteriorating, it's a whole different ball game and my heart goes out to you. As you say, when physical functioning is impaired, but your loved one lacks insight, the hypervigilance is on a whole other level. I remember finding my husband in the garden groaning having fallen off a ladder he never should have been up, in his weakened state after treatment - thankfully he fell onto grass and was bruised but relatively unscathed! I felt more like his mother than his wife or nurse that day, telling him off!
Hi Carol, I'm so glad you're feeling the resonance here. It's what I hope for in these discussions.
I'm sorry your husband can't use his right hand. My Dad's hands were really gnarled from the rheumatoid arthritis, so I helped him dress, personal hygiene etc. He used those adapted eating utensils for a while.
I cringed for you when I read 'power tools'. Even with my Dad's instability and gnarled hands, I was sometimes worried he'd 'get up to mischief'
I'm glad you have a counsellor's support. I've had mixed experiences, but will keep exploring support.
I hope you figure out a plan for your knee replacement and support for your husband - if you'd like ideas/tips just say, I'm sure we can all share thoughts or resource links...I know a few people who've had them done. You're definitely not alone!!
Hi Carol, my husband had a lot of power tools and used to be a carpenter. I understand your concern. I hope that you can find some community support when you have your knee replacement.
Carol, I try to have faith in medical professionals but I know how hard that can be when you're seeing symptoms that don't align with a diagnosis. Have you seen a movement disorder specialist? That area of specialization in neurology focuses on diagnoses like Parkinson's. I learned early on in this journey that not all neurologists are created equal.
No. Especially when they have just added on an infusion center for the new Alzheimer’s drugs!
He was on the standard Parkinson’s medications for a few months and they did not help. But thanks for your suggestion! Actually, I think we’re done with neurologists.
Hey Victoria, your use of the word "recalibration" feels much more accurate than simply "adjustment" because it acknowledges how deeply illness can shift the rhythms, roles, and expectations within a relationship. While I wasn't caring for a spouse, I experienced this with my mother after her quadruple bypass surgery and later when she broke her spine. Suddenly there were new responsibilities, new worries, and a new awareness of how quickly familiar roles can change. The practical tasks were one part of it, but the emotional recalibration was often the greater challenge. Thank you for creating a space where people can talk honestly about those changes and know they're not navigating them alone.
Karen, I like that you pulled out emotional recalibration as a thing by itself. For me it felt like my emotions were all over the place. I needed to focus on how I was feeling and put a name to it.
Like the old radio where in between channels you got static but when you landed on a station you could identify it as country music or rock n roll. I was withdrawing. I had to name my depression before I could ask my provider to increase my antidepressant.
When you are emotionally out of whack everything is harder.
I understand and respect that. And I completely understand the static. I have been in the depths of despair a couple of times and it is hard to recalibrate. Glad you got it figured out and I do hope you are doing well.
Exactly, Karen. I'm so sorry your mother went through that tough surgery and then suffered a break in her spine. I can imagine the kind of care she needed. Yes the emotional recalibrations...constantly are grinding.
Hi everyone, I'm Kaeli Hansen and have been a caregiver for most of my adult life. My beloved first husband died after a courageous and grueling battle with stage IV throat cancer. Most recently, I have been the primary caregiver for my second husband, Kurt, for the past four years. We are currently living in Cuenca, Ecuador. I can relate to so many of the comments in this discussion! Thank you all for sharing with me.
Having had a TBI myself during my first husband's cancer was really difficult, and after his death, I met Kurt, who became my caregiver. Then suddenly, he had 5 strokes, and everything changed overnight. He had been a very independent person, and as many other caregivers have mentioned, it was hard to shift from wife and "caree", to a full-time caregiver who needed to make "suggestions" in order to help him stay safe. It is still a struggle to handle this diplomatically, and there are times when I am more patient than others (like when I've had adequate sleep).
I will share the article I wrote on caregiver role reversal. I know I'm not the only disabled person here caring for a spouse.
Raise your hand if you struggle to balance your fear and anxiety over what might happen when your spouse takes risks (for us, the biggest one is getting up or walking unaided). That's what forums like this are here for, and I want to thank Victoria for bringing us all together so that we can support one another on our journeys.
Kaeli, your story is both heart-breaking and inspiring. I can’t imagine how challenging and difficult your journey is, yet, here you are, sharing and supporting others in their journey. That is true courage, heart and grace in action. Thank you.
Thanks for your encouragement. Giving back is my way of paying it forward. Having had such wonderful people in my life had been a blessing. It is my way of saying thank you to Spirit.
Taking risks versus keeping them safe is such a conundrum. One of my favorite memories is my hubby loved the motorized cart at Walmart. One time we got separated and one of our friends texted me “Stu is in dairy.” 😆😂
Mr. J goes to the store to buy. I go to the store to shop. When we go to the store together, he is off to the races while I am lingering over fruit and vegetables. When I can’t find him, I call out “Marco!” Our grocery store is small enough that he can hear me where ever he is. He can still remember to respond, “Pollo,” for which I am eternally grateful.
Awww, romance in the aisles - I can imagine the film reel now. That, or perhaps another scenario of a lot of kids causing chaos and responding to you.🤣
Thanks for sharing, Kaeli. I can't imagine how I would have managed if I had care needs myself before my husband became ill. The emotional adjustment to that must have been enormous. I do fear becoming ill myself more nowadays and wonder who would look after me. Thanks for sharing your article which was inspiring - your manual and the realisation about the need for contingency planning is something I advise my patients. I think just having a plan in place helps. I can imagine, when you wrote your manual, you were probably quite chocked at how much you were doing - we just get on with it, don't we but maybe we should also give ourselves a pat on the back from time to time!
Hi Rachel, yes, we stay calm and carry on! It can be overwhelming to look at the manual, so I try to stay in the moment and balance it with pacing my energy needs. It's quite a balancing act. Getting help with caregiving before you become ill is ideal. That way, you can get proper rest and exercise to maintain your health, and you also have caregivers who are familiar with your loved one's needs in an emergency. We don't always live in an ideal world, though, so we get through the best way possible. Improvisation is key! ;-)
yes and I think having some flexibility can be the key to resilience. We always said prepare for the worst, hope for the best. And living in the moment helps you notice the joys that suddenley appear. It sounds like you are well practiced at that.
You're welcome, Kaeli. Thanks for sharing your fear and anxiety. Given your recent travels in Ecuador, I now have a deeper appreciation for what you've been through!
I'm Steve. I'm caring for my spouse who was diagnosed with multiple myeloma in 2021. I live in southwest Idaho.
Our marriage was on the rocks and headed for divorce. I agreed to help her after the diagnosis. It was the right thing to do.
My spouse is an alcoholic and that has complicated the situation. She was often difficult to deal with and that has not changed. Dementia has started as well. That may be genetic or related to the alcoholism - both, I think - not that it matters now.
The marriage has completely deteriorated now. I view myself strictly as her caregiver, and not as her spouse or partner. It is difficult to face the day sometimes.
Steve, I am so sorry. It's hard enough to be a caregiver to a spouse that you love. Your situation sounds like an extreme challenge. You are making an incredible sacrifice. I hope you find some support here on Substack. We are here to support you.
As a former oncology nurse I saw this a few times. Single most compassionate thing I can imagine. I agree, give yourself grace. Don’t be afraid to set limits on what you are able to do.
Thank you for sharing, Steve - that sounds very tough. Caring for someone when the equation has not been balanced beforehand comes with a whole different set of recalibrations. I am full of respect that you have found a way to do this. I hope you are finding ways to care for yourself as well and have some boundaries in place, and support for you.
I hear caregivers in an online support group say that they love their spouses. Sometimes I want to say, "That's not true in every situation". But I don't - no need to rain on their parade. It's hard for everyone in that situation.
Hi Steve, that is such a hard place to be in. To loose pieces of your spouse and then one day, wake up and realize the relationship that should have been is not. To feel like your there for them to only care. It can make you feel lonely and trapped. But the care we give matters. And it shows our devotion no matter what. Hang in there.
I'm sorry you're in such a difficult and complex caregiving situation. I echo the comments of Carol and Pam.
I just wanted to add that your feelings, welfare and choices - whatever those may look like to you, are just as important as those of your spouse. I hope you both receive the support you need so that the days become easier for you.
Steve, it would be so difficult to care for someone when your relationship is this complex--it's hard enough when you love and feel connected to the person you're caring for. I hope you're giving yourself a lot of grace for doing the right thing in this moment. (By the way, I'm originally from Boise!)
I am so sorry for this, Steve. Sometimes I have a hard time remembering how much I love my husband and we had a good marriage. It would be terribly difficult to care for someone who you don’t love. Peace to you today.
My husband and I are both cancer survivors. I had Hodgkin's Lymphoma at age 15, and he had a complete resection of a brain tumor 33 years ago. We are both cancer free, but he now has cognitive disabilities and also had a stroke several years ago.
I don't like to think of myself as Steven's caretaker, but I've definitely taken on everything in our household that requires time management and executive function. I handle our financial affairs - bills and taxes - keep our schedule of doctor's appointments, etc., plan our meals and organize our travel. I try to keep holding Steven accountable for the things he can do, but sometimes it's easier just to do something than to keep reminding him. He is declining at a faster rate than I am, so mostly I'm planning for a future where I am even more of a caretaker than I am now.
The once equal distribution of responsibilities to one of what used to be two people feels like dumped on especially when you’re exhausted. I remember having BIG resentment when taking the trash out became my job. By no means a horribly difficult physical burden but somehow it felt that way. I cried over it.
Yes, Anna, that can be difficult, and it's not the major events like the ICU and rehab stay that I cried over; it was the ongoing responsibility of small things like the bills or trash, plus everything else. That's when the overwhelm really hit for me.
Absolutely exhausting. I sometimes travel for work, and I sleep so much better when I am not lying next to Mr. J, constantly concerned that he may get up and wander. Even though that hasn't ever happened. . . yet.
Helen, it can be hard to manage things - to take over all the household responsibilities. I remember when my husband took ill after his bacterial meningitis, and lost his vision, I had to learn how to take over all the household responsibilities - I didn’t know what a routing number was on a check, because for years he managed all of it - then BOOM - I had to learn how to manage it all. Hang in there.
Hi Helen. I feel for you. It's a lot! I hope that in that planning, there's some practical support from your surrounding community, or paid support. If you haven't already heard about them, you may want to look into Careyaya https://www.careyaya.org/ student caregivers, I was intrigued by their services. I don't have direct experience I just saw an interview Neal K Shah (on Substack) did with Helene Epstein.
I'm Patricia, and I live in Winnipeg, Manitoba (Canada). Becoming my husband's caregiver was definitely a process, although the speed and tempo of that evolution felt like it really picked up with his diagnosis in January 2025.
Doug was diagnosed with Corticobasal Degeneration, Frontotemporal Dementia and Primary Progressive Aphasia. (The latter two conditions are the same ones that Bruce Willis lives with.) My husband also has anosognosia, meaning he lacks insight and awareness of his disease. Both a blessing and a curse. The neurologist told me we might have five years.
Living with the constant changes in my husband's behaviour, cognition, executive function and abilities with language mean that recalibration is a constant. Every day I am on the alert, trying to respond with understanding and compassion and to maximize our quality of life in whatever time we have left.
Our marriage was never perfect, but it was good. A gift to us both for more than 40 years. Honouring Doug, caring for him to the best of my ability, while also trying to care well for myself so that I can see him through to the end is the least I can do.
Faith has always been an important part of our life together, and with this diagnosis I realized the next few years are really where "the rubber will meet the road." If my faith is worth anything at all, it will get me through. So I search for joy and try to make sense of the crazy while writing about our lives at: https://searchingforthewords.substack.com/
Hi Patricia. I know my faith helped us so much when Sean was dying. We prayed together every day. And in the end, it was a prayer that he left this world on, so I was grateful. Thanks for sharing your experience.
Victoria, I just joined the group as the caregiver for my husband, who suffered a hemorrhagic stroke. Thank you for sharing. I came to this group after seeing that I'm not alone in needing joy after all the exhausting trauma of caregiving.
My husband is from Winnipeg, Manitoba. He moved to LA, where I met him, after playing bass with Burton Cummings, also from Winnipeg. Crazy how I meet so many people from my husband's hometown. I helped my friend at a vintage sale. I met a few dozen people. Two of them came from Winnipeg (they didn't know each other). We love and miss Winnipeg. My husband's brother and his lovely family are there. His brother has severe alzheimer's, so his wife is doing the work of a superhero, caring for him. I feel so helpless when I get her phone calls. Anyway, sorry to ramble.
Michele, I’m a little late to the party (because I’ve been dealing with some grieving), but I would like to welcome you to our club that nobody wants to join. I’m glad you are here. I’ve been at Substack for a few years, and having people who know your pain makes a difference. My Mr. J has been diagnosed with a degenerative brain disease. You are right, caregiving is it’s own kind of trauma.
Thanks for sharing - so glad you have found ways to care for yourself. There have been times I have felt guilt about my own needs, which I know is common among carers. Looking forward to reading your substack.
Thank you, Rachel/Dr. Molloy - for your kind words and also for subscribing. You’ve been in the trenches with your husband - and I am certain that experience gives you insights that make you an extremely caring doctor. A gift to your patients. And if sounds like you and Steve have found beautiful new way of living. I wish for you that it continues for many years to come.
Oh boy. Your story takes me right to the heart of our experience. The struggle to do the best you can to honor your husband while caring for yourself. The days can be long and exhausting. For me looking back now I can share that I am grateful that I was able to persevere. I celebrate my resilience and love for him. I also have a commitment to self care like never before. Hugz.
Thanks, Anna. I'm so glad that you came through with a commitment to self-care. That's awesome. And yes, we always carry our love for them even when they are no longer here physically. Caregiving is complicated but can be quite rewarding. Hugs and waves of love.
I try to walk outside 30 minutes a day (although when it is below freezing, I am more inclined to use my rower in the house). I do it because 30 minutes of nothing (or, more likely, a juicy podcast) feeds my soul AND is good for me! #resilience.
Thanks, Patricia. Yes, I understand that level of alertness and the anosognosia. I hear you. I appreciate how your faith offers you comfort and strength. Warm wishes.
I’m Marcilina Martel, and I live in Orange County, California.
I’ve spent more than 30 years caring for my husband.
It began long before I ever called myself a caregiver. At 27, he was diagnosed with rheumatoid arthritis. We adjusted, as couples do. I picked up a little here, carried a little there, and together we kept moving forward.
Over time, those small adjustments
became a way of life. Our world slowly recalibrated around his illness and the limitations it brought.
Then, years later, bacterial meningitis changed everything. The life we knew before it disappeared, and a new chapter began. The new chapter that brought a whole new level of care that I would have never imagined- and maybe that was the major shift for me.
It’s hard to explain how you quickly adapt to health crisis- it’s hard to watch your life always be a part of sickness and care. It’s hard to see your children be affected by it. And at least for me, I feel like there isn’t one specific moment or shift that made me realize that my life was changing. I always just managed, quickly adjusted - I just did it naturally because honestly that is just the way our marriage started and maybe it was how I coped. Care was always a part of it from the start as sad as that may sound.
I like the idea of “adjusting” over time. Certainly true for us. My husband had a neurodegenerative diagnosis and then an Alzheimer’s diagnosis 10 years later. The adjusting was both incremental and sometimes acute. I think adjusting overtime builds resilience and resilience is our lifeboat as caregivers.
My husband has had a rare neurological disorder slowly robbing his mobility for years, then he was diagnosed with vascular dementia. It has been a very incremental ongoing adjustment which has certainly built my resilience , given me time to learn new skills and I would also say increased my empathy and patience. So most of the time I am doing fine.
Though that state of acceptance can be tested when I remember that there was life before this. That I was part of a busy couple doing things together. That I haven’t always been a caregiver.
You've pinpointed a really common thread many of us experience - how suddenly an illness event can change everything. And the stages you go through, 'just adapting'. Sometimes it's only later, when you have time to reflect, that you realise just how big it has all been.
Geez, Marcilina, 27 is a very young age for the RA diagnosis. Dad's was late 50s I think. Thank you for sharing. It sounds like you had constant recalibrations before the meningitis.
A caregiver's agility becomes an ingrained skill over time, I think. xo
Dear Team - please can you join me in replying to different comments to spread the empathy. Thanks!
When I try to respond it says “this data is not in the right format? “
A few folks have had a similar issue try:
- use the desktop version on a computer or laptop or
- go to your publication and then click through - sometimes you get logged out
https://louisegallagher.substack.com/p/what-happens-when-caregiving-becomes
Since beginning to write a love poem a day to myself last September, I regularly write about caregiving on my substack. For the last several months, I’ve been compiling my essays and poems into a book — this is the link to the Introduction. The book isn’t finished yet — neither is my caregiving. My husband of 11 years lives with late stage COPD and Emphysema. I live with a reality I never expected.
Thank you
This is in response to one of my comments about your poems being your way of 'processing'.
Hello. I was excited when I found this group and forgot to actually introduce myself! I live on Gabriola, a small Gulf Island off the west Coast of Canada in the Salish Sea. We only moved here two years ago - mostly due to my husband’s health. Sea level makes it easier for him to breathe. The beauty makes it easier for me to be his caregiver. He lives with late stage COPD and Emphysema. I live with the reality of being an unexpected caregiver. Last fall, after realizing I wanted to throw his dinner tray onto his lap and run out the front door, I realized I desperately needed an attitude adjustment. The, what I call Noble Lies, of caregiving were killing my joy, my peace of mind, my love of life - and myself. I didn’t feel noble, or like being his caregiver was a sacred honouring of our love. I felt angry, bitter, resentful — this was not what I signed up for, my critter mind kept hissing. So, I started writing a love poem a day to myself. 300 plus days later those poems and essays have lead me home to myself. To him and to our marriage. Because the truth is I love my husband. I hate the disease. And I was allowing the disease to kill the love. Now I walk with compassion, care and love because in having dismantled the noble lies through writing myself home to myself, I know that to survive the mission I must live what is true for me - I give care, I do not give myself away.
Thank you for this incredible insight, Louise. Your words, and your generosity in sharing this, is priceless to me and I'm sure so many others in this community. XO
Thank you for your kind and encouraging words Liza! I am grateful my word create value for you! Hugs.
Welcome. I am so sorry you are a part of the club no one wants to join. I am glad that you have something that can address some of your husband’s symptoms. Your honesty about your situation will go a long way towards acceptance. We pick our thoughts. You are a stellar example of how we can perservere even in the face of tragedy. Sending love and light.
It’s in the community we build that strength, courage and hope grow. Thank you for the warm welcome into this club no one wanted to join - yet here we are! Sending you love and light as well. Thank you. <3
Love this.
Welcome! I love your expression "noble lies" that says it all. It's great that you used the creative expression of writing to find your way to "compassion, care, and love." Nice to meet you.
Nice to meet you too Kaeli! The Noble Lies are what held me trapped in resentment, bitterness, anger… Speaking them. Acknowledging them. Seeing them for what they are has freed me to be both present within them and free of their bitterness. Hugs
That's quite a transformation, and I thank you for sharing it with us all, including me. ;-) Reframing is really powerful!
Hello, Louise. I love your words and your approach to how you got your heart turned back around. So wise. So wonderful. I’m learning we can fight this every step of the way, which will only make it harder. Or we can accept what is happening and find a way to make the best of it all. I look forward to reading more from you. 👏
I hear you re 'the fight' -- it's the suppression of ALL my emotions, thoughts and feelings that I deem 'bad' that causes me the most harm.
This " So, I started writing a love poem a day to myself. 300 plus days later those poems and essays have lead me home to myself. To him and to our marriage. Because the truth is I love my husband. I hate the disease. And I was allowing the disease to kill the love. "
Wowser what an insight and action, Louise! I need to explore more of your articles!
Your words, remind me what Pat Snyder said about Lewy Body Dementia in her YouTube series. She gave the disease a name "Louie" to personify it and separate IT from her husband.
"I give care, I do not give myself away'...that resonates with me.
Thank you Victoria -- it has been a long journey to come to the place of recognizing the essential nature of giving care without giving myself away. I'm grateful it resonates within you too!
Setting a healthy boundary, knowing that it will help both of you in the long run, is by far the best thing you can do. Good for you!
I once said to someone, “I am getting so tired of people crossing the boundaries I refuse to set.” LOL — the naked truth of that statement took me by surprise! But it was so true! :)
Gosh that resonates!! 😂😂
All these years later - it still resonates for me Rachel -- and reminds me to hold my boundaries -- they make me safe for everyone!
🤣
This is hilarious! I am stealing this (imitation is the highest form of flattery, I assure you!). Well played, Louise. Well played.
You’re welcome🤣🤣🤣
🤣
So true Anne -- and so difficult sometimes to hold in place! :)
Oh, I know! We can be perfect every day. But we can continue to strive towards our goal!
I have given up striving for perfection and instead, am choosing to be authentically me. It has definitely relieved me of a lot of stress! :) <3
I am excited to join the conversation. Thank you for the invitation!
So glad you are here!!!
Thank you Kaeli! I'm grateful to have discovered this wondrous place (Thank you Viktoria!)! Caregiving is hard when we feel alone -- community eases the burden and lightens the path.
You're very welcome, Louise! Glad to see you connecting. xo
agreed! It's lovely to have this space for support. Victoria is doing us all a service. <3
Hello,
Thank you for this vital support group. I'm a caregiver to my husband in Los Angeles, California. In 2020, he suffered a hemorrhagic (brain bleed) stroke--paralyzed on his left side, but fortunate to be able to speak. He had to start over, learning to walk and use his hands again. He has progressed. I hope to share that hope with others.
Victoria invited me here after reading a post I wrote about needing humor after so much trauma. I know we're fortunate to find some laughs. But those lighter moments are so cathartic after all the sobbing and stress.
I've shared that experience here: https://substack.com/home/post/p-175046322
When my husband and I met, we laughed and ate tasty food. His dry wit has kept me laughing for forty years now, along with our love of cooking and dining. That all changed after his stroke. We sobbed. We talked, focused on health, AND... food no longer brought joy. His initial medications (we realized two years later), changed his appetite. He went from 200 lbs down to a skeletal 130. He's gotten better since cutting out those medications (sleeping pill) and switching to CBD.
I wrote about that experience in a story called "Gutted," which I haven't shared yet. That title refers to the state of our house--we're so nutty in all this stress we decided to have our home remodeled. The name also applies to how I felt, emotionally.
Thanks for sharing, Michele! Yes, humor is vital to staying afloat sometimes and helps balance out the sadness we feel. I love the name of your story; it's really fitting for many of us. <3
YAY! Glad you're here, Michele.
Have a read through the comments, Allie's husband had a massive stroke, Kaeli has had a traumatic brain injury, as did Kalee's husband. You'll discover we've shared many stories already. xo
Thanks for starting this discussion, Victoria. What a godsend you must have been for your parents when they were navigating such complex issues. And what a sad sign of the times that your dad's day hospital is now a car park. One that charges a fortune too, I don't doubt!
It's so nice to feel in community with other people who are carers fro spouses, and so many different experiences within that.
So I am Rachel and I became a caregiver for my husband Den in 2019, when he was diagnosed with advanced, inoperable oesophageal cancer. My caregiver role, like many of you, has varied over the years, from giving physical help when he was tube fed and weary on chemo-radiation, to driving him to the hospital, to sitting with him in the intensive care unit, to simply providing companionship and company when he was too ill to really take part in life outside of home. All the health admin of course, and for me, most of all, advocating for him with his hospital teams.
One of our big recalibrations was me taking the lead (I'm a doctor so naturally wanted to do that) but needing to respect his need for control. There were some huge dilemmas at certain points in the journey. We are both control freaks and we found our way through this, with me giving him the facts and potential outcomes of decisions, but very much him making those decisions. I was acutely aware of the need for him to maintain control when so much of his usual abilities were being taken away from him.
The other big recalibration for us, which we have had to do a number of times, was our relationship with work. We both had to step back from work in 2022 when he had a recurrence and needed major salvage surgery. This was not a difficult decision, although I struggled with guilt at leaving my GP partnership of 20+years. But it was a no-brainer as Den needed a lot of support and we knew this would be for a long while. We did some tricky financial wranglings in order to achieve this. We treated it as temporary, holding on to hope of a return to health for him. But we lived with uncertainty as the possible outcomes were him dying, him living but with ongoing care needs, or him surviving well and regaining function. The latter outcome was the least likely by a long way. It took two years for him to recover from the surgery, but he is currently cancer free, living with some difficult consequences of his treatment which affect his energy levels, his breathing and his nutrition. And he has setbacks from time to time, requiring hospital admission, and many hospital appointments and tests due to the treatment affecting almost all of his systems. BUT he is functioning well and so much better than we ever dreamed, and in 2025 we both managed to return to work part-time as, once his physical state improved, and my carer role receded, we both had an identity crisis and needed a purpose. So we have both returned to work part time and have a lovely work-life balance which allows us to continue to navigate his healthcare, and have plenty of quality time together.
The hypervigilance never ends and he is well used to me asking him how he is every day, and I am well used to him saying he is fine even when he is not, and having to reframe my questions or just quietly watch him. Anticipatory grief still rears its head from time to time, and work provides a good distraction from this.
I am mindful of others' stories here and know that I am one of the lucky ones as he has been given a second ( probably third actually! ) chance at life, and my carer role is currently quite small.
Hi Rachel, cancer and its treatments are like dancing with a bear. I agree from my experiences with cancer caregiving that the "hypervigilance never ends," as you say. Anticipatory grief is hard. I had that, and I think for me it was a defense mechanism, as if I could prepare myself for losing the love of my life, but my mind does those things sometimes. One day, a voice came from my heart saying that I should not grieve the living, and somehow kept me out of that place for the most part, but it is a true struggle. It sounds like you and Den are really resilient and can navigate whatever changes come your way. Thank you for sharing your inspiring story here and for your supportive comments. <3
I found my anticipatory grief to be helpful, in that it allowed me to explore options and ask questions. Like, “Do you want to be burried or creamated?” and “I wrote your obituary. Do you like it? Did I leave anything out? Should I add anything?” With the help of my sister, I found a funeral home, identified the services I wanted, and confirmed the cost. But I’m 3.5 years in to this journey, and have been able to shift my focus back to gratitude, knowing my “post passing obligations” have been sorted.
That's beautiful that you could do that. My husband, Sean, refused to speak of dying because he was so focused on healing. It wasn't until near the end that he would speak of final arrangements, and by then, I'm not sure he knew what he was asking of me. I managed to do it with the help of his parents, but wow, it was difficult to transport his body back to his home state, find a plot, arrange a funeral, and 2 additional celebrations of life for him. That's why I advise people to arrange these things before they get sick, if at all possible. Congrats on focusing on gratitude. That will carry you. Each day is a blessing.
I have a friend who's husband died unexpectedly. They hadn't had those types of conversations. I am grateful I have been put "on notice." Although I would have prefered a simple email rather than a brain degeneration kind of notice.
I'm so sorry for your friend Anne and for having a jolt like that diagnosis as a push to "take care of business" ahead of time. Sending hugs. <3
Kaeli, I can really relate to the anticipatory grief you experienced. For a while, like you, I needed to go there and imagine it so I could mentally prepare for it, until I realised it caused more suffering than preparation.
And is there ever enough preparation for the grief? In my experience, the answer was no. But I think it is only natural to go there at least for a while.
Definitely, Kaeli. At the times when his odds looked very bad, it was necessary, to prepare myself and know how to talk to the kids about it. We always said, hope for the best, prepare for the worst.
Yes, Rachel, that's understandable. I had not realized how alone I felt in all these feelings until participating in this discussion. It's good to be among others who understand. Thanks, Victoria!
Kaeli, I am quite certain the answer IS no in many respects. It's not like Mr. J is going to die and I will say, "Well, I'm fine because I've done my grieving." But it is nice to take care of some housekeeping items.
Yes, Anne, of course. I think it's a great thing to take care of the housekeeping items. I was replying to Rachel about anticipatory grief. I found myself grieving my husband, Sean, while he was still with me, which was something I had to move myself out of over time.
I, too, grieved in advance. sometimes I still do. But that first year after Mr. J’s diagnosis, I felt the pain of grief every hour of every day. I could barely breathe. It took me a long time to get to a spot of (mostly) peace with enjoying today. Of course, it helps that Mr. J has improved exponentially in the years since the diagnosis.
Many thanks for sharing your experience here, Rachel. I've said this before but I really feel for you, knowing what you know medically but relinquishing the 'Q&A' control to Den. When someone you love is suffering it's hard not to jump in. Enabling their agency and esp in my case supporting them to sustain their dignity aren't skills we pick up at school!
I think the fact that you say 'the hypervigilance never ends' underscores the fact that while things have changed, your carer role is still ever-present, it's perhaps morphed as a new constant that flares periodically...I didn't mean to use medical-like terms!
I know your big empathetic gene makes you 'mindful of others' experiences - but as many people have said to me - "lets not do comparative suffering" (Comparative suffering is the psychological phenomenon of measuring your pain against others - it can invalidate your own struggles!). It's how experiences are muted in favour of another.
Thank you for sharing all these details. I was impressed at how you returned to NHS work - I've sure the patients are relieved you're there!.
and I should add, as despite rambling on so long, I did not address Victoria's question about recalibrating, when we were ready to return to work, our returns really varied - for him, when he felt physically well enough, return was easy as his old boss had something just right for him. My return was more complicated as I needed to find the right practice and jump through a few NHS hoops. And he was ready before me, despite being the actual patient. I could only start to heal myself once I knew he was OK, and then it was my mindset that needed some work. I think that more than anything showed me the toll that caregiving had taken.
That's a really good point, Rachel. Caregivers have to think for 2 people or more at one time. I can imagine that our caregivers' minds are focused on others' needs first, before our own. It's no wonder Den was 'ready' first...I'm sure you enabled his return to work too.
Even on respite I needed to check my parents were ok before I could enjoy the day. We're conditioned to make sure they're ok first. I'm okay with that because I knew I could do things more fully knowing they were ok...Peace of mind is tough for us, I think.
I hope your managing with the work (we all know how overworked doctors are in the NHS) and that Den is enjoying being back at work too?
Rachel I can so relate to the pros and cons of having healthcare expertise. I was a nurse practitioner in oncology/palliative care and I once said to my daughter “I wish I could download what I know to a hard drive and then misplace it.”
That's a great analogy - I have found it very useful at times but mostly a curse! Maybe a hard drive in a safe that I can get out now and then.
Thank you to everyone engaging with this post and sharing their own stories. It's evident that each of us has such a bespoke experience as a caregiver to a spouse yet the common ground is tangible. To feel you all stand on it with me brings immense strength. I hope you can draw on it, knowing this group "gets it." We are not perfect caregivers. We are all stumbling down an unchartered road. But I see you all. You're among friends. ❤️
Beautifully put and yes to everything you said! I am glad to be among friends here. 💛🙏
Exactly - I see that too. Unique and similar. Thanks, Liza
Thank you Victoria for all that you do to bring awareness.
Hi everyone, I’m Allie. I live in Gloucester, Massachusetts, and I’ve been caring for my husband, Glenn, for a 41/2 years now. Glenn suffered a massive stroke that left him paralyzed on the right side and unable to communicate due to aphasia.
When looking at the prompt, I found myself gently pushing back on the word "recalibration." To me, that sounds a bit too tidy and mechanical for what we went through. What we experienced wasn't an evolution or a minor adjustment; it was a seismic shift.
Before Glenn’s medical crisis, so much of my life was anchored in a completely different kind of energy—running a restaurant and moving through the world with a particular sense of autonomy. When the crisis hit, the foundational ground of our partnership moved entirely. It completely disrupted our roles, our communication, and the unwritten contract of our marriage. It’s the heavy, daily work of learning how to stand on entirely new, unfamiliar terrain, carrying a profound amount of the daily weight on your own while the old version of your shared life has fundamentally altered.
Things were rocky before the stroke and are worse now because there is no way to get through to him. I had to become Glenn's guardian and conservator which I never knew what kind of special nightmare that could be (I advise everyone to go get you POA before it's too late!). After his stroke I had to learn take care of every single thing including Glenn. I had to manage and ultimately sell our restaurant. Our home was a fixer upper. The pellet stoves need their weekly cleaning in the winter. In the summer I'm mowing the way too large yard. To squeeze by financially I became a part time waitress. This is not how I imagined my empty nest years.
Allie
You are so right about advance directives and clear guidance for DPOA. I have written about this a lot in the setting of dementia. Even though my husband had a dementia specific addendum to his advance directives it was excruciating for me to let him go. It’s easier looking back to say of course that was the right thing, but people that haven’t walked in our shoes can’t know the mixed bag of emotions!
That does sound like a seismic shift, Allie. I appreciate your honesty and how well you have described the relational stuff in so few words! It's very relatable.
Hi Allie, I understand that shift to having to do everything. We had a fixer-upper, too, and were working on it the day before my husband had his strokes.10 weeks later, I brought him home, and wow, how things had changed. I agree with you on getting a POA and making advance directives before it becomes necessary. I am sorry you have to go through being his conservator. I can only imagine how hard that must be. Sending hugs.
Thank you for that. Not having that POA has made life so much worse than it needs to be.
Hugs, Allie. Thanks for being here and sharing.
Feel free to disagree on anything - it's why I believe having space to share personal experiences is so important. There is no 'right' or 'perfect' definition of caregiving. I've found some words can really trigger a reaction out of me...like when someone cliché calls carers 'heroes' (uggh).
I hear the hard physical and emotional labour you're experiencing, and the weight of it all.
I'll keep reading your articles and I hope you'll keep connecting with others who get it, here/elsewhere. You're not alone. I see you and all you're doing!
Hi! Thank you Victoria. its not really a disagreement! In my life I just feel like I needed a stronger word. I am sure that word is perfect for others.
Thanks, Allie - yeah I can understand why!
Carol, I am so sorry for what you’re going through. In all these stories I feel like I find pieces of my life in them. Feeling like you can’t make an emotional breakthrough with your mate any longer is painful. The silent stares as you express yourself - you almost feel like you’re speaking to a wall. That is so hard. Then the fear of who will take care of me when you need it can be heavy too. Keep trusting and keep your faith strong. 💛
I’m Carol and I live in southwestern Pennsylvania. My husband was diagnosed with Alzheimer’s a few years ago, but it was a year and a half after I had started noticing and keeping a journal. His neurologists keep saying he does not have Parkinson’s, but he has no use of his right hand. So he can’t write, has trouble getting dressed, has trouble with eating utensils, as well as losing his words. Sometimes he knows he can’t do things, and sometimes he is oblivious.
I am always anxious that he will go out and start using a dangerous tool. (He used to be a contractor; we have tools!) I’m just trying to trust and keep my faith strong.
It’s so hard to have our conversations limited these days. He stares at me blankly when he can’t get what I’ve said; I stare at him blankly as I try to decipher his word salad.
My counselor just asked me yesterday what percentage was I his wife and what percentage was I his nurse. I said 80-20.
Thank you Victoria for starting this. And thank you all for telling your stories. There was something I identified with in all of them. (I’m supposed to have a knee replacement—how will that ever happen??)
It’s good to know we aren’t alone.
Hi Carol
My guy was a major woodworker and outdoorsy guy. We had a near miss with the chainsaw and a serious talk with his dementia doctor and she literally said no chainsaw, table saw, other big stuff but he could do electric hand tools and skillsaw with safety bar. Plus we put a camera in the shop. He was unhappy of course but I just repeated “doctors orders.”
Thank you for sharing, Carol. I am sorry things are so hard. I have had spells where Den has been confused and had speech issues, so have had glimpses only of this aspect of caregiving. When it is permanent and deteriorating, it's a whole different ball game and my heart goes out to you. As you say, when physical functioning is impaired, but your loved one lacks insight, the hypervigilance is on a whole other level. I remember finding my husband in the garden groaning having fallen off a ladder he never should have been up, in his weakened state after treatment - thankfully he fell onto grass and was bruised but relatively unscathed! I felt more like his mother than his wife or nurse that day, telling him off!
Hi Carol, I'm so glad you're feeling the resonance here. It's what I hope for in these discussions.
I'm sorry your husband can't use his right hand. My Dad's hands were really gnarled from the rheumatoid arthritis, so I helped him dress, personal hygiene etc. He used those adapted eating utensils for a while.
I cringed for you when I read 'power tools'. Even with my Dad's instability and gnarled hands, I was sometimes worried he'd 'get up to mischief'
I'm glad you have a counsellor's support. I've had mixed experiences, but will keep exploring support.
I hope you figure out a plan for your knee replacement and support for your husband - if you'd like ideas/tips just say, I'm sure we can all share thoughts or resource links...I know a few people who've had them done. You're definitely not alone!!
Hi Carol, my husband had a lot of power tools and used to be a carpenter. I understand your concern. I hope that you can find some community support when you have your knee replacement.
Carol, I try to have faith in medical professionals but I know how hard that can be when you're seeing symptoms that don't align with a diagnosis. Have you seen a movement disorder specialist? That area of specialization in neurology focuses on diagnoses like Parkinson's. I learned early on in this journey that not all neurologists are created equal.
No. Especially when they have just added on an infusion center for the new Alzheimer’s drugs!
He was on the standard Parkinson’s medications for a few months and they did not help. But thanks for your suggestion! Actually, I think we’re done with neurologists.
Hey Victoria, your use of the word "recalibration" feels much more accurate than simply "adjustment" because it acknowledges how deeply illness can shift the rhythms, roles, and expectations within a relationship. While I wasn't caring for a spouse, I experienced this with my mother after her quadruple bypass surgery and later when she broke her spine. Suddenly there were new responsibilities, new worries, and a new awareness of how quickly familiar roles can change. The practical tasks were one part of it, but the emotional recalibration was often the greater challenge. Thank you for creating a space where people can talk honestly about those changes and know they're not navigating them alone.
Karen, I like that you pulled out emotional recalibration as a thing by itself. For me it felt like my emotions were all over the place. I needed to focus on how I was feeling and put a name to it.
Like the old radio where in between channels you got static but when you landed on a station you could identify it as country music or rock n roll. I was withdrawing. I had to name my depression before I could ask my provider to increase my antidepressant.
When you are emotionally out of whack everything is harder.
I understand and respect that. And I completely understand the static. I have been in the depths of despair a couple of times and it is hard to recalibrate. Glad you got it figured out and I do hope you are doing well.
Exactly, Karen. I'm so sorry your mother went through that tough surgery and then suffered a break in her spine. I can imagine the kind of care she needed. Yes the emotional recalibrations...constantly are grinding.
Thank you for your kind words of appreciation - FYI the 2nd Friday of each month there's an eldercare/caring for parents discussion - I think you'll resonate a lot with what I've shared there.: https://www.carermentor.com/p/eldercarecaring-for-parents-discussion?r=a9y7d&utm_campaign=post&utm_medium=web
Thank you Victoria.
Hi everyone, I'm Kaeli Hansen and have been a caregiver for most of my adult life. My beloved first husband died after a courageous and grueling battle with stage IV throat cancer. Most recently, I have been the primary caregiver for my second husband, Kurt, for the past four years. We are currently living in Cuenca, Ecuador. I can relate to so many of the comments in this discussion! Thank you all for sharing with me.
Having had a TBI myself during my first husband's cancer was really difficult, and after his death, I met Kurt, who became my caregiver. Then suddenly, he had 5 strokes, and everything changed overnight. He had been a very independent person, and as many other caregivers have mentioned, it was hard to shift from wife and "caree", to a full-time caregiver who needed to make "suggestions" in order to help him stay safe. It is still a struggle to handle this diplomatically, and there are times when I am more patient than others (like when I've had adequate sleep).
I will share the article I wrote on caregiver role reversal. I know I'm not the only disabled person here caring for a spouse.
https://caregiverscount.substack.com/p/caregiver-role-reversal
Raise your hand if you struggle to balance your fear and anxiety over what might happen when your spouse takes risks (for us, the biggest one is getting up or walking unaided). That's what forums like this are here for, and I want to thank Victoria for bringing us all together so that we can support one another on our journeys.
Kaeli, your story is both heart-breaking and inspiring. I can’t imagine how challenging and difficult your journey is, yet, here you are, sharing and supporting others in their journey. That is true courage, heart and grace in action. Thank you.
Thanks for your encouragement. Giving back is my way of paying it forward. Having had such wonderful people in my life had been a blessing. It is my way of saying thank you to Spirit.
That’s beautiful.
Taking risks versus keeping them safe is such a conundrum. One of my favorite memories is my hubby loved the motorized cart at Walmart. One time we got separated and one of our friends texted me “Stu is in dairy.” 😆😂
Mr. J goes to the store to buy. I go to the store to shop. When we go to the store together, he is off to the races while I am lingering over fruit and vegetables. When I can’t find him, I call out “Marco!” Our grocery store is small enough that he can hear me where ever he is. He can still remember to respond, “Pollo,” for which I am eternally grateful.
Awww, romance in the aisles - I can imagine the film reel now. That, or perhaps another scenario of a lot of kids causing chaos and responding to you.🤣
Yeah, we had a similar disaster when trying a motorized wheelchair last year. There was no off switch in his brain for that.
I love that!
Thanks for sharing, Kaeli. I can't imagine how I would have managed if I had care needs myself before my husband became ill. The emotional adjustment to that must have been enormous. I do fear becoming ill myself more nowadays and wonder who would look after me. Thanks for sharing your article which was inspiring - your manual and the realisation about the need for contingency planning is something I advise my patients. I think just having a plan in place helps. I can imagine, when you wrote your manual, you were probably quite chocked at how much you were doing - we just get on with it, don't we but maybe we should also give ourselves a pat on the back from time to time!
Hi Rachel, yes, we stay calm and carry on! It can be overwhelming to look at the manual, so I try to stay in the moment and balance it with pacing my energy needs. It's quite a balancing act. Getting help with caregiving before you become ill is ideal. That way, you can get proper rest and exercise to maintain your health, and you also have caregivers who are familiar with your loved one's needs in an emergency. We don't always live in an ideal world, though, so we get through the best way possible. Improvisation is key! ;-)
yes and I think having some flexibility can be the key to resilience. We always said prepare for the worst, hope for the best. And living in the moment helps you notice the joys that suddenley appear. It sounds like you are well practiced at that.
Yes, Rachel, being flexible and in the present moment is so important if we, as caregivers, are to thrive.
You're welcome, Kaeli. Thanks for sharing your fear and anxiety. Given your recent travels in Ecuador, I now have a deeper appreciation for what you've been through!
I really appreciate this opportunity to engage with other caregivers. Thanks for facilitating this network. 💛💐🙏
You're very welcome, Kaeli. Keep a lookout for more comments ;-)
Thanks for your comments and contributions.
I'm Steve. I'm caring for my spouse who was diagnosed with multiple myeloma in 2021. I live in southwest Idaho.
Our marriage was on the rocks and headed for divorce. I agreed to help her after the diagnosis. It was the right thing to do.
My spouse is an alcoholic and that has complicated the situation. She was often difficult to deal with and that has not changed. Dementia has started as well. That may be genetic or related to the alcoholism - both, I think - not that it matters now.
The marriage has completely deteriorated now. I view myself strictly as her caregiver, and not as her spouse or partner. It is difficult to face the day sometimes.
Steve, I am so sorry. It's hard enough to be a caregiver to a spouse that you love. Your situation sounds like an extreme challenge. You are making an incredible sacrifice. I hope you find some support here on Substack. We are here to support you.
Thank you, Anne. I am fortunate to have several close friends that are very supportive. They help me through the tough days.
I am still learning my way around Substack. Regardless, I am finding some support here.
Steve,
As a former oncology nurse I saw this a few times. Single most compassionate thing I can imagine. I agree, give yourself grace. Don’t be afraid to set limits on what you are able to do.
Thank you for sharing, Steve - that sounds very tough. Caring for someone when the equation has not been balanced beforehand comes with a whole different set of recalibrations. I am full of respect that you have found a way to do this. I hope you are finding ways to care for yourself as well and have some boundaries in place, and support for you.
I hear caregivers in an online support group say that they love their spouses. Sometimes I want to say, "That's not true in every situation". But I don't - no need to rain on their parade. It's hard for everyone in that situation.
Hi Steve, that is such a hard place to be in. To loose pieces of your spouse and then one day, wake up and realize the relationship that should have been is not. To feel like your there for them to only care. It can make you feel lonely and trapped. But the care we give matters. And it shows our devotion no matter what. Hang in there.
Hi Steve, thank you for being here and sharing.
I'm sorry you're in such a difficult and complex caregiving situation. I echo the comments of Carol and Pam.
I just wanted to add that your feelings, welfare and choices - whatever those may look like to you, are just as important as those of your spouse. I hope you both receive the support you need so that the days become easier for you.
I also belong to a local caregivers support group. We meet online every two weeks. It's good to talk with other caregivers in real time.
Steve, it would be so difficult to care for someone when your relationship is this complex--it's hard enough when you love and feel connected to the person you're caring for. I hope you're giving yourself a lot of grace for doing the right thing in this moment. (By the way, I'm originally from Boise!)
I am so sorry for this, Steve. Sometimes I have a hard time remembering how much I love my husband and we had a good marriage. It would be terribly difficult to care for someone who you don’t love. Peace to you today.
I'm Helen Landalf. I live in Seattle, Washington.
My husband and I are both cancer survivors. I had Hodgkin's Lymphoma at age 15, and he had a complete resection of a brain tumor 33 years ago. We are both cancer free, but he now has cognitive disabilities and also had a stroke several years ago.
I don't like to think of myself as Steven's caretaker, but I've definitely taken on everything in our household that requires time management and executive function. I handle our financial affairs - bills and taxes - keep our schedule of doctor's appointments, etc., plan our meals and organize our travel. I try to keep holding Steven accountable for the things he can do, but sometimes it's easier just to do something than to keep reminding him. He is declining at a faster rate than I am, so mostly I'm planning for a future where I am even more of a caretaker than I am now.
Hi Helen
The once equal distribution of responsibilities to one of what used to be two people feels like dumped on especially when you’re exhausted. I remember having BIG resentment when taking the trash out became my job. By no means a horribly difficult physical burden but somehow it felt that way. I cried over it.
Thanks, Anna, I agree with you. Sometimes I get resentful and feel like I'm his "mommy" instead of his wife.
Yes, Anna, that can be difficult, and it's not the major events like the ICU and rehab stay that I cried over; it was the ongoing responsibility of small things like the bills or trash, plus everything else. That's when the overwhelm really hit for me.
Plus the 24/7 vigilance needed to care for someone you love just wears you down.
So true, Alice. Being "on guard" 24/7 can be devastatingly tiring.
Absolutely exhausting. I sometimes travel for work, and I sleep so much better when I am not lying next to Mr. J, constantly concerned that he may get up and wander. Even though that hasn't ever happened. . . yet.
Thanks for sharing, Helen. That sounds like a lot - I hope you have some wider support around you too.
Helen, it can be hard to manage things - to take over all the household responsibilities. I remember when my husband took ill after his bacterial meningitis, and lost his vision, I had to learn how to take over all the household responsibilities - I didn’t know what a routing number was on a check, because for years he managed all of it - then BOOM - I had to learn how to manage it all. Hang in there.
Thank you, Marcelina. Yes, we do get that opportunity to develop new skills.
Hi Helen. I feel for you. It's a lot! I hope that in that planning, there's some practical support from your surrounding community, or paid support. If you haven't already heard about them, you may want to look into Careyaya https://www.careyaya.org/ student caregivers, I was intrigued by their services. I don't have direct experience I just saw an interview Neal K Shah (on Substack) did with Helene Epstein.
Thank you for this, Victoria.
I'm Patricia, and I live in Winnipeg, Manitoba (Canada). Becoming my husband's caregiver was definitely a process, although the speed and tempo of that evolution felt like it really picked up with his diagnosis in January 2025.
Doug was diagnosed with Corticobasal Degeneration, Frontotemporal Dementia and Primary Progressive Aphasia. (The latter two conditions are the same ones that Bruce Willis lives with.) My husband also has anosognosia, meaning he lacks insight and awareness of his disease. Both a blessing and a curse. The neurologist told me we might have five years.
Living with the constant changes in my husband's behaviour, cognition, executive function and abilities with language mean that recalibration is a constant. Every day I am on the alert, trying to respond with understanding and compassion and to maximize our quality of life in whatever time we have left.
Our marriage was never perfect, but it was good. A gift to us both for more than 40 years. Honouring Doug, caring for him to the best of my ability, while also trying to care well for myself so that I can see him through to the end is the least I can do.
Faith has always been an important part of our life together, and with this diagnosis I realized the next few years are really where "the rubber will meet the road." If my faith is worth anything at all, it will get me through. So I search for joy and try to make sense of the crazy while writing about our lives at: https://searchingforthewords.substack.com/
Hi Patricia. I know my faith helped us so much when Sean was dying. We prayed together every day. And in the end, it was a prayer that he left this world on, so I was grateful. Thanks for sharing your experience.
Victoria, I just joined the group as the caregiver for my husband, who suffered a hemorrhagic stroke. Thank you for sharing. I came to this group after seeing that I'm not alone in needing joy after all the exhausting trauma of caregiving.
My husband is from Winnipeg, Manitoba. He moved to LA, where I met him, after playing bass with Burton Cummings, also from Winnipeg. Crazy how I meet so many people from my husband's hometown. I helped my friend at a vintage sale. I met a few dozen people. Two of them came from Winnipeg (they didn't know each other). We love and miss Winnipeg. My husband's brother and his lovely family are there. His brother has severe alzheimer's, so his wife is doing the work of a superhero, caring for him. I feel so helpless when I get her phone calls. Anyway, sorry to ramble.
Michele, I’m a little late to the party (because I’ve been dealing with some grieving), but I would like to welcome you to our club that nobody wants to join. I’m glad you are here. I’ve been at Substack for a few years, and having people who know your pain makes a difference. My Mr. J has been diagnosed with a degenerative brain disease. You are right, caregiving is it’s own kind of trauma.
Thank you, Anne. It helps to be with people who understand. As you said, a club nobody wants to join.
Thanks for sharing - so glad you have found ways to care for yourself. There have been times I have felt guilt about my own needs, which I know is common among carers. Looking forward to reading your substack.
Thank you, Rachel/Dr. Molloy - for your kind words and also for subscribing. You’ve been in the trenches with your husband - and I am certain that experience gives you insights that make you an extremely caring doctor. A gift to your patients. And if sounds like you and Steve have found beautiful new way of living. I wish for you that it continues for many years to come.
Oh boy. Your story takes me right to the heart of our experience. The struggle to do the best you can to honor your husband while caring for yourself. The days can be long and exhausting. For me looking back now I can share that I am grateful that I was able to persevere. I celebrate my resilience and love for him. I also have a commitment to self care like never before. Hugz.
Thanks, Anna. I'm so glad that you came through with a commitment to self-care. That's awesome. And yes, we always carry our love for them even when they are no longer here physically. Caregiving is complicated but can be quite rewarding. Hugs and waves of love.
I try to walk outside 30 minutes a day (although when it is below freezing, I am more inclined to use my rower in the house). I do it because 30 minutes of nothing (or, more likely, a juicy podcast) feeds my soul AND is good for me! #resilience.
That's a wonderful act of self-care!
Thank you, Anna. It's good to hear from someone on the other side with no regrets. I hope to one day feel the same. ❤️
Patricia, I loved that you focused on the small joys and your faith while navigating a difficult situation. 💛
Thank you, Marcilina.
Thanks, Patricia. Yes, I understand that level of alertness and the anosognosia. I hear you. I appreciate how your faith offers you comfort and strength. Warm wishes.
Thank you, Victoria.
I’m Marcilina Martel, and I live in Orange County, California.
I’ve spent more than 30 years caring for my husband.
It began long before I ever called myself a caregiver. At 27, he was diagnosed with rheumatoid arthritis. We adjusted, as couples do. I picked up a little here, carried a little there, and together we kept moving forward.
Over time, those small adjustments
became a way of life. Our world slowly recalibrated around his illness and the limitations it brought.
Then, years later, bacterial meningitis changed everything. The life we knew before it disappeared, and a new chapter began. The new chapter that brought a whole new level of care that I would have never imagined- and maybe that was the major shift for me.
It’s hard to explain how you quickly adapt to health crisis- it’s hard to watch your life always be a part of sickness and care. It’s hard to see your children be affected by it. And at least for me, I feel like there isn’t one specific moment or shift that made me realize that my life was changing. I always just managed, quickly adjusted - I just did it naturally because honestly that is just the way our marriage started and maybe it was how I coped. Care was always a part of it from the start as sad as that may sound.
I like the idea of “adjusting” over time. Certainly true for us. My husband had a neurodegenerative diagnosis and then an Alzheimer’s diagnosis 10 years later. The adjusting was both incremental and sometimes acute. I think adjusting overtime builds resilience and resilience is our lifeboat as caregivers.
My husband has had a rare neurological disorder slowly robbing his mobility for years, then he was diagnosed with vascular dementia. It has been a very incremental ongoing adjustment which has certainly built my resilience , given me time to learn new skills and I would also say increased my empathy and patience. So most of the time I am doing fine.
Though that state of acceptance can be tested when I remember that there was life before this. That I was part of a busy couple doing things together. That I haven’t always been a caregiver.
You've pinpointed a really common thread many of us experience - how suddenly an illness event can change everything. And the stages you go through, 'just adapting'. Sometimes it's only later, when you have time to reflect, that you realise just how big it has all been.
Geez, Marcilina, 27 is a very young age for the RA diagnosis. Dad's was late 50s I think. Thank you for sharing. It sounds like you had constant recalibrations before the meningitis.
A caregiver's agility becomes an ingrained skill over time, I think. xo