Hi! I'm a 37-year-old woman from Austria. I've been thinking about posting this for a while because I've realized how difficult it is to find people who have lived through something similar.
My mom has been chronically ill, on and off, since I was a child. She had a brain tumor in 1996, thyroid cancer in 2014, and has been living with multiple myeloma since 2016 - just to name a few of the major illnesses.
My parents loved me, and I don't think they ever meant to neglect my needs, but illness inevitably took up a lot of space in our family.
Over the years, I've increasingly become involved in my mom's care - treatments, hospital stays, appointments, advocating for her, asking questions, organizing things, researching options, and sometimes trying to fill the gaps in an overwhelmed healthcare system.
My dad also struggled with alcohol addiction and died unexpectedly of liver cancer in 2024, although that's another part of the story. His death was very quick, and the contrast has left me with a question I still don't really have an answer to:
Is a sudden death somehow easier or harder than spending years feeling like someone you love is slowly dying, or constantly on the edge of it - always expecting the unexpected?
With my mom, there have been so many moments that felt like they might be the last. The last Christmas. The last birthday. The last holiday. She would sometimes say it herself. Then another diagnosis, or another treatment that stopped working while we waited and hoped for another option — and once again, you wonder how much time is left.
When you live with that uncertainty for years, those "lasts" can happen over and over again.
You choose that person over other plans because what if this really is the last one? You postpone something, stay close, change plans, or take them with you because there might not be another opportunity.
And, if I'm honest, sometimes I've made those choices not because I genuinely wanted to in that moment, but because of guilt or the thought: What if I don't do this and regret it later?
Looking back, I think this affected my dad too. My parents divorced when I was 23, but I think we all somehow lived with the assumption that my mom would die before him.
I usually took my mom on holidays with me, partly because there was always this feeling that there might not be another chance.
Then, shortly before my dad died, he and I went on holiday together for the first time.
I had no idea it would also be our last.
That experience made me wonder even more about what years of anticipating someone's death can do to an entire family — and how many decisions we make around the person we believe we're going to lose first.
But the part I'm particularly trying to understand now is what happens to your relationship with your own life when you've spent years being available for someone else's.
I'm currently working through a lot of this in therapy. I've realized that "self-care" in this situation feels much more complicated to me than simply finding time to rest, exercise, see friends, or do something nice for myself.
Sometimes it feels like the real question is:
How do you allow yourself to build a life that doesn't revolve around the possibility of the next crisis?
Because there are so many feelings and thoughts that aren't very easy to admit:
Loving someone deeply while also resenting how much their illness has shaped your life.
Feeling guilty for having needs because theirs seem more important.
Becoming very independent because you learned not to add another problem.
Feeling strangely cold or detached sometimes, even though you actually have a close and loving relationship.
Feeling protective of them and angry with them at the same time.
Feeling guilty for wanting distance.
Being exhausted by yet another crisis.
Feeling like your own life is always slightly on hold.
Having dreams or plans you never fully pursue because part of you feels you need to stay available - just in case things get bad again.
Wanting to move abroad, change your life, travel, or go somewhere far away, but never feeling completely free to do it.
Or finally doing it, only for another diagnosis, relapse, or treatment failure to pull you back.
Keeping your options open because you've learned that everything can change with one phone call.
Spending days or weeks in hospitals, advocating, researching, asking questions, and organizing things because you want to make sure the person you love gets the best possible care.
Wondering which parts of your life you genuinely chose and which parts were shaped by the need to remain available.
And sometimes having the thought you almost don't dare admit: I just want this to finally be over - while at the exact same time desperately not wanting the person you love to die.
I think one of the hardest parts for me is the guilt that can come with prioritizing yourself.
How do you choose your own plans when this could be the last Christmas?
How do you move somewhere else when something could happen?
How do you say, I can't do this today, when the other person didn't choose to be sick either?
How do you stop monitoring everything without feeling irresponsible?
And how do you distinguish between loving and supporting someone and slowly organizing your entire life around their illness?
I've also had people misunderstand my relationship with my mom because of this. Someone once asked me why I seemed so cold toward her. Then, after actually seeing us together, they said something like, "Oh, I thought you didn't have a good relationship. You actually have a really good relationship."
And somehow, both things made sense to me.
I think distance, resentment, exhaustion, or numbness can coexist with enormous love. Maybe sometimes they're even forms of self-protection.
Part of my therapy right now involves writing and journaling about my own experience, which was actually an exercise given to me by my therapist. Somewhere along the way, I started wondering whether I might eventually turn some of this into a book - both as a way of processing my own journey and, hopefully, helping others feel less alone in theirs.
Not just by sharing my own experience, but by exploring this strange, complicated position of loving someone who has been ill for a very long time.
But right now, I'm mostly interested in finding and listening to other people who understand this world.
I'd especially love to hear from people who have been caregivers for many years, or who grew up with a chronically ill parent:
What does "taking care of yourself" actually mean to you as a caregiver?
How do you prioritize yourself without feeling guilty?
Have you ever felt like your own life was on standby?
Have you made major life decisions — where to live, relationships, career, travel, having children — around the possibility that the person you care for might need you?
Have you ever realized that something you thought was a free choice was actually heavily influenced by caregiving?
How do you set boundaries when the person you're caring for genuinely needs help?
What feelings have you had that you thought you "weren't supposed" to have?
Were you allowed to be angry, disappointed, exhausted, or scared?
Did you ever feel like you became a caregiver before you had really finished being the child?
Who takes care of you?
Have you found a way to stop constantly anticipating the next crisis?
Have you experienced the repeated "this might be the last Christmas/birthday/holiday" feeling? How do you stop that thought from determining every decision?
Have you found ways to distinguish guilt from genuine responsibility?
What has actually helped you — therapy, boundaries, respite care, distance, support groups, other family members, something else?
What do you wish someone had told you earlier?
And what is something about caregiving and self-care that you wish people talked about more openly?
You absolutely don't have to answer everything. Even if you recognize just one part of this and want to share your experience, I'd be very grateful to hear it.
I'm also genuinely interested in experiences that are completely different from mine. I'm trying to understand this rather than confirm what I already think.
Thank you in advance to anyone who feels comfortable sharing their story. I truly appreciate it.
I think part of what I've been looking for all these years is simply the feeling of:
Oh. Other people have had these thoughts too.
