u/CharmingMycologist74

I spent years expecting one parent to die (chronic illness) - and then the other one died first (without any time to grief). Has anyone experienced this?

Hi! I'm a 37-year-old woman from Austria, and I've been thinking a lot about something since my dad died unexpectedly in 2024.

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 dad struggled with alcohol addiction and eventually died of liver cancer in 2024. Just a few weeks later, my mom was hospitalized and nearly died too after her treatment stopped working. We had already said our goodbyes when, thankfully, a new treatment worked and she stabilized again.

At the same time, I was dealing with my dad's funeral, paperwork, a difficult situation with the woman he had married shortly before his death, and my mom's hospitalization.

There wasn't really time to grieve. I was mostly just functioning.

But there was another contrast between my parents that was difficult for me.

For years, I watched my mom do almost everything she could to stay alive. She tried treatment after treatment and kept fighting for more time. At the same time, I watched my dad continue drinking and smoking, even after his diagnosis.

I know addiction isn't as simple as choosing to stop. But as his daughter, it was still incredibly hard to watch one parent fight so hard for more time while the other continued doing things that could take that time away.

After he died, that left me with anger alongside the grief. Part of me understood his addiction. Another part of me still wanted to ask:

Why didn't you fight harder to stay? You promised you'd always be there for me.

For most of my life, my mom was the parent we expected to lose first.

My parents divorced when I was 23, but I think that assumption shaped more of my life than I realized.

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.

A treatment stops working. You wonder how much time is left. Then another treatment works.

You exhale. Life continues.

And eventually, it happens again.

Living like that for years changes the choices you make. You choose that person over other plans because: What if this really is the last time?

I've postponed things, stayed close, changed plans and taken my mom on holidays partly because I wanted to, but also because of guilt.

What if I don't do this and regret it when she's gone?

Meanwhile, I assumed I had more time with my dad.

Shortly before he died, he suddenly became very insistent that the two of us go on holiday together. We had never done that before.

So we went.

Sometimes I wonder whether he already knew something was wrong and didn't tell us. I'll probably never know.

It became our first holiday together. And our last.

My mom, the parent I had spent years psychologically preparing myself to lose, is still here (luckily).

And that has left me with a question I can't quite shake:

What does it do to you when you spend years preparing to lose one parent, organizing parts of your life around that possibility, and then the other parent dies first?

My dad's death was fast. There wasn't enough time.

With my mom, I've sometimes felt like I've been preparing for her death for years. But I'm beginning to think you can't actually prepare.

Anticipatory grief isn't necessarily acceptance. Sometimes it's repeatedly grieving something that hasn't happened yet.

This might be our last Christmas.

Then it isn't.

Maybe this treatment was the last option.

Then another one works.

And you start again.

There is another feeling that's harder to admit.

After years of hospitals, treatments, fear, advocating, changing plans and waiting for the next crisis, I've sometimes thought:

I just want this to finally be over.

While at exactly the same time desperately not wanting my mom to die.

And my dad's death was a painful reminder of what "over" actually means.

I've come to realize that those feelings can coexist. You can love someone enormously and still be exhausted, angry, resentful or numb.

Since my dad died, I've also wondered how many decisions I made based on who I thought I was going to lose first.

How often did I choose my mom because I thought there would be more time with my dad?

How much did I keep my own life flexible because I needed to be available?

And how much time did I assume I still had with the "healthy" parent?

Part of my therapy involves writing about all of this. Somewhere along the way, I started wondering whether I might eventually turn some of it into a book, both to process my own experience and hopefully help other people feel less alone.

But right now, I mostly want to hear from people who understand some part of this.

If you've lost a parent, especially after years of illness or while another parent was chronically ill, I'd love to know:

  • Did anticipatory grief actually make the eventual loss any easier?
  • Did "this might be the last Christmas/birthday/holiday" affect the choices you made?
  • Did you ever feel guilty about wanting your own life back?
  • If addiction or someone's own behavior contributed to their illness, did anger become part of your grief?
  • If one parent seemed much sicker, did you assume you'd lose them first? Did that change how much time you gave the other parent?
  • What do you wish someone had told you about grief before you experienced it?

You don't have to answer everything. Even if just one part of this feels familiar, I'd really appreciate hearing your experience.

I'm not looking for a particular answer. If your experience was completely different from mine, I'd like to hear that too.

I think what I've been looking for, more than anything, is simply that moment of realizing:

Oh. Other people have had these thoughts too.

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u/CharmingMycologist74 — 7 days ago

For adult children/family members of people with multiple myeloma: I would really like to hear about your experience and the things we don't usually say out loud

TW: This post discusses long-term illness, anticipatory grief, fear of losing a parent, death, caregiver exhaustion, resentment, and other difficult emotions. I've put the more difficult sections behind spoiler tags. (And if you're living with MM yourself and have children, please feel free to share this with them if this is a conversation you feel comfortable opening with them.)

I'm a 37-year-old woman from Austria, and my mom has been living with multiple myeloma since 2016.

I'm posting specifically because I've found it surprisingly difficult to find other adult children of people with MM, despite how uniquely long and uncertain the course of this disease can sometimes be.

My mom has been through multiple treatments over the past ten years. She has often received new treatments through clinical trials, and she's very active in the myeloma support group in Austria. We've both shared our experiences at their conference in Vienna, so over the years we've approached this topic from different perspectives and have always been open to exchanging experiences and knowledge with others.

Over the years, there have been periods when things were relatively stable, followed by treatments no longer working (usually after a year or two at most in her case, which is not the norm) hospitalizations, searching for the next treatment option, and times when we genuinely didn't know whether she would survive.

Then a new treatment works.

You exhale.

Life continues.

And eventually, the cycle can begin again.

I'm currently working through my own experience in therapy, and I've realized that I can find plenty of information about MM itself, treatments, caregiving, and grief — but very little about what living alongside MM for many years can do to the family members, particularly children or adult children.

Especially the feelings we may not feel comfortable saying out loud.

>!Loving your parent enormously while sometimes resenting how much the disease has shaped your own life.!<

>!Feeling guilty for having needs because theirs seem more important.!<

>!Becoming very independent because you learned not to add another problem.!<

>!Feeling protective of them and frustrated or angry at the same time.!<

>!Feeling guilty for wanting distance.!<

>!Being exhausted by yet another crisis.!<

>!Feeling like part of your own life is always slightly on hold.!<

>!Wanting to move abroad, travel, change your life, or make long-term plans, while part of you feels that you need to remain available because everything could change with one phone call.!<

>!Spending days or weeks in hospitals, advocating, researching treatments, asking questions, organizing things, and trying to make sure your parent gets the best possible care.!<

>!And wondering which decisions in your own life you genuinely chose and which were influenced by the need to remain available.!<

>!One of the particularly difficult parts for me has been anticipatory grief. With MM, we've had many moments over the years that felt like they might be the last Christmas, birthday, or holiday. My mom has said this herself sometimes. A treatment stops working, another option has to be found, and once again you wonder how much time you have left.!<

>!Sometimes that affects the choices you make. You choose your parent over another plan because: What if this really is the last one? You stay close, postpone something, change plans, or take them with you because you worry there might not be another opportunity.!<

>!And sometimes, if I'm completely honest, I've made those choices not because they were genuinely what I wanted at that moment, but because of guilt: What if I don't do this and regret it when she's gone?!<

>!There is another thought that is even harder to admit. After years of uncertainty, treatments, hospitals, fear, advocating, changing plans, and waiting for the next crisis, there can sometimes be a thought like: I just want this to finally be over. And at exactly the same time, you desperately don't want the person you love to die.!<

>!I don't think those feelings necessarily contradict each other.!<

>!I think exhaustion, resentment, numbness, fear, guilt, and enormous love can coexist.!<

>!And none of that means I blame my mom for having MM. She didn't choose this either.!<

>!I've actually had people misunderstand my relationship with her because of this. Someone once asked why I seemed so cold toward her. Then, after seeing us together, they said, "Oh, I thought you didn't have a good relationship. You actually have a really good relationship."!<

>!And somehow both observations made sense to me.!<

>!Maybe sometimes distance or numbness isn't an absence of love. Maybe it's a form of self-protection after years of uncertainty.!<

>!Part of my therapy right now involves writing and journaling about my own experience, which started as an exercise from my therapist. Somewhere along the way, I began wondering whether I might eventually turn some of this into a book — partly to process my own experience and hopefully eventually help other family members feel less alone.!<

>!But first, I really want to listen to other people who have actually lived alongside multiple myeloma for years.!<

>!So if your parent or another close family member has MM, I'd genuinely love to hear:!<

>!* What has the experience been like for you, beyond the medical side of MM?!<

>!* What feelings have you had that you thought you weren't "supposed" to have?!<

>!* If your parent has lived with MM for many years, has the uncertainty affected how you plan your own life?!<

>!* Have you experienced repeated anticipatory grief — thinking "this might be the last Christmas/birthday/holiday" — only for life to continue?!<

>!* Has MM influenced where you live, your career, relationships, travel, having children, or other major decisions?!<

>!* Have you ever felt like part of your life needs to remain on standby for the next relapse, hospitalization, or treatment change?!<

>!* What do people outside an MM family misunderstand about living alongside this disease?!<

>!* What has genuinely helped you cope?!<

>!* What do you wish someone had told you when your parent's MM journey started?!<

>!* And is there anything you've always wanted to ask other children/family members of people with MM but never had anyone to ask?!<

>!You absolutely don't have to answer everything. Even if you recognize just one part of this, I'd be very grateful to hear your experience in the comments or as a DM.!<

I'm also interested in experiences that are completely different from mine. I'm not looking to suggest that MM affects every family or every child in the same way.

And to anyone here living with MM themselves: none of this is intended as blame toward the person who is ill. I love my mom very much. I think part of what makes these feelings so complicated is precisely that the person we love didn't choose the illness either.

Thank you in advance to anyone who feels comfortable sharing.

I think part of what I've been looking for all these years is simply the feeling: Oh. Other people living alongside MM have had these thoughts too.

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u/CharmingMycologist74 — 8 days ago