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    • #27987
      Christie
      Participant

      Hello fellow caregivers. I haven’t felt comfortable talking about this in my column but I thought it might be helpful to bring it up here and see if anyone can relate. I was in my late 20s when my mom’s IPF got really bad. I wasn’t really aware of the prognosis until she was already in the ICU fighting for her life. In a few short weeks, I had to really reckon with my mom’s mortality and everything that meant for our relationship. I thought about what we would miss if she didn’t survive. For example, my husband and I eloped, but we were trying to plan a wedding party to celebrate with family and friends. It broke my heart that my mom might not be there when it was something she was so excited to do with me. There were countless other things that made me sick to think about, imagining her absence.

      But one particular thing made me feel not only heartbroken but guilty: kids, and how I don’t have them. My husband and I have been together for almost 11 years, married for 5, and we still haven’t had kids. I’ve always wanted to take my time in that department and try for a family when I felt ready and excited to do it. For most of my 20s, with financial instability, and other chaotic life stuff, I just felt terrified at the thought of bringing another human into the world. But when my mom got sick, I felt so guilty that I had been selfish with my timeline and my body, and that my mom might never meet grandchildren.. likewise that my possible future children might not meet their grandma.

      My mom and I talked about this while she was in the ICU but it only made me feel worse. I put a lot of pressure on myself, and still just didn’t feel like that time was right to have kids. I didn’t want to do it just because my parents are aging and ailing. I really wanted to be committed to parenthood from my own heart.

      Once she started to recover from her transplant complications, the guilt kind of went away. Recently she has had some inflammation and funky stuff showing up in her workups. She had been doing so well the past two years that I didn’t want to truly admit that she might be at risk of further lung disease or transplant comorbidities that could make her very ill. Now that I am facing and accepting this, the guilt about having a family has returned.

      Can anyone relate? How do you live with this and stay true to yourself?
      Are there other things that have caused you guilt as a caregiver? Please share and let’s support each other.

    • #28021
      Virginia Currie
      Participant

      @christie-patient

      My mother had partial lobectomy.  She and my father 6 packs a day smoker.  She passed away just at 60 yo. I have so much guilt not able to understand her medical condition.  At times, I felt really frustrated having to take care of her.  I was so stressed because my father had lung cancer and died at age 65 yo just 3 months before my mother died.
      I was married and divorced and not blessed with children as well.  I’m now diagnosed with PF.  At times, blaming myself for not being a good daughter to my mother.  You see, those thoughts will enter our minds and put us down.  I’m so glad that you still have your mother.  Show her how much you love her.  Do not put a lot of pressure on yourself. There is a reason why things happen.  If you are spiritual, belief in God will ease any guilt or doubts of your past and will make you deal with the present time.  I’m fighting my fear about this illness and sadness that I may not be able to go back to work.  I have to move on.  Love your husband and speak with him regarding having children.  Is it a priority?  Your marriage to him is important that you have to preserve.  Show your mother the gratitude she did in raising yo up.  Seek for peace through prayers, patience, and perseverance.  You will be okay.

    • #28050
      David Ota
      Participant

      @christie-patient

      Not that you asked, but here’s a view from the other side of the fence.  I am the ailing parent with adult children who have no kids.  IPF-2011, Lung Transplant-2016, Chronic Rejection-2020.

      1. Being a parent is the hardest job I have ever had, bar none.  I did not think I was ready when I had my 1st when I was 31, and my son is getting ready to turn 30, and I’m still not ready to be a parent 🙂

      2. I personally would not wish parenthood on anyone not fully committed.  There were days I was so tired I could not see straight.  Days I was so frustrated, I could scream.  Years money was so tight, vacations went on credit cards.

      3. For me, the pressure and responsibility were always there, a constant background hum. Gotta feed ’em, gotta change ’em, new shoes, boy friends, girl friends, cell phones, bullying, grades, college.

      If one of my kids came up and said they felt guilty they did not have any grand babies for me, I smack them upside the head, again, I question if I ready to be a parent…

      My IPF and my Transplant are my problems.  I’d be lying if I said I don’t hear the Grim Reaper sneaking up on me.  I also know the time and effort I used to be a parent.  I would beg both my kids to NEVER use me as an excuse to have a child.  My take: Have a child because you AND your spouse are committed to each other.  Have a child because it fills a need you have.  Have a child because you want to be a parent.

      I have told my kids since before high school,  “Have fun, it’s important” not “Get married, settle down, have kid”

      I’m glad I had my children.  They are a source of Joy everyday.  But…kids are too big a commitment to leave to guilt, or mothers, or mother-in-laws, or chance for that matter.  On the hard days, ya’ gotta want ’em.

       

       

    • #28055
      Christie
      Participant

      @davidota, I definitely needed to hear that. Thank you. A lot of people have said sentiments like, “you’ll never truly be ready, you just do it, learn on the fly”. That for me feels like one part relief and one part pressure. Like, no one’s ready but they figure it out/you’ll never feel ready so might as well just do it. I can see the huge amount of time/energy/money/responsibility that it takes to be a parent and it’s not something I take lightly, learning curves aside.

      I have my own challenges that I am working to overcome and what you said about the hard days really resonates with me. There have been days in the last five years where I have thought “if I had to do anything but take care of myself today I would absolutely fall apart.” And if I went into parenthood not 100% wanting ’em… well, I could see myself being resentful on days like that. I know I will still have days like that, but I don’t want to feel resentful toward my mom because my decision to have kids was swayed by her health status. That’s not fair to anyone.

      Anyway, for now, I’m quite content to “parent” a rescue mutt and a chubby cat. Your words have reassured me that that’s ok. Thanks again 🙂

    • #28057
      Christie
      Participant

      @vmcurrie62 Virginia, thank you for sharing your story and reminding me that we all have guilt. Even though it hurts, it’s comforting to know that I am not alone.

      I am so sorry that you lost both parents to lung disease and now deal with it yourself. That must be incredibly hard. Of course, I didn’t know your mother but I can’t imagine that she would hold it against you that you didn’t understand her disease when she was going through it. These things are complicated and scary. It’s hard to want to learn about something that hurts to acknowledge. She was probably grateful to you for caring for her, even if you felt like you didn’t do your best, or didn’t understand what she was going through.

      I will do my best to make sure that my mom knows how I feel. Caring for her made our relationship much stronger, and we healed a lot of old wounds when she was facing when might have been the end. I know how lucky we are that she got another chance through her lung transplant. I just have to remember to keep our miracle in mind. One day at a time.

      Hugs,
      Christie

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