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Feeling scared and guilty.

Hi all,
My mom got an at home NIV machine a month ago and she uses it at night. The same day, she got new medicine (i can't remember the name). She has felt way better in this period, and has been able to do a little laundry with breaks, walk up the stairs better, make dinner and even take a break from her all day oxygen mask.
This Thursday, she was at the hospital for at check up regarding the new machine.
A month ago she was at 20% capacity, but surprisingly, she was now down to 14%.
I am aware that machines and medications can't heal and magically up the lung capacity, but it still puzzles me and i'm very scared of suddenly losing my mom.

The doctors told us that, as far as they could read from the data on the NIV, my mom has almost completely stopped breathing in her sleep, making the NIV breathe for her. Also, sometimes, she removes the NIV in her sleep. If her husband is awake, he puts it back on her. Her capacity goes up and down from 25% down to 14% and up again, how is this measured?

My mom is on a lot of medication for anxiety, panic attacks and strong back pain, which means she consumes a heavy cocktail of mental a physical relaxers (e. g. morphine) every day, plus her lung medication.

I think about this a lot and i am constantly afraid of her well being. I am in the middle of a nervous breakdown, my energy is at an absolute low and i feel terrible for not being with her at all times. My feelings vary from scared to sad to angry and extremely guilty. I'm not angry at her, i'm angry at the time we might be missing together. It's hard to turn these feelings around to something positive at the moment.
A very short backstory to these strong feelings of guilt might be, that for multiple unknown reasons, i got to know my mom at age 10, moved out at 17, now i'm 32 and i feel like we have had so little time together.

I know that there is no specific answer, but what do i make of this? How do i go about my day without breaking down and being scared all the time? How do you cope with these feelings? I am in therapy, but can only afford going once a month.

Sorry for the very long post, i am extremely frustrated with this knot in my chest. My studies have stalled, i'm unemployed and can't find the mindset to continue my career right now.

Happy new year and thanks in advance for any answers 😀

  1. Hello lomar, thank you for reaching out. I hear how overwhelmed and scared you feel watching your mom suffer. It is so hard being unable to be present 24-7 and knowing even if you were, you could not fix or control her many health concerns and symptoms. All the feelings you are having as a caregiver are valid and normal. It is a difficult situation to find yourself in at a relatively young age and with having missed parts of your childhood with her, it heightens all of those emotions. I thought this article might resonate with you: https://copd.net/caregiver/emotional-challenges/ You may also find some additional support from other articles in the caregiver archive: https://copd.net/caregiver/
    It is okay to feel what you feel. I'm glad you are meeting with a therapist once a month to help give you some support. It is important to care for yourself in the midst of all the turmoil. How best to manage and process the fear you feel is something that each person addresses uniquely. Some things that can be helpful are taking some deep breaths, going for a walk or getting some form of physical activity, writing in a journal, or reaching out to a trusted friend (to name a few!). These can all help to loosen the knot in your chest, if not permanently, at least for a period of time. It might also help to talk about these feelings with your mom. She may be struggling, but she is still your mom and likely still wants to know how you are doing and how her COPD is affecting you. She might be able to help lessen your feelings of guilt and anxiety over what is happening with her.
    It is important to know that there is no set period of time a person may live with COPD, even advanced COPD with severely diminished lung capacity. We have members of the community who have lived over a decade in stage 4, just at a much slower pace of life. How each person lives with COPD is unique as all bodies are different.
    As to your questions about your mom's NIV (BiPap?) machine, I am going to reach out to my colleagues on the team who are trained respiratory therapists who might be able to give you a more complete answer! So, hopefully you will have another response later on.
    Please know we are here for you as you struggle through this time and find how to navigate these feelings in the way that seems best for you. Wishing you a gentle day. ~Allyson (COPD.net team)

    1. Hi Janet, i'm sorry about the late reply. I really appreciate you guys checking up on me, the support system for COPD is pretty much non existent in my country, i'm really happy i found this site. I've even recommended it to my mom, but i think she's a little scared to take a good look around here.

      I'ts going better with me. I got married in February and started a new job in March, so i've been busy. It has helped me a great deal to get a routine back in my everyday life.

      I try to focus on the good, but of course, i still worry a lot. She is in the has been at the hospital for a few days now and it seems like she doesn't want to go home. Her oxygen saturation goes down fast, even when she sits still. It's very hard to witness, that even with all her machines, she still can't relax for a moment.

      Thank you so much for reaching out to me, it means a lot!

    2. Hi melaniem, thank you so much for reaching out to me.
      Please see my response to Janet above.

      It has been better, but i do feel as if i'm hitting a rough patch with this again. I don't really know how to handle this and how to feel, it seems like no one can tell me what's going on. I've been thinking that i was using my family for support, but really, i have been an unloading station for their worries, comforting and helping them calm down. And when it's done, i have no one left standing behind me.
      Of course i have my husband and my friends, but it's not quite the same.

      A nurse told my mom yesterday that she is very far along in the illness, all surgeries and further treatments are out of the question.
      It's very hard to kind of read between the lines, that her current treatment plan is to make her comfortable.
      I really do hope that she has years left, but unfortunately, she is not very good at taking care of herself.
      She has high anxiety, she hardly sleep or eat, and she lies in her bed for days.

      Again, thanks for reaching out! 😀

  2. lomar. Hi. Along with Allyson.Ellis's great response above, I thought I would chime in about the BiPAP. This is a really nice device that has shown to greatly benefit people living with COPD. BiPAP will make sure that your mom is taking a deep enough breath while sleeping to blow off a carbon dioxide while taking in enough oxygen to meet her body's needs. There is also a backup rate to make sure you mom continues to breathe if her body becomes too relaxed while sleeping. So, in that regard, it would appear as though the BiPAP is doing it's job, at least based on what you note. If you need more information about BiPAP, here is an article you might want to review (https://copd.net/living/bipap-live-better/). I cannot be sure exactly how the VC was obtained? Did your mom do a breathing test called a PFT? (https://copd.net/clinical/what-is-pulmonary-function-testing/) That would be a good way of determining that and other values of lung function. You may also benefit by talking with your mom's doctor or nurse. They would have access to your mother's information, of which we do not have access to. They should be able to help you best understand of how your mom is doing, and what would cause the VC to change. Does this help? John. Site Moderator.

    1. Hi lomar - I'm so sorry for how you're feeling and everything you're going through. Both Allyson and John supplied you with great information.
      It's so true that all the feelings you're experiencing are very normal. Don't be hard on yourself and know that you're doing the right thing by seeking therapy.
      I agree with Johns estimation that it sounds like your moms cpap is doing what it's supposed to. It's not uncommon that it come off while a person sleeps, but it's great that someone is there to put it back if needed. One thing that may help that is changing the head gear. There are usually a few different options for both mask and head gear, you simply need to ask the home care company. Each person is different and perhaps another one would better for your mom.
      I assume your mom had a PFT when in the doctors office and this is where the numbers for capacity came from. Keep in mind that those numbers may fluctuate some based on how a person is feeling at the time of the test. They generally are repeated on a fairly regular basis to get a more accurate picture. I wouldn't put too much stock in any one number until you see a pattern emerging. Even then, as Allyson already pointed out COPD is unique to each person and what a certain number means for one person may be different for another.
      Please let us know if we can help in any way.
      Lyn (site moderator)

      1. This is an interesting thread.

        1. Hi Prepcopd - We're happy to hear you're finding the thread interesting. Anything in particular that's struck your interest?

          Best,
          Lyn

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