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    • #18268
      Jenny Livingston

      Throughout the years, I’ve learned that I’m a better patient than I am a caregiver. Or at least, being the person providing care doesn’t come as naturally to me.

      My partner had neck surgery last week, and as he was all gowned up waiting to be wheeled into the operating room, I thought, “This is so weird.” I’m usually the one in the hospital bed. I’m the one who needs IVs and operations. I’m the one who’s spent so much time in the hospital that it feels like a second home. But to be the person worrying in the waiting room, picking up prescriptions and managing meds for someone else, providing care and comfort through their recovery… it just feels a bit unnatural to me.

      His surgery went very well. He’s resting and recovering as he should. I, on the other hand, feel exhausted both physically and emotionally. For me, it’s easier to be the person lying in a hospital than the one standing beside it worrying about a loved one.

      Have you experienced a role reversal like this? If you are generally the patient, how do you feel about assuming the role of caregiver? If you’re a caregiver, have you gained valuable caregiving insights from being a patient?

      Also, a quick shoutout to the CF parents and caregivers on the forum. Your job isn’t an easy one!

    • #18270
      Paul met Debbie

      Great question!

      Good to hear that Randy is doing well after surgery, Jenny. We wish you all the best. I am sure he is in good hands with you.

      What comes as naturally to us? Everything and nothing I would say. It depends on how familiar we get with it. So, I try not to entertain convictions about this, it is all very fluent in my experience. Convictions might only get in the way of the natural doing.

      It could be that pwcf are more used to being taken care of, than of taking care for others themselves. But it needs not be that way even by definition. We can take care about many things in many ways for many people. Since all is one, all that happens, is taking care of itself. These happenings need not be owned by anyone in particular.

      On a more mundane level, Debbie and I take care of each other constantly in one way or another. Roles are not an issue in that, so there is nothing to reverse in that on purpose. Things get done in the most natural way, how and by whom is not important and many times, not even noticed. We thank each other every day for all that has been done through us for us. We like to take care for ourselves and for each other, and for others as well.

      When one of us needs extra care because of health issues, the other jumps in naturally, as the one hand that caresses the other when in pain. It just happens by itself, no doing or owning involved. Psychologically, the mind might indeed find it more easy to feel the own body suffering, than to see the body of the loved one suffering. This I think is a matter of getting used to as well, and ultimately these kind of thought patterns are not be entertained at all, for in the end, they are egoïc  and have to do with being in control, disguised themselves as being empathic. Real natural empathy is non personal. It is like the sun shining for all flowers, not for one in particular. It couldn’t not. It’s effortless as well. The sun shines as easy on us, as it is shone on by other stars.

      Valuable insight I got in the many years of caring or being cared for: when being cared for, let the caregiver handle things in his/her own way and don’t try to help/interfere/direct. When taking care, try to envision how you would want to be taken care of yourself in that situation. In both situations: be very present and alert and look for small signs. When in doubt, communicate this doubt and ask for directions. Don’t presume, be clear. And in all other moments, kind stillness is most conducive. When caring, tread with care and make yourself invisible. When being cared for, be grateful and acknowledge the caretaker.

      In short: love and be loved, love and let love be.

      • #18275
        Jenny Livingston

        @jpaul I agree – being cared for is what I am more used to, but it turns out I am a great caregiver as well. I’ve always provided care and love to my daughter, my pets, other friends and family members. It’s what we do as humans. What is perhaps most strange is not being the caregiver in this situation, but seeing Randy in need of care in ways he generally isn’t. Thanks for your thoughts, insights, and well wishes!

    • #18271
      W. Hoh

      As the parent of a child with cystic fibrosis and autism, you are right. It can be exhausting being a caregiver. But it’s a very rewarding experience also.

      My wife is basically a saint, caring for my child throughout COVID-19 and caring for me after my spinal cord injury in the military.

      Now you  understand that caring for a loved one through an illness is not a burden. It’s something you freely want to do because you love the person who needs the help.

      Prayers for your husband’s full recovery.

      • #18274
        Jenny Livingston

        @drwill what you say is so true! I am happy to be there for Randy, to help and care for him in any way I can. It is not a burden or something I resent in any way. Yet, my entire life I have struggled with the belief that my care is burdensome to others… that I am a burden. Thank you so much for your words. They’ve certainly sparked something within me.

    • #18272
      Tim Blowfield

      Paul’s comment “love and be loved, love and let love be” is so true and appropriate. Being a caregiver is not easy but understanding love is a great help. Another Paul wrote a great passage on Love in his letter to the Corinthians (1Cor 13) – he concluded “the greatest of these is love”.  He talks about other gifts and abilities and says “If I …have not love, I am a resounding gong or clanging cymbal” “I gain nothing”.  Knowledge, ability, expertise and all other virtues are nothing and valueless without love.

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