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    • #30074
      Colleen Steele

      People facing the death of a loved one or their own is referred to as anticipatory grief. I have and continue to experience this as a caregiver but I have no doubt that PH patients also go through this as they consider their own mortality.

      I first heard it defined as anticipatory grief in an article from VeryWell Health and I discuss it a bit in my recent column, “How I Have Dealt With PH Mind Games”.

      Whether you are a caregiver or a patient, do you sometimes struggle with anticipatory grief? Let’s share and discuss this difficult topic.

      • This topic was modified 1 year, 4 months ago by Jen Cueva. Reason: link
    • #30078
      Carol Volckmann

      You just made me aware Colleen that I have been thinking more about my death. Anticipatory grief. I don’t fear my own death but I think I am grieving as new symptoms crop up and there is not much I can do about it.

      I know my husband is also going through this grieving. Thank you for opening the door. I do want to share this with him.

      • #30092
        Jen Cueva

        Hi @cdvol3gmail-com, I think it shows that you and Dick are humans as you worry and grieve. New symptoms popping up constantly makes it difficult not to anticipate grief or worry about our death.

        I know that Dick does because he loves you so much. I know Manny also struggles, especially each time I need to go to the hospital.

        Big hugs to you and Dick both, and thank him for loving and caring for you so much. Having amazing supportive spouses can help us through so much.

      • #30103
        Colleen Steele

        @cdvol3gmail-com if he doesn’t mind maybe you can share your husband’s thoughts about anticipatory grief. It’s interesting that so many people struggle with this yet it’s the first time I’ve heard of a name for it. For a long time I was experiencing this type of grief but it never occurred to me that is what I was feeling.

        the PH community tends to be a very compassionate lot. We worry about each other as much as we do ourselves. I think it causes us to hold back what we really need to be getting off our chests.

        whether it is anticipatory grief or grieving the actual death of someone, we all have different ways of dealing with it. I have a lot of respect for what you did, getting things in order the first year. I’m sure it wasn’t easy to do but I can appreciate how it eased your mind once you had it all prepared.

        Holiday’s are hard. Even though my son is doing well I still feel an ache in my heart worrying if this will be the year his health declines. It sounds like you have a healthy attitude though, even on days when you are struggling a bit.

        Thank you everyone for sharing your thoughts on this difficult topic.

    • #30091
      Jen Cueva

      Wow, @colleensteele, another powerful column! I love how you did this.

      As a PH patient, I, too often, feel like I cannot have good days when so many are having bad days. I struggled with this for years. I still do at times, but I have worked hard to remind myself that we are all different and our PH journeys are different.

      This is why I love the mantra that you added at the bottom, “Do not judge my story by the chapter you walked in on,” I – so very true with PH. I know transplant life and PH are different, but we all have our struggles on both sides.

      Excellent topic and vulnerability here. We must talk about the good and bad in our journeys, so others will know they are not alone. I am always here anytime you need to talk, cry, or whatever it may be. Thanks so much for all that you are and do.

    • #30097
      Jill Upshaw

      Thanks, Colleen. When I was first diagnosed,I really could not bear to tell those close to me. My first thoughts were for what I would leave behind. I am not afraid to die. I really am not. I don’t want to and certainly not now but it is reality. I spent the first year putting everything in order so I could get that off my mind. Since then, I just live one day at a time. Bad days could be shorter but I sure treasure the good days. I can’t help but think ahead, especially on holidays but I try to just live in the here and now.

      • #30136
        Jen Cueva

        Hi @upshtcx, is this because of your background in nursing, you think?

        I love that you have all taken care of and live in the here and now. We all should keep that mindset. I try always to find something positive in each new day.

        I admire this in you.

    • #30115
      Carol Volckmann

      Colleen, I don’t know where the term anticipatory grief came from, but you really brought to the table for all a powerful emotion.

      When I shared this emotion with my husband, Dick, he did not want to go there. The fact is that is what we feel when we openly see our own as well as seeing the other mortality. It isn’t fear a dying, it anticipating loosing the other. Dick is 82 I am 77 so the reality is feeling that grieving is ahead of us.

      About 20 years ago after loosing a very good friend and not wanting to be the person left behind we looked across the valley to the mountain ridge called Lucky Jim. Dick said when it’s time we take a bottle of rum, climb up there and jump off together. I thought about that and said, if we are able to climb up Lucky Jim, I think it’s too soon!

      As you say, when the birthdays come around, the holidays anniversaries in your mind you think, is the the last one – anticipating the loss, the grief. You cannot help it.

      But, by the same token it does make each day special, you’re more grateful for what you have and appreciate each and every moment ( or try to).

      I would rather have those emotions than dying suddenly without warning. I would not want Dick to go through that and I would not want to go through that.

      I know every day that goes by you treasure all the moments bad and good with Cullen and Jen with Manny.

      Sending lots of love and gentle 💕 hugs,

      • #30126
        Colleen Steele

        @cdvol3gmail-com you mentioned something I have often thought about…losing someone unexpectedly, especially a child. Losing someone to a disease is painful but to me, the unexpected is far worse. For example, years ago my cousin was killed in a motorcycle accident. The shock alone is horrific to experience.

      • #30137
        Jen Cueva

        Wow, @cdvol3gmail-com, your response brought tears to my eyes.

        Manny and I are a tad younger, but still, we think about these things. I think each new hospitalization brings a bit of anticipatory grief to Manny, more often than me.

        The words you speak about Lucky Jim and Dick’s plan are not unfamiliar in my book. It reminds me of a romance novel with a said but celebratory ending.

        Thinking about losing a close loved one is something many of us have experienced with PH. If not, during this pandemic.

      • #30143
        Jill Upshaw

        Definitely being a nurse for over 40 years plays in my attitude and outlook. I worked Peds, PICU and NICU for the most part. Lots of really sick kids. I always laughed, hummed, and sang at work to try and keep things as up as possible. That has also caused me to have a little warped sense of humor sometimes. Life is not meant for crying even though I have done my share.

        • #30147
          Jen Cueva

          Hi @upshtcx, I applaud you for working in those areas with pediatrics. That was my least favorite rotation. I was frustrated that so many little ones could not voice their pains, etc.

          I think as nurses, we all tend to have a warped sense of humor. LOL
          I worked in hospice care most of my nursing career. So, as you can imagine, I had many laughs but many tears, too.

    • #30117

      Righto now ,Whose coming up with these fancy names that makes me feel crappy , for 39 seconds anyway. I remember when I was diagnosed with prostate cancer and I rang the misses from the car park to tell her , we don’t go to doctors together and she laughed and said something to the effect ‘ your joking’ . Anyway I got all serious and prepared for my departure to the promised land . Sold our two cars and bought one she liked and found easy to drive , wrote down all my passwords etc. etc. Then I had the surgery and the doc. gave me a five year warranty .
      That was in 2013.
      My attitude now is if you reach a targeted age ,for me 70, anything beyond that is a privilege so take it in both hands . So no more long words I have to look up.
      You know stick to basics ,your a bit crook , your real crook , might cark it , no worries.
      Ha gotta tell you misses reckons if she goes first she is leaving it all to the three daughters as I might get a floozy and blow it all. As if.

      • #30127
        Colleen Steele

        @terry I can’t imagine how difficult it was for you to make that call to your wife. I’m sure she didn’t want to believe it. You HAD to be joking!

        Thinking about the years ahead as a privilege is something we should all consider. The humor you and your wife share reminds me so much of my dad. If I could listen to you and my dad bantering back and forth I would probably pass out laughing.

        When you mentioned passwords I laughed…it’s something we all think about these days. Before my husband left to get his Covid vaccination he told me where I can find passwords to everything, just in case he experience a serious reaction.

      • #30138
        Jen Cueva

        Oh no, @terry, I cannot even imagine that call to the misses. If I had that call from my hubby, I would think that he was joking, too. He is a bit of a jokester like yourself.

        I love your outlook on getting to a certain age and keeping things simple.

        When I was hospitalized with COVID, my poor hubby had no idea how to pay any bills. My iPad was locked out, but he finally got in and paid some. Now he pays the bills, so one positive of COVID.

        I hope that you and the misses enjoy a simple and enjoyable weekend.

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