• Hi all,

    Since my last post, on Feb 20th, my dad continued to rapidly progress – each day needing more and more oxygen. From 15 L to 20L; and then more than that. He couldn’t get to the bathroom to shower – so we started giving him sponge baths. We combined three 10L oxygen concentrators together along with a nonrebreather mask and it still wasn’t enough. I had wanted to admit him to the hospital for palliative care when he was at 10L but he kept fighting me on it; he was just too scared to go to the hospital. I had also called local paramedics who assured me that ambulances are equipped to give upto 25 L of high flow oxygen. So, getting him to the hospital would not be an issue.

    On Feb 25th he had another exacerbation while simply trying to sit up in bed. And I just had to call the ambulance and take him to the ER, at which point the doc explained to us that he would only live a few hours to 1 or 2 days. So, they had him transferred to the palliative care unit to make him more comfortable.

    He was placed on continuous IV hydromorphone and 50 L of oxgyen with a regulator/humidifier of some sort. And after a day or two he actually seemed to be doing okay. For about a week, he was able to eat, drink and talk well. He seemed quite alert and awake with minimal discomfort. We couldn’t believe it actually – he seemed to be better than he was the last 2 weeks at home, albeit totally bedridden; he also  survived past the date the ER doc gave us. But as each day goes by, he’s getting weaker and weaker still. I guess the morphine was simply covering up his pain and symptoms so well that he kind of felt good. But for the last few days, he’s started showing all the signs of coming to the end stage:

    • “death rattles” while he sleeps
    • delirium
    • low urine output
    • needing more and more morphine to control symptoms
    • sleeping for most of the day
    • no desire to eat or drink

    But even though it’s a very sad time for us, we’ve been grateful for the fact that we’ve all been able to spend as much time with him as possible, have our last words and memories with him, and ensure that he’s not suffering. All of our relatives and friends were able to video call with him and he was able to have his last words with everyone. And either myself or someone else from my family are with him 24/7 at the palliative care unit, so he never feels alone.

    The one thing I regret is that I couldn’t convince him to go on palliative care much sooner. I think he was suffering too much once he needed over 5L of oxygen because once he got past 5L, his situation literally deteriorated in a few short weeks to where he needed to be hospitalized. Morphine would have helped reduce his discomfort a lot during those few weeks. I would recommend anyone with PF to really consider palliative care sooner rather than later.

     

     

    • Vishal I am so sorry to hear this. Know that my heart is with you as you go through this time with your dad. I am glad that he is comfortable and that you are allowed to be there with him. It’s such a gift to not be alone at the end–for both of you. Take care, and let us know if you need anything.
      Chrsitie

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